Having a really bad day

[MadelinesMama]

My DS, Finley, was born at 27w5d on Oct 17th.  He was doing amazingly well for the first week and a half.  Now things seems to be sliding backwards.  He was completely off of oxygen and now he's on cpap.  Yesterday he got his first blood transfusion.  This morning I got a call that they are stopping his feedings because they suspect he has NEC.  I'm just a complete mess.  I feel like I failed him somehow.  I know there was nothing more I could have done, but it's so hard watching him go through this.  I'm so worried that the outcome is not going to be good.  This is so damn hard.

[TCMoulton]

While I am not a preemie mom I did have a NICU baby for a brief time and a friend of my sister had her baby this past summer at just 25 weeks. I can tell you that everything you mentioned in your post are things that she also struggled with during her son's stay and as of just a few weeks ago he is home and thriving! If you would like I would gladly PM you her blog address if you think it would be comforting or helpful to read the words of a mom who had he same experience as you.
Hopefully things start looking much brighter for you and your sweet baby very soon!

[MadelinesMama]

Thank you.  I would really appreciate the blog address.

[MadelinesMama]

NICU called this morning and said Finley's breathing got much worse over night.  They intubated him this morning.

[Bokonon]

Hoping this is just a temporary blip and he is healthy, big and strong in no time.  Please keep us posted.  You are on my mind.

[hildare]

  thinking of you and your family right now. 

[justKate]

Oh mama, I'm sorry to hear he's having a rough time.  And I hope you're being gentle on yourself--there's nothing that you did and you did not fail him.  I know nothing makes the hurt stop but you really are strong, and this will be in the past really soon.

My DD was the same, although she was full term.  Her first week in the NICU went well; after that they wanted her to eat more, so they were tube feeding, then suspected NEC.... NEC is terrifying, because it really is dangerous, and that's why they want to rule it out.  It is so hard to see your little one being kept NPO for something he may or may not have.  Have they done a barium study, that sort of thing? 

Two things I can suggest on the NEC--

--ask if they can give your LO a nutritional IV supplement.  No need for him to just be hungry.  Although they may be doing that anyway since he was a preemie.

--if he's being formula fed, ask if they can change is formula.  DD was on the "regular" nicu formula, then they changed her to the "rice added" version to help her keep food down.  Then we had the suspected NEC scare--basically, I think the heavier formula was too hard for her to digest and backed her up.

As for intubating him--yeah it sucks.  But it is better for him to be intubated than for his alarms to be going off all night, the nurses to be bagging him...at least this way you KNOW he's getting his oxygen. Sometimes it really is one step forward and two steps back, but it won't always be.

Keep us posted on how you both are doing.

[Adaline'sMama]

Im sorry you are still there. Hopefully this is just a little backslide and things will move forward from here. I've been thinking of you. I hope things have gotten better.

[HappyHappyMommy]

Thinking of you and sending

[MadelinesMama]

Thank you all for the support.  He was taken off the vent on Friday and put on high flow nasal cannula. Yesterday morning I called to check in and he had been put on CPAP.  When I got to the hospital about 45 mins later he was being intubated again.  They did start him back on small feedings which he seemed to be tolerating, except his last feeding he had all 5ml they gave him still undigested when they checked at his next feeding.  So they re-fed it to him and we are waiting to see if he digests it this time.  It's so scary not knowing what's going to happen from day to day. 

[justKate]

It sounds like they're willing to try, at least.  It is super hard, but it sounds like you've got a good team.  He is still so tiny, but it is so hard to be patient.  Keep your head up and take care of yourself, and keep us posted on how he's doing.

[BCmamaof6]

((hugs mama))

My little guy was a 32 weeker. 3lb 14oz (dropped to 3lb 7oz) Spent a month in the NICU.

I know it's very frustrating to watch things take a step backwards. My little guy had been getting better & better & then one morning I went in there & they wouldn't let me near him. He had started having MAJOR apnea & bradycardia spells. From there it went downhill for a bit before it started getting better. But then finally it turned & he started to get better. Although when it was bad I remember feeling absolutely helpless.

It will get better. Just believe in your little guy's ability to be strong! Try to take care of yourself too! I know that's hard. ;)

~*Healthy healing vibes*~

[Adaline'sMama]

Madeline'sMama,
Are you guys home yet? Update?

[MadelinesMama]

Today was a good day.  On Tuesday they decided to start steroids to help get him off the vent.  Today our favorite nurse had Finley an was able to wean his oxygen down from 50% to 36%.  The rate on his vent was turned down from 26 to 14.  The best part of all is that I got to hold him for the first time in 2 weeks.  His O2 sats were lovely the whole time we were there.  He's getting a transfusion tonight and they are talking about possibly removing the vent tomorrow or the next day.  Today marks 1 month since his birth.  It's still hard, but I'm incredibly thankful for days like today.  We still have about 2 more months until he will be ready to come home probably.

[justKate]

That's awesome mama, there are lots of good days to come, I promise. Its amazing how much a "good" nurse can mean to the little one's progress.  I hope things move more quickly than you expect.  Keep us posted and feel free to vent if you need to.  It is so hard. 

[MadelinesMama]

The good nurses make an incredible difference. 

I got a phone call this morning that they extubated Fin at 1 am and put him on high flow nasal cannula.  I was told he was breathing kind of hard, but was doing well with it.  I can't wait to get up there and see him in a few hours!  I'm hoping they will let me hold him again, but probably not.  I'm crossing my fingers.

[softlysinging]

just dropping in from your DDC to say i have been thinking about you and Finley ((hugs))

[MadelinesMama]

Originally Posted by softlysinging 

just dropping in from your DDC to say i have been thinking about you and Finley ((hugs))

Thank you so much!  I'm still reading along, but feel like I don't have much to contribute since I'm no longer pregnant.