Update 21: Doing the Right Thing Even When it Hurts

Thomas will not be home for Thanksgiving. I am trying not to dwell on it too much, because it hurts. And we have too much to be so thankful for anyway to sit and dwell on a bit of unhappiness. Things could be much different for the worse.

I drove to the hospital Monday night prepared again just in case we got to room in. In fact, the doctor had told us that if things went well and there were no bad episodes, we would do that. Except we didn’t.

Thomas had only had a couple of quick heart rate drops since Saturday. HR down to about 80, quick recovery on his own. BUT with the monitor in its new "more info" configuration, the doc could go back to an episode and look at all the stats at the time it happened. For 10 seconds before his HR dropped, T stopped breathing. While that is not "official apnea" (20 seconds makes the alarm go off) it still is enough to make the doc think that this is apnea of prematurity and T is outgrowing it, but not quite there yet. With this new info the doc is not so quick to write off the episode from Saturday as "something else" like he was before, now he is considering it a "bad apnea episode" in light of the new evidence. He apologized for giving me false hope and then gave me a couple of options:

1. Wait a couple of days, room in, and then go home with a monitor.
2. Restart the count from the episode on Saturday and if all continues to go well, room in this Saturday night and go home without a monitor. If there is another episode before Saturday, then discuss going home with the monitor on Saturday.

Our NICU usually does not send babies home with a monitor for apnea of prematurity before 41 weeks. They prefer that they stay there and grow out of it. They are willing to discuss it with us before then because of our distance from the hospital and the strain this is putting on our family. We are all hoping he just outgrows it before Saturday and doesn't need the monitor.
So, I chose option two. I could tell that is what the doc really wanted.

At any rate, option one would have put us rooming in tonight and up there all day tomorrow waiting to be released instead of celebrating Thanksgiving with the big kids. Then when I got home late Monday night, Matt told me John was running a slight fever – he has been so sick ever since. All the more reason for T to stay put. And, I would really love for him to come home helathy and the docs be confident that the monitor is not needed (though I will deal with the monitor if I have to).

It is hard to be a mom and make tough decisions even when it breaks your heart. But what is one Thanksgiving in exchange for a healthy baby? Thanksgiving is for me, not him – he has no idea the day is any different from any other.  So I spent a good part of yesterday with him and said goodbye until Friday. Then I came home to spend the day with my other sick baby today and teach my kids how to give thanks always tomorrow.

A lifestyle I aspire to

And it's not the coffee-drinking, novel-reading, cute boots, great hair lifestyle either.

A good read: BOOKS and BAIRNS: At the library

Update 20: Coming Home Empty Handed

We have been on a countdown this week. I haven’t wanted to say much about it for fear of putting the jinx on it, but we have been counting down T’s possible release from the NICU and today was supposed to be the day we roomed in. Except it didn’t happen.

Babies in the NICU have to pass a number of milestones before they will let them come home. They have to learn to breathe on their own, maintain their body temp, eat and gain weight on their own, and also to keep their heart rate at an acceptable level. Thomas has finally mastered almost all of these, but the one keeping him there is the heart rate issue. When the heart rate drops, the staff looks at a few issues. Is there apnea with the drop (or does he stop breathing)? How far does it drop? And the biggie, was he able to self-resolve or bring the heart rate back up by himself with no stimulation (usually a rub of the foot). Babies heart rates drop for any number of reasons – even healthy, full term babies – so what they require before release is seven days where drops do not go too low and no stimulation is needed to help raise the heart rate. Anytime during the seven days if the heart rate drops and requirements are not met, then the count restarts. If seven days go by with no issues, then mom and dad can come room in with baby and if that goes well, go home the next day.

We were on day eight.

We knew he had an episode that required stimulation on the 14th. That was the one they were counting from. Everyday we visited and called, and each time we held our breath and asked if his heart rate had dropped and if so, were the drops self-resolved. They all were and then the past couple of days, there were no drops at all. So this morning we got up and reconfigured the van to fit three car seats, installed his seat, arranged for the kids to stay with Donna, pack my bags and Thomas’s, and got ready to go.

