Wednesday, December 18, 2013

Our Experience in the NICU

(Warning: This post might be a little scattered brained... not only am I on like 5 hours of broken up sleep, but I also just have so much to say, but am not really sure how to organize all my thoughts... so, bare with me. Also, this post is hella long. Again.)

As I said in our birth story, about 45 minutes after she was born, Bailey was taken to the NICU. Hardest moment of my life thus far. To see your perfect little baby who just came out of your belly be carted away and have there be NOTHING you can do is absolutely terrifying, even in the best of circumstances-- which we had. I KNEW, in my head, nothing was seriously "wrong" with Bailey, as they let her stay with us for so long. I knew she wasn't "sick"... but, in the heat of the moment, none of that mattered. All that mattered was she wasn't with me and that SOMETHING was wrong.

When they took her to the NICU, the Hubs went with her. That was something we talked about long before. I'm sorta a pessimist (me?!?! Never!) and so we talked about some of the worst-case scenario things and the Hubs and I both felt very strongly that Bailey not be left without someone who loved her, so he would go with her, no matter what. It helped a TON that the Hubs parents were there, so they stayed with me while the nurse finished cleaning me up and such. They were able to distract me so the full impact of Bailey leaving didn't hit as hard as I'm sure it would have had I been left alone. Huge, HUGE thank you to my inlaws for being SO amazing during this time.

After a few minutes of getting cleaned up, and the nurse wheeled me in a wheelchair (despite me asking if I could walk) to the NICU to see Bailey again with my in-laws following. We all went into the NICU and FINALLY (ok, it was like 15 minutes, but if felt like eternity!) I got to see my little girl again.

To see her again was amazing... but, I can't lie and say it didn't break my heart into a gazillion pieces to see her hooked up to so many tubes. The Hubs, who had been there the whole time, had to see her get poked and prodded and get an IV line put into her little teeny hand... I honestly can't imagine having to watch that.

<This seems like a good point to pause and mention just how AMAZING the Hubs was through all of this and still is!
I think sometimes we overlook how hard things can be on the man when delivering a baby... and he was AMAZING. Through labor and through everything in the NICU and since then... AMAZING. He never let Bailey out of his sight for HOURS, talking to her and touching her little hand to make sure she knew she was loved and safe. I honestly can't imagine going through it without him. Since having Bailey and going through 10 long days in the NICU, we're bonded in a new way I never knew possible. To say he's my rock (though so cliche) would be an understatement. Words will never be able to describe how wonder he was/is and how grateful I am to have him as my husband and as Bailey's father. Girl is the luckiest child in the world to have him as her Daddy. I can't stress enough how much harder everything would have been without him there, by my side. He was amazing. He is amazing.>

Ok, back to the story...

So, when I got to the NICU, the nurses and doctor explained that Bailey's lungs weren't quite fully developed yet, as they are the last thing to develop in womb. So, she needed some extra help breathing. There are a bazillion medical terms I could try to remember to throw out to better explain things, but that's really the jist of it. The doctor assured me Bailey wasn't SICK... she just needed a little extra help, as she wasn't quite done baking just yet. Again, I'm minimizing all the details, but really-- that's the really the main idea.

I tried to breastfeed while we were still in the labor and delivery room before they took Bailey to the NICU, but she didn't take to it. Because she was had a ginormous breathing tube thing in she couldn't try again until she would be taken off that (called a CPAP), so they also had to put a feeding tube in. I was really upset at this, as I really, REALLY wanted to breast feed. Luckily, the hospital staff was AMAZING and encouraged me to start pumping from day 1, and had lactation consultants there to cheer me on and encourage me, especially as the first time I pumped I literally only had ONE DROP come out... I'm sure had they not been there to tell me that was all I was supposed to be producing that early and to keep at it I would have gotten discouraged and stopped. I can't thank the lactation consultants enough. I kept at it and Bailey was given only breast milk through the tube (in addition to some other nutrients and proteins, but never formula).

