The Staten's

'Heart Mom' Luncheon

2011-06-07T22:04:00.000-07:00

(http://connormylittlefrog.blogspot.com/)

On April 30, I was able to attend my first "Heart Mom Luncheon". It was so wonderful, and such a neat experience. Although Conner was born before last year's luncheon, I hadn't discovered Intermountain Healing Hearts (IHH) yet. If any of you know of someone who has a baby who has any kind of congenital heart defect (CHD) or a momma whose baby has been diagnosed in utero, please, in a gentle way, ask if they are aware of IHH (if they live in Utah or neighboring states) or if they have found a local support group. IHH has been so amazing to be a part of. I have been able to meet so many other momma's who know what it's like to have their baby go through open heart surgery, or heart procedures and who have that specific understanding and the knowledge to help support me as a mom learning more about the heart and medical information than anyone really wishes to know. Being a member of IHH has truly helped me to recognize the blessing that Conner is, and how "healthy" of a heart baby he is compared to so many others out there. It is a bittersweet event when we as heart mothers are able to gather together to go support another mother who has lost her baby due to CHD. It has been a wonderful outlet to share special times with women who are in the same boat as I am- women who have been there and are able to inspire, give hope, and help give comfort.

(http://brokenheartsmended.blogspot.com/)

The luncheon was so neat! We were able to take one guest with us- a woman in our lives who has been there for us along our heart journey and supported us. Naturally, I chose my mom to go with me. Everyone who attended got to have glitter toes done for free, so when we first showed up, it was the first thing we did! I chose gold and my mom got pink. Then we went and found a table to sit at. We sat with one of my heart mom friends that I had just met in person finally (I've been following her blog for a while) and she had her mom with her too. Cafe Rio catered the event, and it was so yummy! Just after we got our food and sat down, I noticed another heart mom who had just walked in that I hadn't met in person yet either (just through her blog) and I was so excited to see her! I invited her to come sit at our table and it was so fun to get to talk to these mom's and exchange stories in person! The president of IHH got up and gave a wonderful message of hope. She said to let hope fill our hearts and give us courage, and not fear. Then, we went around the entire room and each heart mom got to stand up, say our name, our child's name/age/heart defect, where we live, and who the guest was we brought and why. I think there were about 100+ or so heart moms, so it took a while, but it was incredible! It was seriously such a cool experience to be able to hear about so many other babies/children who have survived their heart journey's! And there were tears when mommas got up and talked about their 'angel' babies- heart babies who have passed on in this life because of their heart defects. I felt so inspired by them and what they have been through and how they continue to bless the lives of others by sharing their stories and helping us all to recognize our blessings a little more each day. The majority of the IHH group are moms who's children are fairly young because the group is only 3 or 4 years old I think. So it was so cool when one mom stood up and talked about her son who has a CHD, and talked about all his surgeries and what he has been through, and then announced that he was going to be leaving on an LDS mission in just a few weeks from then, and almost immediately, everyone in the room started clapping and cheering. This response happened because it is SO inspiring and feels you with SO much hope when you hear about teenagers/adults with CHD because quite frankly, so many of the surgeries that our saving our children now, didn't even exist 50 years ago! (some surgery's are only 10-20 yrs old!). Everyone in the room was just filled with joy in hearing about a 19yr old boy who is healthy and strong enough to go out and accomplish something such as a 2yr mission.

(http://blesselliesheart.blogspot.com/)

At the end of all the introductions, they showed us the little video they put together of the pictures we all sent in. We each sent in a picture of our heart baby post-op (a picture of them right after their heart procedures), a picture of them doing something they love, and a family picture. And of course they put our pictures to the neatest songs which fit perfectly, and OF COURSE we all bawled our eyes out as we watched our babies appear on the big projection screen. Sometimes, in a strange way, I forget that what is now so "normal" to me (open heart surgery, g-tube, NICU, hospitals, countless doctors, feeding therapy, occupational therapy, etc.) is not so "normal" to other people. And when I see my situation in a different perspective, it kind of jerks me and reminds me that what our little family has been through has been tough. I hope this doesn't come off sounding like "poor me, I've been through so much..." instead, what I'm trying to say is that sometimes I just realize that I've kept my emotions of stress, worry, and heart-ache bundled up and tucked away so that I can go through each day, needing to be a good momma and do the things that have to be done (i.e. If I want Conner to learn how to eat, I have no choice but to practice feeding with him several times a day, it's literally up to ME, it's MY job to teach this little person how to eat, and if I don't do it, no one else is going to, and he will be on a gtube for forever). When watching the video, Conner's post-op picture came up and I saw a little baby sedated, covered in tubes, in his mouth, nose, several in his chest leading to his heart, having just had a surgery to save his life... and for just a moment, I was able to capture what it felt like as a guest, looking in to a world unknown, and it broke me down and made me feel so vulnerable. It felt so different and foreign. It made me appreciate all over again how amazing Conner is and what he has been through. What we have been through as a family.

(http://www.youtube.com/watch?v=hztLRVUmgB4&feature=player_embedded)

After the video we all mingled, took pictures and said our temporary goodbyes. I was able to grab some pictures of some of my heart mom friends who were there. It was so wonderful seeing everyone and getting to meet new moms and feeling so inspired. IHH has been such a blessing to our family, and specifically to me as a mom. It has helped to give me more confidence in myself and what I can do to help Conner and be the best mom I can be for him. I'm so thankful to be a member of this wonderful organization and thankful for the neat experiences I have been able to have through them and the amazing mommas I have met!

(http://jakestephanieellinger.blogspot.com/)

The beautifully decorated room!

Videos for your viewing pleasure

2011-04-18T20:38:00.000-07:00

I don't think I have uploaded videos on here of Conner since he was a wee babe in the NICU. Well, here are a couple of videos for your viewing pleasure. Feel free to smile or laugh along. I think he's pretty stinkin cute, but I may or may not be biased. Make sure and pause the music on the right side of the blog, so you can listen to the videos.

Conner is enjoying his first time on this rocking dog (that sounds strange, but I guess that's what you call it???) It was mine from when I was his age!

All day Conner had been trying to put his new 'toy' in my mouth...I'm not sure why, but he REALLY wanted it in my mouth. I thought it was hilarious, and laughed all day long while he tried sticking it in my mouth, but I never actually let him put in it there. Well, daddy got home, so I though I would have Conner show him his new fun little game. Well, Conner finally got what he wanted, and daddy was such a good sport about it. I'm laughing like a big dork in the background, as in, I could hardly contain my laughter, so please excuse how weird I sound!

Conner thought it was the funniest thing to play in the curtains! It looks like he is laughing at Bella, our dog, but before she was ever in the room, he was laughing like this, over and over again! It was so cute...I don't know that he has ever laughed so hard at something so random.

Coincidence or Tender Mercy of the Lord?

2011-03-27T22:44:00.000-07:00

I believe that Heavenly Father blesses each of us with his tender mercies and miracles everyday. Whether or not we recognize them as such, or identify them as coincidences or fate, they indeed remain a blessing to all participants. I had the wonderful fortune of experiencing what I truly believe to be a sweet and simple testimony that God is aware of us all, and that He sends people into our lives, if only for a brief moment, to bear us up and brighten our day.

On February 14th I decided to go to the mall to find a cute shirt for the evening, which was of course, Valentines Day, but specifically for a concert that we would be attending. I love going to the mall and browsing the stores, seeing people, seeing different styles, and just getting out and being social (yes, I'm the ~~creeper~~ social butterfly who will talk to you in line, or ask you about who cuts your hair, etc). I was in Sephora, looking around and picking out some makeup when I noticed one of the cutest girls ever. Her entire outfit was darling, her hair was amazing, and she just had a glow of 'niceness' to her. I love seeing people like that! I continued to shop, and look around at makeup. I was debating whether or not to buy the 2 items of makeup in my hand. They were kind of expensive, and I wasn't sure that I needed them. I decided to buy them anyway. I went to get in line when to my dismay, it was really long and looked like it was moving slow. I literally turned around to set my stuff on the shelf so I could leave, when for some reason I felt like I should get back in line. So I did. I waited for it to finally be my turn. I also had Conner with me in the stroller, which was another reason I was about to leave, because the stroller was a little annoying to weave through the line. While in line, the cute girl I had noticed earlier, was waiting near the check out line for her mom who was making a return. It was finally my turn to check out, so I bought my makeup, and noticed the girls mom next to me with another cashier. I had to pass her to leave, and as I was maneuvering with the stroller behind her, her daughter, the girl with the cute outfit, was standing right there as I turned to go out. As I started to pass her, she stopped me and gave me the sweetest compliments about my own outfit and how she thought Conner's stroller/car seat cover were cute too. I immediately told her that I, in fact, had been adoring HER outfit, shoes, hair, etc, and was so flattered that she liked MY style! As I walked out of the store I felt so great that a high school girl as stylish as she was, had complimented me and liked what I was wearing! I continued to shop around, and saw her again in another store, and we exchanged smiles. I left the mall a short while later to go home and get ready for the night.

The concert that we attended that evening was the Paul Cardall benefit concert that he holds every year to raise funds for his foundation for Congenital Heart Defects. Paul Cardall is the beneficiary of a heart transplant, (he received this blessing about a year ago) and is a wonderful and talented musician. At the concert, he performed all of the songs from his new CD that just got released. Just before the intermission of the concert, Paul Cardall brought onto the stage two different high schools study body government officers. When the Brighton High study body officers had walked onto stage, they were all boys except for one girl. To myself, I thought "man, she has great hair!". Each high school had taken on the project of doing fundraisers for his foundation. They each explained all the different fundraisers they had done and all the fun things they did to raise money. It was amazing how much money they each raised! Each school had raised about $15,000 to donate!! There was an intermission during the concert, so Paul (my hubby, not Paul Cardall!) and I went out in the foyer of the high school to mingle and look at the auction table. I really wanted to find some of my heart mom friends, to say hi. I also wanted to find one of the student body officers to personally tell them thank you for what an amazing thing they had done with raising funds, and how much I appreciated the awareness they put out there about Congenital Heart Defects. As I was walking around, I turned and noticed out of the corner of my eye, who I thought was the same mom from the mall...it was her for sure, and so I darted my eyes around to see if her daughter was with her! Just a few short feet from the mom was the girl with great hair, who was one of the student body officers...I walked up to her, tapped her shoulder, and INDEED, it was the same girl from the mall who I had met just hours before! I couldn't believe that the SBO (Student Body Officer) girl was the same girl I met at the mall! We laughed about how crazy the coincidence was that we had first met at the mall, and now were meeting up again at a concert that we both happened to attend!

Since I had wanted to say thank you to one of the SBO's, this was the perfect opportunity! I proceeded to tell Natalie (the cute girl) and her family, and another SBO that was standing there, how thankful I was for their fundraising efforts. Tears came to my eyes as I told them that I had a 'heart baby' and truly felt so much gratitude for all their hard work. I explained about Conner's heart defect and our journey with him. I felt so connected and interlinked with these sweet people whom I had just met. You know that feeling that you feel deep inside every so often when you connect with someone, despite differences, background, race or religion? ...When you feel the spirit of humanity and it makes your heart feel so tender, and you just feel peace and satisfaction, and that we are all brothers and sisters living on this earth to help one another? That is how I felt. Natalie's mom pulled out her camera and took a picture of Natalie and I together (the picture included in this post). I gave them my information so I could get the picture, and also my blog address so they could see Conner's story here. We hugged and laughed and said thank you to each other.

Seriously, how cool is this experience? Even now that a month and a half has passed since that day, I still marvel at that wonderful opportunity. This is when I think about how it was such a coincidence that when I turned to put my makeup away and leave because the line was too long, how instead I just 'felt' like I should get back in line. And I realize that perhaps while describing it as a coincidence, that it was indeed the quiet, delicate whisperings of the Holy Ghost that urged me to stay in the store, so that our meeting could take place, that I could once again see her, and know her at the concert, amidst hundreds of people who attended. Some people may call it coincidence, but I call it a tender mercy of the Lord.

Got Milk?

2011-02-17T16:19:00.000-08:00

My once beautifully stocked freezer of breast milk...oh how I miss thee!

This may sound like a very strange question to ask to some people (and believe me, it seemed really weird to me the first time I heard about it as well), but I'm going to ask anyway, because it's for Conner. I am wondering if anyone out there, you, or someone you know, is pumping and is pumping extra breast milk that they don't need. Here's the situation...I just barely ran out of my frozen breast milk and last night was Conner's first night on straight formula (I was mixing half formula and half bm to make it last longer). He didn't sleep well, and threw up a few times through the night. When I had become pregnant, my supply went down, and soon I was only pumping 1 time a day. I still pump once a day, during the morning, but only get about 2oz, but I feel like a tiny bit of fresh breast milk is better than nothing! I would really love for Conner to be able to get breast milk because as we all know, it's so much better for babies, and especially for Conner in his (medical) situation! If you know of someone, would you PLEASE pass along my blog info, and they can get in contact with me (or if you know my phone number, you could pass that along). Like I said, it may seem strange to ask for someone else's breast milk, but if they are healthy and willing, I would LOVE to get some!

Did you know that humans are the only mammal who drink another mammal's milk and continue to drink milk into adulthood? Intersting, eh?

When life hands you a miscarriage

2011-01-16T23:03:00.000-08:00

Where do you start when writing a post about miscarriage? I guess I will start by saying that I remember hearing the term several different times growing up. I remember hearing people talk about it and I knew what it was. I remember in my young, ignorant mind, thinking that somehow it didn't seem like a big deal because I had heard about it so much. It just seemed like a nonchalant thing. And it certainly never crossed my mind that it would be something that I would ever experience- it was one of those things that only other people would. Not me. Well, little did I know.

Paul and I had been married for about 1 1/2 years when we decided it was time to start trying for a family. Infertility was also one of those things that only happened to other people. Not me. Again, little did I know. We started trying for a baby. That first month I was so giddy and nervous to find out if I was pregnant. My period came. Another month went by, and another and another. A year went by. A year and a half went by. I went through the roller coaster of emotions that I'm sure so many women understand. Sadness. Bitterness. Anger. And then back to sadness. And then I finally found a state of calmness that I just knew that it would happen when the time was right. We visited a fertility specialist. We were about to start clomid and artificial insemination when after 19 months of trying, that positive pregnancy test appeared. We cried and cried with joy and relief. We were so thankful to Heavenly Father that we were finally pregnant! At 6 weeks, 4 days I started spotting. Even then, it didn't even cross my mind that anything could be wrong. At 6 weeks, 5 days, while working, I went to the bathroom and bled. I knew that it was way to much blood. I knew in those moments that I had had a miscarriage. I cried. I called Paul. I called my doctor. I went and had my blood drawn a few times and they confirmed that I was no longer pregnant. We cried and mourned the loss of the pregnancy that we had celebrated so dearly. We hadn't announced to anyone yet that we were pregnant. And after the miscarriage I didn't feel like going around announcing the sad news. So no one knew but ourselves. And it was really hard.

