Missing a lot of posts, I've wrote but not finished. Here is some. Sorry

51 days old 9/13/21 (32 weeks 1 day)

I don't even know how to explain how worried and anxious I am. I just want her MRI results!

52 days old 9/14/21 (32 weeks 2 days)

We got good news today! ❤ Yesterday after Evelyn's MRI the fellow said though it wasn't catastrophic she would have Spastic Cerebral Palsy and the Neurologist would discuss it with us today. When I asked if we needed to get palliative care or hospice involved anymore she only said we could call them after today's meeting if we felt it was needed. We were devastated, as to us though not catastrophic it still didn't sound optimistic, with palliative care and hospice still being an option. We worried how today would go. But the Neonatol Neurologist, Dr. Adams gave us so much hope today! Though Evelyn likely has spastic CP the damage isn't showing near what he had been expecting based on her ultrasounds. He was pleasantly surprised to be able to give us an outlook for Evelyn that though will include a lot of motor challenges with therapy, possible medications, perhaps botox or surgeries she COULD and likely WILL overcome a lot of the effects from the damage. His notes even say that he anticipates her being on the mild end of the spectrum for disability. Her bleeds are resolving nicely, her ventricles are stable and it's looking positive. He said her bleeds are very unique and not how he often sees them, that the outcome will be a lot more favorable with with way they are. We won't fully know the extent until she's a few years old but right now we can look forward to Evelyn having a life that just includes extra hurdles and her learning to adjust how she does things for those. It appears her deficits will be more motor based and right sided and currently cognitive function doesn't seem to be impacted. This is a very good outcome and not one we expected with Grade 4 bleeds, we are content in our plan of care going forward with Evie and now look to healing her lungs and getting her to grow. The relief today was a much needed weight off our shoulders and we feel we can focus on her next steps going forward. She will be followed by Dr.Adams throughout her childhood and will start therapy right away and be included in the DREAM clinic here which specializes in CP, among other things. She still has significant ventilator needs but I'm optimistic that we have several options to try in the coming months to work on getting her off the vent.

It was a good day ❤

53 days old 9/15/21 (32 weeks 3 days)

They skipped Evies ROP exam because last week's didn't show much. It was a much needed day to relax. She actually had a really good day. It also happened to be NICU nurses day, that I realized late 😬 I quickly ran to walgreens and got some chocolates and gift cards for her two primary nurses. We can not thank Eileen and Nicole enough (and all her other nurses) for the amazing care they give our sweet girl!

54 days old 9/16/21 (32 weeks 4 days)

Evie got down to 38% FiO2 at one point and spent an entire night at 42%! I'm so proud of her!

55 days old 9/17/21 (32 weeks 5 days)

Someone was wide awake and had some smiles for mama this morning! 🥰🎀😊 She must be excited about her new plan. Yesterday we discussed trying Evie off the breathing tube soon and switching to NIPPV, it's still a type of ventilation but she would not be intubated anymore. Mommy would be able to pick her up freely then and get in a lot more snuggles! Currently it takes 3 of us to get her in my arms and you have to be incredibly careful not to move much with her tube. She also could have her hands free which she prefers but can't right now so she won't pull her intubation out. Mommy is very excited about the idea and hopeful for next week. We are going to try to avoid steroids for a while longer, hoping she can heal her lungs with some growth and time. 

***Update....I lie, today at rounds they went back on the NIPPV! Mommy is beyond frustrated, with so many different providers it feels like nobody can get on the same page with each other. Had a tiny cry at rounds that now that the last Dr who kept pushing to let her go is off service we need a plan to get her off the vent, I'm not ok with everyone just saying to see what happens without changing or trying anything. I listened to 3 weeks of this last Dr saying everytime I wanted a lung plan "we'll wait for her MRI because you might want to let her go". I've been told to be patient and have said I'm more than willing to be patient but need everyone on the same page and to know at what point we need to be to to try something, just saying let her grow isn't going to work for me! I need to hear a plan! Yesterday I was told we could have gotten her onto NIPPV a long time ago and the NP was even talking about what going home with her would look like, saying how happy she was to hear we are a family more than willing to do oxygen, feeding tube and monitor at home. She said that will help so much to get her home around term, as teams knowing parents are comfortable with extra supports are able to push for home more! I'm sad to hear keeping the vent longer is the "plan", mommy needs to be patient but is frustrated from always hearing different things. 