The first 2 days, while I was still in the hospital as a patient myself, were a blur of sitting by her side, pumping every 2 hours-- all day and night-- and holding her skin to skin (kangaroo-care is VERY important especially with preemies). Either the Hubs or I were with her almost every second for the first 48-hours. We were lucky in that we COULD hold her... a lot of the babies in the NICU were so sick, not even their parents could hold them. I would have lost my mind, so I am SO SO SOOO grateful we could hold Bailey all we wanted. Grandparents were allowed to hold her, as well. But, that was it. No other visitors (like my sister or the Hubs brother) were even allowed to touch her in hopes of keeping her as germ-free as possible.

Anyway, after 2 days, I was released. (Note: I'll talk more about my "recovery" in another post.) This was hands down the hardest day of my life thus far. When you're pregnant, you spend so much time thinking of the moment you leave the hospital with your little baby... and, I didn't get that. I was released and told I could go home, but that Bailey could not. It could not have been farther from what I imagined all those months I was pregnant. The Hubs and I left the hospital that evening, drove the 5-minutes it took us to get home (while I cried the whole drive), took Sadie for a 10-minute walk, and turned right back around and went back to the hospital. Those were the 20ish hardest minutes. Words can't describe how hard it was to leave without her. When I was pregnant I imagined what it would be like to walk into my house for the first time after labor, with this little, perfect baby in my arms... and, I didn't have that. There was no baby in my arms. Even though I KNEW she wouldn't be in the NICU that long and I KNEW I'd get to take her home soon... still. My heart didn't know. Or couldn't remember it in those minutes. Just thinking about it makes me cry right now.

I spent that first night I was released at home with the Hubs. I can't lie-- It was nice to sleep in my own bed and shower in my own shower. It was also so hard. I was still up every 2 hours to pump (so, to all you people who say "At least you got some extra sleep!"-- bullcrap!) and just missing her so much. At 5am the next morning, I was back at the hospital, by Bailey's side.

The NICU at the hospital we delivered at was AMAZING. I cannot say enough good things about the staff and facility. After sleeping at home the first night I was released, I decided I wanted to stay at the NICU, as it was just too hard not being with her and knowing I was right there if she needed me. Not to mention, I was still up pumping every 2 hours and I was exhausted. The Hubs didn't think me driving back and forth from the hospital at all hours wasn't safe, as I was just so tired. Luckily, the NICU had several "parent rooms" that parents with children in the NICU could stay in for free. Basically, they were hospital rooms... well, sort of. The room I stayed in had a pull out couch, TV, and bathroom with no tub or shower (there were communal showers available, but I never used them). Basically, all I needed, especially since I was really only ever in the room to sleep for the next several days. I was SO grateful to have this available to me.

In addition to the room, I was able to get a free lunch from the hospital cafeteria delivered to me in the NICU everyday I was there, since I was pumping/breastfeeding. Again, BEST HOSPITAL EVER. Not only could get a free lunch, the Hubs and I could also both utilize the Ronald McDonald Room located down the hall from the NICU for free snacks, breakfast, and a home cooked nightly dinner.

I took advantage of the parent room and meals for every day and for every meal during the entire time Bailey was in the NICU. I stayed with Bailey almost all day, every day for the remainder of her stay. I left each day 1-2 times... one to shower and see Sadie at home (poor dog was so confused!!) and one sometimes to run an errand to Target or somewhere. Turns out, when  you have a baby so early you don't have a bunch of the stuff you'll need when she gets home... for example, we had ZERO newborn size diapers and TWO newborn size outfits. Lots of Target and Babies R Us trips happened. I was never gone for more than an hour and a half, as she had her "checks" (diaper change, temperature, and feeding) every 2 hours and if I was there, I could help with most of it and I always wanted to do that.