Three months later we were able to conceive again. We prayed with the most sincere hearts that I would be able to carry out the pregnancy full term. We literally prayed every single night we would have a healthy baby, if it was the will of Heavenly Father. Just over 8 months later, we had the most beautiful baby boy. He was perfect in every way, with an imperfect heart. But he was alive, and perfect to us anyway.

After Conner was born I went on birth control. I felt strange about it. I didn't really want to, but I started it anyway. After a few months Paul and I talked and decided that I would stop birth control. I had been having feelings that I should stop birth control. I felt that although we might not ever feel totally ready to bring a second baby into the world, that Heavenly Father was in control, and he knew what we could handle, and would send us a baby when He knew the time was right. After all, it took us 2 years to get pregnant with our precious Conner, and it could take a while again. I got off bc in July and decided that we wouldn't put pressure on the situation. We wouldn't be actively trying to get pregnant, nor would we stop it. In November this past year, I waited for my period to start. I had a dream that an old man told me I was pregnant. I started to gag when I brushed my teeth (a pregnancy symptom for me) and I had a huge, constant battle in my head for 3 days while I waited for my period. "You're pregnant. No I'm not. Yes you are. Maybe I am. I think I am. No I'm not." I couldn't take it anymore, and on that 4th morning, after Paul left for work, I ran to the store with Conner and bought a pregnancy test. It was positive. I cried with happiness. Paul and I were so thrilled to be expecting a second, tiny, beautiful baby into our family! We again started praying that we would have a healthy baby, be it the will of Heavenly Father, and that all would be well with the pregnancy.

I became sick just like with Conner. As week 6 and 7 went by I nervously prayed that there wouldn't be a miscarriage. Week 8, 9, and 10 went by. Then 11 and 12. After the 12th week of pregnancy the likely-hood of a miscarriage dramatically drops. At 12 weeks, 5 days, I went in for my 12 week check up. Just a few hours before my appointment, I went to the bathroom and there was the tiniest specks of blood on the toilet paper. It made me worried. I went into the appointment and told the nurse who took my blood pressure and weight. When my doctor came in, he asked me about the blood. He immediately did an ultra sound. As I laid there, I waited for my doctor to say something. He just kept moving the wand around on my tummy, searching for that ever important heart beat. He then had me look at the ultra sound machine screen, and explained what he was looking at. I could see the baby. I couldn't see a heartbeat. Neither could he. He told me that he was going to have me move rooms so that he could use their new machine to see things better and more clear. I waited in the room. Conner was with me. He was getting impatient because I had left him in his car seat. I tried to entertain him. I pulled faces at him and played peek-a-boo. Several different times during my attempts to entertain him, I caught myself tearing up with the thought that there really may not be a heartbeat, but refused to let myself dwell on it, since nothing was confirmed yet. I was finally moved to the other room. They had one of the other doctors come in and do the actual ultra sound. My doctor was in the room to look at the ultra sound as well. They talked about where the heart activity should be. Then after a looking around for a minute or so, they both confirmed that there was no longer a heartbeat. My doctor put his hand on my shoulder as I lay there, and told me how sorry he was, and it was indeed a miscarry. Tears rolled down my cheeks, but I tried to stay strong as they took measurements to try and figure out how far along I was when I miscarried. It was hard to hear the other doctor say that he could tell the little body had already started to collapse, and yet it was still pretty recently that the miscarriage happened. It was determined by measurements that the miscarry happened at some point during the last week. The doctor cleaned my tummy off, and helped me sit up. He left the room, and I was left with my doctor. We sat down to talk. My eyes filled with tears as he sat across from me, with sadness in his eyes as he asked what questions I may have. We talked. He told me that he was heartbroken to have to deliver such sad news, especially after all we have been through in the past year with Conner. He explained about the D&C and said that we would do it the coming Friday, the day I would have been 13 weeks. When my doctor finally left the room, I started gathering my things, and that's when the sobs came. I tried to hold them back. I could feel the aching in my heart bursting and all I wanted to do was be at home in the arms of Paul. I left the office and drove home. The whole way home I cried. I cried as I thought about telling Paul. I cried as I thought about telling our families, whom we had announced our joyful news to on Christmas Eve and Christmas day. I thought of our friends faces who were so happy for us. I thought of everyones faces who had expressed excitement, love and support for us. And then I thought of having to tell them. We didn't have a heartbeat anymore. We are not going to have a baby in July anymore. No more siblings 18 months apart.

Paul was aware of the blood incident before I went to my appointment. When I left the house for my appointment, Paul was at home with a friend putting in a new disposal. When I was leaving the hospital, I texted Paul and asked if he was still home, and if the friend was still there. Paul told me later that he just knew that something wasn't right when I had sent that message. I got home, walked in, and was in the process of taking Conner out of the car seat, when Paul came down the stairs. I, of course, was crying, and he came over, wrapped his arms around me, and I sobbed as I buried my head into his chest. He got Conner out of the car seat and let him go play with his toys in the room we were in. We sat down on the couch and talked about the appointment. Talked about how there was no heart beat. Talked about the ultra sound and the measurements. We cried. We sat in silence and then cried again. We watched our sweet little boy, playing with his toys, babbling and having fun. He had no clue. He was so innocent and sweet. He made us smile.

On Friday I went in to the hospital at 11:30am. I was scheduled for 12pm. We (Paul and I) were taken into a curtained room where I changed into a gown and got in the hospital bed. I hadn't eaten or had anything to drink since midnight, per doctor's orders. They let me know that I wouldn't be going in at the scheduled time because there was still another patient ahead of me. So we watched a movie and entertained ourselves. I had my I.V. started a few hours later. I was given medicine to soften my cervix. I became anxious about the procedure. Paul was wonderful and reassuring. He told me everything would be ok. My doctor came in and talked with us and answered questions and gave us comfort. They took me back at about 3:45pm. When they wheeled me into the operating room, the male nurse who had been helping us prepare during the afternoon, put a mask over my mouth and nose and told me to breath deeply and that it would put me to sleep. Tears rolled down my cheeks as I tried to breath evenly, not allowing my tears to turn into sobs.

The next thing I knew I was slowly blinking my eyes to wake up. I felt like I was waking up from a wonderful afternoon nap. The kind that you just feel so relaxed, so calm, and so comfortable. And then I slowly remembered where I was, what had happened, and what I had lost. The nurse watching over me took out the breathing tube from my throat and asked me if I was ok. She asked if I was in physical pain, and I gently shook my head no. No physical pain. And then tears started to form and roll down my cheeks. Moments later my doctor came to my side and asked if I was in pain. Again, I gently shook my head. But my tears wouldn't stop. I was still coming out of the anesthesia, so it was all a little blurry and hard to remember. But I remember his caring face and worried expression. He told me that he would go let Paul know I was awake and that he would meet me in the next recovery room. When he talked to Paul, he let him know that emotionally I was in a lot of pain. When they wheeled me back into the curtained room, I was in there for just a few minutes by myself where I continued to cry. When Paul walked in he came straight to my bed, held me and let me once again sob and release all the hurt I felt. I cried for 10 minutes straight as Paul continued to comfort me.

In the following 24 hours, I thought about what it was exactly that was so emotionally painful after I had woken up after the procedure. What was so different about it then just knowing I had had a miscarriage? I have concluded this: For the two days that I was aware of my miscarriage, I knew that I was carrying with me a little tiny forming baby who had passed away. The miscarry was with me physically. I mourned the loss of a baby and I had the physical reminder of that in my tummy. I would touch my tummy, knowing that there was no heartbeat and feeling the sadness of that. When I woke up after the D&C, I mourned the loss that physically wasn't there anymore. I mourned the fact of the finality of the miscarry. I so dearly mourned the emptiness and loneliness I felt from the miscarry being removed from my body. It made it so clearly permanent. Paul and I talked for a while. We laughed and we cried. We finally left the hospital at 7pm.

The next day we kept ourselves mindlessly busy with time consuming things. Facebook, email, computer games, cleaning, etc. Nothing too important. But enough to make us feel a little numb. Numb enough to not think too much on the previous day. To not have to think about the email that I didn't get from babycenter the previous day, happily announcing my 13th week of pregnancy. I had the smarts enough to cancel it before I would receive it. Later that evening, my sister brought over dinner. We were so thankful for that act of service of love. When she left, we walked into the kitchen to bless the food so we could eat. I started to say the blessing and couldn't finish because I started crying. Paul finished the prayer while he held me. We talked about how easy it was to numb ourselves from having to think about the miscarriage. And when my sister came by, it pulled us back into reality and reminded us of why she was bringing dinner. We are still hurting from this miscarriage, yet we truly know that Heavenly Father has his reasons for why things happen. We do not doubt that all will work out for the best, and we continue to hope for when we will be able to bring the next baby into our family. We really do believe that everything has a purpose and that we are being shaped and molded into the people God needs us to be. Heavenly Father teaches us in many ways. He knows how to help us become more humble, more Christ-like, and more teachable. When we experience sorrow in our lives, it teaches us how to be more charitable towards others and allows us to feel empathy and compassion. How wise and just Heavenly Father is. How tender he is that he lets us all experience joy and happiness while also teaching us with trials and hard times. We continue to thank Him for all that we have, for our beautiful and wonderful baby Conner, and for each other. What an amazing life we 3 have with each other.

2010 The Challenges and Blessings and Pictures!

2010-12-31T13:38:00.000-08:00

I honestly cannot believe that this year is gone. So much has happened that makes it feel like it went by twice as fast as usual (and somehow also twice as long!). Our little family has experienced...so much...(enter big sigh here) and it has been the most challenging, yet most blessed year that both Paul and I have ever had. We have learned that life certainly has it's surprises, but somehow everything has a purpose, and we absolutely believe that Heavenly Father is all-knowing, and is keeping us under his loving wing.

To recap Conner in 2010:

-Before Conner was born, we did NOT know of his congenital heart defect (CHD), Tetralogy of Fallot (ToF)
-Conner was born 3 weeks early and was admitted to the NICU for having a difficult time breathing
-At some point in the next 36 hours (it's all a jumbled blur to us) we are notified that they believe Conner has a CHD and is taken to Primary Childrens Medical Center by Life Flight ground (driven), where his CHD is confirmed
-Conner spends the next 2 1/2 months in the NICU at PCMC
-We are finally able to bring Conner home on an NJ feeding tube (feeding tube in his nose, which feeds his intestines, not his tummy) at the end of April. A very joyful (and nerve wracking, overwhelming, and stressful) time
-Conner throws up anywhere from 5-25 times a day due to his severe acid reflux
-Conner's open heart surgery is scheduled and then rescheduled 3 times
-Conner gets his baby blessing by Paul and close family members at our home May 30th
-Conner undergoes open heart surgery to repair his ToF on June 22nd. The surgery lasts about 7 hours and is very successful. Conner stays in the hospital recovering for 2 weeks, and then is able to come home
-Conner finally passes is swallow study in July and they move his NJ feeding tube to an NG feeding tube, his tummy finally being able to get fed
-Conner has occupational therapy and feeding therapy each twice a month
-Conner undergoes surgery October 8th to have his g-tube placed (and also finally his circumcision). He is only in the hospital for 3 days this time before we are able to go home
-Conner has a cardiology check up in November which shows his pulmonary valve is leaking, which is fairly normal, but it's leaking more than they would like. The cardiologist says that Conner will need (most likely) to have his entire valve replaced, via another open heart sugery, in a few years. This means Conner will have some type of surgery or procedures done the rest of his life to replace/fix/upkeep his valve
-Conner is making significant progress in the eating department. We practice feeding him baby food twice a day, work on drinking with a special cup twice a day, and get him involved in food play as much as possible. Conner got his two little teeth on the bottom, and will munch on graham crackers and bread! This is a big deal! The feeding therapist thinks it will still be about a year before he is eating everything on his own, and we are able to remove his gtube.
-I am still pumping breast milk for Conner and also using frozen breast milk as well. We mix the bm with a special allergy-free formula to feed Conner
-Conner is 10 1/2 months old and is doing fantastic. Considering he has spent 3 months (collectively) in the hospital (nearly 1/4 of his life!) and has been through open heart surgery, he has overcome his development delays and is now exactly where he should be! He rolls over, crawls, pulls to stand, walks on furniture, jabbers constantly, and is one incredible little boy!!

To recap Annie and Paul in 2010:

-Paul started a new exciting job in Internet Marketing in July. He loves his new job and is amazing at it!
-Paul's company, Computer Fix, has been doing really well, and is ever-growing. He has big plans for the company for 2011, and is excited to see where it will take it!
-I gave birth in February to Conner. He is the 12th grandchild on both sides of the family
-I was blessed with an over-abundance of producing breast milk, which resulted in me being able to share my milk with 3 other babies. I had the huge blessing of being able to provide breast milk to a baby who was born addicted to meth (and was adopted by an amazing woman) for about 6 months. I sincerely believe this resulted in blessings for Conner, Paul and I that were much needed during our most challenging times.
-We both enjoy being a part of an amazing dinner group who meets once a month and does fun, unique, exciting, relaxing, and wonderful dinners/activities.
-We got to go to Sun Valley for the first time with our wonderful friends at their cabin. First family vaca!
-Paul is still the Ward Clerk in our ward and I am still the 1st counselor in young womens, and I love it!
-I started reading the Book of Mormon in August as part of the new Bishopbric challenge for the youth in our ward
-We sadly sold our wave runners to help pay for medical bills (with Paul switching jobs, we had to meet/max a new insurance plan)
-We both learned more about patience, love and sacrifice in the first few months after Conner was born, than we have our whole lives. We learned of the deep love of others, selflessness, and experienced prayers and fasting on behalf of our family. When I think about those first few months of Conner's life in the hospital, and the first months of him being home and his heart surgery, I feel overwhelmed with the memories and it always brings tears to my eyes.
-We continue to love our home and our neighborhood. We have an incredible ward, and wonderful friends

Here are pictures to also recap this year. I am sorry...I don't know how to use photoshop to make collages or anything like that...yet. I'm hoping to learn soon! So instead for now, you get a million pictures! Lucky you! I have tried to include pictures that I haven't ever included on my blog, or FB. There are a couple that show Conner the day of his heart surgery, and are sacred to us. I included them because I think they can portray a powerful message about what Conner has been through, and his strength.

8 months pregnant, almost there!

Day after Conner was born (not yet at PCMC)

Skin-to-skin time with momma

First full bath

Snuggle time with dad

Our sweet, wonderful nurse

Last day in the hospital

Our overnight in the hospital to 'practice' with Conner

Going home!

Blessing outfit

My friend made this awesome cake for his blessing day

Hanging out with Aunt Sheryl and cousin Jaden!

