NICU Farewell

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(From my Facebook post)

Yesterday was crazy and stressful, but as a great NICU Neonatologist always said to us…”we want to be thoughtful”…well, I want to be thoughtful and don’t want to forget to post about our lovely NICU farewell! Brenden is officially a NICU graduate! 🎉Brenden was kissed and hugged, & we received an incredibly sweet card and graduation certificate. As we walked out, they rolled out a red carpet for us, stood on the sides and applauded (as we cried happy tears😅). 

Words can’t express how thankful we are for the care Brenden received at Cornell! So much happened there…emotionally charged discussions/decisions…laughs, tears…many beeps…hearing “it’s positional” 100x Lol… suctioning, suctioning, suctioning (did I mention suctioning?)…washing our hands so much in the sink that gets incredibly hot quickly…trips to the OR…field trips to MRI with tons of coils…lots of emotions and even more education…rounds that got shorter and shorter…trach stuff and giving needles to fruit…learning more medical knowledge than we had ever wanted to know…being excited about diapers and head circumference…& starting as being so frightened to sitting back and watching the staff save other peoples babies lives every single day! 

Brenden slowly but surely got better thanks to lots of loving, caring, & wonderful people! I wish I got pictures of everyone…but here are a few of Brenden’s favorites (last pic)! These are people I know we will keep in touch with as time goes on…we will visit when we have follow ups…now they are stuck with knowing us forever! Haha 😂 Honestly, there’s no one quite like these people!! 

I just hope that everyone from Cornell knows that if they ever question their job choice that they can be reminded (by me, at least) of how much each and every interaction meant to our family and how they are all so very appreciated and loved! They saved Brenden’s life multiple times and loved him as if he was their own…& for that, we can never repay them! They will always be considered a part of our family! ❤️ xo

#BrendenMatthew #040118 #NYPNICU #120days #theysavedourbaby #theysavedourlives #nicu #peaceoutNICU ✌🏼

 

Little by little…

This is long, you guys…but a lot has happened!

Thursday morning, Juliana & I were in our car on the way to swimming class. Mike went to the NICU. He called to tell me that our social worker told him that there are no beds at Blythedale for the next 2-3 weeks!! 😡 Apparently, we WERE next in line until they had trouble finding the right dose of Lovonox 2 weeks ago and we lost our bed to someone else…and now there are kids ahead of us. 😳  

Before hearing this, I had asked earlier in the week about going straight home. We’ve been doing all of his cares (5 trach changes, daily tie changes, suctioning, PT, SLT & Lovonox shots) and he has been very stable. Actually, he’s been doing better than stable…he’s shown a lot of improvement overall! Little by little, a little has become a lot…and he’s really come so far in these 4 months! So, after thinking over these points & the fact that there was no bed available..the hospital decided that they were going to prepare Brenden to go home. They said it would take “10 or so days” to get his home vent to the hospital, try it out at the hospital and to get everything set up at home. 

So, Mike tells me this when I’m in the car…

Juliana: Mommy! What happened? Why are you crying?

Me: I’m not sad…these are happy tears! Daddy said Baby brother is coming home soon!

Juliana: Hooray! I’m so -cited! I am going to have my baby brother!!

Hooray!

(BTW, swimming class has been going great! Juliana is a bit scared of going under water, but otherwise she is a little fish!)

& Here’s Juliana on our way to Manhattan after class to meet up with Mike so I could go to the NICU…

Sooooo that was yesterday. Then we come in today…and find out…

Blythedale called and now they have a bed for Brenden!

Huh?! 🤔😳😂😫😱

What does that mean, right??? 

(They weren’t kidding about that whole Blood Moon screwing up communication for everyone today, amiright? 🤔🤭)

Well, it’s a good thing afterall. Monday at 10AM he will go via ambulance (still pending insurance coverage approval, but whatever…) to Blythedale…but the “10 or so days” timeframe remains (as long as there’s no new hiccups). The vent the hospital ordered for home will go to Blythedale and he will still try it out before we go home. So, same time frame to getting home, but he will benefit from additional services in that time period at Blythedale (PT, SLT, etc) and they will be able to set up all of his Early Intervention Services for us! Plus…Juliana is allowed to go there so she can FINALLY meet her baby brother!!!!

