I just wanted to update about Maddy's condition today. Last night, it was a bit difficult for us to hear that Maddy had been transferred from the Special Care Unit to the NICU. In my mind, I thought there were two levels in the SCU/NICU. I thought that SCU was where the babies are for observation when they're not that sick, and that NICU was for the babies who were critical and in danger of dying. And although there are some truths in that, I was thinking about the two extremes of both NICU and SCU. Maddy isn't in a critical condition at all, I think that they just don't use the CPAP machine in the SCU wards and so she's in the "least serious" NICU ward there. The other babies in there with her aren't the delicate, frail premature babies fighting for every breath but are also mostly full term and not very seriously sick.
Overnight, Maddy was pretty stable and by morning, they had even turned the CPAP down a bit. The doctor is going to be weaning her off it slowly. Maddy doesn't like the machine at all, she fights against it and cries quite a lot - but when she actually succeeds at ripping it out, she calms down and is happy. I know that's a good sign ;)
Maddy's already had quite a few specialist visits, and has even more lined up. She has seen (or will see in the next couple of days) the radiologist for a full skeletal survey (x rays of her entire body), the ear nose throat specialist, the geneticist and the orthopedic doctor (whatever the proper name for that is). I can't remember if there are more than those. She's mostly in the care of the pediatricians and nurses at the NICU though and they're really good with her. The pediatrician is a sweet heart - I was talking to him last night and he said to me "She really is a sweet little thing, isn't she?". She's in good hands there!
I came home from the hospital today - I asked for an early discharge because there's not much that I can do for Maddy at the hospital. I will be there every day and will be making sure I know medically what's going on, and I will be pumping and taking milk up for her - but I know that I can look after myself better at home where I can rest, eat good food and be with my family instead of alone in a hospital ward, unable to sleep because of the cries of other peoples babies when my own is four floors above me.
It was hard to leave Maddy in the hospital, but I know that's where she needs to be to get the care she needs right now - and it's only for a time, until she gets a bit stronger. I know I could be anxious about it but really I'm not. I knew that this might be necessary for her, and so we were a bit more prepared for it. Neither me nor Bernard have held her yet - although we've tickled her feet and patted her on the back lots. She is on an IV drip and can't have anything orally until her breathing is a bit more stable, but I'm pumping for when she can eat and drink because I know that's the best thing for her too.
I know that most mothers don't go through this kind of thing with their newborns, but I know that Maddy isn't like most babies... and most babies like Maddy do need a bit more care and attention as they transition into the world. It's only for a time and we know that she'll be home with us as soon as she can be :) She's going to be ok :)
So glad to hear things are moving along well! Most kids like ours go into the NICU, so don't be alarmed! Sonya was in the NICU for 5 days and I know many of kids with various skeletal dyaplasia's that have been in either shorter or longer amounts of time depending.. Sonya's nurses said she was the healthiest baby in the NICU! Glad to hear the doc's will be gently weaning Maddy off of the CPAP. You got it right, Orthopedic doctor! So glad to hear that all the right doctors are coming to see her and that you have a very friendly pediatrician!!! You are doing a fantastic job Nicole doing what is best for your baby! You are a very strong and awesome mother! Hang in there, it won't be long until you can hold your sweet Maddy! We send our love, hugs and prayers!
ReplyDeleteCongratulations on your baby girl, Maddy. I love her name. I hope that her breathing will get better for you and that the doctors take good care of her. I also am praying for her. I hope you consider sharing some pictures!
ReplyDeleteDear Nicole and Bernard
ReplyDeleteFirst of all, congratulations on the birth of Maddy! Another beautiful daughter to make you a family of four.
I post on Geobaby (under the name Honkyblues) and I've been following your blog - probably because our due dates were about the same. I gave birth to my 3rd boy on 18th July. He was one week late, so I really related to your post when you expressed your surprise about going late with your second baby, after Lana was a few days early.
I can also relate to your worries about the breathing, as Constantine (my new baby) was whisked to SCBU a few hours after his birth, having turned blue and begun panting. He was in an oxygen tent for 2 days, and was nil-by-mouth during that time, so I was hand-expressing 'liquid gold' as I'm sure you're doing too, Nicole. Thankfully, my little boy recovered well (he had an underdeveloped 'wet lung', despite being born at 41wks weighing 3.9kg!)
Obviously, I didn't have any of the skeletal dysplasia issues that you are going to be facing with Maddy, but I have read the posts by both of you, and I feel that your faith and your strength will pull your little girl through any difficulties. She's lucky to have been born into such a special family; she will bring you the gift of happiness and you will give her the gift of love.
I just want to let you know that strangers - such as myself - are thinking of you.
with love and strength
Caroline