Getting out and about

Daddy taking care of Conner with the moby and multi-tasking

Conner's chest pre-surgery

Getting prepped for open heart surgery

Hours after open heart surgery

Resting

An angel our friends gave us whose baby also had the same CHD repair. We passed it onto this beautiful, precious baby girl, who also had ToF and other heart problems.

Leaving the hospital after 2 weeks recovery

Nap time with Grandpa

Conner giving a thumbs up, all is well!

The heart walk in September for Intermountain Healing Hearts group we are a part of

First family vacation in Sun Valley

Getting ready for gtube surgery

Recovering from gtube surgery with a big sock on his hand so Conner wouldn't pull out his i.v. out

"Rock Band" family for Halloween

Meeting Santa for the first time

At Temple Square to see the lights

Conner's first Christmas

Family's first Christmas together

Happy, loving, adventurous Conner!

Computer blog!

2010-12-15T14:19:00.000-08:00

My amazing and talented husband created "Computer Fix SLC" several years ago, and just started a blog for the company! They will post about computer tips and other really helpful things for all of us who may not be computer genius's! So follow them and become more computer-wise!

Computer Fix is an amazing company, with honest, hard working, super friendly employees, with unbeatable prices on repairs, removing virus's, building custom computers, and whatever else you need!

Seriously guys, this is where I would take my computer in a heart beat if something were ever wrong with my computer! So, pass along the word, and write down this number if you ever have any kind of computer questions or problems!
Their number is 801-415-9595 and they are located at 2875 South Main St (SLC UT)

p.s. My husband didn't ask me to write this! In fact, he has no idea, and will have no idea until he logs on to our blog! :) I just REALLY truly believe he has created an amazing company, and deserves some recognition!

Star-Struck

2010-11-11T14:48:00.000-08:00

While shopping at Costco today (well I was actually done with my shopping and searching for my lost car key!), I walked past one of my favorite fashion bloggers! She passed, and I was pretty sure I recognized her, so I followed her a couple of steps, tapped her shoulder, and with a cheesy smile, told her that I was one of her ~~stalkerish~~ blog followers! I have to admit, I kind of felt a little star-struck and could totally feel myself blushing. I just think she is so amazing, and has such a fantastic sense of fashion. Her name is Sarah, and you can see your wonderful blog here. And she was so sweet!! And of course she was dressed so amazingly, and I, sadly, not so amazingly. I wished so dearly in that moment that I had been wearing something totally awesome to impress her, and that my hair had not looked so nasty and that I had put on some more makeup. Oh well. That's what I get for thinking I was just making a quick trip to the store, and that I looked fine enough. At least I had on my cute bright blue scarf that I got while I was in Paris, right? :)

Lately I have really been trying to discover what my fashion sense is, and what it says about me. I really, REALLY love the fashion blogs that I follow (see list of blogs on right side of screen), and they inspire me so much. I just think that fashion is such a great way to express who you are through clothes and accessories and I really enjoy it! One thing that I really admire about Sarah, is that she doesn't spend tons and tons of money on her clothes. In fact, the majority of her clothes, shoes and accessories come from thrifting, consignment stores, are vintage, or are from local auctioneers. How awesome is she?! And she looks incredible all of the time! I have always been really good with purchasing clothes that are on sale/clearance, but now I really want to start thrift shopping!

I have been having Paul taking outfits pictures for the last few months that I have though have been fairly fashion worthy. A few problems though. They are taken with an ok, but no where near great camera like most of the fashion bloggers that I follow have, my house only has only a few walls to take pictures against and are boring white, and my dear sweet husband, love him, but he just holds up the camera and snaps the pictures while I feel like a huge cheeseball trying to pose, but coming up flat every time. No beautiful outdoor pictures with perfect lighting for me. But I will continue to have him take my pics, and one day when I am feeling courageous, I may post them, and share my journey in fashion-self-discovery.

Extra Energy!

2010-11-09T11:05:00.000-08:00

This is one of the many things Conner is now happily doing with all his new found energy and zest for life without the feeding tube in his nose! :)

Picture overload! or maybe just 10 of them...

2010-11-02T20:26:00.001-07:00

Conner enjoying his time in his walker. He can walk backwards in it. Smarty pants.

On Halloween day we dressed Conner up in this cute lion costume so he would be warm outside while we trick-or-treated the ~~entire~~ ~~neighborhood~~ 2 houses.

We are working with Conner on sitting. He is kind of getting the idea...kind of... (this is one of those pics where they stay that way for 2 seconds and then do a face plant...into the pillow that is!)

We were a Rock Band family for Halloween. Conner looked so stinkin cute in his little bandanna, I loved it!

Conner in his new favorite place...the bouncer! He loves to jump in this thing, especially when the music is going!

Momma and Conner's "Fall" outfits

Don't quite know how the arm-out-of-the-sleeve thing happened, but he sure has a cute smile for me waking up the first morning home from the hospital!

While in the hospital, we had to cover his hand that had an i.v. on it with a sock so that he wouldn't pull out the i.v. like he did last time after his heart surgery! He didn't mind it at all, in fact, is was a really convenient 'toy' to chew on! (as you can see from the wet spot on it!)

Look at that sweet 80's top! Just had to share a pic of it! This was his pre-surgery attire that they gave us to put him in. Seriously, that thing has got to be from forever ago!

Double chin? Yes please! Love me some double chinners!

Happy Conner!

2010-11-02T10:25:00.001-07:00

Since Conner had his gtube placed (October 13th), he has been SO.much.happier!! I knew that he would be more comfortable without the feeding tube in his nose and down his throat, but I didn't expect this kind of change. Conner has always had such a sweet, calm, easy-going personality. And he has always been smiley at home for Paul and I. But now, Conner is happy ALL of the time! (of course with the exception of when he is really tired, is throwing up, etc). I can't believe how much more energy he seems to have! I honestly feel like because of the change, and with his newfound energy and being so happy all of the time, he has literally propelled forward socially, emotionally, physically, and developmentally. Conner is always smiling now. And he is even smiling at people at church and in the store! Previously it would be rare that someone could get him to smile that wasn't momma or daddy (or some close family members). But now lots more people get to experience his adorable smile!

Before Conner had his gtube placed, he was learning to scoot around on his tummy, i.e., the army crawl. We were a little worried about his because his gtube would be placed just to the left and up a tiny bit, from his belly button. We could only imagine him sliding across the floor on his tummy and the gtube being pulled out, or yanked, etc. We were also worried that the initial discomfort of the gtube would make it so that he didn't want to be on his tummy at all, and we would developmentally move backwards. Thankfully, neither scenario has happened. Conner loves to be on his tummy, and always has. In fact, when they were wheeling him in this crib from just waking up from anesthesia up to the recovery room, he flipped over onto his tummy before the nurse could stop him! Little stinker just loves to be on his tummy! (we had to keep him off his tummy for the first 3 days...yes it was hard!) After we got back home from the hospital (his surgery was on a Wed and we left Friday), Conner was able to move as he pleased, with still being careful of course. Instead of doing his tummy scoot, he discovered a different way to maneuver. He would get up on hands and knees, and then thrust himself forward, landing on his side, this way avoiding this gtube area. Smart little Conner! In just less than 3 weeks since his tummy surgery, Conner is now officially crawling! I hardly know what to do with myself. I'm paranoid about all the teeny tiny little things I have to make sure are not on the ground anymore! Yesterday while I was pumping, he even crawled out of his little "playground" thing that has 4 walls (kinda bendable) that are about 9 inches (???) tall! Now I don't know how to keep him contained while I pump! :)

Conner is talking so much! Well, babbling and cooing and yelling that is! He is so much louder now! I think his throat just feels like it had a makeover, and he wants the world to know! I heard him say "mammamamamadaaaaadaaaaahhhhhhhhhh" the other day! It was so cute!

It was been so wonderful to see all the changes in Conner and how well he is doing. We went from him throwing up (a mix of spitting up and/or what would be considered actual throwing up) anywhere from 5-30 times a day, to him throwing up only 2-3 times a day, or less.

The past week Paul and I have been thinking about when we want to move Conner into his crib, into his own room. He has always had to sleep in our room (just in his pack n play) because of his reflux, throwing up, feeding tube, needing suctioning, heart monitors, etc. But now is getting tio the point that he seems to be ready, and we are thinking it may be about time! Part of me is excited to finally get to use his room and his crib, and his bedding and have him be a big boy. But the other part of me is kind of sad to see him leave our room. One of the things that I have really loved in the mornings is hearing him wake up and then looking over at his pack n play, to see him peering over the side, staring at me! I.love.it! It makes Paul and I laugh when he does this, because he is propped up on his arms, and stretching his head up as far as he can, with eyebrows raised, straining to see us in bed! Silly silly boy! I need to catch him doing this on camera so I can have the memory captured in a photo. I also love hearing him breath, move around to get comfy, and make funny sounds as he sleeps. We will probably move him in into his crib within the next few weeks when we feel good about it.

We have been so happy with all the positive changes we have seen in Conner. He is tolerating his 'practice' feeds much better and doesn't throw up every time he swallows a tiny bit of baby food. We do 2 practice feeds of baby food a day, and 2 practice feeds with a bottle, with a special nipple called a pigeon nipple that makes sucking the milk out easier. I feel confident that Conner is improving, even though it is a very slow process of teaching him how to eat. His feeding therapist gave a general statement that he will probably have his gtube for about a year. Which means it may take Conner that long how to learn how to eat all of his food by mouth. Or it could be less time. Or it could be more time. There are no guarantees. We just take the feeding issues day by day and hope for the best! He has an amazing feeding therapist and we love her. She helps me so much with little tips and advice for how to make his feeding practices a positive experience so that he will make progress and understand that food in his mouth is a good thing! :)

Conner did not end up needing/getting a nissen done (basically a wrap of his stomach around his esophagus that would prevent throwing up the rest of his life) because he passed the ph probe with flying colors! His results came back with only 4% reflux (the normal child/adult refluxes 5% every day) instead of his previous 19%! We were so grateful that he didn't need this procedure done! There seemed to be so many negative side effects, and so we are so happy his reflux is "normal" now!

Now we just need to teach someone all about his gtube and how to take care of it (it's actually really easy!) so that Paul and I can take a much needed vacation on a cruise! (hint hint to family members... ;))

Thank you for all of your thoughts and prayers for Conner and us as we went through this last, and hopefully LAST surgery! He is doing so well and we are so happy!

PH Probe and G-tube surgery soon

2010-10-07T11:20:00.000-07:00

So today we are taking in Conner for another PH probe test. They will put a tube down his nose (he will still have in the feeding tube in the opposite nose hole, so he will have a "tube mustache") and what this does is it will measure the amount of times he is refluxing during a 16 hr time period. They will feed him only apple juice (for some reason it has to be apple juice for the probe to be able to pick up the acid levels). When he had this done back when he was still in the NICU his results came back at 19% reflux. The normal person refluxes about 5% of the day, but a healthy esophagus will pretty much keep it down (reflux is similar to heart burn). The surgeon that will be doing the G-tube said that 19% is a pretty high number and actually one of the highest that he has seen. We are just hoping that this PH study will be the most accurate it can be, so we can make the best decision for Conner (if he needs a nissen). He is getting his G-tube placed next week. (A G-tube means that instead of a feeding tube going into his nose, the feeding 'port' will now be surgically placed in on his tummy). There are several benefits to having a G-tube. The biggest thing is that it *should* help him be more willing to learn how to eat, because he will no longer have a tube down his throat that activates his gag reflex when he swallows food. He won't have the tube taped to his face anymore, and that alone is supposed to help the whole feeding aversion going on. Another huge plus is that I will no longer find Conner with the tube wrapped around his throat twice when I get him from naps, or get him up in the mornings. Yes, it's quite disturbing to find him like that. (and I always check on him, but it still just happens! He is thinks he needs to roll a million times before finding his comfy spot). I will also no longer have to carry around his pump everywhere I go since he has been on continuous, 24 hr/day feedings. He will begin to get 'bolus' feedings, meaning I will pretty much 'feed' him like a normal baby- every few hours or so he will get milk put into his G-tube. All in all, it should be a very positive change for him, and for us. I'm still really nervous about having to learn and know how to take care of his G-tube, but I know in no time, it will be a piece of cake. Wish us luck!

Happy 5 Year Anniversary to Us!

2010-09-29T10:57:00.000-07:00

Dear Paul,

I love you so much. You have taught me so many things. You truly are my inspiration and make me want to be so much of a better person. You make me laugh more than any other person (actually, you and Conner are tied). We created the most beautiful perfect little baby who has increased our joy exponentially. Sometimes when you are asleep, I lay awake in bed, looking at you. I wonder how I would ever live without you, and commit to making every moment count that much more. I love your ridiculously long eye lashes, your big blue eyes, your generous smile, and so many other things. I love that you always put others first. Not just me. You serve others and are such a great example to me of charity and love. I want to give you the best of me, and I know that you accept me and love me dearly with all of my faults and weaknesses. I love those precious moments in the House of the Lord when we are reminded so tenderly of our covenants and of our Eternal marriage and family. What a beautiful life we have together with our little family. I am so happy to be married to you. You have completed my life and given me all that I adore and love. You and Conner are so perfect for me. I love you.

Love, Annie

P.S. Yep, still haven't figured out the whole color thing. Please someone, come to my house and fix it for me. :)

Dumb black "ink"

2010-09-17T23:25:00.000-07:00

Who can tell me why I can't type in black??!!??? It never used to be a problem, and then all of a sudden like 4 months ago, it wouldn't appear in black anymore. I would post my blog and it would come out grey (like my last post! I couldn't get it to change to any other color!) It is bugging me so bad!

and now apparently this will only show up in grey too!!!!!! grrrrrrrr!

Photo session giveaway!

2010-09-16T10:47:00.001-07:00

Check out this great opportunity and great photographer!

http://wanttoseewhatisee.blogspot.com

Conner modeling fun socks on Babysteals.com (Today only!)

2010-09-10T10:00:00.001-07:00

This link will only work today to show that Conner and I were on the Babysteals website, because they have a new product each day. We went in to pick up something that I bought from the website, and the photographer was there, and asked me about Conner's tube. Then we got to talking about his heart, and surgery, and feeding tube, etc. Then she asked if it would be alright if we had him 'model' some cute socks that would be featured today. Of course I said yes! What mom doesn't want to show off how cute and perfect their baby is?! :) She had me hold him since he doesn't sit up by himself yet, so it was fun to be in the picture with him! She told me that she was going to take some extra pictures, just so that I could have them! So sweet! So I'm going back in next week to pick up the pictures, and I'm so excited! I love the picture she has on the website. It shows Conner's personality so well. Such a calm, sweet baby.

