One Week Home!

I told you guys that I knew how to cry...

When I get fed, I like to look around

I know I am cute

Just another day on Dad's lap

Drew has been home for a week now! I don't know how it happened, but ever since I posted that last entry, Drew has been sleeping like a champion at night (could it be the Utes?)! He will get up once or twice to eat, but then go right back down! We have great reason to be thankful, and we are very much aware of that.

His first doctor's appointment this last Tuesday turned out to be pretty routine. Everything looked normal. We did set up an appointment to go back in on this upcoming Tuesday for another blood test and a circumcision. And then the next day, we have an appointment for him to get an EEG (I guess EEGs test the brain for evidence of seizures), and we will also see a neurologist at Primary Childrens' (this will be Wednesday, December 3). When we set up the appointment for the EEG, they instructed us to bring him in on Wednesday morning "sleep deprived." One week ago, I would've said that that wouldn't be a problem -- now I am not quite sure how that is going to work. Sarah thinks that the fact that he will have been circumcised the day before will be enough to deprive him of any sleep for a long time. She's probably right. Whatever the case, we are hoping that Drew's visit with the neurologist will be the beginning of the end of Drew's dreaded nightly dosage of phenolbarbitol (anti-seizure meds).

In light of the Thanksgiving holiday, I must conclude by saying that I don't think we have ever had more reason to be thankful -- Drew is absolutely precious.

Two Days Home

Drew has officially been home for two days now! He has already asserted his rightful place as king of our house. I am sure that all of you parents out there will just laugh at this next statement, but Drew's version of sleep consists of lying down and screaming his lungs out as hard as he can (don't let all of these calm pictures fool you). It doesn't matter what we try to do to console him; he has made it clear that he is not interested in our help.

Life at home hasn't been all bad for Drew. He is turning into a pretty good eater, which is great considering that a few short days ago in the hospital it was all we could do just to get him to eat a tiny bit. There are no more wires keeping him tethered to some machine. We don't feel the same amount of pressure for him to eat or pee, with doctors and nurses keeping all sorts of stats of such things. So life is good, if we could just get him to sleep.

I will say that between about 4:00 PM and 8:00 PM on Saturday afternoon Drew seemed uncharacteristically calm. I think it had something to do with his favorite football team winning a big game.

Friday, November 21, 2008, 1:00 PM

Guess who is home now!

Thursday, November 19, 2008, 1:00 PM

Look at that big yawn!

Thanks for you interest!  Sarah and I love reading the comments!  Each night, I read each one to her and she guesses who wrote it.  We have fun.  

Since my writing can be quite confusing, let me clear up a few questions that have surfaced.  Drew is still at LDS Hospital -- no transfer to Primary's was necessary.  The doctor said that he would get us set up with an outpatient visit at Primary's with a neurologist next week some time.  In another post, I mentioned that two of the four spinal tap tests came back negative -- now all four have come back negative.  

As for Drew, he has made progress.  He still lost weight yesterday, but his urine output was normal.  He took a bottle every other feeding without too much trouble.  If he continues to progress, we think he might come home tomorrow.  But we have learned our lesson about getting too excited.  

Wednesday, November 19, 2008, 2:30 PM

So it looks like we are going to have to wait a couple more days to bring Drew home. The last couple days, when Drew hasn't been supplemented by anything, he has lost weight -- which is fine in and of itself -- but couple that with the fact that his urine output has decreased to a third of what it should be, and all of the sudden going home today is out of the picture. The doctor gave us three choices: 1) use a feeding tube, 2) use the "SNS" syringe feeding, or 3) use a bottle. He made it very clear that he favored option #3, but left the decision up to us. After some discussion, we chose option #3. So now Sarah nurses him for one feeding, and I bottle feed him the for the next.

From now on, we will try to be more careful about getting our hopes up. Obviously, staying in the hospital for a couple more days is not what we had planned on, but we'll be just fine. And so will Drew.

Tuesday, November 18, 2008, 8:20 AM

The doctor awakened us in our room this morning with some great news! He said that if Drew has another day like yesterday, then there is no reason to keep him here -- so, barring any unforseen incidents, we should be home tomorrow!

Here are two happy boys!

Monday, November 17, 2008 4:00 PM

The hospital continues to let us "hotel" here for $30/night. What a deal! Tonight will be our 9th sleepover here. I am trying to work this week; Sarah is obviously still at the hospital. Anyway, we have made it another day seizure-free (which is always the biggest victory to be won each day)! Yesterday they started weaning him off of his IV fluids, and now he is completely off them. But he wasn't eating enough on his own, so now he has an "NG" feeding tube through his nose and down his throat (the "SNS" tube that he was feeding on earlier only went from the syringe to his mouth). Sometimes it is hard to gauge how much progress is made by these changes. To me, switching the IV for a feeding tube feels kind of like a wash. Obviously when we look back, it is not hard to see that he has taken many steps in the right direction. His heart no longer has an arhythmic heartbeat or a murmur -- all of the pulmonary hypertension is no longer a conern. His spinal tap test and other lab tests have all come back negative. By and large, he is a very healthy little kid.

The great question of last week was, Is he going to be okay? The answer to that question has proven to be a resounding YES!, for which we will be eternally grateful. This week's question is almost as worrisome as last week's and just as urgent: How in the world are we going to do this whole parenthood thing, anyway? Luckily, it looks like we are going to get to find out.

