--Preemie Check-In 5/8--

flerlgirl · May 2014

Man, we keep getting a lot of cute, tiny babies on this board! You know the drill - if any info is incorrect or you see someone missing, tag me! Otherwise prepare for the cuteness of these awesome babies. Any new milestones? Any hot nurses? Mamas, we want to hear how you are doing, too!

@hubbs173, @xnbride, @dmizak, @supgabs, @babybean82, @kittylove72, @mommyp710, @bamirg04, @stephilz987, @stephpaez, @jaybee11, @curlylocks3

dmizak · May 2014

Earlier this week (can't even remember the day) I posted how Kolt got to come off the vent and then onto a cpap. Well, that only lasted a few hours, then he had to get back on the vent. His X-ray showed cysts on his right lung that make it hard to keep his lung inflated and to fully exhale. These cysts are common in babies who have been on a high frequency ventilator for a while. They will heal, just takes time.

He also seems to be having withdrawal symptoms from tapering the morphine. I hope we can find a balance soon.

It's been a rough few days, but he is getting stronger and closer to getting off the vent everyday. He will do better the second time around.

Fortunately my husbands boss is being great about him being here with us. I would loose it if I had to be 8 hours from home here by myself. I'm so thankful for him, and so grateful to his boss.

Can't wait to see how everybody is doing! Pictures?

flerlgirl · May 2014

@dmizak - big hugs! Going back and forth between CPAP and the vent is so exhausting and frustrating. DS would go back and forth, back and forth, and it was just so hard not to have him stay in one place. But the fact that Kolt could go on the CPAP for even a few days is awesome!! He will build up more and more time on that CPAP and then move on to something even cooler. I hope little man can find some relief from the withdrawal soon.

stephpaez · May 2014

@dmizak‌ , I'm praying baby Kolt progresses to just the CPAP soon.

We had a minor setback in our discharge yesterday. The neonatologist wanted to check Lily's bilirubin levels once more before she was released. They had doubled and was put on a bili-light overnight. The hospital we are at has family rooms within the NICU where we can sleep and not have to leave since I was discharged yesterday. Her levels are dropping slowly and we are hopeful she can go home today.

flerlgirl · May 2014

@stephpaez - FX that she can go home today!! That would be so great. Let us know!

jaybee11 · May 2014

Hi all! Kate and Eva are one week old today and doing well. They've been breathing on their own since two days in. Billi lights and IVs have been gone for a couple days and I got to bring them some preemie gowns to wear--they fit much better than the hospital's clothes. They're still in their isolettes until they can maintain their temps a bit better, but they're putting weight back on after the initial loss. They alternate between bottle feedings and NG tubes; sucking on a bottle is hard work! Yesterday they were moved to the special care wing, which is for the less critical patients. We're slowly but steadily moving toward getting them home!
I've had good and bad days; it's hard feeling rather useless while the nurses have primary care of your babies. Ive been pumping as much as possible, and feeling tied to the pump is a little disheartening at times. Fortunately, DH has been a rock. I know he's going through a lot of the same emotions I am but he still manages to keep me sane and take care of housework and his actual work. His job is flexible so he's been working from home as needed; trying to save actual paternity leave for when the girls get home.
I guess that's about it for now. Will try to post some pics when I remember to transfer them from DH's phone. Thinking of all the other preemie mommies--hang in there ladies!

diagonalley · May 2014

@stephpaez‌ I know it's hard when you have certain expectations and things change. I totally cried when DS had to go back under the lights after he had been off for two days. Turns out me being O- increases his chances of higher levels. Hopefully she enjoys the rays and gets out soon

@jaybee11‌ Great news about the twins! Keep growing little girls!

@dmizak‌ I hope your little guy doesn't have to be on the vent much longer. Prayers that those cysts go away soon!