And while you are at it, sign up for Babysteals.com They have some really cool stuff for 50%-80% off retail value, and like I mentioned before, it's a different product each day! (haha, no, I do not work for them in any way, I just really like them!!)

http://babysteals.com/

CHD Awareness video with Conner

2010-09-04T22:10:00.000-07:00

My "heart mom" friend made this video for a school in Oklahoma about CHD (Congenital Heart Defect) awareness. It features Conner at the very end of the video with a couple of pictures. I think the end picture was such a cute way to end the video! :)

I would have put the video right on the blog, but I don't know how, so here is the link instead:

http://www.onetruemedia.com/otm_site/view_shared?p=bd5c27ad0b3b704d0e67c4&skin_id=1901&utm_source=otm&utm_medium=text_url

Thumbs-up to an amazing woman!

2010-09-01T15:21:00.000-07:00

I had to take Conner up to PCMC today for an appointment. The whole ride up to the hospital, he threw up several times and was just having a rough morning. Then, while I was waiting in our room for the doctor to come in, I felt something wet on my arm, and realized that Conner's feeding tube had slipped out! I looked at the tape on his face, and realized that his throw-up had got under the tape, and made it really slippery, and that is what made the tube slide out so easily. I already was feeling sad because Conner wasn't having such a great morning, and so when his tube came out, I started crying. The doctor's assistant said that he would see if he could find someone to come help me put it back in. Paul has been the one to put his feeding tube back in, during the 2 weeks that he has had it. I do the holding and comforting, and daddy does the hard part. So when it came out, I was scared because I didn't know 'how' to put it back in (I 'know' how to put it back in because I've watched Paul do it several times, but have never done it myself). I was really happy that the assistant said he would find someone for me. He came back a few minutes later and said that the people he thought could come and help me were not available.

After the appointment I thought I would go check with the NICU to see if someone might be willing to help me. On my way to the elevators, a nice nurse asked if she could help me (because I was carrying him outside his car seat, carrying the car seat, his diaper bag, and his backpack that carry's his food and pump). I told her that I was o.k. and thanked her. Then when I got to the elevators, there was a lady waiting there with her special needs child in a wheelchair. She too asked if she could help me, and I told her that I was o.k. Well she didn't want to take no for an answer, and said "You look like you need help, so I'm going to take your bag and let me carry that car seat" and proceeded to hand the bag on her daughter's wheelchair and carried the car seat as she pushed her daughter into the elevator. It was such a kind gesture, that I started crying (again) as I followed her into the elevator. When she saw me crying, she asked what was wrong and how she could help. I told her that Conner just had a rough morning, and then his feeding tube came out and I didn't know how to put it back in. She then announced that she would go with me and help me figure it out, where ever I was headed. She came with me as I called on the phone to the NICU and asked them if someone could help me. They put me on hold, then came back and apologized that they couldn't help me (liability reasons, which is understandable). I told Gretta (the name of the lady helping me) that I would just go home and try and put it in myself, but she wouldn't hear of it. She told me that she was going to stay with me until we found someone that would help me.

She told me to follow her and that she was going to talk to her nurse and see what they could do to help. We went to the 3rd floor where they were staying. When she found her nurse and another nurse, she said "This is my friend Annie..." and as she explained the situation, she was so passionate about helping me that she started crying! Then the nurse started crying, and then I started crying again! The nurses talked and then took me into an office, where they got the supplies for me that we needed. The nurse asked if she wanted me to have her put it in, or if I wanted to try. I said that I would try. There ended up being like 5 nurses in the little room, all wanting to hold Conner, and help out. I got the tube in on the first attempt, and they all cheered me on and congratulated me like I had just won a beauty pageant or something- it was so sweet. Gretta waited for me the whole time, out in the hall with her daughter.

What is it that drives human beings to reach out so selflessly and serve a complete stranger? It is of course the light of Christ and the spirit, but it still amazes me how it works. This woman, this beautiful, sweet woman could have so easily let me be. She didn't have to offer her hand to help me. She didn't have to make it her mission to help me find help for my baby. She had her hands full already (physically and mentally) with her daughter who had very special needs herself. It would have been so easy for her to think that she was too busy and that my need was so minuscule compared to her daughter's needs. And yet she didn't. She took me under her wing and with a heart so pure and full of charity, made me feel as though the Savior was taking care of me. She felt my sorrow and yearned to make me feel better. She went out of her way to serve me when there was no benefit for her from it. She won't ever get public recognition for this act, she won't get paid money, she didn't do it so other's could see her goodness. She helped me because she is a selfless, giving woman who saw another in need.

You can tell what kind of woman she is just from her daughter. I asked about her daughter, and she told me that she adopted her. I asked from where, and she told me that she adopted her from social services. This means that this woman knowingly adopted this child with all of her physical handicaps, and neurological problems. She gave up her wants, hobbies and "worldly desires' to so selflessly serve, love and take care of another human being. What could be a more Christ-like thing to do? This woman is a hero in my eyes, and made me really think about my life and what I'm doing to serve others. I want to be more selfless and giving. I want to be more charitable and giving of my love to people who are in need. It is not my place to judge other's, but rather to love unconditionally and be more Christ-like.

Life is Beautiful.

2010-08-30T11:13:00.000-07:00

Life has been crazy and wonderful around here. The easiest way for me to give a quick update as to what's been happening, is just to make a random list, in no particular order of importance or in correct timeline.

Conner turned 6 months old on the 12th of this month! I seriously cannot believe he is already 6 months old! Up to his 6 months old, he has spent 1/2 his life in the hospital. Weird.
Conner learned to roll from back to tummy about 3 weeks ago. He rarely will stay on his back anymore and it seems to have helped with his throwing up. He sleeps on his tummy all night (even if we move him to his back when he is totally asleep, he will roll back over). He is working on figuring out how to roll back onto his back. Almost there.
Conner goes to feeding therapy every 2 weeks. We practice with Conner 2x a day with eating. We use either pureed fruit or rice cereal/milk breast mixture. We spoon-feed him. Mostly it's just getting it on his lips and getting him used to different textures and tastes. Good days are when we can get any of the food actually inside his mouth, and not-so-good days are that he will throw up the minute the spoon touches his lips. We are the biggest cheeseballs when we feed him, because we have to keep it super positive so he will like it. If someone were to capture our expressions on camera during the process of feeding him, I'm sure they would make it onto the web, and be a big hit because we look ridiculously cheesy.
Conner's NJ feeding tube got moved to an NG about 1 1/2 weeks ago. So now instead of his small intestine getting fed the milk, his tummy is getting fed. He is still on continuous feeds, but the goal is to move to bolous feeds- which means, instead of feeding him 24 hrs a day, we start to separate and condense his feeding times so he can learn what it feels like to be hungry and to get full. Doing bolous feedings should help him want to learn how to eat because he will have more of a desire.
Conner makes lots of cute noises and smiles whenever we smile at him. He has the most darling smile and when he gets really excited, he smiles and scrunches his nose, which is totally a trait he gets from his momma :) Daddy is the best at getting him to laugh. When Conner is on his tummy and gets excited, he kicks his legs up and down, and he looks like a fish out of water- it is hilarious.
His hair is slowing getting thicker and he has a little patch of hair right on the top of his head that seems to be the only place that is actually growing longer- I love it. I will soon try and style that little patch of hair with some gel :) He has very blonde hair, and sometimes in the sunlight, it looks a tiny bit strawberry blonde (Paul's dad has red hair, and when Paul grows out his beard, it's reddish).
Conner is a fantastic little sleeper. We put him down for bed between 7:30-8pm and he sleeps until 9am, sometimes 9:30 or 10am. He takes a nap from 11am-1pm/2pm and another nap usually around 4pm for an hour or so.
Conner puts everything in his mouth and I LOVE it! I love it because it means that although the process of learning to eat is challenge that he doesn't appreciate right now, he does not have an oral aversion to things in his mouth. Oral aversions often happen when a baby/child doesn't eat with their mouth, and they have reflux and issues with throwing up a lot. He luckily loves to chomp on all his toys and we are thankful for that. He doesn't slobber (yet) but for the past several weeks has had a chin rash. I'm pretty sure it's because of his saliva that he rubs onto his chin from his toys and his fist. I try putting diaper rash cream on it and it seems to help. But if you notice sad looking red chin in his pics, then you know why. His feeding therapist said that his gums are puffy and that he will probably be teething soon. Can't wait for that (said in a sarcastic voice).
Conner wears 3 month and 3-6 month clothes still. He is on the smaller size of 'normal' (so says his pediatrician), but growing and gaining weight well. At his last appt which was like 3 weeks ago, he weighed 13 lbs and was 23 inches long (he started out at 6 lbs, 2oz and was 17 1/2 inches long).
Conner had the sad luck of inheriting sensitive skin from mommy and daddy. He had no choice in the matter. He also had no choice in also inheriting the luxurious tan skin like his parents. HA. Ya right. Poor kid also got our pasty white skin. With pride, we are happy to say that he got beautiful blue eyes, which came from both of us. We think that he is perfect and love every ounce of his sensitive, porcelain skin.
Conner has had 2 post-op cardiology visits since his surgery and they say that everything looks wonderful and his heart has healed very well. His cardiologist is very happy with how things look.
Conner still has the same sweet, mellow temperament that he displayed since day one. He only cries when he throws up and when he is really really tired. He is content to play 'by himself' (i.e. he will happily talk to himself and play with his toys in his play area while I blog for an hour). He does however, LOVE play time with mommy and/or daddy. He loves attention and is eager to please. We are so proud of him when he grasps our fingers for balance support as he stands on his strong little legs, and smiles. He loves to be tickled and he loves to grab our faces.
We have been crazy with appointments lately. Between Conner's pediatrician appointments and cardiology visits, and other medical appointments for him, I have had a few appointments myself. The good old dental cleaning, (which I actually love, call me crazy), a knee evaluation and a few ENT appts. I first experienced bad pain in my right knee on our 7 hr hike in Hawaii back in Oct. The pain went away after 2 days, and never came back...until the end of June. It was the same pain, and I figured it would go away like before. Well it didn't, so I finally went and saw a sports medicine doctor. There is some fancy medical term for what he said I have, but it's basically "bumps under my knee" (he said that's how I can describe it to people). It's fairly common and with antibiotics and different exercises it will heal and go away. I went to see an ENT because about 2 weeks after giving birth I started experiencing several different symptoms. I woke up a few mornings in a row with the room spinning. Not the kind of room spinning that feels yucky but is not a big deal, but this was really scary. It was like the room was violently spinning, making me feel sick to my stomach, and I couldn't control it. I would grab onto whatever I could- the bed, Paul, my sheets- anything that was a stable part of reality to help stop the spinning sensation. And it was so scary that I would cry. It would happen when I was just laying there, when I would turn, when I would sit up, and when I was just standing somewhere. And it brought headaches that would last for days. (I rarely get headaches). I felt dizzy all the time for about 2 weeks. I would go to the hospital and felt so sick that I couldn't even hold Conner. I made appts with 2 different ENT's. The first said that he thought I had loose crystals in my ears, which cause imbalance and room-spinning. He did some exercise that was supposed to fix it. It didn't. I went and saw the other ENT and he also tried a similar exercise. I did a hearing and balance test with him. Everything was pretty normal with the test results. The headaches, dizziness and room spinning eventually subsided, but every night since, when I lay down to sleep, or turn in my bed, or close my eyes when rocking Conner, I have to concentrate and focus my mind to prevent it from going into a state of dizziness. I recently returned to the 2nd ENT Dr. to let him know what I'm still dealing with. He sent me to have an echo of my heart, an MRI and a scan of my neck. Luckily everything is normal and there is nothing of concern, but I'm still left wondering what is wrong with me.
This last week Conner started doing the funniest thing. It looks like he is doing a pelvic thrust into the air, while he is laying on his back. It makes me laugh.
Paul got a new job at an Internet Marketing company about 1 1/2 months ago. He super excited and happy about it! He is amazing at what he does and he such an amazing husband and daddy!!!
Paul has now been the ward clerk for over a year. He is really good at this job so we will have to move before they release him! (the previous clerk was in that calling for I think almost 15 years!)
I have been the 1st counselor in Young Womens for about 2 years. I LOVE it!! I was so intimidated at first, but now I love the girls and we have so much fun together! And they ask to borrow my clothes all the time, so I feel TOTALLY cool and like I'm still young and fashionable! :)
Paul and I will be celebrating our 5 year anniversary next month and I'm so excited! Marriage seriously rules and I love it so much!! I love Paul sooooo much and I can honestly say that marriage has just gotten better over time! (is gotten a word?) We have SO much fun together and throw the cutest baby in the world into the mix, and what do you have? The happiest little family EVER!!!
Phew, this long post should make up for my not blogging for a while. :)
P.S. the pictures where Conner doesn't have a tube in his nose, would be one of the 5 times that it has come out since it was moved to an NG tube, and we can luckily put it back in ourselves and we don't have to go to the hospital anymore.

DATE NIGHT!!!

2010-08-21T18:31:00.000-07:00

We are going on a date tonight! I find this very worthy of a blogging about, considering it's only our 2nd date night 'out' in 2 months. Paul's wonderful mom is going to watch Conner (he will be asleep, so it should be pretty easy :) ) so we can go out. I'm so excited to go out with my hot husband and spend time together and enjoy getting out! Well, I gotta go fix my makeup and get ready! Woo hoo! (this pic is from one of our first dates in 2004)

Cute pics

2010-07-27T17:00:00.001-07:00

We had these pictures taken of Conner just a few days before his heart surgery (which would explain why there is no big scar yet :) )

Swallow Study...PASSED!!!

2010-07-22T10:34:00.000-07:00

Conner when he was 3 weeks old, taking a bottle...let's get back to this buddy! You can do it!

Conner PASSED his (3rd) swallow study!!! I cannot tell you how excited we are, and proud we are of our sweet little Conner! He did so great! The feeding therapist that performed the test on him is so cute and will be the one to continue working with Conner through the whole process of learning how to orally eat again. She first started by mixing the barium with sweet potatoes (so weird to think that he is old enough for baby food!) and spoon fed it to him (ok, more like just had to shovel it in his mouth and hope he didn't spit it all out!). He got mad and coughed and cried...but then began to swallow. And he didn't aspirate! She did a few more spoonfuls to make sure they got a good look at his swallowing and how it was going down. Then she made a thinner liquid to give to him through a bottle (barium + nectar). This too she just had to squirt into his mouth and hope enough would stay in for him to swallow. Again, he got mad and did throw some of it up, but through his tears, he swallowed a few times and didn't aspirate! What a big boy and what proud parents!!!!! (by the way, I did cry, but it was before they had even started, and then once they were doing the test, I was fine!).