After I got upset Evies primary nurse, Eileen looked at me and said I was just upset! I hit the 8 week mark in the NICU which she said is the breaking point, the kids had close COVID contacts that I was worried about and I was leaving her after a week of being by her. She was right, I just needed a break. I was struggling that we hit 8 wks, a 8 wks I brought Beau home. It was breaking my heart Evie isn't near ready 😔

57 days old 9/19/21 (33 weeks)

Please pray ❤ (Heres Evies tired, yawn look cause Mama is also exhausted and my heart can't take much more sadness)

The hospital called, something is up with our Evie and they asked if I could come down. The come to the hospital calls are NOT ever something a mama wants to get! They aren't sure what and are starting a bunch of tests, she's needed extra support and bagging today. She's letting the vent do all the work more often than she typically does, as she usually works over it by herself. They did an xray and her lungs are actually showing better than her last so they aren't sure what's going on. Please pray everything is fine and she's just being sassy!

I had came home Fri afternoon to see the other kids but have been felt pulled since last night to get back. I was actually on my way when they called me to come down. I'm currently stuck in STOPPED traffic 25 mins away!! I just want to lay on the horn and drive past everyone, this is killing me

They still aren't sure what is going on with Evelyn but gave her some Clonidine because she's been more agitated, it seems to be helping her sat swings. But I walked in to a sh*t show this evening! Her oxygen saturation was at a 7!!! it then went to 30s and took some stim to get her up to 50s, finally a nurse came in after I went to find out why nobody was coming in. I was irrate and my heart was breaking at the same time!!! 30s for any decent length of time would be destroying her brain. I expressed my frustration and nobody seemed to do anything. Finally I went full mama bear, called Ben to get involved when I felt like nobody was believing what I saw. The respiratory tech happened to be in the room when I was expressing my extreme anger to the night nurse. She kept nodding her head in agreement with me at each point oxygen wise. And immediately started looking back on the monitor. She asked when I saw that and verified it did happen exactly how I saw it BUT thankfully the single digit and 30s I was seeing didn't seem to be accurate reads. Her heart was stable during all of them and she believes they were not real numbers. I am incredibly relieved to hear this as I couldn't help but be devastated at what that could have meant for her brain and organs but am still beyond angry! Real numbers or not, a nurse should have been in this room anytime a oxygen saturation is that low! Evelyn is NOT on nor has she ever been on palliative care, those numbers should never be hit unless she is. Her oxygen settings are in the 40s, she has a lot of room to go up if her numbers are getting that low. It's been a stressful evening and makes me question her care and leaving her. I can't be here 24/7 but now don't know how to trust leaving her. It shouldn't take me being here going mama bear and Ben calling to get someone in here to help our sweet girl!

It's also stupid but they moved her to a different room and it's been bothering me since I called to check on her and they told me. It's just across the hall but I have been sadly calling it the "hospice" room since we've been here as I'm 99% sure that's what it is, as they keep putting the babies who aren't going to make it in here, it has been breaking my heart watching it. Its an isolation (ANTE) room that also has a parent sleeping area separate from the baby part, it bothers me as to me it's a room meant for parents to stay close to baby 24/7 like something is near the end. I was holding Evie in her previous room one day with the curtain closed and when they opened it the baby was gone, another time one morning I came back and the baby was. I've listened to mamas crying in this room as they've lost their babies and have told Ben I hope we never get put in here. Then they put her in this room! They said it was just so she could have a window but I don't want to be in here! I want her old room back, I'm not comfortable in here at all, I'm sitting in a chair I know just last week a mama was saying goodbye to her baby in, I'm sure it's sadly happened in every room but I watched it happen in this one, I don't want her in here! I'm sure I'm being ridiculous but my heart is just so tired right now and it's just one more thing bothering me.