Friday, January 9, 2009

Day 6--Another day to CELEBRATE!

Now that's more like it!

When we got to the hospital this morning, the miraculous good news was that Dexter had been completely weaned from Dopamine since 3:00am and was still maintaining his blood pressure just fine! That meant that he could get his arterial line out since his blood pressure no longer needed to be monitored so accurately, and that meant that we could hold him since there wasn't the risk of bumping the arterial line and spurting blood evertywhere. And that meant that he could try breast milk. (I'm not sure what the connection is, they just said that he had to be off dopamine before he could try it.) They also informed us that the neurologist from Children's Hospital would be making it over today to examine Dexter and interpret his MRI and EEG results. (Oh yeah, he got an EEG on Wednesday--that's the one where they stick things on the head and read the brain activity; I didn't get to see it because they thought they wouldn't do it for a day or two, so I left around 12:30 and they ended up doing it at 1:00. That's kinda the way it is--i have to get pretty lucky to be there for things.) They decided to leave his art line in until she came in case she wanted some weird blood test that they hadn't hought of. It's easy to get lots of blood from an art line, as you can imagine. Upon hearing all of this, I said, oh, I don't want to leave today--that's too much to miss out on! But the other kids were at a friend's house, and I was supposed to pick them up at 11:30. Gratefully, my mom had decided last minute yesterday that she wasn't going to come in to work today, either, so she was with me at the hospital. She offered to pick up the kids and take care of them all day so I could be there for Dexter. I know she was prompted to be where I needed her--yesterday I thought I had it all covered without her, but I am so glad she made it possible for me to stay at the hospital all day!

In the morning, I enjoyed how active and responsive he was. When he cried, I could soothe him with touch, pacifier, talking, and singing. He even peeked his eyes open, just barely a crack, and kind of tried to look around. He definitely wasn't bright-eyed and bushy-tailed, but it was the first time I'd seen him try to open his eyes at all, so it was pretty momentous to me!

The head-honcho expert neurologist came just after lunch bringing a very positive outlook, I thought, if not answers to all our questions. She gave him a thorough physical exam, and was concerned about his hypertension (overly tight, tense muscles), his posture (he tends to arch his back and tip his head back when he's lying down), his tendency to startle so readily, and his reluctance to open his eyes. Her concern from his EEG was that his sleep patterns looked somewhat developmentally immature, as if they were from a baby who wasn't full-term. And from the MRI, the concern was of course the abnormally large and septated ventricles. However, she said she saw no evidence of seizure activity, and she instructed the other docs to take him off of Phenobarb immediately. She also said very definitively that she saw no evidence of a bleed or stroke. So that theory was out, because as I said, she was obviously the head-honcho expert. The resident and lead pediatrician were just like, "yeah, oh, okay, of course I thought so too, whatever you say." She also ruled out the infection in-utero theory, because she said that the septation in the ventricles was too symmetric to have been caused by an infection. She suggested that it was just developmental--his brain just formed those ventricles slightly abnormally. And then, get this, she compared it to a brown freckle. She said just like you might have a brown freckle and someone else doesn't, it amkes no real difference. His ventricles are mildly, she said mildly, enlarged and they have membranes in them instead of being hollow. She suggested that this may not impact Dexter at all. She said that she saw no evidence that the membranes were obstructing the plumbing in the spinal fluid system, and that their enlargement dind't seem to be putting any pressure on the brain or infringing on the white matter around it. She didn't know why Dexter has had such a rocky start to life, but simply suggested a follow-up examination with her including another EEG after he has been off medications for a little longer and has had a calmer life for a bit. She wanted to know if she should schedule to follow-up with him at home or in the NICU, so she asked the resident what the plans for discharge were. We have NEVER heard a mention of discharge. They always make it sound like he'll just be hanging out in the NICU forever. The resident said as much, saying they hadn't considered discharge. The neurologist pressed, and asked what needed to happen before discharge. The resident said that Dexter had not tried feeding and needed to master that. Again, Miss Head-Honcho pressed and said "So, what? About 3-5 days?" And of course, the resident had to agree that that sounded like a reasonable goal for discharge. Now that was exciting to hear!! I like this neurologist--she gets things done!! And she seemed very reasonable about it all--she wants to follow-up so that she can compare Dexter to Dexter, instead of to some ideal of normal. She sees some concerns, but nothing extrememly disturbing from his imaging, so she's taking a we'll-see-what-he-can-do approach.. It defintiely didn't answer all of our questions, but it was comforting and encouraging to hear her take on Dexter.

Before Miss Neurologist left, she assured them that she didn't need any weird blood tests, so the resident and the nurse set to work removing Dexter's art line. Before I knew it, he was tasting breast milk for the first time!
Unfortuneately, for a guy who just learned to breathe yesterday, the breathe while I such and swallow thing was a bit tricky. So he gagged and sputtered and went down on his oxygen saturation and had to increase the oxygen in his cannula to a bit more than a whiff before he was ready to try again. And he spit it out and gagged and cried again. And again. So he had to get a gavage tube--a tiny tube stuck down his nose and into his stomach--to get some breast milk into his system. One step at a time. He really is doing great today.
I thinks he likes this being cuddled thing. It was just what Dad needed after a long stressful day of trying to go to class when his mind was definitely elsewhere. I can't describe how good and normal it felt to hold my little Dexter. I got to snuggle him for over an hour and a half and I still didn't want to put him down. I am so thankful for this little addition to our family and I'm overjoyed that his rocky start is smoothing out a bit!


Nicole said...

Congratulations!! That is such wonderful news. I hope they were right and he gets to come home soon and that there aren't any major problems.

Beckie Smith said...

Thank you, Thank you, Thank you, for allowing us to hear your updates. We are thinking and praying for you all.
Beckie Smith

Inventing Matilda said...

These are all very positive steps on the path to bringing him home! We are thinking of your family.

Eric and Bonnie Bell

crazycrains said...

It must be so wonderful for you to see progress and hear such encouraging news! It sounds like you need Miss Head Honcho on speed-dial - she sounds great!
Thank you for keeping us updated! Your strength and faith are an example to us all!

Easton, Inc. said...

We are so happy for you guys! What a beautiful little boy! Did I mention that I LOVVVVVE the name Dexter? Still in our prayers, we think of you often. We'll see you on Wednesday with dinner! Love you!