UPDATE: Sorry haven’t updated lately life being a medial momma gets so busy!

March 2026, we are 13 months and just overcame one of her biggest hurdles! For 13 months and 10 days she has had to eat through a tube but today she was given clearance to eat and drink orally. This is HUGE for her and we couldn’t be more proud. The only thing she is still requiring is feedings through her Gtube until she learns how to eat through her speech therapy. Her PT/OT are going amazing and she is learning so much. I’m hopeful she will be crawling by summer time! She is off of oxygen during the day but she still needs it at night as she has some oxygen dips. She talks like crazy and so far we can make out da-da, ma-ma, hi, no no no, and ha ha. She has more personality than anyone I have ever met and I wouldn’t trade my little zebra unicorn for the world

UPDATE: It’s been a long busy month so I figured it was time for an update on Junie

Surgery went amazing (about 3 weeks ago)! She tolerated her feedings after perfectly so we were able to come home the next day which they thought would not be possible due to her being on oxygen. Well the oxygen went the other way due to surgery! I’m sure some have noticed in her most recent pics there’s no more tubes and wires on her face she does still require oxygen however it’s very little and mainly only at night, her levels are monitored in a monitor so I can get her oxygen quickly if something would go wrong for her. She has a pulmonary appointment next month and hopefully we will be able to come off oxygen completely

We also got confirmation on her genetic tests she had done. This was quite a process and happened by pure chance at a random appointment so we got lucky we found out early. She has a chromosome deletion (15) which is a rare disease called “Prader Willi”. It is a very confusing and complex disease that will follow her her entire life and there isn’t any cure. This disease gave us a lot of answers on her low muscle tone and eating struggles. Being a preemie born at only 27 weeks most of what she is doing is “normal” for a baby born 3 months early, however Junie does have very low muscle tone making it hard for her to hold her head or sit unassisted, but she can roll front to back snd bscl to front along with scooch herself across the flooe.!We have several appointments with genetic doctors and counselors in the next several months so it will be busy again.

Next month she has a sleep study to check for apnea’s, ENT appointment to figure out what they saw on her scope during surgery and her pulmonary appointment to possibly come off oxygen!

I can’t believe she’s 9 months already and doing all the baby things. She is the happiest baby but she has the worst judgy look she gives EVERYONE

UPDATE: OK, so here is an update on Juno for everyone that has been asking:

First some positives, she turned five months old on Sunday (she would be two months old if she was born on her new date) she is 10.9 pounds, she is in a good spot for her weight. Her height is teetering, she’s a little small but that’s to be expected. 

For other things which are still being processed and pending some results, however, the facts are (i will explain more in detail below). She is up to 1 liter of oxygen per hour, which is significantly increased from the 1/16 liter she was on when she came home. She is still tube fed through her nose however, we are going to be putting a port into her stomach so that it is more permanent as she is not able to take anything by mouth at this time. She also has a heart murmur, which is called a PDA. It is very common in babies born early typically resolve on its own however, hers has not. Her genetic testing did come back and we did find some early results.

With that stuff being said, this is what we can expect in the future. For her lungs, we have been referred to an ear nose and throat doctor to check her airway to see if there is any scarring from when she was on a ventilator when she was born. We also have increased her oxygen as I said, and are monitoring her more closely for patterns on when her oxygen goes down. For her heart murmur that is where it is getting a little scary. It should have closed by now however today’s echocardiogram was not so promising. I did get very minimal results that the murmur was still there and that further steps will need to be taken, however I do not know what those steps are yet. Her genetic testing came back, showing that she has a chromosome deletion. There are two syndromes that are extremely rare that she could potentially have for genetic testing is being done on myself to narrow down the conditions she has. We will not get further results or answers on that until around September of this year.

She now has a specialist in Indianapolis, South bend, and Fort Wayne. To say that I am terrified for my teeny tiny five month old baby is definitely putting it lightly. I have gone nonstop making sure she has the best care and outcome possible. I have not been able to work, I have exhausted about every assistance I can at this point and it just keeps piling up.

If I could just get every single person to say a prayer or send good vibes for her, it would mean more to me than anything. I know times are tough for everybody and everything is so expensive. If anybody has any suggestions on Assistance or has been through any of this personally please reach out. Please feel free to share this. Every single tiny thing helps right now, this has been the hardest 5 months of my life, with very minimal support it’s taken literally everything I have. I have included the go fund me link we have set up to help with bills and transportation (also have cashapp and Apple Pay)

UPDATE: A little update but not going to be much fun update I miss Junie bug. We are still in the hospital Indianapolis. They have narrowed several things down to where they believe it is either a genetic skin condition which we did genetic testing for or is some kind of a burn that has no explanation.

They are monitoring the wounds for infection and we are hoping to be able to go home in the next day or two. We will know more at today’s wound change.

Jason came and got Bexley this weekend so it has been a very quiet and lonely in this room. It has been a very hard weekend for this Mumma.

Juno did turn four months old the other day she is now 8.9 pounds. She is 19 inches long. She’s starting to hold her head up. She is still on a quarter a liter of oxygen an hour and gets her feedings through her NG tube. Her eyes are becoming very beautiful blue. She is focusing on things, she loves holding peoples fingers and has becoming a very active baby.

People are still asking if we need help. Mostly we need prayers that we all stay strong through this!

My little warrior has come along way from February 6, 2025.

Update: baby Juno now has been diagnosed with a heart murmur and doctors found something on her brain ultrasound they can’t explain yet and will be looked into further. She now is up to 2 pounds which is good and seems to be eating well. She was supposed to come off her vent this week but now due to the new findings and has to wait at least another week. Please keep the prayers coming we could definitely use them, my momma heart is breaking for my precious baby girl.

My name is Sammie and the precious baby in the photos is my daughter Juno. Juno was delivered 13 weeks early at 27 weeks and 4 days gestation due to preeclampsia. Juno has a very long road ahead of her as she was placed on a ventilator, bubble jet, feeding tubes, stomach pump lines, and nitric. I am a single mom to Juno and also have an almost 3-year-old at home. I had my gallbladder removed 2 days before her birth to try and keep her in a little longer; however, things continued to go downhill. I was off work for 2 weeks prior to her birth and will need to be off work for a while longer.

We are making this in hopes to get help with transportation to and from the hospital, as it is a 45-minute drive, help with some medical bills that aren’t covered, as well as helping out with the bills piling up from not being able to work. I am not typically someone who is willing to reach out for help; however, this will help with the financial burden that keeps growing at this time. Juno won’t be able to come home until at least her due date in May, so anything can help that will allow me to be with her as much as possible while also seeing and caring for my other daughter at home. Thoughts and prayers are appreciated as we begin this long battle.