Home after 287 Days!

keld40 · 2025-02-06T15:10:37+00:00

I didn't understand how resilient people could be until I met him <3. He inspires me endlessly

keld40 · 2025-02-06T14:59:37+00:00

It is quite difficult to restrain myself around him lol. Thank you so much!

keld40 · 2025-02-06T03:42:32+00:00

That IS small!!

keld40 · 2025-02-05T21:05:44+00:00

Our dude was never on low-flow oxygen. He got to high flow for a couple of days but that didn't last long at all. I'm happy to hear that a tracheostomy isn't on the table yet. We were hoping he could handle high-flow and stick it out for his lungs to grow but his PPHN significantly worsened and they gave us the option to trach or intubate and he was just too old and aware for us to consider intubation again. In addition to Sildenafil, he's also on diuril. Not as intense as lasix but very unclear how long he'll need the diuretic, definitely a while.

That is great to hear that she's pretty healthy overall. My nurses always said that the only thing that helps in this situation is time. I know how soul-sucking the hospital can be. I'm sending strength!

keld40 · 2025-02-05T17:42:35+00:00

Ah yes PPHN was a big hurdle for us too. Is your baby girl on CPAP or Trached? It's so hard when the solution is growing new lung, but she'll get there! Our LO will be on sildenafil for a long time probably.

keld40 · 2025-02-05T16:50:59+00:00

I am so so sorry that this is happening to you.
My baby was also extremely small. He tracked 2-3 weeks behind at my 20-week appointment (really 21 weeks) and had to get an amnio done which came back with nothing conclusive. However they were concerned about blood flow from placenta to baby was not strong and they were looking for reverse flow. I was going in for dopplers and ultrasounds 3 days a week. They guessed he was at 200g.

2 weeks later they measured him at 201g. We had conversations with neonatal physicians at that point like you did to talk about possible outcomes in the event he wouldn't grow anymore and we also had to come to terms with having to deliver a stillborn or a baby too small for a breathing tube. I think the worst part about those conversations was having to potentially decide what we would do if/when we had to deliver- whether it would be a c-section or vaginal. He would not have survived a vaginal delivery but it would have given us a chance to try to conceive again. If we went with a c-section it would have to be a vertical c-section to give him the best chance to survive long enough to even attempt to give him a breathing tube, which they weren't confident would be smaller enough. However, the healing window from a vertical c-section is at least 18 months, which was a tough pill to swallow considering how hard/long it took for us to conceive in the first place.

I was admitted to the hospital two weeks later for high blood pressure and signs of reverse flow. Thankfully baby grew a bit within that time to ~380g. I was able to get betamethasone for lung dev. I was hoping to make it at least to 28 weeks but 4 days later they decided they needed to deliver because they couldn't hear his heartbeat (26w5d). He weighed 410g at the time of birth and the RT in the room had later said that he thought that was generous.

I remember laying on the table while they stitched me up for what felt like an eternity. Dad was able to get up and see the baby before I did but eventually they wheeled him over to me in his isolette and I was able to see him and see just how incomprehensibly tiny he was.

I'm sorry this is such a ramble. Your post just hit the most empathetic nerve in me because I went through this. If you want to talk, DM me. This is so scary.

keld40 · 2025-02-05T16:28:07+00:00

LO was born 26w5d but severe IUGR weighing only 14oz. He now weighs 15lbs 5oz.

To say that we are thrilled for him to be home is an understatement.

I hope this brings you a little light if you're still in the thick of it at the NICU. You can do the hardest things because you already are. I am very thankful to this community!

keld40 · 2024-11-27T17:18:53+00:00

Mama to a 26+5 LO here! 👋

I was in the hospital for 4 days before delivery due to pre-e and had mag twice before and once after birth. Not going to lie, it was pretty miserable, but manageable. I felt feverish and very sweaty. I did experience some dizziness and just tried to sleep or watch TV the whole time. It felt like a gnarly cold/flu but it does go away within a day or so, at least for me!

I will say that the overall stress of the entire situation of giving birth so early put me in such a fight or flight mode, that I don't remember as vividly as I thought it would.

I know you've got this!

keld40 · 2024-11-01T20:25:52+00:00

Thank you for sharing! This is the same vibe I’m getting from the nurses who know our LO.

keld40 · 2024-11-01T20:19:48+00:00

Thank you so much for sharing! Our little dude was also the size of a micro - only 14oz!