This truly is such wonderful news, and such a relief for us. We can now start working on teaching him how to eat again, and although it will be a long process, and will require A LOT of patience, we are thrilled to get going! This also means that most likely they will be moving his NJ tube (meaning the tube is feeding his small intestine) into an NG tube (feeding his tummy). We are hoping that feeding his tummy milk will help his throwing up not be so painful (because right now he is throwing up straight tummy acid/mucous) since it will be mixed with the milk and it will be easier on him. We are also hoping and praying that with more time, he will start to out grow his reflux, even to the point of just 'normal' reflux, to avoid surgery.

Each day I will be practicing with a mixture of rice cereal/breast milk and giving him tiny little tastes, and doing simple things like spreading it on his lips and getting him used to the taste/texture of food and the spoon. Like I said...it's going to take a lot of time and a lot of patience! :) I also will continue to do facial exercises with him, making silly fun sounds and smiling a lot while I'm doing it (our facial expressions make a huge impact on how he feels about letting things in/around his mouth). It all has to remain positive and fun for him in order to make any progress. They say the faster you try and get them to eat, the more reluctant they become, so it will be so interesting to see how long this process takes. I honestly don't know if it will be like a month before he is eating, or if it will be 6 months. Who knows. All we know is that we are excited for a change and feel very hopeful. I know he is doing so well because of all the prayers that have been said in his behalf from all our wonderful family and friends, and from all the Fathers blessing's that Paul has been able to give him.

Swallow Study

2010-07-20T21:29:00.000-07:00

Conner's first full bath since his heart surgery! He loved it!

Tomorrow is Conner's 3rd Swallow Study. He has not had one since March, when he was still taking a bottle and his binki. Now, he doesn't take either, doesn't remember how and throws up when we try and practice with him. I'm so nervous for my sweet little baby to have to go through the 'test' tomorrow. What they do for the test, is they feed a baby a liquid called barium (a yucky chalky substance that can be seen on an x-ray), and watch it on a live x-ray to see what happens with the swallowing. This is how they can see if the baby is aspirating (getting liquid into the lungs, which is dangerous) and also check for reflux. Seeing as how Conner doesn't swallow anything right now (other than his own saliva, and I'm sure some reflux), it makes me so sad to think of how it will turn out tomorrow. They said that they will most likely just have to squirt the liquid into his mouth to see what he does with it. How would you like it, if you were just sitting there and then all of sudden a nasty liquid was squirted into your mouth without you being prepared? You would probably choke and cough and be pretty sad, right? That is what I'm sadly expecting for tomorrow, and I'm thinking I will probably (actually I'm sure I will) cry, when they are doing it. My sweet little Conner. I wish his reflux could disappear and he could miraculously remember how to eat from a bottle and love and take his binki like he used to. Hmmmm, wishful thinking. We would sure appreciate a few prayers in Conner's direction to help him do the best that he can with the swallow study and that it can be an accurate depiction of how is doing with swallowing/refluxing, so that it can give us some direction to know what to do with his feeding/reflux issues.

Conner Update

2010-07-15T09:50:00.000-07:00

Getting ready to leave the hospital!

Daddy and Conner hanging out.

Mommy and Conner hanging out.

The 3rd day after surgery. Conner awake and aware for the first time since surgery.

Conner awake and moving his arms for the first time since surgery (the 3rd day)

This is a much overdue update on Conner! Conner was able to come home July 2nd after 11 days in the hospital. The doctors thought he might be able to come home just 5 days after surgery because he was doing so well, but then Conner's heart rate started rising, and he started to be more fussy. Conner was the fussiest and most upset we have ever seen him. He was hard to console, (which is unheard of for him) and just seemed very uncomfortable. His heart rate Sunday night was around 179-180 bpm. Then by Monday morning, Conner's heart rate had climbed to 200 and stayed between 190-210 bpm nearly all day. They ran a bunch of labs and tests, but everything came back negative. The doctors didn't know what was causing his escalated heart rate, but decided to send him back to the CICU (he had moved to the 'floor' on Friday) to be able to monitor him more closely. The doctors decided to give Conner lots of fluid through his IV (even though he was not dehydrated according to their testing) just to see if it would help. It did seem to help a little, and by Monday night his heart rate was staying around180-190 bpm which was better than 190-210! Tuesday it stayed at 180-190 and then slowly started lowering even more. By Wednesday his was at a stable 160-170 so they felt comfortable in sending back to the 'floor' (this is where they do not have one-on-one nursing care anymore, but rather one nurse assigned to 3-4 different patients, and so you basically have to be with them 24/7 and you can sleep in those rooms). Ideally, his heart rate should be at around 130-140, but he was stable and everything looked good, so they weren't concerned about the 160-170 bpm. We slept there for 2 more nights, and then they gave us the boot on Friday, July 2nd!

As a 'fun' little side note, let it be known that since Conner has been home, we have had to have his tube replaced twice, which makes a running total of it having to be put back in 9 times in approximately 3 months. In fact, on Monday night, June 21st, his tube became clogged (it had just been replaced 3 days before!!!!) and we could not believe that it was happening THE NIGHT BEFORE his surgery! And I was supposed to be stopping his feedings in just 12 hours from when it became clogged! How frustrating! We seriously were in disbelief that the one night we wanted to be super calm and relaxed, that would happen! I cried because all I had wanted was for Conner to get in a really good nights rest, and and feel the peace in our home and that we could enjoy the night before the big day. We tried unclogging the tube pickle juice and coke and the 'clog zapper' solution we have from our home health care company, but nothing worked.

So up to PCMC we went at around 9p.m.

We explained that his surgery was the following morning and wanted to see if they knew of any other way to unclog the tube so Conner wouldn't have to go through having a new one placed, when they would take it out for surgery anyways in just a few hours! The doctor came in and decided to try and run a wire down the tube. The wire is what is inside a new tube when they are placing it. He just pulled the wire out of a new tube, and then pushed it down in Conner's tube. Well, it did the trick, and unclogged the tube! We were so thankful that that worked and that they didn't have to replace the whole tube!

Having Conner home and having his heart fixed is WONDERFUL!!!! It has been amazing to see the difference in his energy level. The last day before we left the hospital, we had a funny experience. Conner needed his diaper changed, and it was MESSY! So Paul was on one side of his crib, holding his legs in the air, while I was on the other side of the crib, cleaning him up. And he was MAD! He did not want us to be bothering him or touching him! He was arching his back really strongly, and crying. Paul was holding his legs/bum in the air pretty high since I was having to wipe down his back, and then all of a sudden, Conner arched really hard, and really fast, and then before we knew it, he had flipped himself over and was on his chest(but like upside down!) It is hard to describe his position, but it was ridiculously hilarious! Paul and I could hardly control our laughter as we hurried and flipped him back over. He was so strong with his new-found energy! And even his cries are more loud and demanding now!

We had hoped that Conner's reflux would maybe improve from the surgery (we didn't expect it would, but still hoped...). While in the hospital he only threw up 3-4 times, so we were really happy about it. But since he has been home, it is back to what it was before the surgery. He throws up anywhere from 3-7 times or more, a day. It is so sad. Volume-wise, it's not a lot of throw up (it's his tummy acids) but when he throws up it is forceful and hard on his sweet little body. Sometimes the reflux isn't too painful and he will throw up pretty quietly, but most of the time, it really upsets him. His whole body tenses as the reflux makes it way up, and he turns red and gets mad. Sometimes he will throw it right up, and other times he will gag several times before he throws up. His little head gets all sweaty and his breathing is rapid for a minutes afterward. I think the saddest part is when he makes little moaning, sad sounds when he knows that it is coming. It is like the most worried little squeaks and moans you will ever hear. It is at those times especially, when I wish more than anything I could take away his pain and just let him feel free of it all. It will be quite the journey ahead to figure out his feeding and reflux issues. We are praying that he will outgrow the reflux quickly, but it doesn't seem like that will be the case. We are really hoping to be able to avoid the nissen surgery that would make it so he didn't reflux or throw up anymore. We don't want to have to have him go through another surgery, but know that it may have to be done.

Conner has been really cute with his mouth lately. He is smiling more and we can sometimes get a little bit of a chuckle-grunt out of him (not anything quite like the video I posted last time yet again), but he is learning. The past 2 days, he has been pulling in his bottom lip, and what it looks like, sucking on it. It looks so cute. And he has been doing a lot of sticking his tongue out. His tongue looks so pointy when he barely sticks it out, it makes us laugh. He likes it when I try and "get his sugars" (an expression that I got from my mom, who it it from her mom)- It just means that I'm burying my lips in his chubby little neck and trying to munch on him :) He thinks it's funny, and is always smiling a big cheesy smile when I pull away and look at him. He is reaching for my face now whenever I am close to his face. I love it. He reaches out his little arms and puts his hands on my cheeks. If I'm kissing his cheeks, he will open his mouth to try and lick my face. I giggle when he does that. How can you not? He really likes when daddy does "Ah-Boo!" with him, and jumps just about every time, and then gets the biggest grin. Paul loves to rock Conner, and Conner loves it just as much! Paul has this magical way of rocking him that gets Conner so calm and can put him to sleep. Me, if I try and rock him, he usually wiggles and squirms and sometimes will actually sleep on me. It's just a daddy thing I guess!

We had our first cardiology follow up yesterday and they said everything looks really good! Yay! We can now give him regular baths, instead of just sponge baths, so Conner will very much appreciate that. His incision scar looks really good! It looks like it's been healing for months, when it's only been weeks. We will have another cardiology visit in 6 weeks, then probably 6 months after that, and then it will be yearly visits for the rest of his life. Conner is the biggest blessing in our lives, and we love him dearly. We have felt the power of prayer through this whole experience and have felt the love and concern from so many wonderful family and friends and people that have fasted and prayed for Conner and our family. Thank you so much to everyone!

Conner's little laugh

2010-06-23T20:11:00.000-07:00

Conner

2010-06-23T20:04:00.000-07:00

Is this not the cutest thing you have ever seen?! It's such a tiny hospital gown!

Waiting to be called in to get Conner dressed and ready.

Hahaha, I love Conner's expression! We were driving to the hospital, and I said to him "Conner, did you know that you are going to have your heart fixed today?" and this is the look he gave me! Looks a little freaked out! lol, sweet boy!

Recovering

2010-06-23T16:40:00.000-07:00

Conner's surgery yesterday went very well. The surgeon was very happy and confident when we spoke with him afterwards. He said that the VSD hole he repaired was very large. He gave us the little square of material that he cut the circle out of to use for the patch, as a little memento. In total, he repaired 4 different things with the heart. The surgery took about 4 hours.

We had to be at the hospital at 6am. We signed a ton of papers and then they took us in a little room. The nurse pulled out the tiniest little hospital gown and blue little socks for us to put Conner in. (I will post a pic later of it). We put it on Conner, and tied the ties in the back (just like an adult gown!) He was SO stinkin cute in it!!! Then we were transferred into a few different waiting areas. The surgeon came and talked to us, and then the anesthesiologist came and spoke with us as well. When he was done talking with us, he had us follow him down a hallway. Then at the end of the hallway, he turned to us, told us to give Conner kisses, and then we had to hand over Conner to him. Can you say tear-jerker! Ahh! I was fine up until I placed Conner in his open arms, and he looked at us with his big blue eyes, so calm, and the anesthesiologist walked away with him, both in their surgery attire.

A nurse would come update us at all the major parts of the surgery. The hardest update for me to hear was when she let us know they had made the incision. No turning back after that! Thinking of his precious little chest that I had given kisses to, had tickled and rubbed lotion all over, being opened, was emotional for me. The time in waiting room actually went faster than we had anticipated it would, which of course was nice. We were finally able to go in and see Conner at about 1:30pm. He was not as swollen and puffy as people had told us that he would be, which we were so thankful for. It is so hard to see your sweet little baby hooked up to so many tubes, and cords and scary looking things. It is hard not to be able to hold them and comfort them. With so many tubes and things going on, they keep him sedated until he is ready to lose some of the tubes, etc.

Late this morning they were able to successfully remove his breathing tube. They tried to remove it yesterday, but his body wasn't quite ready for it, and was so 'comfortable' with all the medications he was on, that he decided he didn't want to do the work to breath on his own. They had to replace the bt, but it was difficult because he kept throwing up while they were attempting to put it down. The whole process took about an hour, and it was one of the most stressful, emotionally-draining experiences. This morning we were so nervous about them taking it out. They removed it, and then Conner started coughing and crying. The saddest sound you will ever hear...a baby who is sedated and trying to cry. It's a really quiet, drawn-out cry that breaks your heart. But it was a very good sign that he was ready to breathe on his own, and he has been doing really well since being off of it!

Each day he will be on less medications and less tubes. The average recovery time is 7-10 days in the hospital. It will take 6 weeks for the full recovery. We are so excited to get him home and see how different Conner will be- meaning how much more energy he has now that all the extra calories, etc, are not being taken up by his heart. The surgeon explained a normal healthy baby uses about 100 calories a day, but a 'heart' baby uses about 180-190 calories a day. So we are excited to see the difference.

Thank you to everyone for all the prayers, and thoughts and well-wishes. We know Conner will recover well and that soon we will have him home.

One fun little perk I had today was that as I was leaving the CICU to go pump, I was stopped by a 'heart'-mom who follows our blog (and I follow hers). She recognized me from pics on our blog (we had never met before). We talked for a few minutes and it was so lovely to meet her in person! She has a beautiful baby girl who is just a few rooms down from ours here. We pray for her sweet little girl.

Another perk today was that one of our primary nurses from the NICU came down to see us here in the CICU. She brought a sweet little gift for Conner. We love her so much. She was so thrilled to see Conner and how much he has grown since she last saw him (it's been about 6 weeks since the last time she saw him). We appreciate all she did for Conner in the NICU and for her love and support she continues to give him.

Heart Surgery

2010-06-21T23:01:00.000-07:00

Today is Conner's heart surgery!!! (It's 12:03a.m.!) We have so many wonderful family and friends who have been praying for Conner and Paul and I, and we have absolutely felt it's calming, sweet power. Conner has received many blessings in preparation for this surgery, and we know Heavenly Father is watching over him and that he will bless his sweet little body and heart. Conner is such a blessing in our lives. He is so amazing and so brave and strong. We love him dearly and have loved having him home before his surgery. We have been able to get to know him and his little personality. We recorded him 'learning' how to laugh tonight (I will have to post the video later) and he has just brought us so much joy and happiness. Family is truly what this life is about. The Gospel allows us to experience so much love and joy in our families! I have spent the last several days really taking every opportunity to cuddle and love on Conner. I kiss those squishy little cheekers, rub his soft head, massage those chubby little thighs, and most of all, give kisses up and down and all over his chest. His non-scarred chest yet. I have spent so much time looking at his chest and watching his heart make his chest rise and fall and rise and fall...thinking of the day that his heart will be fixed. And now it is here! Of course we are experiencing a range of emotions. We are so excited, and nervous, and anxious, yet calm. I keep imaging the moment that they will come to take him from my arms for the surgery. Just the thought makes me emotional. They are going to fix my baby's heart. We pray for the doctors and surgeons involved that all will go well. We are so thankful for their skills and dedication to what they do. They change lives. Thank you to everyone for keeping us in your thoughts and prayers! Go Conner! We love you!!!!

