Spending a few days in a children's hospital will teach you a few things; things about yourself, your relationship with your family, and especially your relationship with God. A good friend told us that human suffering can be compared to a gas pumped into a room. It doesn't matter how much gas is pumped in, or what kind it is, it will expand to fill the entire space. I've really learned the truth of that this week. Our suffering over Jack's surgery is every bit as consuming to us as it is to the mom we spoke to in the surgical waiting area who was here because her little guy had back to back ear infections. This hospital has been a holy place to me these past few days. I've learned so much about compassion and what it means to care for people you do not know. It is such a humbling experience to have your life put into perspective. As we've been in the ICU we've spoken to parents who have to take their children off of life support, parents who's children have to have open heart surgeries every year, parents who's kids have been abused by some one. I've walked these hallways and noticed the rooms with babies who have no visitors, no one to stroke their head and sing to them when the wake up and are frightened. My life has really been put in perspective. I've been taught so much about service and compassion as I've watched nurses stand on their feet for 12 hours and never leave Jack's side. I've learned so much about gratitude as I now have an added appreciation for the blessings of living in a day where we have the technology to accomplish open heart surgery on a six month old. I have such appreciation for Jack's surgeon who was so incredible. He is such a busy man and has personally checked on Jack six or seven times since his surgery. Most of all I've learned that we are truly blessed, not only with the good things in our life, but for the challenges we have been given. This has been a rough experience at times but I am in such awe that Heavenly Father knows exactly what we can handle and what Jack is capable of handling. I have such a testimony that he has guided the actions of every one helping Jack these past few days.
Okay, so on to the juicy stuff. For those of you who do not know, Jack was born with a congenital heart defect called tetralogy of Fallot. Below is a diagram comparing what Jack's heart looked like compared to a normal heart. Basically he had a hole in between his right and left chambers (called a ventricular septal defect or VSD) which confused the flow of oxygenated and de-oxygenated blood. This confused blood then went into his pulmonary which was narrowed. Because the valve was narrowed the right side of the heart had to work harder to pump the blood so the muscle on the right side thickened more than the left side (just like if you were to lift weights with your right arm only and never to anything with your left). Without surgical treatment the chances of Jack living until age 30 were about 6%. Not good enough for us, so surgery it is. So, long story short the surgery was to patch the hole between the right and left chambers so that the blood would not confuse, and to widen his pulmonary valve so that they right side of the heart would not have to work so hard. There was a chance that Jack would have to have a replacement valve, which would have meant more of this surgery every 10-15 years. BUT the surgeon was able to salvage his valve by cutting slits and sewing in strips of gortex which his tissue will cover as he grows. Hopefully this means one and only one surgery for our little Jack. He will have to have life time check ups with the cardiologist to make sure that his repair is functioning as it should. But in the grand scheme of things that is no biggie.
The day before we had his surgery we had a 7 hour day at the hospital doing pre-op. The worst part of that entire experience was that they had to draw blood from Jack. Since he is so little and his veins are so tiny, they had to draw it from the very visible veins in his head. It sounds as bad as it was. They had to stick him three different times in his head before they got the minimum amount of blood they needed. It only took about ten minutes after that before we got him all calmed down and he was all smiles in no time at all. The day of pre-op was filled with other things like chest x-rays, meeting the anesthesiologist, nurse practitioners, surgeon, and getting a tour of the ICU. Every one we met was very nice and we left feeling like Jack was going to be in very capable hands. That night Jack had a beautiful blessing given to him by Gordy and Jack's grandpas.
The day of surgery we woke up at 5 AM. Jack woke up in the most precious of all moods. I sure love my little guy! We left the Ronald McDonald House and walked to the hospital to get him checked in at 6AM. Then we sat with him while the nurses checked his vitals and we waited for him to go back for surgery. This part got a little icky. Jack was extra tired from waking up so early and it was so close to his surgery so I couldn't feed him and he was getting super hungry. Luckily, Gordy was able to work his super dad magic and he got Jack to fall asleep for most of the waiting time.
