Miracle Baby

Today is Day 33 in the NICU. Bryan and I have been at the hospital once or twice a day for the past 38 days. Personally, I can’t wait for the day when Jill can come home. Now when I want to see her, I have to make arrangements for a baby sitter for Katelyn, get both Katelyn and myself ready, drop off Katelyn or wait for a babysitter to come, drive 20 minutes to the hospital, park, take two elevators, drop off my things at a locker, check in at the NICU, and scrub in. No matter how long I stay, it is never long enough. I love holding Jill and seeing her bright eyes. Sometimes the nurses put a bow in her hair. Everyone comments on how much hair she has and how alert she is. When she hears a new voice in the room she often turns her head to hear the voice. She seems pretty good-natured and content. She rarely cries. And the doctors and nurses are absolutely amazed at her progress. While we are worn out, we are thankful that Jillian is doing remarkably well.



We have been mostly trying to live day by day. Occasionally, though, we are forced to look ahead and try to picture what the upcoming weeks, months, and even years will be like for our family. On Wednesday, April 16th, we had a Patient Care Conference with Jillian’s doctors, nurses, social workers, etc. It was one of those times where we have been forced to think about the future whether we are ready or not. We were hoping the meeting would be more about discussing timelines for when Jill would be released from the hospital. Instead, the meeting was about the many complications that CDH babies tend to have after they are released and later in life. One of the huge concerns is that her left lung is expected to slowly develop over the next 10 years. Yes, that is right, 10 years! With that in mind, Jillian will be extremely susceptible and vulnerable to respiratory illnesses even into late childhood. Basically, we were told that we can’t allow anyone sick to be in our home. We need to be extremely diligent in hand-washing. We should not pass Jill around to be held by others. She should not go to the church nursery for at least a year or more. We were also told that our family should all receive flu shots in the winter and Jillian will need to have an RSV (Respiratory Syncytial Viras) shot each month during the cold/flu season. During the meeting there was a lot of discussion on how important it is to find a pediatrician right away and have the pediatrician contact our insurance company to make sure Jillian is covered for the RSV shots. I kept wondering why this issue was brought up a few times then I found out that the reason it is such an issue is because each monthly shot costs $1,000. Side note: now that we are starting to see hospital bills, I have never been so grateful for the insurance phrase “out of pocket maximum.”


I’m afraid we will have to be a bit secluded especially in the winter months. With Katelyn we took nearly ten round-trip flights with her before she was two. With Jillian we are not allowed to fly for at least the first year. This is due mainly to her small lungs not being able to handle the change in air pressure on a flight (exposure to germs is also a concern). We were also told that if we have people over or host anything at our house to try to have outdoor parties to keep the home as germ-free as possible. With all of these concerns about germs, that is why you might see us freak out a bit if someone sneezes or coughs near us. A simple cold may mean a trip to the emergency room and re-hospitalization for Jill.


Some of the other concerns addressed in the meeting included reflux issues, growth delay, neurocognitive delay, and possible hearing loss. Basically, once Jill comes home we will have numerous doctor visits to check on her progress and make sure there are no other complications.


Feeding right now is the big issue. It is definitely harder than I expected. But when I look at her progress I am amazed. Two weeks ago the nurses started adding 5ml of breast milk to her 5ml of pedialyte. The following Monday they started giving her all breast milk (10 ml or about 2 teaspoons). It was such a tiny amount, but they have been slowing increasing her feeding by 4ml every 12 hours until she reached 66ml the other day. She has problems with reflux so she often spits up or throws up her food, but she is still doing well considering her stomach and intestines were once in her chest. On Tuesday (April 22nd) of this week, I was able to breastfeed her for the first time. On Wednesday, they decided to take out her IV from her wrist. And I just learned that today they took out her feeding tube that was in her nose as well as the oxygen monitor on her foot. Now she just has the monitors on her chest remaining. Since Jill is now without the IV penetrations through her skin, Bryan and I were able to give Jill her first tub bath on Friday night.


I am actually shocked that they took out her feeding tube. It has been a challenge to get her to even drink from a bottle. Hopefully, she won’t lose weight this week. The last few days they have been adding some formula to her bottles of breast milk to increase her caloric intake. The doctors and nurses think that she is burning more calories than the average baby since she is still healing from her surgery and working on growing her lungs as well as struggling to breathe from underdeveloped lungs.


While Jill’s care is still complicated, we feel so blessed that she is making amazing steps toward coming home. Every breath she takes is truly a miracle.


Shortly after Jill was born, my friend Virginia who lives in Italy emailed me to say that on the day that Jill was born her Bible study was studying John 9: 1-3. She said she couldn’t help but think of Jill as she read the verses. (John 9:1-3) As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.”