u/jlovesquinn-emmett

I haven’t posted in awhile, but you can follow our journey from previous posts.

We had a major hiccup after my daughter’s g-tube surgery. She couldn’t get extubated. So…trach we did. I don’t think I’ve ever been more worried or heartbroken. But now I know she needs a trach and will be coming home safely. And I know we can do hard things. She is the happiest and cutest baby.

We are going home in 3 weeks!

Our sweet girl is being challenged again. Last week, she had a routine g-tube surgery which was one of the last steps for her to be discharged. Baby girl wasn’t able to stay extubated after surgery. She had some swelling in her airway in addition to tracheomalacia we already knew about. She did eventually extubate a few days later. But since then she’s requiring more respiratory support via BiPaP, more sedation medication, more rec epi and albuterol to keep her comfortable. We were on the track to come home, but that is now delayed obviously.

Before the surgery she had gotten down to low flow of 1L. She has always had a bit of retractions because of the tracheomalacia. But this is showing it is more severe than we thought.

Ex 25 weeker, now 8 months/4 months corrected.

Any words of advice from families that have gone through this? We just want our girl happy again. It’s so sad to watch her go through this.

We were so close to going home and then this. She had g-tube surgery yesterday. They tried to extubate her about 8 hours later when she woke up but her airway was swollen. She already has tracheoomalacia. Anyone have something similar? Did they extubate after a few days? She’s getting some steroids to help the airway before they try again. Before surgery she was on low flow of 1L with her baseline retractions from BPD & tracheomalacia. I know she’s in the best hands in the world but it still never gets easier.

We are headed home in a few weeks! Send me all your positive stories about going home. I am freaking out! My daughter has BPD that is getting better and severe tracheomalacia in which she has slight retractions and some audible breathing (which makes me the most nervous). Heading home with a g tube and low flow/possibly high flow. Our experts are not concerned with sending us home, just me 😆. Everyone keeps saying that they make so much progress at home. I need some more stories like that!

We're going home in about a month (hopefully)! I'm wondering if you have had success getting private duty nursing in your home after discharge for your baby with a g-tube and oxygen? I could make a case that my daughter has a history of desaturating and/or aspirating (possibly), but otherwise she is very stable. Nursing costs $150 an hour so I want insurance to pay for it. Even if it was just a few hours a day.

How are my long-stay parents doing??

Today is 6 months since my girl was born.
Ex 25 weeker - 760g - BPD
Now 11.5 lbs!

She’s moving to high flow on Monday and doing great!

We will hopefully be home in a few more months and/or whenever she is ready 🩷