Sunday, November 16, 11:00 AM

No more seizures (yet)! The phenolbarb seems to be doing its job just fine -- although it does knock him out pretty hard. All afternoon yesterday and into the night, we were frustrated because it felt like we had made zero progress. He was too tired to eat, and thus no closer to leaving. That all changed early this morning, when for some reason, everything just seemed to click and he had some very successful feedings. I think a lot of it had to do with Drew's consult was the speech pathologist (who really was a physical therapist) last night. She confirmed that he is not very good at sucking, and I wholeheartedly agree! (Sarah is going to roll her eyes at my attempt to be funny.) But the main thing she did was to tell us that we should stop the "SNS," or tube feeding, that we had been doing to try to get him some extra nourishment. That advice has seemed to work wonders.

There is more good news: the doctor is going to reduce the dosage of phenolbarb, so hopefully he won't be knocked out too much to eat today. Obviously there is a fine line between controlling the seizures and getting proper noursihment. Also, doc has discontinued the phototherapy, so no more annoying lights. And finally, they are reducing the amount of the IV fluids that Drew has been getting, in the first attempt to wean him so he can come home.

After a long day of no progress, this morning feels like we have maybe turned a corner.

Saturday, November 15, 2008, 11:00 AM

Friday afternoon, evening, night, and Saturday morning seemed to be going very well. Drew had been given a relaxant that kind of knocked him out Friday morning after his last seizure. When that medication wore off, he was more awake and did a better job feeding. Although we didn't get a ton of sleep, the night felt like one of the best yet. That is why we were surprised that the doctor informed us that Drew had had another seizure last night (that is number 4). Apparently it wasn't as intense as the other ones.

So the great question of what causes the seizures remains a mystery. The doctor told us that if the seizures continue, in spite of the medication, then it is likely that Drew will be moved to Primary Childrens' where they have a neurologist that can do an EEG, etc. Hopefully that won't have to happen.

Since seizures in newborns are harder to spot, the doctor did say that there is a possibility that they are not seizures and could be something entirely different. But for now, there have been enough different witnesses to the same type of seizure activity, so everything seems to point that direction.

They stepped up his IV so that he is getting more nourishment -- Drew won't come close to leaving until he is fully weaned off the IV and getting all of his food from Mom. So far, it feels like it will be a long time before that happens. The doctor has called in a speech pathologist to analyze his suck (my son is not a sucker) and muscle tone. As well as aiding in the feeding, the speech pathologist may be able to confirm whether Drew's episodes really have been seizures. The other thing that Drew will get again is his sweet sunglasses. Because of his bilirubin levels, they are going to start the phototherapy again.

Sarah and I are doing well...We have now been living in the hospital for six days, but have been very well taken care of not only by friends and family (all of you), but by the hospital staff as well. I think it helps that Sarah's entire family is in the pediatric medical field, and I have a pediatrician uncle that does a lot here at LDS Hospital. It feels like everyone is watching out for us here, and that is a really good feeling. Thanks for all of the food, company, and prayers. We feel like the luckiest people on earth.

A Few Photos

Mom & Baby, looking good!

The first time Ted has ever changed a diaper

I am so cool in my sunglasses

I like to hold my hands like a bunny rabbit

Kind of looks like Ted when he sleeps...

Friday, November 14, 2008 9:00 AM

So the MRI came back yesterday...and great news! "There is no significant evidence" of brain damage. So we can rule out the worst case scenario. So although we are not out of the woods yet, that was obviously a huge relief. There are four different lab tests from the spinal tap, and the first two have come back negative (that is good). So everything is lab-wise is looking good.

He did have another seizure this morning (that is three in total in the past 36 hrs), so obviously that is still a little troubling. But at least we know that the seizures don't come from brain damage.

So that is where we are at...thanks for your prayers. I honestly believe that they make a difference. We are confident that everything is going to be great --- only a matter of time.

Thursday, November 13, 2008, 11:00 AM

Things have taken a turn for the worse in the last 12 hours. The doctor is very concerned about some episodes that Drew appears to have had and is giving him some anti-seizure medication and some other medication to help calm him down. He is going in for an MRI and a spinal tap at noon today.

The episodes early this morning have caused the doctor to revisit his concerns that some neurological damage was done during the first minutes of Drew's life when he wasn't breathing and they had to resuscitate him. Hopefully the MRI will provide some answers.

Tuesday, November 11, 10:00 AM

Drew had an echo cardiogram yesterday with some positive results. Turns out that his heart is structurally sound and not enlarged, like they thought. So any problems they noticed should be taken care of as his heart continues to grow and develop.

This morning we talked to the doctor and he expressed a little bit of concern over the length of time it took to resuscitate him. His APGAR scores (healthiness on a 0-10 scale, 10 being perfectly healthy, as I sure you already know) at one minute was a 7, at five minutes was a 1, at ten minutes was a 2, and at fifteen minutes was a 7 again. So the doctor might go ahead and order a cat scan today just to make sure that there wasn't any damage done by the 10 mins that it took to resuscitate.

Other than that, we are dealing with the typical newborn isses (i.e., breastfeeding, etc).

They are going to release Sarah from the hospital tomorrow, and it sounds like the baby will likely be here for a few more days as they continue to monitor him.

Monday, November 10, 2008 -- Baby Drew Arrives!

Sarah's water broke yesterday at about 12:45 PM (during church!), and Drew was born early this morning at 12:34 AM. He weighs 7 lbs 3 oz and is 20.5 inches long. He has his father's striking good looks. After he was born, he was fine for about 5 mins and then he went into shock for a few minutes and had to be resuscitated. Because of that, as a precaution he is in the "Special Care Nursery" for at least another 48 hours. This morning, after some x-rays, they have determined that he has an enlarged heart, so they are going to do some additional testing. By and large he is a healthy little guy and we have all the assurances that everything is going to be just great!