What things have you done?

2010-06-19T09:43:00.000-07:00

What to do: Copy this list on your Blog, and bold the things you've done.
(I just put mine in red)

1. Touched an iceberg

2. Slept under the stars

3. Been a part of a hockey fight

4. Changed a baby’s diaper

5. Watched a meteor shower

6. Given more than you can afford to charity

7. Swam with wild dolphins

8. Climbed a mountain

9. Held a tarantula
10. Said “I love you” and meant it

11. Bungee jumped

12. Visited Paris

13. Watched a lightning storm at sea

14. Stayed up all night long and watched the sun rise

15. Seen the Northern Lights

16. Gone to a huge sports game

17. Walked the stairs to the top of the Statue of Liberty

18. Grown and eaten your own vegetables

19. Looked up at the night sky through a telescope

20. Had an uncontrollable giggling fit at the worst possible moment

21. Had a pillow fight

22. Bet on a winning horse

23. Taken a sick day when you’re not ill

24. Built a snow fort

25. Held a lamb

26. Gone skinny dipping

27. Taken an ice cold bath

28. Had a meaningful conversation with a beggar

29. Seen a total eclipse

30. Ridden a roller coaster

31. Hit a home run

32. Danced like a fool and not cared who was looking

33. Adopted an accent for fun

34. Visited the birthplace of your ancestors

35. Felt very happy about your life, even for just a moment

36. Loved your job 90% of the time

37. Had enough money to be truly satisfied

38. Watched wild whales

39. Gone rock climbing

40. Gone on a midnight walk on the beach

41. Gone sky diving

42. Visited Ireland

43. Ever bought a stranger a meal at a restaurant

44. Visited Russia

45. Bench-pressed your own weight

46. Milked a cow

47. Alphabetized your personal files

48. Ever worn a superhero costume

49. Sung karaoke
50. Lounged around in bed all day

51. Gone scuba diving

52. Kissed in the rain

53. Played in the mud

54. Gone to a drive-in theater

55. Done something you should regret, but don’t

56. Visited the Great Wall of China

57. Started a business

58. Taken a martial arts class

59. Been in a movie

60. Gone without food for 3 days

61. Made cookies from scratch

62. Won first prize in a costume contest

63. Got flowers for no reason

64. Been in a combat zone

65. Spoken more than one language fluently

66. Gotten into a fight while attempting to defend someone

67. Bounced a check

68. Read - and understood - your credit report

69. Recently bought and played with a favorite childhood toy

70. Found out something significant that your ancestors did

71. Called or written your Congress person

72. Picked up and moved to another city to just start over

73. Walked the Golden Gate Bridge

74. Helped an animal give birth

75. Been fired or laid off from a job (when I was 14!)

76. Won money

77. Broken a bone

78. Ridden a motorcycle

79. Driven any land vehicle at a speed of greater than 100 mph

80. Hiked to the bottom of the Grand Canyon

81. Slept through an entire flight: takeoff, flight, and landing

82. Taken a canoe trip that lasted more than 2 days

83. Eaten sushi

84. Had your picture in the newspaper

85. Read The Bible cover to cover

86. Changed someone’s mind about something you care deeply about

87. Gotten someone fired for their actions

88. Gone back to school

89. Changed your name

90. Caught a fly in the air with your bare hands

91. Eaten fried green tomatoes

92. Read The Iliad

93. Killed and prepared an animal for eating

94. Taught yourself an art from scratch

95. Apologized to someone years after inflicting the hurt

96. Communicated with someone without sharing a common spoken language

97. Been elected to public office

98. Thought to yourself that you’re living your dream

99. Had to put someone you love into hospice care

100. Sold your own artwork to someone who didn’t know you

101. Had a booth at a street fair

102. Dyed your hair

103. Been a DJ

104. Rocked a baby to sleep

105. Dropped a cat from a high place to see if it really lands on all fours

106. Raked your carpet

107. Brought out the best in people

108. Brought out the worst in people

109. Worn a mood ring

110. Ridden a horse

111. Carved an animal from a piece of wood or bar of soap

112. Cooked a dish where four people asked for the recipe

113. Buried a child

114. Gone to a Broadway (or equivalent to your country) play

115. Been inside the pyramids

116. Shot a basketball into a basket

117. Danced at a disco

118. Played in a band

119. Shot a bird (Does duck hunt count?)

120. Gone to an arboretum

121. Tutored someone

122. Ridden a train

123. Brought an old fad back into style

124. Eaten caviar

125. Let a salesman talk you into something you didn’t need

126. Ridden a giraffe or elephant

127. Published a book

128. Pieced a quilt

129. Lived in a historic place

130. Acted in a play or performed on a stage

132. Made a hole-in-one

133. Gone deep sea fishing

134. Gone roller skating

135. Run a marathon

136. Learned to surf

137. Invented something

138. Flown first class

139. Spent the night in a 5-star luxury suite

140. Flown in a helicopter

141. Visited Africa

142. Sang a solo

143. Gone spelunking

144. Learned how to take a compliment

145. Written a love-story

146. Seen Michelangelo’s David

147. Had your portrait painted

148. Written a fan letter

149. Spent the night in something haunted

150. Owned a St. Bernard or Great Dane

151. Ran away

152. Learned to juggle

153. Been a boss

154. Sat on a jury

155. Lied about your weight

156. Gone on a diet

157. Found an arrowhead or a gold nugget

158. Written a poem

159. Carried your lunch in a lunchbox

160. Gotten food poisoning

161. Gone on a service, humanitarian or religious mission

162. Hiked the Grand Canyon

163. Sat on a park bench and fed the ducks

164. Gone to the opera

165. Gotten a letter from someone famous

166. Worn knickers

167. Ridden in a limousine

168. Attended the Olympics

169. Can hula or waltz

170. Read a half dozen Nancy Drew or Hardy Boys books

171. Been stuck in an elevator

172. Had a revelatory dream

173. Thought you might crash in an airplane

174. Had a song dedicated to you on the radio or at a concert

175. Saved someone’s life

176. Eaten raw whale

177. Know how to tat, smock or do needlepoint

178. Laughed till your side hurt

179. Straddled the equator

180. Taken a photograph of something other than people that is worth framing

181. Gone to a Shakespeare Festival

182. Sent a message in a bottle

183. Spent the night in a hostel

184. Been a cashier

185. Seen Old Faithful geyser erupt

186. Joined a union

187. Donated blood or plasma

188. Built a campfire

189. Kept a blog

190. Had hives

191. Worn custom made shoes or boots

192. Made a PowerPoint presentation

193. Taken a Hunter’s Safety Course

194. Served at a soup kitchen

195. Conquered the Rubik’s cube

196. Know CPR

197. Ridden in or owned a convertible

198. Found a long lost friend

199. Helped solve a crime

200. Responded to a NJP newsletter

Looks comfy, right? LOL

2010-06-18T11:24:00.000-07:00

I just think it's so silly and cute when Conner puts his head like this in the swing (he does it awake and asleep). We are guessing he does it because it opens his airway up more and is easier to breathe. It seems like it would so uncomfortable, but apparently he likes it!

"What it's like to be a heart mother"

2010-06-12T18:33:00.000-07:00

I read this poem on another "heart mom"s blog and loved it:

"What it's like to be a heart mother"

It's that very first moment,
He's placed in your arms,
A wrinkled red face,
Filled with so many charms,
You can't help but cry,
(As a new mother knows)
You've been waiting so long,
Just to count all his toes,
Then visitors come,
Bearing gifts that are blue,
And they laugh, and snap pictures,
Saying, "He looks like you."
And in just a few days,
(Ahh... the joy and the fun)
You'll be on your way home,
With your beautiful son.

What is it like to be a heart mother?
Again, it's that moment,
You hold your child close,
And cry secret tears,
That a heart mother knows.
In just a few days,
Maybe less,maybe more,
You'll be letting him go,
Asking, what lies in store?
And as your child lays,
In a small isolette,
You think to yourself,
I must not get upset,
And as family arrives,
You try hard to stay strong,
But your tired eyes say,
That this all seems so wrong.
You know what is coming,
Though your still not prepared,
He will leave your safe arms,
To have his heart repaired.

What does it mean to be a mother?
It is nights with no sleep,
It is feedings and spit up,
It is watching him roll,
And then finally sit up.
It is knowing this child,
Depends on you most,
It's those everyday milestones,
in which, you can boast.
And yes... there is crying,
(At time's it's quite loud)
But when he says,, "Mama".
He makes you so proud.

A heart mother...

Ahh.. yes little rest,
As the monitors beep,
And you begin to question,
Is there such thing as sleep?
And you can't go home yet,
And your kid's ask each day,
"Will we see you soon mommy?
Can you come home and play?
Real soon... you promise,
Yes...I miss you too",
And then people ask,
How you do what you do.
And you stroke his forehead,
And his fist is unfurled,
And you know for this child,
You would give all the world.

A mother...

Time passes quickly,
Soon he's off to school,
And before you know it,
Hugs just aren't "cool",
He's a teenager now,
With dreams of his own,
And one day it hits you,
My child, has grown.
And though you are proud,
For all he's achieved,
Life passed more quicly,
Than you could have believed.

A heart mother...

You've always strived to live each day,
As if it were the last,
As the mother of a heart child,
You know things can change fast.
You've seen so many familes,
Endure things you can't understand,
And while you trust that God is good,
Sometimes you just don't understand.
But you go on, because you must,
God chose you for him, and no other,
Your stronger that you could imagine,
You have become a heart mother.

Every mother...

And every mother's journey,
Begins on that day when,
She knows with everything she is,
A mother, she has always been.
Crayon marks cover all the walls,
Muddy prints scatter the floor,
Toys and messes everywhere,
And yes... laundry galore.
I must have the best job that there is,
(Despite all the clutter and mess)
My children.. they remind me,
Life shouldn't be such a stress.
Each and every day we have,
(To laugh, to hug, to play)
Is a memory I'll always have,
And nothing, can take that away.
I wouldn't trade a moment,
Or all that they've taught me to see,
I'm blessed to be a mother,
It's more than I'd dreamed it could be.

~Stephanie Husted

Re-rescheduled!

2010-06-11T21:29:00.000-07:00

Conner's heart surgery was rescheduled again, but this time it's for the better! Yay! We called and talked to scheduling to figure out why it had been rescheduled so far out, and they looked into things, and were able to get him in sooner. This time the surgery is set for June 22nd. We pray that he doesn't get bumped again, and that this date will hold true and that he can get his heart fixed, so that he can recover and we can move onto other issues, like his eating.

(What a hot husband I have!)

Bound to happen...AGAIN! and AGAIN!...

2010-06-11T21:05:00.000-07:00

This sweet little boy just likes his face without his feeding tube!! I guess I do too...because like 2 weeks ago, I went to pull him out of his swing...and yep, there it went! The tube got stuck around the bottom corner of his swing, and I didn't notice, *der!*, and it slipped (ok, maybe the word to describe it is more like yanked) right out of his poor little nose! I, OF COURSE, felt so so so so so terrible and cried forever again, and OF COURSE my husband was just the sweetest guy (he is seriously way too nice to me!) and said that it was just a mistake...again! So up to PCMC we went and had it put back in.

THEN last weeks rolls around, and Conner has a very fussy, rub-my-face-all-day kind of day. Anytime I was holding him and he was facing towards me, he would constantly rub his face against my shirt/burp cloth...and he would not stop unless I physically turned his body away from mine!!! Silly boy! I guess the feeding tube makes his nose/face itch or feel super tickly, or something, because he will rub his face until his nose is bright red! So anyways, it was one of those kind of days, and he just started adding in using his hands to rub his face like that same week. I had been watching his hands all day to make sure he wasn't too close to his tube, but never thought of putting socks on his hands to be extra safe. Well, I was holding him, and he was rubbing his face on me, then was using his hands to rub his face, and I pulled his hands down, and they went right back up, and I moved his hand again...oops, too late...didn't see that he had his skinny little long finger wrapped around the tube! (in the little tiny space between where the tape leaves an opening by the curve of the nose!). OK, so this time the tube came out, I literally laughed, which felt much better than crying! I couldn't help it because every time I looked at Conner, he smiled at me, like he was saying "oh mom, I just look so much more handsome without the feeding tube in, right? oh ya, check me out!". It was so adorable! What a little stinker! So I'm really really really hoping though that the 4th time was it, and that it doesn't happen again!!!!!!!

Rescheduled...AGAIN

2010-06-02T18:42:00.000-07:00

I am very sad to report that Conner's heart surgery has been set back again. The hospital called and said that there are emergency cases that need to before Conner, and so they rescheduled him to JULY 6TH. Needless to say I cried for the next hour. I'm sure the 5 weeks will go by faster than I expect, but right now it seems like an eternity away. Of course I have to look at the bright side of the situation: 1) More time we get to spend with Conner before he goes in for surgery 2) We will get to see him develop more with things like smiling and laughing and rolling over 3) There is comfort in knowing that there is a reason for this happening and that Heavenly Father is in charge and knows what is best.

Rescheduled...

2010-06-01T12:16:00.000-07:00

Sorry everyone, I should have made this post a few days ago...but Conner's heart surgery was rescheduled to this Friday. The hospital called me a few days ago and told me that they had just admitted 2 babies that both needed heart surgery more urgently than Conner, so they moved him to Friday. Even though it's only 3 days later, I was SO bummed about it. I had been mentally preparing myself and was focused on June 1st being the day that would change fix Conner's heart. I actually cried on the phone when she told me we had to r/s his surgery. But I understand that the other babies need it their surgeries done sooner than Conner. I know it's a good sign that his heart is stable and able to wait longer. I'm very thankful that it is still this week. I would have been totally sad if it was next week or longer. Sorry this update came late!

Bound to Happen...

2010-05-21T12:53:00.000-07:00

Well I guess it was bound to happen at some point that Conner would pull his feeding tube out! A lot of babies constantly pull out their feeding tubes, but we weren't worried about Conner doing that because he never pulled it out all 2 1/2 months in the hospital. Conner had been SO good about not pulling at his tube or really even getting his fingers up around his nose. Then it happened.

