My mom has been tremendously helpful with meals and with bottle preparation and clean-up. She's also taken over some of the transitional shift times like early in the morning, when Meg needs to catch-up on the sleep she missed at night and when I need to get ready for work. She's also staying up a little later to give Meg a few hours to sleep on the front-end of the night shift.
My mom with Sophia
Eventually, we're going to get our girl to sleep at night and be awake during the day, but the NICU is kind of like a casino--there's constant stimulation and you have no sense of day and night--so, she's mistakenly got them turned upside down and doesn't yet understand that babies (parents) need to sleep between 11:00pm and 5:00am. She'll get there though.
Over the last couple of months, the NICU has been giving the girls a bath on Saturdays and Tuesdays. We took advantage of the coaching and started doing it ourselves a while back. It was our turn to try it at home. Wow, did we fail miserably! Our biggest lessons learned were:
- Leaning over the normal bathtub to reach in to the baby bathtub and give a bath, kills your knees, even with a towel.
- There's not enough room for two people to kneel next to the bathtub in the girls' bathroom without straddling the toilet from the ground with your legs (not cool when it's you that's doing the straddling).
- Giving her a bath in the NICU was much easier than doing it at home.
- Babies will not hesitate to poop in the water (I mistakenly thought they just peed in the water).
- We need to try harder and be more prepared.
- Babies will not hesitate to poop in the drying towel.
- Babies will not hesitate to poop in the SECOND drying towel.
- They look adorable when they're super clean.
- You can give a 37-weeker a mini-mohawk when her hair is still wet.
Sophia, with a " Who, me?" look on her face after dirtying up the tub and two towels
One of the issues we're struggling with is how much tummy time we give her. She definitely seems to be struggling with gas/poop and is much more irritated when we have her flat on her back or slightly inclined in the bouncy chair. Our pediatrician told us it has to do with preemies at this age not being able to release their butt cheeks when they're trying to pass gas. Apparently, they don't know that you need to let the cheeks go to let if flow. She gets super tense and actually holds everything inside. She'll learn.
We noticed when giving her some tummy time, that she seems way more comfortable. Maybe it's because her butt is up in the air and the gas is rising to the highest point to get out. Whatever the reason, she loves it. The dilemma we have now is that the NICU told us that they're too old to sleep on their stomach. When they were younger, ~32-35 weeks, the nurses put them on their stomach to help with the reflux that both Maddy and Sophie were having. There's a big campaign led by the NICHD called "Back to Sleep," which is meant to remind parents that you can reduce the risk of SIDS by placing healthy babies on their backs to sleep, not on their stomachs. It's just our luck that our babies stay up all of the time when they're on their backs and really only seem to get restful sleep when they're on their stomachs.
So, Meg and I are going back and forth, weighing the risk of letting them sleep on their stomachs with the risk of them not growing because their not getting any real rest. For the last day and a half, we've been putting Sophia on her stomach when we're awake and someone is watching her. At night, she stays on her back and no one gets any sleep. Meg took Sophia to her first visit with our new pediatrician yesterday and both the nurse and our doctor said that it was all right to use a movement monitor called Angelcare to safely allow her to sleep on her stomach and give us peace of mind. I'm going to do a little more research before I feel comfortable enough to actually try it, but if it really does work, I may get my wife back!
Meg, "watching" Sophia in the morning. The best moms can see with their eyes closed :)
The nurses decided to try and ween Maddy off of her last little bit of oxygen yesterday. When we called in to the NICU later in the evening, she was still handling it just fine. Meg is going to visit with Izzy and Maddy a little later this afternoon and, if Maddy is still off of the oxygen, they'll probably start talking about a plan to bring her home within a few days. She's been episode free for quite some time, so there's nothing else stopping her at this point. Then we'll have TWO babies at home, possibly by Friday!
Dr. Liu called us yesterday to talk about next steps with Izzy. Right now, she weighs 3 lbs 8 oz. Ideally, he'd like her to be around five pounds before re-connecting her intestines, but if she a) starts dumping again or b) starts having trouble with her liver, he'll do the surgery sooner, but really wants her, at the bare minimum, to be at least two kilos or ~4 lbs 6 oz. Also, the surgeon and our NICU docs really want to ween her off of her oxygen a little more before performing the surgery. Lastly, they still need to do a one-day analysis on the bottom section of intestine, between the mucus fistula and the rectum, to make sure that the three perforations that were allowed to heal have all done so.
I can't help but look at these girls everyday and think about how close we came to losing them and where we would or wouldn't be right now if we had listened to the doctor at CHOP who told us our girls were too sick to save. Honestly, it infuriates me, so I try not to think about it too often. I just hope that other families don't lose their babies because they're not confident enough to go with their gut and get a second opinion. I'll get off of my soapbox now, it just amazes me every time I look at them and reflect on how far we've come. We are truly blessed.
I've been following your blog for a while now, and not sure if I've ever commented, but I wanted to let you know how happy I am for your family. :)
ReplyDeleteI also wanted to talk about SIDS. It is such a controversial issue right now. My local paper (The Minneapolis Tribune) www.startribune.com just published an article today about it, and their findings were that the majority of SIDS cases were because the babies weren't sleeping in a crib or bassinett or had too many suffocating objects in their cribs with them. SIDS was not happening from babies sleeping on their tummies. I found that interesting, and I like the approach you guys are taking. Hey, you all need sleep, and sleeping on the back isn't comfortable for all.
