Weight-wise, there weren't many changes. Addison only gained 4 grams and Riley lost a few grams. They both had their feedings increased. Addison now gets 32cc and Riley gets 27.
Addison's high flow was turned down to 2 litres from 2.5 and so far, so good. They've both been consistently in 21-22% oxygen and not having more than 1-2 episodes.
Nursing didn't go as well as yesterday. Addison spent most of the time wiggling around and he tired himself out.
Riley tried with all of his might and he was able to latch on but not able to stay latched. We kept trying but after about 20 minutes, we decided to take advantage of him being wide awake and we gave him a bottle. He took half and then fell asleep.
The boys both started physical therapy a few days ago. June comes in and works with them by moving their legs, arms, and making sure their bodies stay properly aligned. She was very impressed with their hips and shoulders. Preemies commonly have alignment issues due to lying down all of the time but the nurses have been positioning them well and thus far, no problems.
2 comments:
You and the babies are doing so incredibly well! Thank you for continuing to keep us all in the loop. "Just another day" indeed! Every day is a miracle confirmed.
God bless you all!
Hi Lindsey, I've been wanting to share my story with you, but it's always hard to find the time... you know how that goes! :) If you want to send me your e-mail address (to kt.phillips@comcast.net), I'd love to write more, but for here I'll try to keep it brief...
I can SO relate to where you're at, except our early arrival was just 1 baby, and it was our 1st, so we didn't have to take care of other kids, too. Our miracle baby was born at 24 5/7 wks, weighing 1 lb. 1.5 oz., and was 11 inches long. She was intubated for about 9 days, then CPAP. At about 3 wks., they felt her heart murmer wasn't going to correct itself, so they did the PDA Ligation (heart surgery), and she had to be intubated again for another week or so. At one point, she developed an infection and they had to do a spinal tap and put her on antibiotics. Her ROP was bad enough that she had to do the laser surgery. There were many ups & downs, like you're experiencing. She was in the NICU for almost 4 mos, and came home a week after her due date. She came home on oxygen (until about 10 mos. old), an apnea monitor, and her feeding tube... so we had tubes all over the place, and her equipment took up a lot of space!
In all this time, feeding has been the main struggle!! Has anyone talked to you about Oral Aversion? We were told it's VERY common with these preemies who've had tubes and stuff shoved down their throats; they just don't want ANYTHING in their mouths, and it can be difficult to introduce new things. I pumped, like you, and I think I put her to breast around 5-6 wks. She was so tiny, she couldn't really latch on effectively, but her sats were always great when we put her on. And the nurses said it was also a good bonding time, and she'd get the taste/smell/etc. I realize now, after having my 2nd baby and have experience with 'normal' nursing, that my 1st never had the greatest latch or an effective suck. A term we heard a lot was 'Failure to Thrive...' she never ate enough on her own to gain the weight she needed to. While we were still in the hospital, we'd weigh her before and after nursing, and sometimes she'd only get 2-5 cc's, and sometimes 10-15. We had to keep adding more in her tube. She only took a couple bottles that whole time; once she started being put to breast more, she'd refuse the bottle or pacifier, or anything that felt different than Mama. I didn't mind so much, because I wanted her to nurse so bad, and I never wanted to use those, anyway. I'd also heard stories that once the babies get home, they can start to nurse more effectively because they're out of the stressful NICU, in their home, in a more peaceful environment, where Mama's more relaxed... so I was very hopeful it would improve more after she was released, that she'd take off and nurse so well, and we wouldn't need the feeding tube. She DID do better, but it still wasn't enough; we dealt with the NG Tube for almost 4 mos... learning how to place it in far enough but not too far, switching sides at least weekly (if she pulled it out, it was more frequently), dealing with reflux... we've seen a LOT of spit up!! When she was 8 mos., she spit up so bad, she spit up the tube, so it was going in her nose and out her mouth, and she was choking and gagging on it... and I finally knew at that point we couldn't keep torturing her with the tube going in and out all the time. They had already been talking to us for a few months about placing a permanent G-Tube in her tummy, but we fought it, because we thought she'd improve and nurse better once we got home... but she just never took as much as she needed to gain weight. So, it was heartbreaking, but we put her through another surgery. Feedings still SLOWLY improved, but it was nice to have one less tube on her face, and nicer for her not to have it going in and out all the time.