This is Jack in his girlie hospital gown waiting to go back. They didn't have any thing more suited for a man child, so he ended up with pink and orange Nemo. He didn't really care that much. When the nurse came to get him he was so calm. He didn't even fuss when we handed him off to the nurse. Gordy told the nurse, "Lady, you better make a run for it before someone looses it." I think we were more worried about loosing it ourselves. We watched her round the last corner before they disappeared out of our sight. Then it was just a waiting game. We got updates every hour on the hour about how things were going with the surgery. Some how, the time flew by. The surgery was scheduled to last for six hours, but ended up finishing in five hours. Yet another miracle. I'm not joking when I say that our entire experience has been a miracle so far. I was surprisingly calm the entire day. I know I had an added measure of the Holy Ghost that day reassuring me that everything would be okay. I had an over whelming feeling that they would be able to salvage his valve and spare him from multiple surgeries in the future. I just felt like the day of surgery was the day Heavenly Father and Jack's surgical team were going to save his life. Such a blessing to know we had so many prayers for Jack and for us. I felt the power of prayer all day long and I still continue to feel it now through Jack's recovery.
Another miracle is that Jack has responded so well to the surgical treatment he has received. They told us to expect Jack to be on the ventilator over night, but he was doing so well that they were able to remove it before we were even allowed to go back and see him! It was such a blessing to see him breathing on his own. Some of the biggest problems we have encountered have been very minor when we are speaking of big picture things. He had a reaction to the tape that was holding the dressing onto his incision, he's been constipated and very uncomfortable because of gas pains, and we found out that tylenol with codine makes him throw up. Overall, those are very very minor obstacles, even though it breaks our heart to see him hurt in any way. Dr. Turrintine, Jack's surgeon, even told me this morning that Jack is the poster child for how they want some one to react to surgery.
It's the little things now that are binging us such joy and comfort. Feeding Jack a bottle was such a relief. My arms have been aching to hold him and last night at close to midnight I was finally allowed to rock him to sleep. Man, that felt good for the both of us. Now we are having fun watching him as he has a free hand to play with toys and smiles at us occasionally when we read him his favorite books and play games with him.
It's pretty intense how many medications, tubes, and machines Jack's care has required. But, he is currently not hooked up to any i.v.'s fluids. Baby steps mean so much to us!
Jack was a little swollen, but he is mostly back to looking like his normal self now. When he was swollen and his mouth was dry he would make these really cute duck lips at us. He doesn't even know how cute he is!
This last picture is of Jack Saturday morning, one and a half days after surgery. Isn't it a miracle how quickly he has bounced back?!
Things here are going great. Jack is ready to leave the ICU and go up to the Heart Center. We are just waiting for a room to open up for him. Thank you so much to every one who has prayed for us and has sent their good wishes and positive thoughts our way. We love you all and could not have made it through this experience without your love and support. Thank you a million times over!
8 comments:
What a beautiful testimony of faith. Through Payton's trials with health we learned a hard lesson- that Heavenly Father loves your son more than we can as parents. He is in charge, His will will be done. Whatever happens is for your childs' own good. It is hard to turn your son over, but as you've seen there is sweet peace in surrendering. May Heavenly Father continue to bless your little Jack and your family. Love, Jenny Newman
What a trooper! Well, all of you really. I'm glad things went so well with the surgery- we've been keeping you guys in our prayers daily! The hardest part is over!
I'm so glad everything went well! i can only imagine how hard that would be! What a good testimony, I had tears in my eyes the whole time I was reading it. You guys are in my thoughts and prayers.
SOOO glad to hear that things went well and continue to go well! Please let us know if there is something we can do for you ... can we bring you dinner? Good luck this week - keep us posted!
What a precious little boy! So filled with joy for you guys that things are going well! Thank you for sharing your experience!
Jack's the man! Love that kid. All smiles. Can't wait to meet him. Very relieved to hear all worked out so well. Crazy the things life throws at us. Its even crazier how much we learn from it all. You guys are great. Little does the poster child of heart surgeries know that he is the son of the Lib Square poster child marriage:)
Great news! Great post. Thanks for sharing your heartfelt testimony.
Dear Jennifer, Somehow I've never read your blog or knew the whole story of your baby's health problems. Reading his,your and your family's story now is such a call of praise! I knew you would write something one day - I bet neither of us thought it would be about your baby's heart. My how you have grown! Not that kind of "wow you've grown" because you are taller or more mature looking - but the kind of "grown" only a woman can do as a mother - it shows in your words, it shows in your pictures and it leaps off the screen in your emotion. To say "I'm proud of you" may not mean much - but from one mother to another "You are an amazing woman"! I'm adding Jack (and you)prayers he sure is a lucky boy to be yours (and that he got his heart fixed too). Love, Mrs.Ricks
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