Thursday, July 26, 2007

Bili, Bili, Won't You Lose That Number

Do you remember that Phil Collins song from the 80's? Actually, it was Don't Lose That Number. Since Sunday evening (the last post), we have been on an extended, emotional roller coaster ride. Monday, the medical staff thought that the high bilirubin level was due to breast milk jaundice. So we switched the feeds from breast milk to formula. But on Tuesday after 24 hours of formula, the bili level only dropped from 17.8 to 17.2 Not the large decrease we expected with the feeding change. However, the doctor felt like it had peaked at 17.8 and would continue decreasing. And then Thursday when we expected another number lower than 17, the test came back with 19.9, a number that is not far away from a very dangerous level that causes brain damage, blindness, motor function problems, and other irreversible lifelong side effects!

Needless to say, we were extremely concerned and frustrated that we had been treating the jaundice for five days, under close medical observation, and yet the bilirubin level was higher than when we first started, last Saturday. It was the first time as parents that we felt totally helpless. I have often heard parents' frustration of wanting to DO SOMETHING but not being able to intervene.

The medical staff started more aggressive treatment to include phototherapy and antibotics to treat any possible infection that would prevent reduction in the bili levels. Additionally, he was given a feeding tube to keep him hydrated because he was not taking all of his feeds. This too was a setback but understandable given the amount of formula they were giving and the associated lethary and reduced appetite due to the high bili levels. Furthermore, as a result of his condition, he was moved back into a pod instead of the multipurpose room we previously had. Thus, we slept at home or laid down in our own bed, rather. Leaving him at the hospital was particularly difficult because we felt like we were leaving him when his condition was at its worst.

So for the next 12 hours until the next bili level results, we slept, waited, worried, became expert internet doctors (whatever), and most importantly prayed for a reduction. So on Thursday morning when we returned to the pod, he wasn't on phototherapy and the nurse said the bili had decreased to 13. A tremendous relief and an answer to our prayers. However, she said that there was an infection found and the doctors would tell us more when they rounded in an hour. So there it was... one more thing to worry about. We see progress in one thing and something else pops up. Understandably, the nurse didn't want to give us all the information and we didn't prod her for it. So we waited...again.

An hour later when the doctor showed up, simultaneously we had a visitor that came by, a person drawing our blood for a study at UAMS, other visitors outside we weren't expecting, and the doctor coming by. The UAMS rep waited. We asked the visitor to come back later and we told the other visitors we would be with the doctor for 20 more minutes.

The doctor was pleased to see the significant bili level reduction and attributed the previously high levels to the infection. What kind of infection? Strep B, most likely. Somewhat common in newborns. Once again, we see progress in one area and have another area to be concerned about.

The infection would require ten days of antibotics through an IV. Ironically, that was the first time we had ever been given a specific timeframe for our stay. However, the doctor mentioned that they were checking to see if the bacteria had gone to the spinal cord and might have caused meningitis. She doubted that it did, but they, of course, had to confirm it. If it was there, Carsten would get 14-21 days of antibotics and other treatment. Fortunately, they started the antibotics early which would help to prevent the spread. When she told us, we didn't know exactly what meningitis was but we knew that it was serious. While we waited, it was Wiki-time to see what meningitis was. Very serious, indeed. An hour later, we found out that it was negative and there was no meningitis. We exhaled so much; I can't believe we could hold that much air in our lungs. Then it was 12:00. We were exhausted. It is amazing how much that tension and worry can tire you. I am sure there is a lesson there.

28 or 29 times in the Bible (I can't remember which) God tells us not to worry or be afraid. Almost enough for once a day. And yet, if we were honest, we all worry too much when we desire to influence a certain situation to a particular outcome. All throughout this journey so far that goes back to early pregnancy, we have trusted that God would accomplish His will through Carsten. But Kari and I are experiencing how difficult it is to entrust to God someone we love so much. For us, it is different that money, personal life situations, and everything in our past that we continue to drag around.

So we lean on 1 Peter 5.7 "Cast all your anxieties on Him because He cares for you." Thank God that He does care for us.

Excited for tomorrow.

3 comments:

brenda said...

I cannot say that i can imagine what you guys are going through, please know that you 3 have been in our prayers for this past couple of weeks, and i wish there was something i could do to help you and make you and carsten feel better.
All of my love and good vibes... i love you guys!

Anonymous said...

Chad and Kari,
God is already using this as a great testimony to others to be strong and keep your trust in God. So be encouraged by your faith and the prayers of those who love you!
Stacey Foot

laurel said...

I'll breathe a sigh of relief with you guys. Thank you Jesus!!!