Boys Are Doing Great

I'm sorry I haven't posted, we've been busy preparing for our babies to come home!

Nolan was taken off the gavage tube Friday night, and has been doing great ever since. It was like he needed a reminder that it was his job to eat for himself, and he did not want that tube in! So he began eating again.

They were both a week without caffeine on Monday. Monday, the neonatologist who was there when I delivered wanted their pulsox (pulse oximeter) put back on. They had taken them off on Monday, I think. It's a little band around their foot. The doctor said that they don't necessarily need them on anymore, because their numbers were always 99 or 100, but when they had bradys, it helped to have them on the pulsox to see if it effected the brady level. So, really not a setback.

Nolan and Brooks have been doing a wonderful job with their feedings. I am so proud of what big boys they are becoming. The speech pathologist has been checking in with them since last week. I met with her again yesterday so she could observe me actually feeding them with a bottle, to see if I had any questions and to make sure I knew how to watch their breathing. (Thank goodness for all that daycare experience with my mom!) She said they were doing so well, especially considering their gestational age! They are learning to take breaks while feeding on their own, meaning they know when they need to stop to take some breaths, which is big for babies only 35 weeks! Sometimes they need to be reminded, especially Nolan, but they really do pretty great on their own.

They keep telling us they'll be home soon, and that they'll give us "some" notice, but we just don't know when yet. One of the nurse practitioners told us yesterday that even though the number of bradys they've been having has gone down, they are still having enough to need to be there.

This hospital won't send babies home on machines anymore, which really, I'm kind of glad about. I would not want to have to rush back and put my babies back in the NICU because something happened at home. I know it still COULD happen, but I'd feel better with them coming home as healthy as can be.

Every nurse has been telling us discharge stuff. The biggest thing being to limit exposure of the babies, which I know will be hard because everyone wants to see them. Their immune systems are not strong enough yet, and we have to be careful about people touching them, and they told us to keep tons of antibacterial soap around.

They told us to bring their car seats in and receiving blankets, for the car seat test. So 1 car seat is there and ready to go. They told us to start collecting lots of the necessities- newborn diapers, newborn clothes (our big boy Nolan was never really in premie sizes!), burp cloths, blankets, wipes, all the fun stuff. They also had us sign the consent to have their hospital pictures taken, which they are taken on discharge day in the NICU.

Shane and I are trying to get things ready at home. It's exhausting trying to do things at home, and live at the NICU. I really think it will be easier once they are home. I'm getting tired of people saying "oh, it's only just beginning" when they ask how I am, and I say I'm tired. I know I'll be getting up all night long, I'm already doing that to pump. I know I will be busy all day, I already am. The biggest difference will be that I won't be sitting in a hospital 6 hours a day on top of everything else, or sitting in traffic to get to the hospital. And poor Shane can actually go directly home after work for the first time in months.



A Somewhat Bitter Side Note (which follows the above comment I get from people AND brings out my sarcastic side that I always get in trouble for, so I apologize):

When I was looking up a link for the pulsox, I found this little site about what not to say to premie parents:

http://www.inspire.com/groups/preemie/discussion/what-not-to-say-to-a-preemie-mom-parent/

I understand where a lot of women are coming from on here. There are some things people have said that I know I probably give them my "are you stupid?" look, but honestly, what's important are my babies and how well they are doing. I'm not going to let what ignorant people say bother me, I have more important things to worry about.

The other thing, I think, is that people don't realize you've heard the same things over and over. It doesn't bother you the first, second, or fiftieth time, but maybe the hundredth time, it really gets to you. In my case, it would be the "Why did you have to go to inpatient?" or "why did you have to deliver early?". I don't mind answering this to most people, but people I am close to- I've explained the situation, I've sent you research links in emails, I sent you a link to this blog, if you haven't been paying attention to those things, maybe you don't deserve an answer at this point- and believe me, I won't give you one.

Oh and the other funny one I get is, "...and you'll have 2 of them!"  Yes, thank you...I didn't notice.

:)

Feeding

Nolan was put back on the gavage tube yesterday. He was getting too tired throughout the night to continue his feedings, and they were worried he wasn't getting enough. It's fine, though. It could be a million times worse. They are just not ready, they are only 34 weeks!!

I called this morning to see how they were doing and Brooks is taking his bottle feedings so well. The nurse this morning even suggested he might be able to go back on a normal flow nipple. Nolan, apparently, has lost interest in bottle feeding. He's wide awake and gives the cues that he wants to, but then he plays around or is too busy looking around to suck. It feels like a flashback to the biophysical profiles!! Brooks (remember old A...) would always do everything and pass the profiles, Nolan (old B) could always do everything, just not on the days he was supposed to! We know he can suck, and he can eat a lot (he was drinking 50 ccs before), but now he's like, "nah, don't feel like it today". He was doing that to me yesterday, too. I was there with my mom and he was trying to lift his head up, looking all over the place, and wiggling everywhere.

I'm not going over there till a little later today. I am going to try and get some things ready at the house. I hate not being there. : /

More Progress

When I went to the hospital yesterday I was met with 2 EMPTY faces..... there were no tubes! They were trying the boys without the gavage (feeding) tubes. Key word: TRYING 

They had been bottle-feeding all morning, Brooks taking 35 ccs and Nolan taking 50. So we breastfed twice, and supplemented a little after for more calories. They both did pretty well, the breastfeeding just takes so much out of them, they get tired so quickly. But the nurses warned me that they are just trying this, it is likely that both of the boys may need the tube put back in if the nurses are worried they are not getting enough to eat. 

And they are off the caffeine! So that means they have a minimum of 7 days left!

Today I went back and both of the boys were still off the tubes. But Brooks' nurse told me that he is really gulping a lot, and not taking breaks while he is feeding, so he is having bradys. While I was there, a speech pathologist (they analyze how their mouths function and feed the babies themselves to see how they react) came to feed Brooks and see how he reacts to the feedings. She started off with a regular size nipple, but quickly realized he needs a smaller one. She switched, and he just seems to have a hard time coordinating still the breathing/ sucking/ swallowing. He gets so excited when he realizes he's drinking, that he just sucks and sucks, and forgets to breathe. So even you give him breaks from sucking, by just angling the bottle away, he gets worn out from all the "exercise"- which is the other main concern. If this continues to happen, he won't get the nutrients he needs to grow, and will eventually lose weight from burning calories through sucking. So it was the recommendation from the speech pathologist to put the gavage back in for the time being. :(  She'll come back later in the week to see how he is doing.

I understood the reasons, I was prepared for it. The worst part is just them putting it back in. And I know things could be so much worse, and I've been there before when they have pulled the tube out themselves, but I just hate being there when they put it back in. He cried so hard. 

So he will continue to get 30 ccs through the gavage tube, but we will continue to breast/ bottle feed him every 3 hours. That way he will still be getting around 45 ccs, but we won't have to worry about him not getting enough from exhausting himself.

Nolan's tube is still out, and he is still doing really well with his feedings.

Growth updates:  Nolan is 17 and 3/4 inches long, and is 4 pounds, 15.2 ounces. Brooks is 18 inches long and 4 pounds, 4 ounces! My growing boys!