I need to vent to people who understand

HEmery · January 2012

I've been okay with Walker being in the NICU. I understand that that is where he needs to be, but I'm starting to wonder WHEN we will ever bring him home.

His surgery to connect his intestines probably won't be until February and hopefully they are able to remove the blockage during that surgery. Then there's recovery time of almost three weeks. Then we start feeds. Which Walker has never made it to full feeds in his 81 days of life. I know it's a big hurdle.

I thought for sure he would be home in early March and now it's looking at April. I'm it will get pushed back again.

I just don't understand why I was dealt this card and why my sweet, sweet precious baby was chosen for this life.

carlamell · January 2012

First off, huge hugs to you! I know that "will he ever come home" feeling all too well.

My little guy was born at 29 weeks and stayed for 8 weeks, and our NICU was an hour away. I truly hope that his surgery and recovery go well so he can come home! Try and stay positive. I know it's SO hard because all you want is to have your baby at home with you..

haziedaze · January 2012

((HUGS)) Are there things he is waiting for besides surgery? Are the waiting because he needs till March to heal his intestines? I'm so sorry it's such a long road for you and your little guy. Be strong momma, he WILL be home some day!

KatFCo · January 2012

It is hard, especially when asking "why me? Why did this have to happen to us?" because there just aren't any answers.

However, if all you're waiting on is reconnection surgery (I assume from NEC?) and recovery, the wait may not be as long as you think, My daughter never got up to full feeds until after her surgery, but it was only 3 and a half weeks between the surgery and coming home. Are they giving you a reason it may not be until April?

Keep reminding yourself, he WILL come home. It helps to know there is a day in the future and it might come upon you suddenly.

HEmery · January 2012

Yes, he had NEC. He had the surgery and started to heal and we tried feeds. It was when we hit 15 cc that he started having a lot of residuals and we found blockage that was so collapsed that a GJ tube, I think that's what it is called, couldn't make it pass the blockage.

Surgeon is hoping to do just 1 surgery but hasn't made a final decision. The blockage has to be removed which could mean an additional surgery. Until then he won't be eating.

So he has two to three more weeks until the surgery to connect the intestines, which takes us to February. He'll have to heal from that surgery and if there is a second surgery, that would include more healing time.

They can't say for sure when he will come home but when we brought up March, they thought that was too close to call.

Medtwin · January 2012

Like Carlamel.. I totally understand what youre feeling & I'm sorry anyone has to go thru it!! My baby was in the nicu for 125 days.. 2 1/2 hours from home.. i lived at a rmcd house.. which was an experience in itself.. i dont tell you my story for you to read & feel sorry for me..i tell you so you can have HOPE!! you'll be outta there before you know it.. Good luck.. it DOES get better!

jenifairies · January 2012

I'm sorry, girl. I completely understand where you're coming from. We haven't dealt with NEC, but Layla's lung and breathing issues have been a big stressor. I started crying yesterday feeding her a bottle because I hate how much my poor baby has to struggle to do such simple things that come naturally to full termers. It's gotten harder for me the last week or so, I think because I'm mostly past the point of worrying if she'll survive. So now I'm getting mad about all she's had to deal with - you know, like my brain has more time to think about things other than if she's going to live. I don't know if that makes any sense, I'm having a hard time with words.

The not knowing really sucks. I hope that things turn around for you guys soon.

KatFCo · January 2012

HEmery:

Yes, he had NEC. He had the surgery and started to heal and we tried feeds. It was when we hit 15 cc that he started having a lot of residuals and we found blockage that was so collapsed that a GJ tube, I think that's what it is called, couldn't make it pass the blockage.

Surgeon is hoping to do just 1 surgery but hasn't made a final decision. The blockage has to be removed which could mean an additional surgery. Until then he won't be eating.

So he has two to three more weeks until the surgery to connect the intestines, which takes us to February. He'll have to heal from that surgery and if there is a second surgery, that would include more healing time.

They can't say for sure when he will come home but when we brought up March, they thought that was too close to call.

My daughter didn't have blockage, but her NEC was so high up in her intestines, they couldn't handle food, so every time they tried to increase the amount of food, she couldn't handle it. She had 12 weeks between the NEC surgery and the reconnection (was born at almost 24 weeks).

The doctors were often unwilling to guess how soon she might come home because there are a lot of variables and they don't like getting people's hopes up. After her surgery, they just kind of sprung it on us that she was going home.

It helps to have a plan, though. Rather than just say "maybe someday," you have something to cling to. There may be setbacks, but hang on to the fact that you know he's coming home.

ladybugbella24 · January 2012

I totally understand you. My LO had a bowel perforation on day 9 of birth. She didn't "eat" for 45 days. She was born in august and didn't come home for until Jan. It was a very hard 139 days. In December she had the surgery to reconnect her intestine due to NEC. Prior to the surgery she was at 3ml of formula every 3 hours and weighed 4lbs. Hardly at full feeds. All that being said, I find that once the gut is good youre good to go. Yes the recovery is long but eventually you WILL go home. Stay strong!

AustinGurl · January 2012

I'm so sorry. We are in the Memorial City NICU.

Mrs. Alice · January 2012

First off, big hugs to you! Left Hug

What you are experiencing is so tough, the hardest thing you will probably ever have to go through. After a while the NICU seriously wears you down. I only had a 70 day NICU journey, but near the end was so hard for me. I was emotionally and physically drained from going to the hospital every day. Looking back it didn't seem like that long, but going through it felt like enternity! I think most long term NICU moms reach a breaking point (or two, or three) during the stay. I'm hoping you can get a light at the end of the tunnel soon and this will all be a past memory. Feel free to vent any time and keep us updated.

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