Exhausted

[mummy3]

I'm only just over a month into a very stressful NICU stay. Trying to arrange a transfer out of the hospital she's in and just juggling everything!

2 weeks ago she was given formula against our wishes. Firstly she had 2 days worth of breastmilk in the freezer the nurse didn't check for! Then they didn't call to tell us and then third they didn't read her chart (My 19m old has eosinophilic esophagitis, with our genetic condition this is 8x risk for Amelya too so it was decided all formula/fortifying would be elemental, neocate/elecare). So she was given milk based formula. She did end up reacting, needed breathing support again. She's finally back to not needing breathing help, omeprazole is helping and she's gaining weight not losing. The problem is the staff!! Between the formula and 3!! lots of isolation for Amelya with their awful infection protocols, putting her next to a baby who's dad came in twice stinking and I mean really stinking of smoke, they are just rude!!!

It just has been one thing after another.

The NICU I want her to go to will accept her, have space and are ready. The director there knows us and has looked after 2 of my other kids, the hospital she's at now agree to the transfer, the only issue left is transportation. $3k out of pocket if insurance wont cover. We'll know by Monday. We're escalating our complaint as well to have the current hospital cover it.

Add to that the hospital (where Amelya is still at) messed up my c section and after 4 weeks of antibiotics I finally got rid of an abscess they mis dx and have a large hernia I need surgery on that was also missed at their ER. The hernia surgery will be at Scripps in La Jolla, the hospital the NICU I want her to go is at. One big mess.

 

[AP]

Oh you poor thing you really have been through the mill! I have no advice to give but sending you

 

[mummy3]

Thankyou

Still waiting on the insurance answer, nothing seems to move quickly! I haven't held her since Friday either, yesterday a flying visit before getting the hernia looked at as it hurts so bad and today had our sitter sick so had to stay home, hopefully I can go tomorrow

27 weeks really is so different from 31+ How did you get through it?

 

[AP]

I have no frigging idea Seems like a blur now, I think I just went from day to day. I dont understand how I did that for 3 months. But I went from hospital and to the shops buying lil things for her all the time, took up my time. i made friends with some mums on the unit too.

 

[Kiwiberry]

Sorry about all the trouble they are giving you at the hospital. To be fair, they can't really control who comes in and out and whether or not they smell like smoke. Those nurses work so hard 12 hour shifts every day constantly monitoring the babies. Sometimes you need to make your wishes known instead of relying on them to do it for you.

I had a similar experience in the NICU as far as formula / donor milk was concerned. They would accidentally give her the wrong milk instead of what was in the freezer. It usually happened when it was a new nurse who did not know Riya and didn't pay attention to the charts about her.

I hope the hospital informed you that they would have to start all over with her discharge plan. At least that is what my hospital told us when we inquired about transferring. They mentioned they would have to start the process all over again at a new hospital and that new hospital might have different milestones than the one she was currently at. Plus, its pretty stressful on the babies to be moved around like that especially if its a far distance away.

It will be nice for you to have her at a hospital you trust and recognize that is for sure. Good luck to you, and I hope the grass is greener on the other side for you.

 

[SucreK]

Good luck with the transfer! We asked for one as well when one of my daughters was moved from a level 3 to a level 4 NICU (we wanted her less-critical twin to join her so that we weren't driving to 2 different states to visit them). In the end, my *very good* insurance would not approve the move because the transport was ~$20,000. I totally understand how you feel--if our transport had been $3,000, I probably would've paid it.

 

[mummy3]

Thanks guys

Kiwi, I should have been clearer in my post, the wishes were well known, we went as far as having a multi discipline meeting prior to even starting milk. My sons condition means he has no safe food period and is tube fed at 19m with a deteriorating esophagus that is literally breaking down and a prognosis of no food for the indefinite future. We are trying to limit Amelya's exposure to the milk protein, which is one of the biggest triggers, hence elemental formula, until we can do food introductions under supervision. She has an 8x + higher risk of my sons condition so doing what we can at this early stage to try and reduce severity in the case she does develop it. It was approved by her doctors and in her plan of care, I have been very, very vocal from the start, the thought of another infant having to deal with what Alasdhair has food wise is heartbreaking. So its a huge deal for them to just not check the freezer, call or not read her chart! Most babies like your daughter will be fine but that's not always the case so 12 hour shifts or otherwise, its not acceptable to put my daughter at risk. I hope you don't think I'm being harsh, I just want to try and explain better that its not always a black and white case of ooh its an honest mistake, don't over react, when actually these honest mistakes that most shrug off without a second thought as no big deal to them, can have serious lasting effects on others

Yeah the smoking guy just pissed me off

Sucre, wow $20k That's awful I cant even imagine juggling 2 different states

I do have an update here but will do it when its not 3am!

