Surviving NICU Life as a Parent

The NICU is hard, and that's coming from someone who had it relatively easy in there. There's just no other way about it. The hospital my boys were in had a very nice NICU with a great staff of doctors and nurses. I'm not really sure how to organize my thoughts on everything regarding this experience, so I'm just going to list them as best I can.

OUR NICU EXPERIENCE

- our NICU was very upfront about things from the beginning (i.e. they rarely send babies home on monitors, tubes, etc.) and I was glad about that because it was one less thing I had to question and worry about

- they were very accommodating to parents' needs
    - there was a pump in every room for mom's, as well as a 'pumping room' if you wanted privacy/
       supplied a water and ice machine to keep mommies hydrated :)
    - they made notes on what parents liked to do for their babies- give baths, change diapers, feed, etc.
    - there were 'sleeping rooms' that you could 'hold' for a day to take naps, stay the night, or just go lay          
       down and relax in if you were staying at the hospital for a long amount of time. I used this once,
      when I stayed for a 12 hour shift
    - we were given a direct line to the NICU for updates, and the nurses were excellent in keeping with
       security precautions as far as making sure we were the parents of the children we were asking about
 
- there were a variety of resources to go to and staff welcomed questions
     - there was social worker who helped look into pediatricians and contacted us with discharge info
     - the doctors who were on staff would always come and see us to see if we had questions
     - nurses never dismissed our questions

TIPS

- ask questions, no matter how stupid you think they are; the more you understand, the more
  comfortable you are with what different numbers mean, what different tests are for, and what alarms
  are going off!
- dress in layers, I think this unit is typically kept very warm

MOST IMPORTANTLY
- put blinders and ear muffs on: don't peek in other rooms, don't try and listen to what is happening to
   other babies, focus on your baby(ies) or you will go crazy

Media

As many people know, Shane and I were in the paper yesterday and on the news last night and this morning. 

We had some errands to run today and we ran into a few people we knew who congratulated us on our great news. I also shared the news article to the 2 monoamniotic groups I joined on facebook, so that any moms searching for information can find the article. Hopefully it helps someone, especially if it's someone local. 

I had some reservations about doing anything related to the media at first. I wanted our privacy and I didn't want to exploit the boys. I feel very protective of them and don't want people gawking. At the same time, and Shane reminded me, we were so desperate for any information when we found out about this whole momo thing. If it is on record- through newspapers, tv, my blog, etc.; hopefully if a couple is out there searching for information, they will come across our story. I haven't heard of too many people in the Maryland/ Baltimore area with momo's. A girl from DC contacted me, and I actually know a woman who had twin momo boys 24 years ago. They didn't know much about membranes then, and didn't realize there was the possibility of not having a membrane until her boys came out with a knot in their cord.

I am very appreciative of people taking interest in our story. And I want to thank everyone who has contacted us for being so kind and respectful. :)

Life at Home

We are so in love with our boys.

It is the best feeling not to have to go to the hospital anymore. This past Saturday was pretty rainy out and I remember a day when it was dreary and raining awhile ago, and all I wanted to do was lay in bed with my family. Instead, we headed to the NICU. This past Saturday, we cuddled in bed with our babies while hearing the rain hit the windows. It was exactly what I had dreamt of my whole pregnancy- my family, together, safe at home. 

The boys are perfect. They are happy, they sleep wonderfully (except for occasional bits of reflux), and they continue to grow. 

We feed the boys every 3 hours. When we first had them home together, we (Shane and I) fed them together every feeding- each of us feeding one baby. After a few days, we were getting pretty tired. So we decided to feed them together mostly during the day. Then one of us getting up at 3 am and the other getting up at 6 am, then together again at 9 am. That way we each get about a 5 hour stretch of sleep. It seems to be working pretty well so far, we'll see what happens when Shane goes back to work!

The nursery is still a work in progress. Our flooring was backordered for a few weeks, but it finally came in. My mom, aunt, and sister had painted the nursery when I was in the hospital, and the furniture comes this Thursday. The boys are sleeping in our room right now, which works out fine. The dining room table has been transformed into a changing table/ clothing storage station. I decided to strip and stain an old dresser myself- my mom helped with sanding because I feel so weak after awhile. She keeps telling me it's from being so stationary in the hospital, which I know is true, it's just frustrating! 

