Thursday, July 26, 2007
Friday, July 20, 2007
Wyatt and Parks celebrated their two month birthdays on July 15th with copious amounts of breast milk, pulled an all-nighter with minimal sleep for all, played their white noise machine a little too loud, and some blood was spilled...on testing blood sugar. It was rockin'.
They got weighed this week. Wyatt is now 5 pounds, 12 ounces and Parks is 9 pounds, 2 ounces. They are both gaining roughly an ounce a day. Wyatt is eating about almost 3 ounces every feeding, which is outstanding for a baby his size. Parks is eating around 4 ounces. Unfortunately, often when their reflux acts us we ending up seeing a lot of this milk twice. We have also started adding rice to Parks's food to help with this, and, as an added benefit it should assist with weight gain. Maybe we should give Wyatt some as well.
It has been pretty tough around here recently. We are still trying to figure out their sleep behavior and get them into a reliable routine. They are starting to do a bit of a role reversal with Parks acting out during nap time and waking Wyatt up. We are trying a few new things to get Parks ready to sleep through the night in the nursery. This means kicking them out of our bedroom at night and the investment in a good video monitor. We are so fortunate to be able to afford (although barely) all the technology and the night nurse to give us the help we need.
Thursday, July 12, 2007
As I type this, Wyatt is beside me in the pack 'n play trying to sleep. He's grunting, groaning and just generally complaining about the fact that he's in the pack 'n play and not on someone's chest. How does a child who spent six weeks in the NICU come home spoiled? I choose to believe it's more a function of the fact that he was missing that human touch when he was in the hospital. He hasn't had much very good sleep at all today, and I am already dreading going to bed tonight. Although, I am so happy to have him home with us, I am really not enjoying this time. I find myself wishing for it to be three or four months from now when they might both be sleeping through the night. I know if I could just get a good night's sleep then I could make it through the days.
It's amazing what a bond is formed with other mothers immediately after you've given birth. I have so many close friends who are already mothers that I feel I have already bonded with on a whole other level. I have two friends in particular who have recently delivered boys and it has been such a blessing to be able to call them with questions and sometimes just to vent. As I was speaking with one of these women tonight she made a statement that Wyatt is a survivor...that it was just a few short weeks ago that we weren't even sure he would make it. From her perspective, he's an answer to prayer. He's here and he's thriving, and that's all that matters. But from my narrow, day-to-day perspective, I have just been complaining and wishing we weren't in this phase. I'm living the sleepless nights and endless days, fumbling around trying to learn how to be a mom to twin newborns.
How quickly I need reminding that this is my little miracle, who was literally starved in-utero, who at times we feared would not make it, who struggled for six weeks in the NICU, but who is thriving at home right now. How quickly I forget God's faithfulness. He brought me through that and He will bring me through this. We named him Wyatt for a reason and he continues to prove that he is our "little fighter."
Tuesday, July 10, 2007
Here are some pictures I have been meaning to post. I just noticed that all the pictures are indoors. We don't get out much these days.
Sunday, July 8, 2007
We had a very good holiday weekend with one of Randi's high school friends and her husband coming to visit for a few days. Their first child is due in September. She was a ton of help for us and it was good practice for them. On Friday night we were able to get a night nanny to stay at the house. We went to a fun dinner and were able to get a full night's sleep. She kept very detailed records of when they slept, when they ate, and what the meds and blood sugars were. It was actually very informative to see exactly what their sleeping patterns look like, particularly Wyatt. We were very happy with her and are looking forward to having someone here a couple nights a week, most likely until we can get Wyatt sleeping consistently between his feeds.
We were also able to take both kids out to eat a few times this week. It's so odd to have to have people be accommodating to us, with our two infant carriers needing two high chairs and an extra large table. On one dinner and lunch occasion everything went off without a hitch. They both slept the entire time we were at dinner and were able to keep to their schedule even with all the distractions and breaks from our routine. On one other dinner night out, we went to a local pizza place. It was busy and we were a little worried. They were able to stay asleep during the dinner, but during the course of the meal the music in the establishment rose considerably to a crescendo. That night we had the worst night with both of them. They were so over-stimulated they couldn't help it. We had pushed them too far, and they made us pay for it.
We have now titrated Wyatt's steroids to what is considered a replacement dose or physiologic level. He has been sleeping better over the last few days, although he is still not a good sleeper and seems to sleep better during the day than at night. As a result Randi and I are extremely sleep deprived. He does seem to be much less agitated and in general a much happier baby. If his blood sugar continues to hold steady, we will titrate his other medication as well. The ultimate goal is for him to be free of these medications completely in the next month or so. They are both eating above the estimate amount for their size and age. We are hoping this will translate to more pounds for them both, especially Wyatt. They are holding their feeds pretty well, although Parks has started spitting up in larger quantities but does not appear to be in any pain. We are getting more efficient at feeding and getting them down without too many hiccups (literally and figuratively).
UPDATE: Randi took both boys in to the pediatrician's office today. Wyatt is now 5 pounds, 7 ounces, and Parks is 8 pounds, 12 ounces, 5th percentile on the normal growth curve.
Wednesday, July 4, 2007
Thanks so much for your prayers. Wyatt's blood sugars have remained well above 60, hovering between 100-130. If he maintains his sugars, he will be weaned on Friday to what's considered a physiologic or replacement dose. So far we haven't seen significant improvements in his demeanor, but we knew it would take some time for the medication to get out of his system. We'll keep you posted.
Monday, July 2, 2007
Wyatt has now been home for six nights...that is six almost completely sleepless nights. We are trying to get to know him and understand his wants and needs. I didn't realize how little I really knew him until I got him home. I've been visiting the NICU for six weeks, but seeing your child for only a couple of hours per day is no way to foster a bond. I would like to say that he's settling in well; however, we are having a really tough time with him. At first he was being very fussy right after he ate. The nurses in the NICU had talked to me at length about his reflux and spitting up, so we spent yesterday morning at the pediatrician's office and left with a prescription for Zantac. Hopefully, it will help. As the days have gone on, it seems he is getting fussier and fussier, almost constantly. Literally, I don't know if the child gets more than a couple of hours of good sleep in a 24-hour period. It is very hard to comfort a baby that seems so unhappy all of the time. And it's not just that he's unhappy, a lot of the time he sounds like he's in pain. As Todd shared before, he's on a couple of meds for his hypoglycemia, one of which is hydrocortisone, a steroid. After some research, on the internet of course, I decided my son must have "roid rage." I called the pediatric endocrinologist first thing this morning and had my appointment for tomorrow bumped up until today. In the event it was something unrelated to the hydrocortisone, I also had my Thursday pediatrician's appointment moved up until today. After spending the day in doctors' offices, we did come to the conclusion that it most likely is the steroids and we have permission to begin weaning him. As far as we know Wyatt still has a cortisol deficiency so at the very least he will most likely need a replacement dose of the steroids; however, Todd and I did not realize that his current dose is more than double the replacement or physiologic dose, hence all the crazy side effects. So, in order to continue to wean him each day he must maintain fasting blood sugars above 60. He has consistenty maintained blood sugars above 100 since he's been home, so hopefully he'll be okay. Please be praying he can maintain his sugars and we can successfully wean him. It is both heartbreaking and frustrating to see your young child in so much distress.
I hijacked Randi's mom's camera this week and downloaded a bunch of pictures off of it. Enjoy.