Miss Alivia Jade made her grand appearance on July 14th at 4:02 a.m, she weighed 7lbs 5oz and was 19.5” long.  

As soon as she was born she was whisked away to the NICU at BMC. At first we thought she just needed a little help transitioning after a bit of a quick entrance into the world and the fact that her cord was pretty tight around her neck.

After just a few hours the NICU doctor was in our room with some not so good news, she was having trouble breathing on her own, they thought she may have Persistent Pulmonary Hypertension of the Newborn. She was intubated and flown to Childrens Hospital in Morgantown.

Luckily I was discharged soon after, they told us it would be a few hours to get her to the new hospital and get her settled in so we made a quick stop to grab a few things that we thought we may need and to see the older kids and made the almost 3hr drive to be with our baby! 

Since being in Morgantown they have run so many tests and scans. They checked her lungs, heart, brain & could not find a single  cause for what was going on. She’s had a spinal tap, 2 eeg’s, mri’s, xrays, and soo many labs run that I lost count.

By this point we knew she was overall a healthy, happy baby but she continued to have spells where she would just stop breathing. They tried to take her off the tube several times but ended up having to reintubate her each time. The last time she went 2 days without it. 

At this point she’s been intubated for going on 11 days straight. They have moved onto genetic testing. Each test can take weeks to get answers and takes a good amount of blood so they have to choose which tests to do first and then continue onto other tests if nothing is found. She currently has 3 tests pending and we’re justwaiting on answers. 

The doctors have also mentioned that wemay not get any answers, they say that whatever is going on is rare and it’s not something that they’re used to seeing. They have even talked about eventually just giving her a tracheotomy so that she can be sent home safely. 

We know she is a fighter & she continues to get stronger each day! The last 19 days have been a roller coaster of ups and downs and it’s hard to tell how many more days we have ahead of us here. We’re just taking things one day at a time and appreciate all the  continued prayers & support. 

Ultimately the biggest thing we need right now is for everyone to continue to pray for our little girl. Creating this fundraiser  was not an easy thing for me to do, as everyone knows I am the last person to ever ask for help. I’m at the point where my little girl needs us and the worry and extra stress does not do any of us any good. Her medical bills should all be covered with her insurance but the cost for us to stay here with her is what is really adding up. The Ronald McDonald house is extremely restricted due to the COVID & only allowing 2 people at a time, when there’s an opening. We were able to get a referral to a local hotel and even with the discount we are paying $70/day for our hotel. We have already paid over $1500 to be here just in hotel fees & they continue to add up daily.

We are quickly blowing through our emergency savings and unfortunately her daddy will have to go back to work next weekend after using up all his vacation/sick pay to continue to cover the bills back home. I’m afraid that at this rate my baby will be here for several more weeks at the minimum but I can not possibly fathom having to go home and leave her here alone. Traveling back and forth just seems impossible but I will do whatever I have to to be here for my sweet girl. 

We are incredibly grateful for all the prayers, words of encouragement and donations. We truly are blessed that we have her and we know we will make it through this and can not wait for the day when we bring her home!