Feed Me Seymour, Feed Me

"Feed me, Seymour / Feed me all night long - That's right, boy! - Go to it, Feed me Seymour / Feed me all night long / Cause if you feed me, Seymour / I can grow up big and strong." That's what Audrey II said in the movie, "Little Shop of Horrors."

And that's exactly what we are trying to do to Carsten. Feed him! But he can't grow up big and strong if he doesn't eat. His feeding is our biggest concern and prayer request. It's not that he doesn't like to eat; it's that he doesn't stay awake long enough to finish his bottle. Ten minutes and he's out--asleep. A WET wash cloth, poking, pulling, nothing will wake him up. We believe his heart defect is the primary reason he doesn't have sufficient energy to finish a feed which normally last 20 minutes. He works sooo hard to eat the amount that he does. We can see how much he tries to breathe after feeding. We can see his shoulders rise along with his chest as he leaves his mouth open for air.

Currently, we are alternating bottle feeding and tube feeding. And whatever he doesn't finish in the bottle feed, which is usually half, is fed by tube. We were told today that they would allow us to go home with a feeding tube. While that doesn't seem like good news, it is good news if feeding is the only reason we would be staying at Arkansas Children's Hospital (ACH). And though it will add difficulty to our lives, we believe the tube will be temporary. We still have sometime yet here at ACH to make some progress.

Feed Me Seymour, Feed me. That is what we want to do more than anything, right now, Carsten. Eat little man, eat!

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.

Clean As a Whistle

Mama gave Carsten his first bath on Sunday. We thought he did very well. He just sat there in the tub and thought why are they doing this to me. Haven't I been through enough? Even more amusing was how much Kari enjoyed giving him the bath. She was giddy. Attached is one of the few photos that were censored and could be posted.

Temporary Setbacks

While we are still very positive and very thankful for everything thus far. This last weekend and Monday seemed like two steps forward, one step back. One step forward, two steps back. We did not make progress like we had hoped. With the previously mentioned high bilirubin levels, a lack of reduction in supplemental oxygen, and several difficult feedings, our stay here very well could be extended. Last Friday, we looked at this Wednesday as a possible date to go home, but that will be slipping to the right. That being said, even before Carsten's birth, we anticipated we would be here for a while (up to 2 weeks). And though we don't know exactly how long we will be here, our overall goal is to be able to take him home with knowledge of any health related issues that would be identified at ACH.

Bili-What?

Bilirubin. Have you heard of it and did you know you have it? It's not the fact that you have it that's the problem. It's the fact that you should not have too much of it. Too much of anything is not usually a good thing. And that is true of Bilirubin. Too much of it causes jaundice, not uncommon for newborns. In addition to a yellowing of the skin, biliruben causes a lack of appetite and increased lethargy (sleepiness). Thus, Carsten has not been feeding consistently well and he sleeps more than what would be expected to be normal (to include feeding time). To make things more complicated, breast milk from the mother actually increases bilirubin.
So we feel like we are in a never ending cycle where he is always sleeping and not feeding well because of his high bilirubin. And yet it may be mama's milk that adds to that increased level. But the hospital favors breast milk over formula. Hmm. We feel particularly pressured (from within ourselves) here at the hospital to ensure that he is feeding appropriately. If his feeding doesn't improve, we can expect him to receive a G tube to feed him intravenously. This situation is something that could prolong his stay here and ours.
We are discouraged and frustrated right now. His level was high upon admittance at ACH. Last Saturday, they put him "under the lights" for two days to reduce it. Two days later it did decrease and so they took him off the lights yesterday. We were thrilled. He hated the light and we did also. However, last night his level of bilirubin increased. He was more lethargic and it became more difficult to feed him. So maybe the light wasn't that bad. He did eat better when he was under the light.
It seems to us that this is the most pressing issue right now for him and we long for a targeted plan of action.

Progressions

Since arriving on Thursday at ACH, Carsten has steadily progressed. He was first in an open "pod" with six different babies. But because of his improving condition and the potential for Kari to spend more time breastfeeding with privacy, he was placed in a multi-purpose room on Friday where we can stay with him! A TREMENDOUS BLESSING! We can't express how thankful and how undeserving we are to have this room. There aren't many of them in the NICU.

Of particular concern is his oxygen intake. That has not seen significant improvement yet. And while the doctors try to determine if it is due to his lungs or heart, they are monitoring his jaundice (more on that later) and so many other things like the weight of his diapers due to the content in them. :) I am really hoping that is not required when we go home.

Something we are most pleased with is his ability to feed. While he is not yet totally breastfeeding, he is able to do that and bottlefeed. Hopefully, we can do away with the bottlefeeding soon.

Still no dates/timeframes on when we would be able to take him home. At the earliest, we guess next Wednesday.

More to follow about his first outfit and tanning.

My First Vehicle Ride

What was the first vehicle you rode in? Probably your parents' car. Today, Carsten cruised in an ambulance over to Arkansas Childrens Hospital (ACH). And his mom was discharged from UAMS today. Walking more but still sore. She walked the long and winding halls of ACH to get back to see him and feed him. As we were leaving UAMS, the nursing staff gave us the attached certificate with Carsten's footprints on it. We loved it.

Overall, it was a big day for the little man. All the commotion of moving out of one nursery warmer to an ambulance to another nursery warmer at another hospital followed by an evaluation at that hospital staff. Consequently, he slept a ton at ACH. Two great developments -- The medical staff reduced the amount of oxygen they are giving him to supplement his breathing and he is feeding on a bottle very well. His individual oxygen intake and feeding are the two major concerns for us and will be the primary factors on when he is able to come home. Big prayer requests there.

Just getting started...

Carsten's Coming Out Party

Carsten is here...finally. There is so much to say. We will have to send out our story as we can. Too much for this one post. For now, we'll post some pictures. He is doing really well so far. Better and better. We are very pleased thus far. And we know we are very Blessed!