Liam, a study in blue (the color, not the emotion)

Of all the treatments our little guy is going through, the one that upsets me the least is the one for jaundice. For starters, I know that I was jaundice when I was born and I had to have phototherapy (light therapy) and I know I turned out just fine. That provides some emotional comfort. I get some intellectual comfort from the knowledge that it is an issue that tons of kids, even term babies, have.

And truthfully, even the name is comforting. What is his problem? Bilirubin. When compared to the plethora of really medical sounding acronyms that plague preemie babies, bilirubin just sounds so...cute. Like it is the sort of thing that UumpaLoompas come and fix. (Now that I think of it, those uumpaloompas are sort of suspiciously oragne/jaundice looking. Coincidence? I think not).

So our little guy has been on phototherapy for a little while. He didn't get it immediately after birth, but his bilirubin levels were at 10 (who knows what units this is in). In a term baby this would be pretty ok, but they want to be careful in a preemie because his internal systems for taking care of the bilirubin are not fully developed. So he gets light treatment. While he's under the lights he wears a crazy little mask that reminds me of the thing falconers put over the bird's head. There arent any studies to suggest that the lights are harmful to their eyes. The docs explained that they just thought that since they, an adult, wouldnt really want to be under blue light all the time, they might as well provide an extra measure of comfort to the kiddos.

He usually looks so peaced out under his little blue light, so I was having a particularly Picasso-inspired moment, and decided to document the little guy's tanning sessions.

Liam and Mom

The first mother-son kangaroo care session (Feb 1, 2009)

The whole new family together.

Yeah, this skin to skin contact is pretty amazing. I can't believe most folks get to do this with their babies all the time!

Happiness.

Second mother-son kangaroo care session (Feb 2, 2009). My little glo worm, wrapped in his Bili-blanket so he can continue to have phototherapy while we hold him.

I had never known real awe until I held my son.

NICU update

Hi all,

Liam is doing great. He's slowly stepping down on his oxygen. They even took him off oxygen support for three hours this morning, though after his heart rate slowed a couple of times they put him back on at a lesser amount...two steps forward, one step back. Overall his breathing is much improved. He no longer has the grunting or irregular breathing patterns. Mostly he's breathing slow and steady.

In other news, his jaundice is on the decline after only a day under a blue light. In addition, Liam had an ultrasound of his heart done, because nurses identified a heart murmur when looking at him. We learned that he has two little holes in his heart. One should close up as it would have if he had gone full term. The other hole may close up over time. The doctors have no worries about this news, as a lot of kids have little holes that ultimately don't affect their lifestyles. In general, they think he's doing very well for his pre-term age.

We gave him a little bottle today for the first time as we start trying to get his milk digestion going...his primary source of nutrition has been the IV sucrose drip. As I type this, the nurse has started to give him a "gatorade" like solution through his IV, along with some fats. This is a step up in his diet.

Thanks for all your wonderful notes and king words. More updates soon!

t

Day Four Pictures

Liam's first try with a bottle (the eerie blue glow is the bili-blanket which helps reduce his jaundice, but it looks as though it might give him a George Hamilton tan).


Eyes finally opening!


Mom and Liam Kangaroo Time!


Dad's first chance to hold Liam.

Day 1: NICU Parenting

So today is sort of the official first day of growing into our new roles as NICU parents. I slept fine last night, but not terribly well. Unlike the night before though, I did not wake up in the middle of the night weeping. So that was an improvement. But by 5:30 or 6 AM this morning it was useless to try to keep sleeping, so I got up and started packing up the things that I wanted to take with me for the first day of camping out in the NICU. I told Terry to keep sleeping, because at least one of us has to be well rested enough to think straight, and apparently it won't be me.

I just finished my cereal, and there is a nice little sunrise brewing over the lake outside my back window. It seems very hopeful.

Today they are doing some tests on the little guy to doublecheck and make sure that his heart is sound, that it doesnt have any little holes or issues that they need to treat with medicine.

He has four big tasks to work on: 1. His breathing (rate and blood oxygenation) 2. His heart (pulse, heart rate, blood pressure) 3. His body temperature (able to maintain it without heat lamp) 4. His feeding (digests all he's given, works his way up to 40mL at a feeding).

And so begins Day 1.

Update (9:11 AM) The trip down here was trying. There was something about walking in the early morning light in the cool Chicago weather that was sort of a walk of surrender. That dealing with this is much bigger than I am.

I cried on the NU shuttle bus today on the way downtown. it was totally silly, but the bus was full so I had to stand, and it just underscored for me that I wasn't pregnant any more, that no one would offer me a seat, even though I just gave birth two days ago, my stitches still hurt, and I was overwhelmed with wanting to see my baby and all the emotions that come from that, and there I was with tears streaming down my face on the darn bus. Sigh.

A very nice woman stood up and gave me her seat when she saw the tears on my face, and sheepishly I took it. I tried explaining to her that it was my first day going downtown to see my son in the NICU, but she didn't seem to mind the reason. It seems chivalry is not dead, at least among women.

Leaving the Hospital, Leaving Liam

Today has been an exceptionally tough day. Yesterday seemed full of excitement, focusing on how he is doing so well. Better than maybe expected in many ways. Today there were some minor setbacks. Nothing huge, but I feel so vulnerable that any bit of news that doesn't indicate that he is doing amazing makes me crumble to pieces.

One of the biggest things that I have figured out today is how hard it is going to be to learn to cope with this all. For an unknown period of time we'll be going home and leaving our little guy here. When I sleep I will be far away from him. I won't be able to go up to his beside in the middle of the night unless I want to hop a bus first.

I know that the tremendous love and support of our family and friends will be key for getting through this hard time. But please realize that it can also be overwhelming. Right now I feel like I have so much to cope with that I cannot bear to manage one more thing. So if I don't respond to phone calls or emails, please do not worry, do not panic and call more often. Just know that I need to hunker down a little and shelter myself. Sometimes I will need the space to cope with this in private. If there is anything significant to report, we will keep our parents updated, and try to post updates on the blog. If you are curious, please feel free to check the blog regularly.

Until then, we are so grateful for all the love and support. Please feel free to continue to send emails and Facebook messages, but please know that while we will gratefully receive them and they give me a wonderful smile to read, I have to free myself from a sense of obligation to respond to them all. Because you all are amazing people, I know you will understand.

Day Two Pictures

Liam's First Spongebath...


and he's not too happy about it!