So all things considered, we’re much closer to going home! 😄 

At this point, people keep asking us if we are nervous, but we are totally excited and anxious! I can’t wait to have Brenden home!! I can’t wait to be able to snuggle him and hold him whenever I feel like it and not be on a hospital schedule! I can’t wait to have my babies together!!😍

We have been at this for 118 days (he’s 117 days old as of 7/27/18). I have not missed one day of going to see him even though we’ve had to juggle spending time with Juliana, me having to go back to work and just trying to keep up with normal life (laundry, food shopping, & caring for Bailey & Kiki, for example). Mike & I have had only 1 haircut each in the past 4+ months and 1 night out to “relax” (we went to a Radiohead concert one night in early July -we had bought the tickets in the winter & the nurses at the NICU encouraged us to go- I had one beer (my first in about 2 years), felt very emotional and then fell asleep in the middle of Madison Square Garden 🤦🏻‍♀️). I was so exhausted that the first time I could sit down to enjoy something, my body shut off!

This has also been extremely financially draining on us with Mike unable to take gigs (freelance work is great when he can accept jobs with 10-12 hour days for 4-6 weeks solid, but it was impossible for him to do that with having to be at the NICU and not knowing what would happen day to day. Fortunately, I have an extremely understanding boss and now summer break, so that’s why I went back for June.) Driving/parking in Manhattan is insane (approx $40 a day + gas & toll) and taking the train is 3 hours round trip…plus constantly ordering food and grabbing food out quickly because there’s no time to cook.

We are so grateful for those who have sent food & for those who donated or did side-fundraisers to add to Brenden’s GoFundMe so we can make sure we get Brenden everything he will need to be comfortable at home. Thank you to everyone who has helped in any way!!

Additionally, I need to sing the praises of my mother who has basically given up all of her personal time to us, full time 5-6 days a week for insane hours to take care of Juliana. Juliana loves her Mema so much! Without her, I don’t know what we would do! Juliana is also baby sat by our dear family friend Rosemary when my mom works (part time 2 days a week) and on most Saturday’s by her Auntie Lisa (for which we are immensely grateful to both of them), but my mom generally sees Juliana for at least a few hours every day. My mom also took the trach simulation classes so she is ready for Brenden. Once he is home, she can help us but now she can take time to do things for herself, as well. She won’t need to be at our apartment at 6:45am every day, for example! 😉

(A pic of my mom with us in April. She’s still never even held him yet!)

I need to mention also that besides my mom, we’ve had Brenden’s Auntie Lisa & Aunt Jess trained in his cares. We might have 2-3 more family members trained, too! ❤️

I know it won’t be easy, but I’m so ready to have him home…although, I’m technically still preparing his room. We decided not to move and have just rearranged our apartment to make things work. It’s so thrilling that now I can finally work on decorating and setting up his nursery! It almost feels like surreal that we can do this!

The only thing is that his nursery is undergoing a great deal of consideration…much more than when we brought Juliana home. For Juliana, I was obsessed with matching her “Under the Sea” theme. For Brenden, he will have a theme (I will post pictures when complete), but we have to consider how we were going to set up the room due to where his vent will be, and thinking about all situations (ie. which way is it best to set things up for when we need to do trach changes, how is it best to keep his supplies, etc). We need to figure out the best ways to arrange and organize all the medical supplies, too. Plus, we need to maximize the small space so that his nurses will have room to work and easy access to supplies. We will be having nursing care somewhere near 24/7. I’m not even sure how to feel about that…having a nurse in our apartment all the time…maybe glad, maybe anxious. 🤷🏻‍♀️

We also need to order the extra equipment that insurance won’t cover (I finally learned exactly what SHOULD be covered yesterday) and return our car (lease is up in August) and figure out what kind of car to get next to best suit our family’s needs (think minivan)…soooo much to do!

Anyway, that’s where things stand as of today! I’m so exhausted and excited…I don’t even know how to explain it. Sorry to all reading this if I am rambling. I’m just so thankful to be where we are. I will update again once we are settled at Blythedale. I need to do his laundry and start packing some stuff for him to take there…but first, to put his Big Sister to bed! 😴

Medical clearance to leave!