Thinking of you guys.
My healthy, lovely girls are 15 1/2, and I still despise the doctors and nurses that told me to terminate my pregnancy because my girls had "no chance" at a normal life, if any life at all. With every milestone, I have the intense urge to drive to their offices and gloat. Possibly this is a character flaw, but the feeling has only gotten stronger.
ReplyDeleteWhen I was a baby, my mom was told to only put me on my tummy to sleep, and OF COURSE I am a back sleeper. Feeling a little sorry for her after reading your blog. :)
Laurie (TTTS Mom in OH)
Your girls are amazing, and those doctors were completely wrong. They are very lucky to have you two as parents.
ReplyDeleteAs far as the gas -- have you tried mylicon (or the much more affordable generic version)? It makes the little gas bubbles smaller and easier to escape. We gave our kids mylicon before every bottle for MONTHS. It also helps with reflux because you don't have all those gas bubbles pushing things up. We considered it a miracle drug.
I just love your bath story. You're doing a great job!
My little girl was a belly sleeper and very collicy . She. Seemed to prefer tummy sleeping also. I would let her sleep on my chest as I am a light sleeper and was also very scared of SIDS . It worked well for us, we both slept well. In the day I would use the kangaroo pack and let her sleep on me while I could be up doing things. She outgrew it at about 46 wks gestation. CongrAtulaions!!!
ReplyDeleteI recently found your blog and I love it! I also have triplet girls, 2 ID and 1 fraternal. I also delivered at 30 weeks due to absent diastolic bloodflow. I wanted to tell you that we used the angelcare monitors on all 3 of our girls for over a year. I'm not going to go into all of the details, but they are VERY reliable! I think every baby should have one on their crib. They are about $100 for something that will immediately notify you if your baby stops breathing. How is that not worth it?? Definitely buy them!
ReplyDeleteBelinda
@Belinda - How old are your girls now?
ReplyDeleteThanks Shawnee
@Heather - We're using the generic form of Mylicon. We haven't been giving it to her as much lately because she finally seems to have things moving in the right direction, literally.
@Laurie - It's no character flaw on your part. To me, it's really on those particular docs who think that they know everything and that no one else could possibly help.
@Leah - Thanks for the heads-up on the article about SIDS. Interesting read.
I think I commented once at the beginning of your blog(I'm a friend of the Springfield's from FL), but felt a strong urge to comment on this post. I strongly agree with the others who have said that the SIDS issue is probably not as big of an issue as it is made out to be. My daughter 4.5 now, would also ONLY sleep on her tummy. We were very lucky to have an "experienced" {read very old} pediatrician. He had to have been at least 75...he informed us that he'd lost count of how many times during his medical career, the "correct" position had changed from back to tummy. I strongly agree with the person who said that SIDS much more likely relates to objects in the sleeping area (or other issues). I had never heard of angelcare, but what a huge blessing for parents! Mom and Dad NEED sleep too!
ReplyDeleteAs for the angry feelings toward the docs, I TOTALLY get it. At 34 wks w/my twins, I went to my doc because I was having serious contractions (way stronger than any I'd had w/my daughter), and she told me that I was in labor but not "full-fledged" labor...whatever the heck that means at 34 wks with twins! She pretty much brushed me off and said to go home and lay down. I walked out in tears and from the parking lot, called the doc 45 min away who had delivered our daughter and ME! He told me to get to his hospital. When I arrived, the nurses were in shock, that I had been given the option of going home. They gave me all the "stop labor" meds, as I was at 2 cm and contracting. I ended up laying there for 3 wks, my cervix going back to 0, and delivering our boys at 37.5 wks. They were healthy, and didn't spend a minute in the NICU. My doc informed me that had I not gotten there when I did, the boys would've come and definitely spent time in the NICU, as they were just barely "fine" at 37.5 wks. 2.5 yrs later, I would still punch the doc who said I should just go home! And mine wasn't even a life or death situation. Doctors are only human, so many of them have serious pride/ego problems. But for every one of those, there are 10 awesome ones:)
SO happy for you guys, and your precious munchkins!
Just wanted to share my experience with the Angelcare monitor. We have one for our daughter, who is now 10.5 months, and for the most part, I've liked it. It gives me peace of mind. BUT. We started her in the crib around a month and a half, 8 lbs or so (and it can only be used in a crib since it has to be placed on top of something hard like plywood under a mattress, so no bassinets or pack n plays). At that weight, it would go off ALL THE TIME. Not because she wasn't breathing. I could be in there, see her breathing, and it would go off. It was all false alarms, even with the sensitivity turned all the way up. Which got nerve wracking and somewhat annoying. Once she got to about 12.5 pounds or so, the false alarms rate finally started to go down and now it rarely goes off - only when she wedges herself into the corner of the crib, where I guess the sensor doesn't quite reach. Though, in that case, it's not so bad since she's probably more comfortable after I relocate her anyway.
ReplyDeleteSo yeah. I'll still use it again for the next kiddo (despite my hubby probably not wanting to) simply because I'd rather go in there and find out it's just yet another false alarm than miss a real problem, but I thought I'd just share with you my frustration with it. Maybe the more expensive model works better? Or, I have a friend who had twins who used something that actually clipped onto their clothing or their diapers or something that sounds much more accurate for babies of all sizes. I want to say it was the Snuza, but I'm not sure.