Conner was in his bassinet taking a nap and I made a phone call to order some home health care items. While I was on the phone, Conner woke up and started getting really fussy. So I picked him and swayed with him in my arms as I continued to make my order on the phone. Then I just happened to look down at Conner in my arms just a few moments later, and his tube was pulled out his nose like 10 inches! It freaked me out, and the poor lady on the other end had to hear me start crying and say that I needed to go because my baby just pulled out his feeding tube! I couldn't believe that it had actually happened! We had gone so long without a problem and now he had pulled it out! I don't think that he actually meant to pull it out-I think his long little fingers just happened to get hooked onto the tube and he moved his arm, and it pulled it out! He had no idea what was going on, it was actually pretty funny! He just was looking around, hanging out, just like normal, with this long feeding tube hanging out his nose! Poor little guy! I have to admit, I sort of had to chuckle at how he looked, so nonchalant, while I was crying and panicked. So I called Paul at work to tell him the news. He told me it was ok and reassured me that it would be fine. I called the pediatrician, and she called the hospital for me and set up an appointment to have Conner go in and have it put back in. I also have to admit that I sort of hoped that at some point I would be able to see Conner without a feeding tube because it would be the first time we would see his face with nothing attached- no tubes, i.v.'s, or oxygen stickers since he was born. OF COURSE our camera was MIA for the past several weeks, and so the time his feeding tube actually comes out, I don't even have my camera to take pics of him! But Paul was able to take some on his phone since it takes pretty good pics.

We went up to PCMC at 2pm that same afternoon, and they placed a new feeding tube. The new tube is much bigger than the original tube and takes up almost his whole poor little nostril! They have to place the tube in the radiology department because they have a live xray the whole time the tube is being placed to make sure it goes down into the correct spot (the small intestine). They got the tube all taped back up to his face, and we left, happy to have it done! Phew!

So we get back home and Paul goes outside to do yard work, and I head upstairs to do a little FB and relax from getting myself so stressed out about the whole situation. I thought Conner would be tired from the whole fiasco, but he didn't want to sleep, so I had him on my lap just hanging out while I checked me email, etc. Then after a few minutes I decided to get up and go play with Conner downstairs. So I stood up, gathered up his feeding tube in my hand, picked up his back pack that the food is in, and took a step forward. You wouldn't believe what happened! Conner started crying, I looked down at him, and realized all in the same moment, that I was stepping on his feeding tube, and it had pulled out when I took a step forward with him in my arms!!! Ahhhhhhhh! Are you kidding me??? It was one of those moments that you instantly wish was a nightmare and that you would wake up and it wouldn't be real. But indeed, it had really happened! I just made his feeding tube come out just 2 hours after it had been placed from him pulling it out!! I started BAWLING my eyes out, and went downstairs and called Paul in from outside. He came in, and I start rambling on through my sobs about how I just made Conner's feeding tube come out!!! Paul was so sweet about it. I felt so so so terrible about it, because I knew what he was going to have to go through again to have it placed again. Paul said that accidents happen, and that it was OK, and gave me a big hug. So I quickly called the radiology dept. at PCMC and told them the situation. They told me to come up asap (the dept. was "closing" for normal hours in 10 minutes and we wouldn't get there for 30 mintues) and they would put it back in. I was so thankful that they let us go right back up, instead of making us go through ER and having to pay an ER co-pay and have to be among germs, etc. The nurse and Doctor were so nice about the whole thing- they were the same ones who put it back in just hours earlier. They made us feel better, saying with some babies, they wouldn't even make it out of the room before the baby pulled it out again.

Needless to say, I have been extremely cautious about his feeding tube and where I step!!! I still can't believe Conner went 13 weeks without ever pulling out his feeding tube, and then it came out twice within hours of each other in 1 day!!! So that concluded the excitement for that weekend!

2010-05-17T17:40:00.000-07:00

Family Photo's by Smile a Bunch Photography

2010-05-17T16:41:00.001-07:00

We had Conner's first photo shoot taken last week, and I'm so excited with the results! One of Paul's friends from high school is a photographer, and she is the one who did our pictures. She was amazing! I couldn't be happier with the pictures! We had her come to our house to take them, both because we don't want to take Conner out in public yet so we can keep him healthy for his heart surgery in 2 weeks, and also because I love the idea of having pictures done in our home, among the things we love and how it adds an intimate touch to the photo's. I was so sad at first when I realized that we wouldn't get to have professional "newborn" pictures done of Conner since he was in the NICU. But I love love love the pictures and the age that he is at to have had them done. He was awake and alert during the session and it was fun to have him captured on camera at this age.
I highly recommend the photographer, and will attach a link to her blog so anyone can have her info to get in touch with her to hire her!

Conner only peed twice during the shoot, and actually was much more cooperative than I had anticipated! I thought he would be really fussy because he doesn't like when he is undressed, especially when it comes to being totally naked! But he was such a sweet heart, enduring 2 hours of being moved around and handled. He didn't even throw up, which I was so surprised about, since he usually throws up when he is moved around too much. I love how the photographer captured Conner's big beautiful eyes, his sweet, sweet face, and the essence of our family dynamic in the photo's.

http://www.smileabunchphotos.com/

http://www.facebook.com/photo.php?pid=30812491&id=1185811378#!/pages/smileabunch-photography/118789851470476

Date set for Heart Surgery!

2010-05-11T12:37:00.000-07:00

We have a date set for Conner's heart surgery! YAY! We didn't think that we would get a date set until his next cardiology appt on the 21st of this month, but the scheduling people called me this morning! Conner is going to have his heart surgery on June 1st. (we thought it was going to be more towards the middle of June, so this is great news because it's even sooner!) We are so excited for the surgery and that Conner will get to have his heart fixed. What an amazing blessing to live in today's world of medical advances and to see the incredible things they can do. The first Tetralogy of Fallot corrective surgery wasn't even done until 1944 (on an adult) and here they are now, able to go in and repair babies hearts, as early as the same day of birth! I feel a huge relief knowing that we have a set date for the surgery. It makes me feel much better knowing the date that Conner will go in and have his heart fixed in just 3 weeks!

2010-05-06T09:03:00.000-07:00

I've been meaning to give an update on Conner, and he is taking a nap now, so I will take advantage of the free time!

Conner was supposed to have surgery back on April 19th to have the nissen and g-tube done. His surgery time was 1pm, and at about 1:30pm, the anesthesiologist came to Conner's bedside and talked to us. He explained that he didn't feel comfortable in going ahead with Conner's surgery after evaluating his last few echo cardiograms. He said that the pressure around the pulmonary artery had increased with each echo, and he felt that it could be too great a risk to do an elective surgery. He explained that there was the chance that Conner could do fine with the surgery, but there was also enough concern about Conner having a TET spell during the surgery that he personally didn't want to go ahead with it. He then contacted the other doctors involved and they all agreed.

That same day the cardiology team decided to get a new echo of Conner's heart because it had been about 3 weeks since his last one. After evaluating the new echo and seeing that the pressures around his pulmonary artery had increased again, they felt that heart surgery definitely needed to be done first before the other surgery. Somewhere along the lines, cardiology had signed off on Conner and so they hadn't even been aware that he was going in for surgery! We believe that the anesthesiologist was inspired to look into the situation further, to discover that the surgery may not have been safe for Conner. His keen sense of what he felt comfortable with and with what he saw on the echo's, led him to make a decision that changed everything (for good, we believe!). The surgery was canceled and it was decided that Conner would have heart surgery first.

Originally, Conner was going to have heart surgery anywhere from when he was 4-6 months old. He should be getting his heart surgery done in about 3 weeks or so, so he will be about 15 weeks old, just shy of 4 months old. We felt really good about the decision to wait on the other surgery and about getting the heart surgery done first. Conner is seeing his pediatrician once a week until his heart surgery to make sure that he is gaining weight and growing well. He now weighs 9lbs, 13oz! (he was born at 6lbs, 2oz) so he is doing really well with putting on the weight he needs. I am still pumping, so he gets my milk, and we fortify it with Neosure formula, to get in extra fat, calories and vitamins to plump him up for surgery! It seems like a lifetime that I have been pumping, yet it's only been 12 weeks! I am so happy though that I can provide him with the very best nutrition.

I need to also write about how the decision was made to bring him home. After it was determined that Conner would be having heart surgery in the very near future, there was talk among the doctors about keeping Conner at the hospital until then. Paul and I felt very strongly about bringing Conner home for the few weeks before his heart surgery.

The biggest reason that the hospital wanted to keep Conner there was because of the type of feeding tube he has. Conner's feeding tube bypasses the stomach and goes down into his small intestine. This is to help with his sever reflux and aspirating. If he is not getting food in his tummy, then he can't reflux it up and then aspirate it. This type of feeding tube can be dificult for parents to deal with at home because you can't check for placement. With a feeding tube going into the stomach, (an NG tube), you can make sure the tube is in the correct position with a syringe and checking for stomach contents, etc. You cannot do that with an NJ feeding tube (into the intestine). This means that the tube could dislodge from it's correct position and you would not know until you experience vommiting or other issues. With an NG tube, parents can put it back in place themselves, but with the NJ tube, the baby has to be taken to the ER to have it placed again. It is not uncommon for babies to pull out their own feeding tube, and that was another concern about how easily it could come out. So there were big concerns about sending Conner home with us on his NJ feeding tube, and they rarely send parents and baby home like that.

We set up a "care conference" for the following day after his surgery was canceled. At a "care conference" they have people come that are involved with Conner in his different areas of care. The attending physician came, our primary nurse, the social worker, the nurse practitioner, and his occupational therapist. We met in a room to discuss the 'possibility' of Conner being able to come home for a few weeks before the surgery (although Paul and I were determined that if they had said no, we would have grabbed Conner and rushed out of the hospital anyway! lol). The Dr. talked about everything that would be involved with bringing Conner home and made sure that we were well aware what could 'go wrong' (tube coming out, ER visits, etc). Then he went around the room, and had each person there explain their opinion about the situation and if they felt like Conner should come home with us. I felt nervous because I didn't know what people were going to say, although I felt confident that they would say it was the right choice. Each person had something so positive to say about us and they all basically said that we have the ideal situation for Conner to come home to. They said very kind things about us as parents, and we felt so good to hear that they all felt confident in us and that the best place for Conner is to be home. So the decision was made to let him come home!! We planned to "room-in" one night (they have a family room that you can stay/sleep in) in order to make sure that we felt comfortable with all the equipment we needed and how to use it. They have a nurse that is assigned to your room, in case you have any questions during the rooming-in time period. The rooming-in went really well. Conner slept perfect that night and we learned how to use everything and it was actually pretty easy!

We got all packed up the next morning and we were so excited to be able to come home that afternoon! When we packed Conner into his carseat, in the room, he started crying and getting so mad. It freaked me out because I didn't want him to cry on the way home! We took him of the carseat for a minue and soothed him. Then he went back in and was ok. Then we loaded him into the car and he started crying again. Ahhh! So we pulled over in the parking lot, took him out and rocked him and soothed him. We were both so worried about him crying on the way home because if he gets upset enough and cries hard enough- that's when he can turn blue from his heart condition! We said a very fervent prayer, pleading that we could just get home without Conner crying! We put him back in his carseat and he stayed asleep! To say the least, I was a ball of jitters and nervousness on the drive home, peeking at him under the car seat cover every 2 seconds to make sure he was ok. Paranoid first parent! lol. I have never felt such relief as when we pulled into our driveway, safe and sound. We got Conner all upacked, took him into our room where we rocked him and spent the night just looking at him in awe and wonder. We finally had our sweet little baby boy in our home!!!

Conner has now been home for 13 days. It has been an adventure! It has been stressful, and wonderful, nerve-racking and the best! We have had to take Conner back up to PCMC to the ER twice. The first time was because he had been throwing up stomach vile/mucous for a couple of days, really badly. When we took him in, they took an xray and said that his tube was in the wrong spot, and that we had to come back the next morning to have a new tube placed. So we went back the next morning and the Dr. took her own xray before pulling his tube out, and she said that the tube was in the perfect place! The second time was because his feeding tube got blocked and so he wasn't getting fed. We went in at 2:30am after several attemps at unblocking it ourselves with "unclogging" stuff they gave us in case it did get stuck. Conner hasn't been throwing up as much now (got some new medicine) and so we are thankful for that!

Conner loves to hear Paul and I sing to him. He coo's and makes the cutest sounds, and his eyes get big and wide and he gets this adorable little half smile. He loves to grasp our fingers and look at us. He likes to 'talk' to the little animal's that are on the fabric of his bassinett. He loves tummy time and this little musical stuffed bee that we have. Conner has just learned that he can chew on his hand and he is becoming more aware of the tube coming out his nose, and will rub his face incessantly against our chests to try appease the tickling sesation I'm sure it causes. Conner sleeps wonderfully through the night and is so accustomed to loud noises from being in the NICU for so long, that he doesn't wake up for anything! (we would have trained him that way anyways for noises, even if he hadn't been the hospital, but they did it for us, thanks!)

Conner has the perfect little personality and spirit to go through all of this. My mom was with me the other day, and she said how faithful Conner must have been in heaven, when he chose to come into this world into an imperfect little body that would need fixing...that he was so valient because he knew he would have to deal with so much medicine, shots, i.v.'s sedation, throwing up, reflux, feeding tubes and open heart surgery. When I think about complaining about not feeling well, I think about those first moments of Conner's life, when nobody knew that he was using every last ounce of energy to breathe and survive, or when he has had blood transfusions or other medical procedures which left him feeling weak and sick...I think about what he has been through and instead of complaining, I am so thankful for my health. And when I can't find anything to eat or I'm bored with food in my pantry, I think about Conner, and the fact that he doesn't even get to taste his food. He doesn't have the luxury of feeling full and satisfied after a feeding, because he gets fed 23 hrs a day through his feeding tube down into his intestine. Conner makes me stop and realize all the many wonderfu land incredible blessings that I have in my life and how blessed I am. He is the most perfect blessing in our lives and has helped us to count our blessings and know that Heavenly Father has given us all that we have, and all that we are. He gives us trials to humble us and teach us. He allows us our agency so that we can learn to more fully live and decide who it is we want to be, and how we want to use our lives to affect others. Trials help to remind us what humanity is about and how we need to serve and love others. We love Conner so much and we are so thankful for him and all that he teaches us. He truly is an instrument in Heavenly Father's hands to help remind us of Him in our everyday lives.

2 Thumbs-Up for coming HOME!!!

2010-04-25T18:25:00.000-07:00

2 Thumbs-Up for being home & lovin it! Sleeping soundly in the bassinet.

Daddy and Conner just staring at each other. Mommy and Conner in his 'going-home' outfit.

The wife of the Dr. that I worked for made this darling hat for Conner. It is supposed to
fit him better this fall, so I'm excited to use it then. I think it's so adorable! I just had to
put it on him and get some pics!

Our last family picture at Conner's bedside before we "roomed-in" for the night at the hospital
to have a 'practice' run-through with all the equipment for Conner that we would have at home.

Conner resting up for surgery

2010-04-18T21:59:00.000-07:00

Conner resting up for surgery tomorrow!

