Tuesday, November 30, 2010
Addy slept very well for a long time this afternoon, and woke up acting nearly her usual spunky self. She nursed for the first time since the surgery, and is now sleeping again very peacefully. Praise God! We also were moved from the PICU into our own room a couple of hours ago -- yay! Now time for me to try for a nap. :-)
Things are going pretty well so far. Addy had a fairly rough night, but I think that was to be expected. She was pretty restless and crabby, but we both got some intermittent sleep at least. Her heart rate has been high, and her blood count was low this morning, so the reviewing doctor (the neurosurgeon) said she was on a borderline of potentially needing another transfusion (in addition to the one she had during surgery). Since we don't have any more directly donated blood, though, he said she was okay to wait and see how she is doing tomorrow. She seems to be doing a little better now, so hopefully we can avoid that.
The nurses wanted to wait until Addy was fairly awake before I held her, so I got to do this for the first time around 4 this morning. She drink a few ounces of clear fluid and held it down, which is a good sign. She has taken a few bottles of breastmilk since then and only threw up once (I think we gave her a little too much too soon), so that is going well.
The swelling is still fairly minimal, but I can tell it is definitely vamping up. Jeremy said the nurse told him that if she was going to swell really bad, though, she would have already been pretty bad by now. Maybe we will be able to avoid the typical eyes swelling shut that I have been anxious about -- that would be really nice!! (Prayer request!)
We've gradually had some of the various lines taken out of her, so now the only things that are actually internally inserted are an IV in her foot and a drain in her head. She seems a bit more peaceful and restful since we got out the two arterial lines that she had in -- yuck.
She did take a few rounds of morphine and some additional Tylenol, but the doctors have ordered that we should try to avoid the morphine now, and she seems to be handling it fine. They gave her a dose of some other pain killer through the IV (I forget the name), and with some Tylenol, that seems to be holding her over pretty well. She has been sleeping much more peacefully for most of the last 5 hours, which is GREAT.
We are still in the PICU right now, but we're hoping to move to a private room on the pediatric floor within the next few hours. I'll keep posting as I can.
Monday, November 29, 2010
Addy's surgery is officially over!!! Everything went REALLY well.
Now for the long version of the story...
We got to the hospital about 9 am. They took Addy back to the OR about 11:30. I went with her and held her while they put her to sleep with a gas mask. She didn't like that very much, but she went to sleep pretty quickly. Leaving her there was hard, but I knew she was in good hands.
At 12:30, we received word that the surgery was started. We got updates about every hour after that, letting us know that everything was going well. (That was definitely helpful!) A little before 5, they told us the surgery was finished and called us back to talk with her doctor.
Dr. Marcus (the plastic surgeon) told us that the surgery went excellently. She had very little blood loss -- he said they probably would not have even done a transfusion except that they already had my donated blood there, so they went ahead and gave some of it to her to make her a little more comfortable. He was very happy with the way the cranial vault reconstruction (reshaping of her head) went. He said he actually got through that part really quickly -- in about 3 hours -- but the little dermoid cyst on the back of her head was apparently pretty annoying and took about another hour after that. But overall, he thought everything went really great and really smoothly.
When we saw Dr. Grant (the neurosurgeon) later, he added the good news that her brain adjusted right back to where it should have been if her skull had not been compressing it a little. All good on that front as well!
We got to see Addy about 5:30. She looks GREAT!! I mean, she definitely looks like she has been through a lot, but she looks a lot better than I thought she might. And we are very happy with how her reshaping of her forehead looks. This will not be a final result at all and will be changing over the next several months and even years, but it already looks a lot better.
As of less than an hour ago, she was going in and out of sleep a little, but is mostly sleeping, waking up and crying for a minute, and then going back to sleep. We'll see how things go throughout the night.
For now we are praising God that everything went so well. Thank you, Lord!!! And thank you all for praying! Please continue praying for her as she recovers. THANKS!
Addy just after surgery
(I will be posting a link to more pictures later at some point.)
Tuesday, November 23, 2010
Sunday, November 21, 2010
Addy is mysteriously sick again. Fever up to nearly 103.5. I suspect either a freak flu or roseola. This is seriously the second time she's gotten sick in her life. But, like the first time, it is causing another surgery cancellation. I am really, really frustrated right now. But I know I have to believe God is still good and in control, even when I don't always feel it.
Monday, November 15, 2010
Got a call this afternoon with a reschedule date: November 22. YAY!! Thank you, Lord, for a quick notification and a quick reschedule time!!! We are working out the details right now, but we should be set for that point. I'll be so glad to have this thing OVER!! :-)
Friday, November 12, 2010
Update: Surgery not happening today. We brought Addy in since she seemed to be a little better this morning, but when the anesthesiologist (who makes the final call) saw her, he pretty much immediately told us there was a problem. Most likely she has Fifth disease. Hoping to hear back this afternoon about when they can reschedule.