The whole house is really still a work in progress. My family has helped so much- organizing my kitchen, going through things in the extra bedroom, and cleaning out stuff in the basement, PLUS stocking me up on baby supplies since I still haven't had a baby shower- but I will soon! :) And now I can get excited about it! 

Through it all, Shane and I still had time to celebrate our 11 year anniversary of dating last Sunday with a nice dinner at home. Cheesy yes, since we're married now, but we celebrated it for so long, it's hard not to! I've also had my hair done, bought some new clothes, and Shane's even had time to hang out with some friends a little bit. It's amazing how much more time we have to relax a little bit now!

I'll keep everyone updated on our sweet boys! Life at home is perfect so far! 

Brooks is Home!!

We've been busy, busy, busy!

Tuesday we took Nolan to the pediatrician= everything is great!

Shane went to the NICU on the way home from work and then I went later that night. The nurse said that they (the NICU team of nurses, neonatologists, pediatricians, etc.) think Brooks might be able to go home Monday. At first I was kind of sad about that, but I reminded myself that he needs to be in the NICU, and it's the best place for him to be. It was so sad leaving him again. The only thing that made it easier was that he was zonked out!

Wednesday morning we called and everything was going great. Nolan was doing great at home, he's such a good baby! My mom has been around every day continuing to help me get things ready, so we were very busy that day. The plan was for me to go to the NICU for his 2 pm care time and stay till around 4, and then Shane would make it to his 5 pm care time and I would go home to work on things at the house.

When I got to the hand washing stink inside the NICU, the speech pathologist approached me and told me she would like to see me one more time during his feeding to see how he was doing. Since he was probably going home on Monday, we planned to meet on Friday.

Then when I got to his room, the nurse told me that things had changed. After his cares, she was going to put him in his car seat for his test! I was so excited! She said the doctor thought he could go home on Friday!! I was thrilled.

Then, as I was feeding him, the doctor came by and said she wasn't too concerned about the small dips in heart rate, because they weren't that low and they were quick. AND that they'll see what happens for tomorrow (Thursday!). I didn't want to get too excited, so I still mentally prepared myself for Friday or even Monday. I ended up staying for his whole hour and a half car seat test and then I left to go home to Nolan and Shane came for his 5:00 feeding.

This morning, when we called to see how he was, the nurse reiterated that she heard discharge could be today! But they hadn't done rounds yet. I had a meeting with a home nurse today, but I couldn't wait to get over there. The social worker called me around 11:30-12 today and told me that discharge WAS going to be today! I called the NICU nurse a little while later to be sure. As soon as Shane could leave work, he came to pick me up and we went and got our little boy!

So far, everything is wonderful. I held both boys on my chest for the longest time. It is the best feeling in the world, having your family healthy, and in your home. <3

Sweet Nolan is Home!

I got a call from the hospital this morning around 9 am. I usually don't call until 9:30-10 because they change shifts at 7:30, and their care times aren't until 8 and 9, that way the new nurse can actually tell me how they are from her experience, not how the previous nurse told her they were. So anyway, I was waiting around to call and of course I freaked out for a split second when I saw the first few digits of what I knew was our hospital number. As soon as I picked up, the nurse told me everything was fine, but she wanted to know if we had left outfits there for their pictures to be taken. Immediately I knew Nolan might be going home soon because they don't do NICU baby pictures till their discharge day, but I wasn't sure. I told her we were coming in before their 11 and 12 care times.

So we got there and the photographer girl was there already taking their pictures. When the practitioners, doctors, nurses, and neonatologist came by for their rounds, the practitioner asked if we had heard Nolan was going home today. We said, "we heard it was rumored he was going home..."She responded, "He's being discharged today." Yea!!!!!!