Max is set up to get discharged tomorrow morning! My husband and I are staying with him in the overnight room tonight with his home monitor. Hopefully he behaves for these last few hours! He now weighs in at 5lb 7 oz

Ahhhh I am so excited!

babybean82 · May 2014

Liam had a great week! Saturday he was taken off the ventilation and it worked great this time, he is still on a nasal cannula but being weaned down on that support as well. And today he got transferred back to our old NICU and to the same room he had before! I am so excited about that lol! It is so much more family friendly, already today DH and I both got to hold him for hours, and got to do his bath ourselves, and we get to have an input on his progress and goals again, things that weren't really allowed or encouraged where he was at to have his surgery. Also I just love our nurses I got so many hugs on our way back in, I think they are super excited to have him back too.

Here is a picture of him all cozy in his bed after hours of cuddle time.

crestedlady · May 2014

@dmizak, I hope that the cysts on Kolt's lungs heal quickly and that he is able to come off the vent permanently soon. Also hope that they are able to find a better balance as they wean him off the morphine so that he is in as little discomfort as possible.

@stephpaez, so sorry that there was a change in plans and that Lily had to go under the billirubin lights - I am hoping that her levels improved and that she was able to go home with you guys yesterday (or is able to do so soon at least).

@jaybee11, so glad that the girls are doing so well and were moved from the nursery to the special care wing. Such wonderful progress - keep it up girls!

@MommyP710, I hope that last night went great for Max and you guys and that he'll be discharged later this morning. You must be so excited to be so close to bringing him home.

@babybean82, so glad to hear that Liam is doing better and got to go back to the NICU closer to your home. It has to be so much nicer to have him there as it sounds like you are being given a lot more consideration and are able to interact with him more to boot.

Keeping each of you and your little ones in my thoughts and prayers - I hope that each of them continues to grow stronger with each passing day.

edit: spelling

flerlgirl · May 2014

@jaybee11 - awesome!!! Sounds like they are doing really well!

@mommyp710 - internet high five!!!!!!!! SO excited

@babybean82, he is a doll! And way to go with rocking that cannula! That's fabulous.

hubbs173 · May 2014

Hey everyone! Sorry I've been kinda absent this week. Glad to hear everyone's updates on their babies!!!!

Henry is doing great! He is 5 lbs 6 oz and is now allowed to eat on his own at every feed via bottle if he's showing the cues to do it, if not he still has his feeding tube in to get his food. He had a couple spells and needed a loading dose of caffeine yesterday. They had stopped his daily caffeine earlier in the week. His dr said that this last dose of caffeine should get him over this hurtle and get him into next week where he'll be a little more mature and not need the caffeine. He also got moved into an open air crib yesterday!!! It's great cuz now we can just pick him up whenever we want and hold him all the time now, which he loves!!!!

I also decided today, after much thought and consideration, to stop pumping and trying to breast feed. My supply still remained very low even after trying all the tricks and following my LC's advice. I was basically only pumping enough for 1 and 1/2 feeds. I thought breast feeding would increase it, but it didn't. I really loved the time I got to breast feed Henry and he was really good at it, so it was a really hard decision to stop. But I knew after 7 weeks I did all I could, and once I made the decision I felt much better. I am no longer frustrated about my low supply or stressing about what time it is and if I needed to pump.

My little man in his new crib!!

diagonalley · May 2014

@hubbs173‌ That is so exciting that Henry is in an open air crib! I know that was I milestone I really looked forward to because when Max was under the phototherapy lights I could only hold him to feed him. I bet you are getting lots of good snuggles in

Bummer about the caffeine, but I kept hearing that they eventually grow out of it so here's hoping he doesn't need that much longer

And as for bf, you did your best and that's all you can ask for. Overall great update

curlylocks3 · May 2014

@hubbs173‌ congrats on Henry graduating! Sorry about the caffeine but hopefully he is over the hump! In also sorry breastfeeding didn't work out but I hope you are feeling at peace with it.

flerlgirl · May 2014

@hubbs173 - open crib!!!! Awesome! Congrats

And I'm glad you made a decision about BFing that works for you. I did the same thing with DS and I'm really glad you have peace with your decision!

stephpaez · May 2014

@hubbs173 How exciting!! What a progress for Henry

praying he continues to make gigantic milestones of improvement and gets to go home sooner than later!

vv826 · May 2014

Praying for you ladies and your little ones! May God keep blessing you with peace and patience and your little ones with health!

flerlgirl · May 2014

buuuuuump

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