 

[SucreK]

Wow, that's a very serious concern re: the proper milk! I'm glad you've been so vocal. Regarding "honest mistakes," I understand how you feel: one night, just a few days after Nora's first major surgery, a nurse put Potassium into the IV in her hand, not the PICC line. And she left it running for 2 hours. When she came back, the skin on Nora's hand was black--the Potassium should only ever been in a central line, and it had given her second degree burns. I got a call that morning at 12:30 am saying, "We don't think she'll lose her hand, but we are calling in the plastics team to think about skin grafts."

I am so incredibly grateful that the awful burn cleared up perfectly with no side effects and no interventions needed. But honest mistakes can have potentially devestating effects.

 

[SucreK]

Also, and I know you know this, it's SO HARD doing the NICU thing when you have other children. You can't be there 24/7, though you desperately want to. So you HAVE to trust your nurses and pray that they read the charts and do the right thing. It's a terrible position to be in.

 

[mummy3]

Wow, that's a very serious concern re: the proper milk! I'm glad you've been so vocal. Regarding "honest mistakes," I understand how you feel: one night, just a few days after Nora's first major surgery, a nurse put Potassium into the IV in her hand, not the PICC line. And she left it running for 2 hours. When she came back, the skin on Nora's hand was black--the Potassium should only ever been in a central line, and it had given her second degree burns. I got a call that morning at 12:30 am saying, "We don't think she'll lose her hand, but we are calling in the plastics team to think about skin grafts."

I am so incredibly grateful that the awful burn cleared up perfectly with no side effects and no interventions needed. But honest mistakes can have potentially devestating effects.

Oh hun That's just awful My heart was in my mouth just reading that, I don't know how you coped hearing that I'm so glad she was ok!!

I don't know how you juggled 2 different hospitals?! Its got to have been the biggest relief ever to get them home! How long did they have to stay in hospital for?

 

[SucreK]

Lena just 16 days, growing and feeding. Nora 74 days for 2 surgeries and a 6 week battle with a wound infection. Funny how I've blocked a lot of that time out of my memory.

I'm thinking about you and rooting for your sweet girl! What a fighter!

 

[mummy3]

What beautiful names

I think its natural to block things out when they're so traumatic, I know a lot of my sons hospitalizations and endoscopy after endoscopy every month, 2 months max is one big blur. Its a way of self protection How is Nora now after her surgeries?

Thankyou for listening

Our update, the complaint is with the director of the NICU, the head neonatal GI came to see us and brought the doctor who signed off on the formula to apologize so they did investigate there. Then he went on to her about how dangerous it was and how we had every right to be upset, he's offered to be her primary physician and to follow her after she is discharged. He is a colleague of Alasdhair's EoE specialist GI and knew exactly what we're dealing with and can give us fast access to the EoE clinic at the first sign of escalating problems. We've been moved upstairs to the lower level NICU with my ride and her son, our own little pods with beds and free meal vouchers as well as primary nurses to limit the amount of people Amelya is exposed to, in an attempt to stop confusion again. Still waiting on insurance to pre approve the transportation but in the meantime I feel a lot more reassured, esp that she has a doctor now that completely understands the condition!! Still going ahead with the full complaint though, in terms of the future, if she does have as severe problems as her brother. I am impressed at how they've gone out of their way to address what they can in the meantime.

 

[SucreK]

I am so, so glad to hear they're taking the situation very seriously. That's phenomenal and must be very comforting. I can imagine, after what you've gone through with your son, that you are absolutely not willing to take any risks with this.

I am happy to listen and talk. I've never felt more isolated than when we were in the NICU for so long. Only people who have been through it really understand.

Nora is doing so much better after her surgeries (touch wood). She used to be a few pounds lighter than her sister, and now she's just one pound lighter AND she eats more voraciously than Lena (but Nora's much more active than Lena, so she works some of it off!). If Lena leaves some milk in her sippy cup, Nora will toddle over and polish it off. It must be inherited--I do the same thing with my husband's leftover wine, champagne, beer...

Do keep us posted on this, if you aren't too exhausted!