Dealing with Disappointment and Discouragment

Levi is two weeks old today (Saturday), or, in the dating that they are using at the hospital, he is at 36 weeks of gestational age. It is incredible to think about how much has happened in the past two weeks - and how some parts of this time have flown by and others have really seemed to drag on and on and on.

We have a couple updates on how Levi is doing recently:
- He is still not needing the photo therapy treatment for high bilirubin levels - his levels went up a little bit yesterday after he was taken off the lights, but not enough to cause huge concerns.The expectation is that this up and down with the bilirubin levels will go away when he is able to digest well and poop regularly.
- His fluid intake from the IV has been gradually reduced over the past couple days. This is being done in conjunction with having Sarah try to breastfeed him every 3 hours or so (they do a bottle for the overnight shift) and he is still being weighed every day. Over the past 3 days, Levi's weight has continued to increase (about an ounce each day) even with his fluids being dropped, so we know that he is getting enough from Sarah to continue to grow. For the short run, I think that the plan will be to continue to try and decrease his IV fluids bit by bit and to continue to monitor his weight for positive growth.
- The breastfeeding continues to be a work in progress. Levi has shown that he can eat, but he is often very sleepy and difficult to keep awake. It has been hard (for him and for us) to keep the schedule that everyone feels is best for him (eating every 3 hours), but he and Sarah are continuing to struggle and fight and are gaining ground a little bit at a time. 
- Levi is getting regular suppositories to help him poop. A couple days ago, he was getting two a day and now he is down to one each day. He has pooped a couple times in the past couple days (about once every day or day and a half) and it continues to be "transitional stool" (see previous posts). This is good, but also indicates that there is room for growth and improvement.
- He is not under lights or a heater anymore and he seems to be maintaining his own temperature pretty well. He is wearing clothes now being bundled up in blankets or swaddlers and is exceptionally cute (or handsome) in his various outfits! :)

There are many huge praises in the updates above, but we are also facing some concerns and have been wrestling with some disappointment and discouragement over the past couple days as well.

The two primary presenting conditions that are causing concern (for us and for the medical staff) are the difficulties that Levi has with digesting and regular pooping and the color of his skin (an ashy, bluish shade most of the time) over the past week or so. These two concerns do not appear to be linked and neither have their causes been easy to identify.

I talked with one of the Nurse Practitioners again this evening (Saturday) and he noted that there are many, many tests that are being run on Levi and all of them that have been done so far have come back completely normal and healthy. He talked about the concept of "horses and zebras" - meaning that when something is wrong medical staff start with the ordinary/normal/regular things that they expect or see more often (the horses) and then gradually move to checking on the out of the ordinary, unusual possibilities (the zebras). He noted that we are well into the zebras by now and that there are many, many medical practitioners that are thinking and talking and consulting on this case. He also commented that Levi is basically going to be one of the best checked out kids that he has ever worked with.

One of the doctors I spoke to yesterday asked if I ever watched House, because the process of elimination that is "over dramatized" (her words) in that show is a real part of what is happening with Levi. She talked about this as being a sort of whiteboard session and that we would just continue to check things and eliminate possibilities and continue to work hard to find out what is happening with our son.

Both of these individuals (and many others) have also been very reassuring in their comments about everything that they are testing coming back normal. Levi is healthy and continues to come back with positive and normal results from everything that is being tested and he is continuing to gain weight and make progress in other areas as well.

While there is hope and reassurance and progress being made, there have also been some emotions that Sarah and I have been wrestling with and fighting lately.

When Levi was first born, the doctors and nurses told us that their standard answer to the "when will he be able to come home" question is that we could/should plan on him being there until his full gestational age (May 21 will be 40 weeks for Levi). With that being said, there were several comments made after that about how kids his age and size and with his development could often go home after a week or two. I think that both Sarah and I really grabbed on to that comment and felt that 1-2 weeks was manageable and that we would really like to see that happen. It has been really hard for both of us to recognize that Levi's 2 week date was rapidly approaching and that no one was talking about him coming home.

Over the past several days, I think that we have also really been struggling with the fact that it seems like every step forward in one areas is accompanied by a step backward in another area. It has been really hard to wrestle with the ambiguity of all the "head scratching" that everyone seems to be doing and to not have any real answers to the questions about why his digestion and color are the way they are. 

It has been disconcerting to have to reorient ourselves to the fact that it might be several more weeks of having Levi in the hospital.. We have been asking questions about how concerned the medical staff or and how concerned we should be. We are struggling with not being overly afraid about a response to these questions that will indicate some sort of serious condition and/or an ongoing, lifelong struggle for Levi.

It has been hard to balance having a 2 year old at home with the time that we (particularly Sarah) need to spend at the hospital - and it has been really hard to not be able to introduce Levi to his big sister. Naomi is continuing to do really well and has enjoyed the time she has had with both of us and with friends and family. We do talk about "Wee-Bye" (her pronunciation of Levi) regularly, but at a certain level, I think she is probably wondering about the imaginary baby that mom and dad keep talking about.

Today has been better than yesterday was and we are both continuing to pray for God's grace and peace and for His favor. We are trusting that He knows what is best for Levi and for our family and that He will sustain us and keep us all.

It has been a different experience of the time leading up to Easter for us this year, but we are exceedingly thankful for the reminder of God's victory over sin and death and disease and doubt and discouragement at this particular time! We are thankful to be able to celebrate God's mercies and His goodness for all of our family and for every person that God has created. We are appreciative of how God is revealing Himself to us through difficulties and through joys and through His people. Thank you for continuing to pray with us and for allowing God's Spirit to lead you in how to pray for Levi and for each of us!

2 Corinthians 12:9 (ESV)
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.