Sleeping with daddy

Sleeping with mommy

Conner is scheduled to have his surgery tomorrow afternoon. He is going to get his feeding tube placed and the nissen procedure done. Both are fairly common procedures, which is comforting, but of course we are still a little anxious about it because it's "surgery". They have to make 5 incisions for the feeding tube and another incision for the nissen. Our sweet little Conner will be all hooked up again to oxygen and I.V.'s and medicine. He has had a rough few days this past week, so we are praying that his body will handle the surgery well and that he will be able to make a quick recovery. The surgeon said that it takes around 10 days to recover, but I just keep telling myself that it will take about 3 weeks so that I'm not dissapointed if it's longer, and will be pleasently surprised if indeed it is shorter recovery time.

Conner has such an amazing little spirit. He truly is the sweetest baby. He rarely cries, and is consoled very easily when he does. His little body has been through so much and yet he just keeps the most relaxed, laid-back disposition. The nurse that put in his I.V. today said that when she was getting it ready, Conner cried like he knew what was coming, but then didn't make a sound when she actually put in the I.V. and said that he just looked up at her with his big blue eyes...and then when she had to put his hand on a little flat board to keep the I.V. in, then he cried. I could'nt have asked for a more precious, perfect little baby to have to go through all of this with. He truly has made this journey so much easier. He is full patience, joy and the Light of Christ. When he looks at me with his big, beautiful, alert eyes, I feel peace and hope and know that everything is going to be just fine. We know that Heavenly Father is watching over him and comforting him. We are so blessed so have Conner as our son!

Surgery coming up...

2010-04-15T22:17:00.000-07:00

Conner is going to have surgery this coming Monday to have his "G-tube" placed and also a procedure called a Nissen Fundoplitation. Conner had a PH probe test done last week which measured the acidity of his reflux and the number of times he refluxed in a 24-hr period. The results came back that Conner was pretty much refluxing constantly. With this procedure, they basically wrap the top part of the stomach around the bottom of the esophagus. This acts as a muscle and prevents Conner from refluxing and throwing up. This will protect him from aspiration and getting fluid/food into his lungs. Conner "silently" aspirates and although his doesn't eat anything orally right now, when he refluxes, the reflux sometimes aspirates, which is very dangerous for him. The "nissen" will be a very good thing for him.
We will be using the "G-tube" as his only feeding source for the next month or so. The goal is to gradually build him up on his oral feedings once he passes the swallow study. We hope that Conner will be able to nurse/bottle-feed exclusively after a few months of having the g-tube. The g-tube will remain in place until after his heart surgery, because he will need a feeding tube again for a bit until is he strong again. It is projected that his heart surgery will be when he is about 6 months old.

Conner is getting so much more facially expressive! It's amazing and wonderful, and just about the cutest thing you could imagine! The past 3 days when I have arrived at Conner's bedside, I put the side of the crib down and put my face right above his and start talking to him. Just in these past couple of days, he has totally started to respond to me through his facial expressions and eye contact and smiling! It's like he really starting to be excited when he see's Paul or I, and it is just so fun! It's amazing the progress he is making. It seems like just 2-3 weeks ago he was still sleeping a lot and just hanging out, and then like boom, all of a sudden he is being awake for a good portion of the day, and being so much more alert and and learing to use his face to express himself. I can hardly believe that Conner is going to be 9 weeks old tomorrow! Happy 9-week Birthday Conner! We love you!!!

Easter! (a few days late)

2010-04-06T20:26:00.000-07:00

This is our little family Easter picture! When we came to visit Conner at the hospital, there was an Easter basket waiting for him! It was so cute! There was a onsie, book, stuffed bunny, blanket and candy. The generosity of others is amazing, and it is a wonderful blessing to feel the love from the service that we have received in so many different forms.

There have been days when we have been driving home from the hospital, exhausted and hungry, and we get a phone call from a ward member or neighbor who 'happened' to have extra leftovers from their dinner, or who just decided to make us dinner. I have had strangers say they would pray for our baby, and so many family and friends who have fasted in Conner's behalf. We have experienced the charity of others and have been incredibly blessed through this difficult time. We have the sweetest baby who reminds us daily of the love of our Heavenly Father and that he is ever so aware of each of us and our heartaches and joys.

I see the innocence of Conner and I know without a doubt that he came into our lives with his special little heart for a purpose. We have learned more about patience, compassion, and empathy in the past 8 weeks then we have our entire lives. We have learned that when our hearts feel heavy and we feel discouraged, to realize that there are many that have it much harder. We have been the recipients of the most genuine kindness and have felt true love from so many wonderful people.

I know that the Savior gave His life for us because He loves us. I know I can turn to Him and that He can teach me to lay aside my worldly desires and weaknesses and become more like Him. I know I can reach my divine potential through relying on the Savior to guide my life and show me how to more fully love and serve others. We can live again because the Savior gave His life for us. Happy Easter!

"Ta Da!"

2010-04-02T22:23:00.000-07:00

Mmmm, I just LOVE this adorable little boy!! I really wish I was with him right now and could snuggle and cuddle him and kiss his chubby little cheeks! He makes the cutest little faces and pulls his mouth in the silliest little ways. And he loves to balance his bottle on his head too- Daddy taught him how to do this.

Conner found his Thumb!

2010-04-02T07:37:00.000-07:00

Best Nurse Ever!

2010-03-30T19:21:00.000-07:00

This is Vicky, one of Conner's primary nurses. A primary nurse means that we asked her to be Conner's nurse whenever she is working, and she accepted. We were so happy when she accepted the invitation! From the first day that she took care of Conner, we knew we wanted her to be one of his primary nurses. She raved about how sweet our baby was and there was something so special about her. We feel so confident and so good when we know she is with Conner. She loves Conner, and we know that he can feel her love and that it makes a difference in his care. We are so happy knowing that even when we are not there, that if Vicky is taking care of him, he is being adored and held and loved. Every time we are there with her, she says the kindest, sweetest things about our baby (and what parent doesn't love that?!) and she is such a genuine person!

The other day when I was at the hospital, I went to the parent's lounge for a break, and when I came back to Conner's bedside, Vicky was holding and rocking Conner. (When I had left, he was sleeping in his bed). It was just a simple act, an easy task, but it meant the world to me. It meant that my baby was being taken care of in that special, maternal way that nothing beats. It meant that he didn't just have a nurse that was recording his daily activity, charting medicines and doing her job, but that she truly went the extra mile in providing my sweet little baby with love and affection.

Today Conner had another Swallow Test done. It showed that he has improved in a lot of ways since his last swallow test that was done 10 days ago, but he still didn't 'pass'. The nurse practitioner that came and talked to me today about the swallow test results put a real downer on the situation (didn't focus at all on the positives of him improving) and when she left, I felt sad. I felt like my baby did the best that he could and all she could say was that he 'failed'. My heart felt heavy. I was holding Conner in my arms, and he was sleeping so peacefully. I looked at his little face right next to mine and rubbed my cheek against his soft head. Vicky was standing next to me, at her computer making some notes, and when the nnp left, she turned to me and said how sorry she was, and asked me if I was ok. I couldn't even answer as tears rolled down my face, but I tried to mumble an "I'm o.k." Then I heard her sniffle, and I looked up, and she was crying with me! We have such an amazing nurse! We love Vicky and we are so thankful for her and her remarkable way of being not only the best nurse for our baby, but a wonderful support to myself and Paul.

"This is the favorite part of my whole Day!"

2010-03-27T08:34:00.000-07:00

Paul meets me at the hospital every day after work. He is so happy when he gets to pick up our precious little Conner boy and be with him. Everyday, when Paul is rocking him and holding him, he says "This is the favorite part of my whole day!".

I think Conner has Paul's big beautiful blue eyes...and super long eye lashes! Why is it that boys always get that? No fair!
I cannot wait for when we have Conner home and we can play with him all we want. Yesterday was Conner's 6-week birthday! :) It is so bizarre to think that Conner won't even make his debut to people until he is 2 months old! (he still has about 2 more weeks in the hospital). Paul and I love Conner beyond belief. He is just this incredibly sweet little baby who hardly cries, and has been through so much in his short little life time. He brings us so much joy and we are so blessed to have Conner in our lives!

Wonderful Doctor

2010-03-25T19:21:00.000-07:00

Today I had my 6-week appt. with my obgyn. When he came into the room, he asked me how I was, and we chatted a bit. Then he asked about Conner, and I started crying. I usually don't cry when people ask me about him, but today I was extra emotional. I started to tell him "Well, he is still up there (referring to the hospital), and he is having some issues with eating.." and my Doctor got a surprised look on his face, and said "Wait, what do you mean, still up there?". It turns out that my doctor was not aware that Conner was born with a heart defect, since it wasn't discovered until a few days after he was born. So when I explained to my doctor that Conner has Tetralogy of Fallot and that he has been in the hospital since he was born, he was stunned. He said that he had had no idea that I didn't have my little baby at home with me this whole time, and that somehow/somewhere the lines of communication didn't get back to him about our situation. He said he felt so bad that he didn't know and sincerely apoligized...while he was saying this, my doctor got teary-eyed, which of course made me cry more. I felt such a genuine concern from him and that he really cared about me and my sweet little baby. I have never felt that type of kindness from any other doctor my whole life. I would highly recommend him-his name is Dr. Layne Smith and he is at Alta View Hospital.

2010-03-21T14:55:00.000-07:00

This was the first time that I did "skin to skin contact" with Conner. The nurse that suggested it was so cute and excited for me to try it! She talked about the emotional bond that it creates and also explained that Conner can actually get antibodies from me through doing this, which can benefit him. It was such a sweet experience! I LOVED it and I'm sure that Conner did too! As the nurse laid Conner on my chest, I felt an overwhelming sense of purity and innocence from Conner and it brought me to tears. I felt his warm body against mine and could feel his precious breathing softly on my chest. After just moments of being placed on my chest, his heart rate slowed down and his oxygen level went up- wow! It truly was a special bonding experience for us.

2010-03-20T18:48:00.000-07:00

I just had to post this adorable video of Conner staring at me! I was holding him, and then I looked down at him, and he was totally staring at me with his big beautiful eyes! So Paul grabbed the camera, and recorded him just staring at me! I love his big sweet eyes, the wrinkles on his forehead, his little open mouth, and everything about his cute face in this video!

2010-03-14T09:04:00.000-07:00

Wow...this is definitely one of those times where I wish I had kept up on this whole blogging thing... now I have tons and tons to write about with the birth of our precious little Conner boy, and everything that has gone on since. Just the super super basics for a minute, and then I hope I will be able to write out the details in the next few weeks.

Conner Paul Staten was born February 12, 2010 at 9:57pm. (He came 3 weeks early). Weight was 6lbs 2oz, length was 17 1/2 inches long. Conner has blond peach fuzz on his sweet little head and his heart defect is called Tetralogy of Fallot. He will have surgery to correct this defect when he is 4-6 months old. We did not know about his heart condition before he was born. Conner has been up at PCMC for 4 weeks, 1 day, but we are hoping that he gets to come home this weekend!!! He has to be able to take all his feedings orally and then we can bring his home! (right now he is taking about 1/2 from the bottle, and 1/2 through his feeding tube). We just started working on breast feeding with Conner, and I hope he can continue to get the hang of it!!!

Ok, that will have to do for now. Hopfully I will be back very soon to continue the story. :)

2010-01-06T20:59:00.000-08:00

No specific reason for me to post a wedding picture, other than I was just
thinking of my cute husband and when we got married. And that we are a
mere 8 weeks away from having a BABY that we created together...
WOW

2009-12-11T08:53:00.000-08:00

BABY

2009-12-11T08:22:00.000-08:00

So I can hardly believe that I only have just under 3 months left before we have a BABY!!!! When I really think about it, it pretty much blows my mind that I'm going to be the mother of a tiny little infant who will depend on me for food, comfort, love and pretty much life! I'm so thankful I picked out a husband who is AMAZING with babies/kids. I will need him so much. The first 4 months of my pregnancy went by pretty slow because I didn't have anything to 'show' for being pregnant. I didn't really start showing until around 19 weeks (at least for other people to be able to see). We were able to find out what we were having at 18 1/2 weeks. It was sooooo exciting to find out!! Both our families, with the exception of Sheryl, thought we were going to have a girl. If we were going to follow the pattern on Paul's side of the family with all 12 grandkids, (boy girl boy girl boy, etc) we were 'supposed' to have a girl. But of course, here comes the only daughter-in-law and she breaks the cycle that has been going for almost 16 years. Sorry! The nurse had a really hard time finding an angle that she could tell what we were having. In fact, she looked for about 10 mintues and still couldn't tell! So she first did some measurements and then had me lay on my side to see if she could find a better angle. Sure enough after just a minute, she told us we could start the drum roll again, and to announce what we were having, she said, "Well, it has out-door plumbing!" We laughed and of couse knew that that meant we were having a little BOY!!! The nurse was using a new 3D machine that could switch back and forth between a regular looking ultra sound and the new 3D images that they can get, like the pic I posted with this post. It was amazing to see him moving around, kicking his little legs around and waving around his arms. He was tucking his little face away from the camera, being shy, but it was so awesome to see his sweet little body. I wish I could have another ultra sound to see him at point now. According to the baby info I get sent, he is about 2.5 lbs, and about 15 in. long. I feel him moving daily. He rarely moves during the day, and even when I lay down to sleep he doesn't usually move around too much. It's mostly when I'm 1/2 way sitting/laying down when he decides to really start rolling, and playing and kicking. I love love love feeling him move! I think it is so cute!! I love watching my bare stomach when he is moving. Paul really likes to feel him move too...it's just a little more strange for husbands I think because they can't feel what it's like and to them it's like an alien moving around in their wives stomach! lol. We have so much fun watching my belly grow. I love my changing body and I truly think its the most amazing miracle to be able to have another little human grow inside my stomach!!! WOW! I'm so thankful that I have the opportunity to bring a baby into this world and give him a home of love and where he will be raised in the Gospel. This Sunday I will officially be in my 3rd trimester and we still have so much to do!!! We don't have a name picked out, we don't have the baby room even remotely done, we don't have the crib, and in fact, I have bought nothing having to do with a baby! lol. It will get done though of course. Just under 3 months left to do it all.

2009-11-21T17:39:00.000-08:00

Paul and I celebrated our 4 yr Anniversary this last September!! We love being married and having so much fun together! We both agree that marriage only gets more fun, more rewarding, more exciting and better and better with time!!! I truly feel that I am married to the best man in the entire world and universe for me, and that he completes me and makes me so much of a better person, wife and friend. I cannot imagine life without Paul and his generous, ever-giving, loving personality. He makes me laugh when I'm mad, sad, or just whenever we are hanging out! He is the funniest person I know and definitely the hottest guy I know!! Since the day I met him, he has shown me what it is like to have Christ-like love for others, and to be caring and non-juding. I knew he would be a wonderful husband, and wonderful father. Another day I will write about how we met and our dating story.

2009-11-15T15:00:00.000-08:00

2009-11-15T14:57:00.001-08:00

Hmm, I wonder if this will post...I have never attempted it before...