I called the NICU at 10. All was well, but the nurse practitioner had yet to make rounds. No word yet on our rooming in. Please call back about 1:00. We knew we had to make the drive anyway because he was almost out of milk, so we continued to get ready to make the trip. Called again at 1:00 – no answer. Finally got through as we were getting ready to walk out the door at 2:00.

That was when we got the news. He had dropped his heart rate about noon. It was self-resolved, which is very good. It was dropped to 50 BPM, which is not good at all. The practitioner wanted to talk to the doctor. Thomas’s rooming in was open for debate. He still needed milk, so we got in the van and drove.

And now we are back home – empty handed. No rooming in tonight. The doctor wants to watch him some more to make sure that the drop will not repeat. He thinks he knows what the issue was – compression on a nerve that can cause the heart rate to slow. The compression happens when Thomas bears down – like when passing gas or going poopy. They have reconfigured his monitor to give them more info about the drops . They just want to be safe.

And I can’t argue with that at all. In fact, I insist upon it despite my disappointment and frustration. And the good news is this is not for another seven days, but only for a couple more. In fact, if things go well and this doesn’t repeat (and we know that is a big “if”), we should room in on Monday night.

So I ask for a few more prayers from you. I would love to have this boy home, safely, healthy, and as a bonus, in time to spend Thanksgiving with his family. We just have to keep on keepin’ on.

Update 19: Just a Photo

To tired for words tonight. T is well and there may be a light at the end of the tunnel for going home. More on that soon – nothing definite yet.

From the Blackberry today:

Bitten By the Lapbook Bug

We have been having such a fun time with our Thanksgiving lapbook. We have been working on it slowly, but surely and should finish soon. I will post some photos when we do.

The kids’ attitude about working on and completing their lapbooks has me exploring the subject more on the web. There is a ton of information out there. and I think we are going to incorporate more of them into our “school” work. Since we have a new baby in the house, I am going to use some premade lapbooks to make my life easier and have been exploring different options.

A Journey Through Learning has some neat topics for preschoolers. They include teaching about letters, shapes, and numbers. I like the look of the graphics – kid friendly, while not cheesy. I think we are going to start with the Me and My Body Lapbook in the new year. We can add a few story books and it will be a fun unit.

Update 18: “Look Ma! No tube.”

This big boy is taking every single feed from a bottle!

Update 17: Long Overdue

Sorry it has been a while since my last update. Lots going on, so not much time to get on here and post.

Thomas is doing really well. He is making great strides with his bottle feeding and is now taking every feed well from the bottle. The nurse was making noises today about taking out the feeding tube, so we hope that happens soon. There is still a bit of an issue with him dropping his heart rate. Sometimes he does it while eating and other times he just does it for no apparent reason. Those are the ones that will keep him there a while. They have done some tests to look for the reasons behind them, but it could just be that he needs to grow some more. I will check on the test results when I go tomorrow. Good news is, as of this morning it had been over 24 hours since his heart rate dropped not related to a feeding. That seems to be an improvement. All we can do it wait and pray.

I got a clean bill of health from the doctor on Thursday. I can now drive myself for the hospital trip and do most things. No moving furniture still, but that is OK.

Have been trying to make the time we spend with O and J good quality time. We can see how the hours away from us during the day really take a toll on them and affect their behavior. They are much more whiney than they were before. They come home a bit intense, alternating between the need to cling to us and a loud, hyperactivity. I think it is because their environment has been so structured all day. They are trying to let everything out when they feel they are safely with us in the evening. Matt and I both can’t wait until they are home again. We miss our nice, relaxing evenings. It borders on insane. Not sure how others do it all the time.

We are very happy with the school/daycare we found. So blessed to have found such a good place on short notice. That said, it is a preschool. The kids have mostly brought home good things – cute artwork, seeds growing in cups, a new table blessing, good manners. What have they really learned, though? Well, Olivia has picked up a really thick accent and she now knows how to color within the lines. They wrote a note home about John’s artwork the other day saying they were trying to help him grasp that concept. It was almost apologetic. Not sure if I should write back and explain our philosophy of art (process, not product) to ease their mind or not. I keep repeating to myself that it won’t be much longer and it isn’t hurting them.

Mr. Thomas turned a month old on Friday. Here he is trying to wake up for his first starring role. Being a movie star is so tough.