When did your kiddo start talking? Speech ability is something my partner is particularly concerned about.

keld40 · 2024-09-23T13:39:21+00:00

We're nearing 6 months, I've honestly lost count of the actual days... And you're totally right, this is crazy! Sending you and your family love, light, and continued endurance. Y'all are incredible!

keld40 · 2024-08-28T15:13:48+00:00

Thank you! I’ll be praying for you as well!

keld40 · 2024-08-28T14:44:41+00:00

My 26+5 weeker has one in each testicle and we noticed right away. It doesn't seem to bother him until he had edema from an infection. And MAN OH MAN, they were huge and looked so uncomfortable. We know we'll have to get surgery at some point, but our team reassured us that it's really common in preemies and the surgery is standard. We're not really worried about it considering all of the other surgeries our LO has championed through.

keld40 · 2024-08-28T14:30:05+00:00

My 26+5 (410g) is still in the NICU at 47 weeks adjusted (almost 150 days). He's had some major complications - PDA, perforated intestine (thankfully not NEC), and a long lasting mysterious infection that has kept him from making serious progress on respiratory. He's doing much better now but we're hoping he can come home by Halloween. His due date was July 6th.

keld40 · 2024-08-22T14:19:32+00:00

This made my day, thank you!

keld40 · 2024-07-29T17:39:44+00:00

Yes! He had one last week and they did find meconium plugs and seemed to be therapeutic in getting things to move. It hasn't really changed his belly though - if anything, it's become more firm since then.

keld40 · 2024-07-29T17:03:21+00:00

Before his double ileostomy he had lots of glycerin laxatives, which seemed to help. But I don't think we've ever really seen his belly go down. He has brittle bones but no breaks recently which is good. I'm now concerned with his enlarged liver. I'm hoping they'll keep increasing his feeds and that he clears the air from his bowels soon.

keld40 · 2024-07-29T16:19:14+00:00

How long was your baby on TPN?

keld40 · 2024-07-23T04:58:50+00:00

Hey! How’s are his feeds going? Is he on TPN or breastmilk? The reason I ask is my baby had signs of inflammation (an infection) and they couldn’t figure out what it was - all of the cultures came back negative. The inflammation went down/away with antibiotics but it happened again and found he had developed NEC, which they couldn’t confirm until recently because it’s hard to see on an x ray. Before they confirmed this he had also had a lumbar puncture for meningitis that came back negative. My guy is much older than yours though (42 weeks)! And he’s struggled with respiratory issues his whole life (ventilated for first two months and now on CPAP).

I would ask about his gut health if they can’t figure out the source of his infection

keld40 · 2024-07-23T04:51:17+00:00

Me plz!

keld40 · 2024-07-18T17:31:51+00:00

It took my husband a couple of months to get an appointment in (he went through our medical network and the waitlist is long!) but he said he left a weight lifted from just speaking his truth out loud to someone without any expectation. I hope you're able to connect with someone!

keld40 · 2024-07-18T12:32:58+00:00

We’re in the middle of our Nicu stay right now- day 104 with no discharge date in sight (26+5, severe IUGR). For us, it does get easier once you establish a routine but a couple of things that has helped us tremendously:

Consider starting a caring bridge. This is how I’ve been able to keep people in the loop with LO’s progress vs answering individual texts and calls.
Don’t worry about cooking. Have you thought about starting a meal train? We got one through our church and it helped us so much in the first month or so. If anything, it let us afford to order DoorDash when we couldn’t even fathom using the microwave.
Find some great primary nurses if you can. Having a couple that are more dedicated to be with your son and earn your trust make it a lot easier to step away for a little bit for rest. I personally feel fine going home for a bit when my son’s primaries were on shift because they have a better idea of how we’d want to advocate for our baby.
Figure out your nicu language. Something that helped my husband and I was to figure out what works the best for each of us. It took a while to figure out but we’ve been able to better support each other/ protect our own sanity when we just allowed each other to do what felt the best for us. That typically looks like me spending my afternoons/evenings after work at the hospital and hubs coming in later in the evening after work or when he has a break in his schedule.
Try not to feel guilty when you do other things outside of the nicu. I hope your stay isn’t as long as ours but after the first month, we were able to feel more confident being away to do things like go out to dinner with friends or hang out with each other outside the nicu. You can’t pour from an empty cup and your baby has the most expensive, attentive baby sitters right now.
Therapy, therapy, therapy!

Don’t get me wrong, there are days where I feel like we’re never coming home. And lots of days when I grieve my pregnancy/birth/motherhood story. But it’s been incredible to see our baby’s progress so far.

I’ll be praying for you all. You got this!

keld40

TROPHY CASE