So, then there was the whole oral aversion thing; it took a LONG time to introduce new textures/foods, because as soon as she felt/smelled something different, she'd start gagging or refusing, or spitting up. I was just looking back at my journal, and it was probably around 18 mos or so, she was just barely TASTING things (the smoothest baby foods), but not until around 2 yrs old until she actually started eating a couple tablespoons at a time. She nursed until she was about 19 mos., and I tried to keep her going, but she started refusing. I kept pumping until she was 2 1/2 yrs, because we felt breastmilk was the best thing for her, and she had remained so healthy most of that time... so I know ALL about pumping! :)
Anyway, very long story as short as possible, it's taken a VERY long time, but she eventually started eating more baby foods, smooth purees, and is slowly progressing to other textures. Her main issue now is chewing; because she didn't learn it at that early age, we're having to teach her how, but she doesn't want to. She's working on 'meltables' (things that melt in your mouth like Cheetos, graham crackers, some other crackers, etc.), and she'll sample tiny bites of different things we eat, but a lot of the time spits them back out. We go almost weekly to see a feeding therapist, and occassionally see the whole feeding team (dr., dietician, OT, speech therapist), and they help with different things. Over the past 2 yrs., she was stuck around 31 lbs for about 18 mos. (but kept growing taller and got very skinny), but the past few months has finally started gaining more and just this week got over 33 lbs! She still has her G-Tube, but we're down to about 2 boluses per day. She also drinks more of her special formula now (mixed with chocolate), and the more she takes orally, the less we'll have to use the tube.
Our sweetie is now 5 1/2 yrs old, and will be starting kindergarden; I can hardly believe it!!! It's been an incredible journey; early on, it was such a struggle to make it through one day, and yet looking back, we wonder where the time has gone! Her laser surgery was successful, though she is slightly near-sighted, and has been wearing glasses for the past year or so, but even if she's not wearing them, it seems like she can see fine. Her heart has been fine. Once she came off the oxygen, she was also fine, except a couple winters she developed pneumonia after being around other kids who were sick (the first couple years, we were pretty much house-bound to protect her fragile lungs/health, but the winters she got sick were age 3 & 4). One other thing she's had to deal with is vocal chord paralysis; I think the 2nd time they intubated her, they damaged one of her vocal chords, and it's been paralized ever since. She can talk fine, but sometimes is quiet or breathy... but we know she CAN get loud, because sometimes she runs around screaming with her sister! :) She was also on meds (Prilosec & Reglan) for a long time for the reflux, but has been off one of them for about 2 yrs now, and the other one for about 1 yr. She still has to take a gentle laxitive every couple days because of all the formula, yogurt, pudding, cheese, etc. that she gets... it's the main part of her diet.
A note about Reflux: you might want to talk to more people about it... I wish I had, cuz I might've done things differently. With us, the drs/nurses talked about reflux so much, any time she spit up, and that we needed the meds to help with it... which she still spit up so much (for several years), that I'm not sure how much they helped. Then, a lactation friend told me one time that it's not really 'reflux,' but that they're just getting stuffed too much. Whether it's a tiny baby or an adult, our stomachs are about the size of our fist, so if we're putting more than that much into them, it's just going to come back out... which makes sense. But I wasn't told that until mine was a year or 2. If we had it to do over again, I would've asked about doing smaller, more frequent feedings. I'm sure nurses probably don't want to do that, because they have other little ones they're dealing with, and they have their routines of everything they're doing every 3 hrs, and they probably think a baby should be on a 'normal' feeding schedule... but it's something to think about. Or, once you get them home, it might be something to try if you're dealing with a lot of spit-up... if time allows, or if you have help. It's tricky with the tiny ones, cuz we're so concerned about gaining every single oz possible, and the drs/nurses/experts have it all calculated for how many calories they're supposed to get to grow, and we have to trust that they're the experts... it's hard to know what the best thing is sometimes! I just want things to be better for you than they were for us, and I wish I had known more back than, and asked more questions, and tried different things.
YOU'RE DOING AN AMAZING JOB!!! I also think it's awesome how you've been doing this blog and recording everything in such detail! It'll be great for you to look back on in years to come. I wish I had been more detailed in my journal with my wee one. I've learned a lot from you; you're great with explaining what different things mean, or what things are used for, etc., and some of it, I guess I didn't ask as many questions when we were going through it, so you've helped me understand more. You've also brought back a lot of memories.
If you want to write to me, I'll also send you a couple pics of our precious miracle. If you don't have time, or just don't want that extra contact, I understand, and I won't bug you about it any more. :) I can just try to respond to your blogs whenever I'm able. I check your blog daily, and keep your family it my prayers!!
BLESSINGS!!!
Katie
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