After she was in the NICU for a few days (the exact timeline kinda eludes me... it's all a bit of a jumble), she was able to come off the oxygen, which was great. One less tube! It made it SO MUCH easier to hold her. Sadly, she had to go back on the oxygen the next day as her numbers went back down. But, they came back up the day after and she was off it for good from then on. But, as any parent with a child in the NICU learns quickly, things are often one step forward, two steps backward. Right when the oxygen stuff sorted itself out, she developed jaundice, which is very common in newborns. She had to then go under a bili light to treat it.
(Bad pic, sorry... I didn't take any pics of her under the lights, so this came from a video I took)

Sadly, during this time she needed to be under the light as much as possible to get rid of the jaundice, so we weren't able to hold her as much. That was tough, but we knew it was what was best for her.

During this time, they also had to keep pricking her foot a few times a day to test her blood sugar. I hated those times! So hard to see your child get poked so much. Even worse, she pulled her IV out and had to get a new one... they had to try 12 different places (including two ON HER HEAD!!) before they found a good vein. Now, if you've ever had blood drawn and had a nurse miss your vein you KNOW how much that hurts and sucks. Poor girl had it happen 12 times IN A ROW. Makes me cringe even now. She was such a trooper, though. Girl has some serious fight in her!

Anyway- her jaundice cleared up in a few days later. So, she was off CPAP (the breathing treatment) and off the bili light! The next hurdle to tackle was getting her to eat. As I mentioned, she was exclusively getting my breast milk through a feeding tube up to this point. Now that she didn't have as many big tubes and didn't have to be under the light, the doctor gave us the green light to try breastfeeding. I was extremely nervous, as most preemies don't take to breastfeeding well, since they didn't develop the skill right away after birth. By this point, Bailey was almost a week old and we were JUST going to try. I was preparing myself for it to not work and to have to continue to pump (which SUUUUCKS, btw. I HATE the pump!!). I was SHOCKED when Bailey immediately took to the breast. Ok, maybe not IMMEDIATELY... her first few times she only got a couple sucks in, but, again, the staff was SO encouraging and we kept at it and she had it down by a few days. I was (and still am! Spoiler alert: breastfeeding is still happening and going well!) SO happy she took to it so well.

After a day or two of b-feeding going well, Bailey started rapidly improving. The jaundice was pretty much gone, her breathing tubes out, and now the feeding tube was out and we were exclusively nursing. NO MORE CORDS!! Ok, she still had a few-- just to monitor her heart rate, but it was small and easily manageable.

Then, the hospital let the Hubs and I take Bailey "home"... well, to our temporary home of our parent room. Again-- BEST NICU EVER. We were able to take Bailey in a portable crib to our room and have her with us 24/7 for the last 3-4 days she was in the NICU, bringing her out only to be checked every few hours and if we needed to leave. It was AMAZING to have her with us as a FAMILY with no nurses around. It felt, FINALLY, like we were getting close to going HOME and really being a family.
Our parent room... look! It even had ART on the walls! Fancy!!

Having the opportunity to care for her in our room, while knowing there was a team of nurses 10 steps away was AMAZING. It felt SO GOOD to finally have her tube/cord free and to be really CARING for her on our "own", but at the same time having a security blanket right down the hall. I would NEVER wish having a baby in the NICU on anyone, but this was really nice!

Now, it wasn't 100% smooth sailing from here on... she was still dropping weight and got as low as 5 pounds, 1 ounce (down from her birth weight of 5 pounds, 10 ounces). The doctor was nervous that she wasn't getting enough milk from nursing and was close to suggesting we supplement with formula. Plus, her jaundice came back. Of course. Again, 1 step forward, 2 back. The doc wouldn't release Bailey til she started gaining and wanted to see her jaundice numbers go down too. Luckily, the day before we were going to start supplementing with formula, she start gained a smidge. Gaining weight helps the jaundice go away too, so that number went down a smidge. And, a smidge was enough! We could TAKE HER HOME!!!

