It is time yet again for another update, and I am thinking this will be a lengthy one. After battling resperatory rate and feeding issues for the past several days (weeks?) the docs have come to the conclusion that Katie just breathes too fast for them to allow us to try and bottle feed her at this time. Since her current feeding tube (an NG tube that goes in through her nose to her stomach) is too easy for her to pull out and not safe for us to put back in when she does, they have decided to surgically implant a more permanent feeding tube called a G-J tube. Part of this tube will go directly to her stomach and part of it will bypass the stomach and rest in her small intestine. They have a few reasons to want a tube directly to her small intestine. First off, we have discovered that the medicines Katie is on upset her stomach and lead to bouts of inconsolable crying and throwing up. Mixing the medicine with food and delivering it by a pump over a half hour has helped this tremendously, but is not a viable solution for home. The J tube in her small intestine will allow us to put all of her medicines except her Aspirin past the stomach, thus eliminating the chance that she will throw them up. We will also be able to ensure that we can get food into her without her throwing it up, which will help her to grow and put on weight. The other part of the tube (the G-tube) will lead to her stomach. This will be where we give her Aspirin (since it will have to be crushed and the particles will be too big to safely go into the other tube without clogging it. We will also be able to put food directly into her stomach so that she can have the feeling of being full and so we can continue to work on getting her stomach to hold and digest the volume of food that she really needs. In addition, we will be working with speech therapists to continue allowing Katie to practice sucking on a pacifier and other oral stimulations so that she will eventually, hopefully, be able to take a bottle. The fact that Katie still has unresolved feeding issues is terribly disappointing, but if this is what we have to do in order to be able to bring her home, then we will do it joyfully.
Also, Katie has been in the hospital soooo long that several important dates are fast approaching. Tomorrow, April 16, Katie will be 7 weeks old. The following day (Tuesday) will be exactly six weeks from Katie's closure date, so she will be able to start having tummy time. Physical therapists will be working with us on this and we will hopefully be able to help her catch up to where she should be developmentally. A week from tomorrow (April 23rd) will be six weeks from the date that Katie was started on Enfaport (a special fat-free formula) due to Chylothorax, a complication that caused the fatty fluid that was accumulating around her lungs. On that date, her lymph nodes should be healed up enough so that she can switch back to breast milk without accumulating chylous fluid around her lungs again. We are excited for her to be able to start tummy time and to be able to have breast milk again, which is not only best for her nutritionally, it will also help her immune system. Anything we can do to help her avoid getting sick and being put back in the hospital is well worth it.
Emotionally we are beyond ready for Katie to come home. It has been very difficult to remain joyful throughout the past two months and there have been several days that personally, I am sure I have not been a pleasant person to be around. There have also been days that I have not wanted to be around anyone but my husband and my baby. There have been days that I have had what I call "taking baby home jealousy" and it was very hard to watch other mothers taking their babies home when our child is still in the hospital. I have had to ask forgiveness for some of the thoughts and feelings that I have struggled with and I really debated with myself whether to include this in my post or not. We have tried really hard to stay upbeat and positive in our posts, but I felt that I needed to say something about it for a couple of different reasons. First of all, I want to thank the people who have put up with me when I wasn't the greatest person to be around, especially my husband who has been so strong every time I have let my weakness get the best of me. Secondly, for any families that might be reading this blog who have gone through, or are going through, a similiar experience, I want them to know that whatever feelings they are having are normal. It is an emotional roller coaster. Some days, you will see how much progress has been made and your heart will soar. Other days, you will not be able to see past the roadblocks ahead and you will feel utterly lost. God is with us through it all. He has a plan and He will bring us through.
In the week ahead please pray that Katie will come safely through the surgery for her feeding tube. Another surgery means that she will be going back on the ventilator. They tell us that she will probably not be on the vent near as long as the first two times, so we hope that this is the case. We will post a short update when we find out exactly which day this week they will do the surgery.
"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be." Psalm 139:14-16