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Feeling Frustrated and looking for positive experiences

welchm1welchm1 member
in Preemies

Hi Ya'll

We are on week 7 in the NICU with our son Wyatt.  His brother has been home for 4 weeks now and the stress of not having them together is taking its toll. We are desperate for him to come home.

All in all, Wyatt is doing great (both boys have had a remarkably uneventful time in the NICU)  accept his feeding/growing.  He is 4lb 8 oz (2lb birth weight) but has started to slow down with growth.  He is recieving OT services to help with his feeding.  Wyatt is a bit messy and needs his cheeks to be stretched out before feeding.  He also still sleeps through a feed every few days so, even though he has ripped it out 3 times so far,  they keep reinserting his feeding tube.

I know that the NICU docs know what is best for him and I want him to come home strong and healthy, but I keep feeling that if I could be there all the time I could help him come home sooner.  It's just impossible with a newborn at home for me to be at the NICU as much as I would like.   We joke that Zeke (his twin) has logged more car time before his due date than most full term babies do in their first 6 months.

Anyone have any similar stories with positive endings?  Anyone else have little ones that hovered in the NICU for longer than they wanted? Or who all of a sudden mastered feedings and got to come home?

Sometimes we feel that we will have his first birthday party on the 3rd floor of the hospital in POD 8. =(

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Re: Feeling Frustrated and looking for positive experiences

  • schenkertobeschenkertobe

    Congrats on your LOs!! All I can say is that I am in the same position as you. I had a major meltdown last night because it is just taking so long for my son to learn how to eat. He pulls out his NG tube all the time and gags on it daily. I just want him home!!!

    Hang in there momma. Everyone has told me, one day they just get it and they take off from there. Just try to be patient, your LO is in a safe place right now and needs to be in the NICU. But I know, it is easier said than done.

    Lilypie Angel and Memorial tickers Lilypie Premature Baby tickers
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  • kar5162kar5162 member

    You said slept through a feeding, is he still on a schedule or feeding on demand yet?  If he's still scheduled, I'd talk to the doctor's about feeding him on demand and see if that helps his eating.  Have the doctor's told you what the criteria is for coming home?  For us, it was maintain temp, no bradys/apnea (DS's main problem) and take full feeds and gain weight over 24 hours.  If he's super close and you only need to prove it for a short time, you might want to see if you can get extra help with Zeke for a few days so you can spend all of your time at the NICU for a day or two and try to get him home.  I was there practically around the clock the last few days since the nurses would often try to feed DS too fast and he'd event.  DH and I both knew the signs that he was having trouble and were able to take the bottle away before he desatted.  That said, I only had one and I know it's much more challenging with two.

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  • witt0198witt0198

    Just wanted to say I remember having all those same feelings, but in hind sight I wish I could have told myself to be more patient (Evan had been there for 13weeks and I really really wanted to be done). I think all the pushing we did to my son to eat, didn't help the negative feelings he eventually developed towards eating. He had really bad reflux and vomiting, so I'm not saying it was the only factor, but if there's one thing I learned with my Evan, it's that he can not be pushed, and when he is, he eats worse. Eating is a tricky thing and really hard work. He's such a little tyke right now, just over 4lbs. I know with Evan, his stamina went way up just after he hit his term date. Some other things that helped were, feeding him with him laying on his side, and with his body at an incline. Feeding him while he was laying on his side looking at us gave him more control over the flow of milk. We also tried to keep the stimulation level as low as possible. To much stimulation (meaning, the chair rocking, us talking, noise in the room, spinning the bottle in his mouth et), and he'd shut down and eat worse.

    Hugs, and I hope your family is together soon!

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