After 10 days in the NICU, we took her home, after the NICU requiring us to take an infant CPR class, watch a safe-sleep and car-safety DVD, and have our car seat inspected, on November 20 at 6pm!

And, then we were HOME. Finally. Safely. And healthy. And, just like that, our journey with the NICU was over.

I've already said it a gazillion times, but let me stress one more time how AMAZING the NICU was to us. Again, I'd never wish on ANYONE to have a child in the NICU. Ever. But, OMG. The staff and facility were amazing. I couldn't have asked for any better. I never even encountered one rude person. Ever. The nurses, lactation consultants, and doctor were BEYOND helpful and amazing. I can't sing their praises enough. I would not have gotten through it without their amazing support. Seriously. Again, just thinking about how AMAZING they all were makes me tear up. I owe them each more than I'll ever be able to repay or explain. Worth every cent (and, trust me-- it was a WHOLE LOTTA cents!).

There are a million other things I could say about our experience with the NICU, but I think I've talked enough. So, I'll just leave it with this... having a child in the NICU is ridiculous and beyond words stressful, even in our situation which I think was a sorta best-NICU-case-scenario. Even KNOWING Bailey wasn't really SICK-sick and knowing that she'd come home in the not-too-distant future. However, if she had to be in the NICU, I couldn't have asked for a better experience. I thank God for the Hubs during this time, as I can't imagine being a single parent trying to go through that. I'm also grateful to have had the extra help and education (I think they should require every new parent to do the same stuff we did! I'm so glad we had to watch those videos and take the classes!!) from the staff and to have gotten the extra hands on learning experiences we did. Lastly, I'm grateful to have been able to KNOW when we did get to take her home that she was healthy.

I cannot sing the praises of this hospital and this NICU enough.

{**Note: The Hubs did go back to work the day after her birth, in hopes of saving every second of his limited PTO for when she actually was home. He changed his hours and went to work 5am-1pm from the day after we had her to the day we got to take her home. So, he worked 5am-1pm, then was back at the hospital everyday. Such a trooper and hard worker! I was (and still am!) so proud of him. He worked so hard to be in a gazillion different places all at once. Since he was working still and we had Sadie at home, we decided it'd be best for me to sleep at the hospital in the parent room and for the Hubs to go home each night to sleep there so he'd be semi-functional the next day at work and to take care of Sadie. So, he was basically working from 5am-1pm, stopped at home to let Sadie out, then at the hospital from like 2-9pm-ish everyday. Over the weekend, he stayed at the hospital (and got up every time in the middle of the night I had to get up... even if just to pump!) with me, as well. It worked really well for us. Again, thank God for the Hubs during this time. He 100% took care of Sadie and did a lot of things around the house (took the trash out, laundry, etc.). We really took the "divide and conquer" mindset and worked as a team. We also made sure we had dinner together each night, which was really important to my mental sanity and helped us stay positive and connected during this crazy, hectic, stressful time.
I also ended up "working from home" half time from a few days after delivery to when Bailey was released, again to save PTO for when she came home. It worked great... thank goodness for an iPad so I could work while holding her, pumping, sitting next to her, etc. I got to be with her and save PTO so I could still have a lot of time with her when she came home. I was also still technically teaching a college class that semester. Luckily, another instructor was able to physically lead my class and I was able to keep grading the papers, again something I could do from Bailey's bedside. I'm so grateful to my employer for letting me do that. Though, to be honest, retrospectfully, I wouldn't work, even part time and even "from home" again. It added a lot more stress to me when I was already stressed enough. **}

For the record, I delivered and Bailey stayed in the NICU at Memorial Hospital.

1 comment:

  1. Bailey is so lucky to have you AND Matt as parents!!! You guys are so super awesome - and made such a difficult situation into the best it could be! Kudos to Matt for getting up with you in the middle of the night. Aaron did that at first to support bf-ing and it was AMAZING! I would not have made it as far without his support at night. And not many guys do that - so I think we won the lotto. :)