So for starters for those of you who don't know, we found out I was pregnant with this sweet little gem on our 8th wedding anniversary this year, May 13th.
His name is Brooks William. Is he not the sweetest?! He is truly our little miracle. He was born on November 18th at 30 weeks and 5 days (Birth story later). He was 2lb 13.8oz at birth and has gained 1lb since birth so he is 3lb 14oz. He is still in the NICU though:( He is doing good, but he had a rough start. He was intubated at birth so he was on a ventilator from the get-go. They kept having to adjust his settings higher, he received surfactant three times (which helps the lungs to expand) and that didn't help like they expected either. They tried a different ventilator, an oscillator, to see if that would help. Well, I was pretty hysterical when they told me that. That was the "last resort" ventilator they used for Reese before she died so all I could think was that we were headed in the same direction. Once I explained that to them, they reassured me that they were only using it as a different type to see if he would respond better. It didn't ease my fears that I might lose my baby again, but helped to know that it wasn't because he was requiring that much support. He ended up not tolerating it and actually required medication to calm him (he was pulling his tubes out and got himself the nickname "maniac") so they switched him to another type of ventilator which he ended up staying on. He has never required a lot of oxygen, he just doesn't expand his lungs enough. Thankfully, when he was 4 days old he was able to be extubated (no tube to help him breathe) and placed on non-invasive respiratory support to help put some of the pressure into his lungs to help them expand. He was then able to be weaned off of that when he was and he now he has the nasal cannula for a high humidity flow to help expand his lungs. He started on 4L and weaned down to 1L which is what he is on now. He mostly just has issues with dropping his oxygen during or after feeding times (when his belly is full, he spits up or refluxes). Lately he has had apneic (stops breathing) and bradycardia spells (heart rate drops) with his feeds because he is having some reflux. It makes this mommy very anxious. Even though I'm a nurse, no one wants to see their baby stop breathing and turn blue, especially when you have lost two babies. I don't care how common it is for preemies. I generally plan to hold him during his feeds which is when it has been happening so I've changed my plan and started holding him about an hour after his feeds. That seemed to help today. He has had minimal episodes when he is in the isolette, but even when he does he seems to recover more on his own than when I'm holding him. We actually have to stimulate him to start breathing again (rub his chest, re-position him, flick his foot) when he has had the episodes and I am holding him. He is on caffeine to help prevent these episodes, but his are caused by reflux more so than from brain immaturity. They still won't stop the caffeine for a while yet. The other issue he is having is with spit ups. His feeds run on a pump for 45 minutes and they have been trying to cut back to 30 minutes, which they know I don't want. He doesn't tolerate it. They want him to be at 30 minutes because when he starts taking more bottles he will only have 30 minutes to take it if he doesn't tire out first so they want to get him ready. He is no where near taking a bottle like that so to me there is no reason to push it. They still tried to change him to 30 minutes today and I didn't know until I got there and he had 2 feeds like that. I knew he wasn't ready and of course the nurse said he had spit ups with both feeds and then a projectile one when we were there. I know a spit up doesn't seem like a big deal-that's what babies do. But when you have a preemie who stresses out (high heart rate or low oxygen/low heart rate) when it happens, it's a big deal. So I made them change it back. His regular Nurse Practitioner wasn't there this weekend, but she will be tomorrow and we will be having a little discussion about it. He was on the ICU team originally and now he is on the transition team to "transition" them home. Age wise he should be starting to wean off the caffeine, starting to take bottles, etc but he is taking a little longer and is just not ready.
Premature babies are at risk for retinopathy of prematurity (ROP) so they are doing an eye exam tomorrow. Brennan had this done once after he was discharged and it was horrible. I had no idea what to expect and it was like something out of an exorcist movie. I am dreading this for Brooks tomorrow:( It's probably not as painful as it looks, but I definitely don't want to see it, but I want to be there to comfort him after. I know I am going to be so emotional tomorrow (which isn't too different from other days honestly) They do use numbing drops, but they said the medicine they get can cause those apnea/heart rate drops-we don't need anymore of those so let's hope it doesn't cause them for Brooks and that he has a normal eye exam. Depending on the results they do the exam every 1-2 weeks until they are full term and the vessels are done developing.
The famous question "When does he get to come home?" I wish I knew. It just depends on how he does. He definitely can't be doing the above business with eating when he comes home. They usually use the due date as a general estimate. His was January 23rd. I didn't think it would be quite that long, but with the way he is progressing at the moment I do think it will be close to that. He gets all of his feeds through the tube in his nose. So we have to be taking all bottles to go home. This is about the time to start and I have tried three times with bottles because he does show typical signs that he is ready (awake and alert at feeding time, rooting, putting his fists in his mouth, taking a pacifier). There were a couple of days he was working a little harder to breathe so I didn't push it at all, just basically put the nipple in his mouth. He had an oxygen saturation drop with one bottle after taking about 2ml. It's a lot for preemies to learn to suck, swallow and breathe plus it's a lot of work! So he just isn't quite ready. He also needs to be able to keep his temperature up on his own to be discharged, which most likely by the time he has mastered everything else won't be an issue. At this point he is in the isolette, they want him to grow and don't want him expending energy to keep his temperature up. He also has to gain weight of course and he has been doing well with that. They want him to gain an average of 30gm per day and he actually did just that over the last week which is great.
I love this little boy so much I can hardly stand it. I hate being away from him and I am just so ready to bring him home. It is quite the challenge to balance life at home with Brennan and trying to keep things somewhat normal for him while feeling like I have enough time with Brooks. Well, there is never enough time, but we are doing what we have to right now to make it work. I am thankful that I am able to go to the hospital every day. Since Brennan is in school I can spend most of the day there and we are lucky to have family to pick Brennan up from school so I don't have to rush back (and he likes this time with family too). I am home for dinner, homework, bedtime. Those are the things that are important to keep consistent for Brennan. Plus, it is extremely important to him that I tuck him in at night.
So welcome our little Brooks and send lots of thoughts and prayers his way to get big and strong and come home soon.