Thursday, November 11, 2010
So... um... Frustration of all frustrations, Addy suddenly came down with a fever today for the first time in her life. UGGH. The docs are still willing to at least evaluate her tomorrow morning to see if she's all right for surgery, but right now I'm thinking it's doubtful. I don't think I will be comfortable with it unless her fever is gone when she goes to bed tonight. PLEASE PRAY!!
Friday, November 5, 2010
This time next week, Addy will most likely be in surgery.
We are still not sure what the exact time of the surgery will be: they will let us know the afternoon before. (They always leave the schedule open until the last minute in case they get any emergency patients or have to postpone a surgery if one of the patients gets sick.) Most likely, though, we will get the first slot, meaning Addy's surgery would start around 7:30 am. An early day for us, to be sure, but I think it's preferable to go ahead and get this thing over ASAP.
After all of our pre-op appointments yesterday, this is finally beginning to seem real. I am not looking forward to spending all that time in a hospital with a likely miserable baby, but I will be glad to get it done and resolve Addy's health concerns.
Speaking of which, we learned a few things yesterday. First of all, the small lump on the back of her head is a dermoid cyst. To my understanding, this is something that occurs during development in the womb. As two suture lines of the skull close during embryonic development, dermal or epidermal elements can be pinched off and form cysts. This seems to be what has happened in Addy's case. Dr. M thinks they should be able to remove it during her cranio surgery, but they will have to see how it goes. This would be very good news for us if they could go ahead and remove it, since it would mean one less surgery we'd all have to go through!
Another thing we learned happened during our pre-op eye doctor visit. Normally any child with craniosynostosis will be sent to an eye doctor before the operation to check the position of the eye orbits, and then again afterwards to make sure nothing has been improperly displaced as a result of the surgery. In Addy's case, it was especially informative because she was already displaying some eye misalignment that we wanted to learn about.
It turns out that this problem could be related to the craniosynostosis, but not necessarily in the way that we thought. Dr. Y (the ophthalmologist) found that Addy has a pretty substantial astigmatism in her left eye. This could be caused (at least partially) by the improper shape of her head, which causes her eye shape to become skewed and thus cause the astigmatism. So it is possible that this could be corrected (at least partially) during the surgery.
The problem that is occurring, however, is that the astigmatism makes Addy's vision in that eye very blurry, which means that her brain will prefer to ignore that eye and use only the right one. This causes the muscle in the left eye to become lazy since it is not being used very much, and as a result the eye will tend to drift to the side.
If it were to stay this way, Addy's brain would eventually learn to ignore that eye permanently, so she would lose her depth perception and 3D vision. It is especially important to make sure the problem is corrected before she is a year old. I am hopeful, however, that we may be able to correct the problem without further surgery. We essentially just need to teach her brain to recognize and use her "bad" eye, both with patching and (probably) glasses sometime shortly after the surgery. Yes, we will most likely have one of those kids with the cute little glasses. :-) I have never seen one as young as Addy, but I'm sure she'll grow into it.
It is possible, however, that her eye muscles may still require surgery to tighten (or loosen) them after her other surgery. Please be praying that this will not have to be the case, and that we can resolve this problem with non-surgical methods!
Other than these bits of news, most of our day yesterday was spent learning more about the surgery and the logistics of our stay there. It will be interesting, that's for sure, but it sounds like it should be about as convenient and accommodating as a hospital stay can be. I will likely be staying with Addy for the majority of the time -- maybe switching off or sharing the duties with Jeremy for some of the time. We'll see how it goes.
Please be praying...
1) For Addy to stay healthy in these days leading up to the surgery. We really don't want to have her get sick and then have to postpone everything and figure all this out over again!
2) For everything to go really well with the surgery -- that the Lord would guide the hands of the surgeons and give them the wisdom to know exactly what is best for Addy. Pray that everything would go as safely and smoothly as possible.
3) That the cyst might be able to be removed this time and not require an additional surgery.
4) That the surgery might help and not harm Addy's eye situation, and that the remaining issues would be able to be corrected without further surgery.
5) That Addy would not have too much swelling or be too uncomfortable or frustrated. There can be quite a bit of swelling with this surgery, so much that the eyes will very often swell shut. You can imagine how frustrating that would be to a little one who has no understanding of what is going on. Please pray that the swelling would be as minimal as possible and that Addy would be able to stay as calm and get as much rest as possible.
6) That we will get good nurses! I know how frustrating it was to have rather insensitive nurses when Lucy was in the NICU, and I would really appreciate not having this problem with a much more intense situation here.
7) For the rest of the family. Pray that the girls would do really well while they stay with Jeremy's mom, and that they would not miss me too much. (I have never been away from them for more than 12-24 hours once or twice in their lives, so this will be very different for all of us.) Pray for Jeremy to have the wisdom he needs to know where he is needed most and the strength to take care of whatever needs to be taken care of. Finally, please pray for me to have the strength and wisdom I need to care for Addy during her recovery. And pray especially for us all to have peace, recognizing that He is in control and will supply all our needs during this time.
Thank you all again for your concern and your prayers!