Friday, May 21, 2010

Bound to Happen...

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!

Monday, May 17, 2010

Family Photo's by Smile a Bunch Photography

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.!/pages/smileabunch-photography/118789851470476

Tuesday, May 11, 2010

Date set for Heart Surgery!

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!

Thursday, May 6, 2010

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.