Tuesday, June 7, 2011

'Heart Mom' Luncheon


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.


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.


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.


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!



The beautifully decorated room!

Monday, April 18, 2011

Videos for your viewing pleasure

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.  





Sunday, March 27, 2011

Coincidence or Tender Mercy of the Lord?




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.

Thursday, February 17, 2011

Got Milk?

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?

Sunday, January 16, 2011

When life hands you a miscarriage

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.