So we spent part of the day there, just so we could be with Brooks for some of it. Then, after Nolan's 3:oo feeding, when he was happy and nice and full, we left. I think that after the pregnancy- wondering if the babies were alive everyday, this was the hardest part of the whole experience. It was heartbreaking leaving Brooks there alone. I felt terrible separating them. I know it's for the best, and Brooks still needs to be there, but he's always been with his brother. He's doing so well. I'm so afraid he's going to have setbacks because he's aware his brother's not there anymore. It was almost hard to be happy about taking Nolan home when I knew they wouldn't be together. It's going to be hard balancing being at home with Nolan, and still spending time with Brooks. I don't want him to think we've left him there forever by himself. Shane reminds me he won't remember this, and he is in the best place he can be right now, but it's still sad.

As we left, we took pictures with nurses and the practitioner. Everyone ran to be in the picture when they saw we were leaving. Everyone loves our boys!

So earlier today, the speech pathologist came back to see how Brooks was doing. He is still having bradys while he is eating. She told me she thinks we just have to be more patient with him, even though he is taking his own breaks, to maybe help him take his breaks longer and a little more often. She watched me again to see how I did. She complimented me because she said I really pick up on all his cues, when to break, how long to break, when to sit him up, and when he is ready to keep going. So, we'll see how he does. The practitioner said he is only a few days behind. Again, this is not a setback, he technically is further along than he should be anyway. They are 36 weeks gestation today, and 4 weeks old. :)

My Nolan is squirming close by. I can't believe he is here. I've been a mommy for 4 weeks and this is the first time I've felt like one. Shane said the same thing on the way home. Our prayers have been answered, we are so lucky. I just keep praying Brooks will be home soon.

AND.........

Friday I spent the day with the boys- from 8, to 6:30. Which is a loooong day in a hot, small hospital room. Being in that room for 2 hours puts everyone to sleep. To top it off, I had a terrible migraine, which I haven't had one that bad since before I was pregnant. I think I only had 2 while I was pregnant. Anyway, I loved spending the day with the boys. And they blocked off one of the rooms they give to parents for me. The room has a bed, chair, and nightstand in it- just so you can take naps or stay the night if you live far away.

The boys did wonderfully with all of their feedings and I gave them both baths all by myself (no one was watching over me). I don't think she had to watch over me because she took off all their leads, where the other nurses kept them on for their baths. My mom came and spent a good portion of the day with me so I wasn't by myself, which was nice :) AND when I went to lay down in between feedings, my mom would sit with them so they weren't alone.

I texted Shane pictures of the boys after their baths and he couldn't resist not being there, so he came on his lunch break to visit them.

Yesterday they both had great days. Brooks didn't have any bradys and Nolan had 1!

Today, when we got there the nurse told us that after Nolan's care time, she was going to do his car seat test!!! A car seat test is where they place a baby in their car seat for 90 minutes, attached to all their monitors, to see if they can make it without setting anything off for a long amount of time. I think someone told me 90 minutes is the minimum time they do, if you plan to take long trips anytime soon or you live far away, they do it longer.  If a baby doesn't pass the car seat test, they redo it in 24 hours. If a baby doesn't go home within 72 hours after their car seat test, they have to redo it. So when they do the car seat test, they pretty much think they are going home soon. AND to top it off, she said that Brooks will probably have his car seat test done tonight! According to the nurse practitioner, Brooks could be going home soon, too!! Deep in my heart I was hoping both boys would go home together, but I was preparing myself for them going home separately. I just hope that they aren't separated for long.

ANYWAY Nolan PASSED!!!!! He was so cute. He kept looking around, wondering what he was doing all strapped in. I was soooo proud of him.

The nurse said that because we gave Brooks his bath, we weren't going to do his car seat yet. It would have been too much for him. We had done Nolan's car seat test before his bath, just based off of their care times. So she said maybe the night nurse would do it. We have to leave the NICU at 6:30, so I called at 7:30 when they opened back up to see if she really was going to do it. She told me she was going to wait and see for a little while, just because he did have 3 bradys today (all low and self-resolving). I'm going to call back a little later and see what she plans to do. 

I can't believe we might have both our sweet angels home this week. I don't want to get my hopes up, but I really, really, hope they can come home close together!

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. : /