Our GoFundMe: Bringing Brenden Home

Updates updates updates!

Today Brenden is 103 days old! He got his central line out yesterday! It was too stuck in there to remove from the bedside, so he needed a little procedure in the OR to get it out. They had held feedings from 1am and he literally waited ALL day for the procedure. I brought Juliana to the hospital after her 1st swimming class, thinking maybe she could meet him quickly on his way to the OR (since they pass the family waiting area). He wound up not going until 7pm, so we had left by then to get her dinner.

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Side note: at swimming class, I ran into one of Brenden’s nurses…with her son Brendan! How weird is that?!

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Anyway, the procedure went well & the line is out!! He was very active today, awake and moving a lot! He smiled and winked at a few of his nurses and of course, at his first love (ME! Haha). His Anti Xa level (blood thinner med) today is finally therapeutic and stable…his hematocrit is good (he got a blood transfusion on Monday after Mike & I noticed that he was pale and asked them to check his levels)…so we were given medical clearance to leave the NICU! HOORAY! He just needed a little hearing test to make it official…which as I type this HE JUST PASSED! Woohoo!! (They had tried to do the hearing test the other day, but he moved too much. That makes me laugh…my baby that was born completely hypotonic, moved too much!) 😉

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Our private insurance agreed to cover most of Brenden’s stay at Blythedale (although we are still fighting them and checking Medicaid to get coverage for transportation there!). Blythedale called earlier this week saying they were basically ready for Brenden…but he wasn’t ready. Now, he is…so we’re just waiting for the confirmation that they have a bed!

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Here’s Brenden…happy as can be after his central line is out!!

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Other stuff that has happened since my last post::

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1) The NICU had been having a hard time getting a correct Anti Xa level (amount of blood thinner in his system) with his Lovonox injections. Due to this, an MRI/MRV was ordered to see if there’s any possibility that the blood clot is gone. As we waited for that…it was discovered that his levels were all over the place because they are not drawing blood straight from a vein/artery. They were drawing it off his central line, which also gives him IV with Heparin in it…a blood thinner. Sooooo, they started drawing it straight from the vein (after 3 weeks of chasing this) & it wasn’t an issue anymore. However, all of that annoyance was worth it because it pushed the doctors to do a MRI/MRV sooner…and it showed us that the clot has shrunk significantly! Yay! He will still need the medicine for a bit longer, but this is great news! Mike & I have been practicing giving subcutaneous shots on various fruits so we will be ready to give him his shots on the regular  once we are out of here. Lol

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2) We had a new-to-Brenden nurse on Saturday. Long story short, Mike caught her skipping a step. She did not put on sterile gloves to suction Brenden’s trach and left on the plain gloves she had. This is bad, because a trach is a straight route to the lungs…so you need to be super clean when handling. I reached out to everyone I could and basically…this nurse did not know that this was supposed to be a sterile practice IN THE HOSPITAL. 🙄 All of the nurses we’ve had up to this point seemed to know, though. This is the way we were taught during our simulation class…although, as his parents we have a right to choose whether or not we want to wear the gloves. We choose to wear the gloves, for now, especially while he’s in this hospital setting. Soooo, many apologies later…we were informed that the entire staff needs to be retrained on this and the message will be spread. This is hospital protocol…we are right, etc etc.

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3) On Wednesday, Mike & I accomplished our 3rd trach change. It seems to be getting easier, although still not second nature yet.

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4) On Thursday of last week, I was changing Brenden’s trach ties with the nurse and noticed a granuloma. I thought it was a booger, actually lol…there was some discussion between the nurse and NP about whether ENT should be notified. Our amazing nurse pushed to notify ENT. They came to see it and Dr. Rosenblatt (the one that gave Brenden his trach) ordered them to cauterize it with this silver nitrate stuff. They told me it wouldn’t hurt him and it will just shrink it…and that this is totally normal. Hah… “normal”…none of this seems normal! lol

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Anyway…back to the main point…now we wait to leave!! Hopefully, it will be any day now!!!! Yippie!!!! ❤️😁❤️

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Thank you to everyone again and again who has shared Brenden’s story, donated, and reached out to us in one way or another!! We love you all! 💖