Let's start from the beginning . At 23 weeks I had a placenta abruption. Likely from hypertension and stress. I stayed in Albany Med for 3 weeks. The clot was 12cm by 7 cm they put me on mag and gave us the first round of steroids and lots of fluids and a blood transfusion on day one and two . The bleeding had gone down to dark and a little clotty. Never really any cramping. They released me at 25+ 6 w I went home on mod bed rest. Which was doable but harder cause I have a 10 m old. (shes now 1 years old) By night five of being home I was cramping but the only discharge I had was tiny bits of black clot and brownish black blood. I had a scheduled appointment for the next day with the specialists and was told I'd be having a check up and an ultrasound to check his growth and to check the clot. So I knew since I had zero bright blood and I was told that shedding of the clot may cause cramping and as long as it was old blood I was okay.
I get to my appointment the nurse comes in and checks my Blood pressure. The resident comes in to tell me that I'll have a transfer of care because my original OB wouldn't wanna touch my case and theyd end up constantly sending me to Albany med any way. So I say OK I get that . then I told her about the cramping I told her they feel like mild contractions. She said. " as long as they aren't coming in timed its just the shedding " I said its constant and flares up starting low and gets really bad in my lower back. And it is timmed . She just nodds in agreement. I then ask about the check up and the ultrasound . she says no that's not on your paper work for today well do that at your next appointment. I told her that I was supposed to be coming in for those things today not just a simple " oh yeah stop seeing your ob and come to us from here on out" I was concerned I asked her to if she was sure cause I know I was told otherwise . and I told her these cramp feel like possible early labor . she assured me I was OK and I don't have bright bleeding so I should be OK unless I see fresh blood. So I just take her for her word and go about the rest of my day cramping.
I'm not trying to play the blame game but .... If only shed of at least given me the exam.
We live in up state NY and on Thursday night we had a decent storm especially for November. And driving in it we avoid especially with my daughter in the car. So around 12 the cramping got worse and they were 4 to 7 mins for about an hour till 1 am. I was obviously concerned but they stopped. and I fell asleep till 3am or so . woke up with HORRIBLE back labor. I then went to the bathroom and had a tiny bit of fresh blood. At this point I was positive something has gone wrong. I wake up david I'm trying to toss some fast stuff into a bag throw on some clothes .He's getting up trying to get our daughter ready as fast as he can, I have another strong pain. I go to the bathroom and I giant GUSH! Comes pouring out watery and dark brown. I know its my water. I'm in full panic at this point I change my pants .. He puts our daughter in her pack n play rushes out clean off his car from the snow and warm it up. I have more contractions at this point and I just wanted to get in the car and be ready to GO! So I rush out side and as soon as Im standing in front of his car I feel a huge amount of pressure and I screamed HES COMING!!!! Instantly And I can feel him slide out into the thigh of my black Lula roe leggings! He was crying.
David rushes me in side then I'm on the floor holding on to our tiny son. David instantly grabs a clean towel and calls 911. I'm sitting there gently holding him in the towel , he's breathing he's moving . I'm just constantly checking him panicking assuming hell pass at any second. The ambulance operator instructs David to take a shoe lace and tie it six inches down from his belly button, and to make sure his face is wiped clean. I continue to just keep praying and telling this lil boy to LIVE. I then started to deliver his placenta . the operator told dave to set it on another clean towel. Then the ambulance arrives they check him he's still breathing they cut his cord and they put a tiny hat on him and a tin foil blanket and two other blankets. And once we are In the ambulance they have him doing some skin to skin . I'm terrified just keeping hoping he keeps breathing. He's holding my finger with his tiny hand and giving my finger a good strong little grip.
We are rushed to the nearest hospital . we get in they tell me a team from Albany med is coming to take him. They take from me to get him stabilized in Saratoga hospital.
This little man is still BREATHING. And crying. they get me in to exam and press on my uterus and clean me up.
He's stable and apparently being feisty for them urinating on them and even fighting them to , while put all his tubes on him and run tests . he was on room air. They tell me he's in the 95th % for his gestation 26+6. They do a ton of tests everything came out well. Tons of drs come in, nurses , people from Albany med that have just arrived to give us the over whelming details. Albany med switches him to their equipment and prepares him for transfer. They bring him in to see me before he heads out to albany med,on this long stretcher filled with a tiny little him and a billion machines . He's still on room air at this point . So they are rushing him off to the best nicu in NY.
At this point I just crashed . I wake up to my loved ones beside me . I call Albany med to get an update. They now have him on some oxygen . he's still stable breathing his numbers are good he has a couple bruises from his Very dramatic entrance. He's got some adema they say it was from my iv fluids I recently had.He's on photo therapy. He's doing as well as can be and better then expected. So I wait to be discharged so can rush off to visit him.
I'm discharged same day after 6 pm my sister has our daughter and. So we rush off to see him, He's still doing the same. Albany med is amazing the nicu is incredible... Not that ive ever been in one before.....Everything is new to me all the medical terminology. I've never stepped foot in a nicu . Each baby has their own room with a pull out bed couch. a huge set up for him with all the machines in the world a desk and chair for the people working on him a sink to wash up. his own little closet. A ronald McDonald house room on the nicu floor. Little man looks like he's got his own suite. I feel as secure as I can be that he's in good hands.
But I've also never felt so helpless in my life so broken so mad at myself for not telling that resident to at least please check me. I'm so so grateful he's ALIVE .... But I also feel like I failed him. And I know that he may be OK now but tomorrow is another story.
I'm grateful for technology and I have hope. But all the potential doom and gloom they warn you about is so close behind that hope.
I do wanna believe he'll be my miracle. That we'll be able to tell Leo one day about his miraculous and INSANE entrance into this world on 11/16/2018.
( Baby Leos Albany Medical Center NICU stay)
Leo had an amazing "honeymoon phase" that lasted 3 weeks he even made it to cpap.Leo then on December 5 became anemic due to routine blood work. He had his first blood transfusion then on the 6th he came down with NEC ( Necrotizing Enterocolitis) That was from the blood transfusion. Leo got sick fast! He got intubated and put on a jet ventilator. He got better fast and HATED the intubation tube so he managed to excubate himself but they had to re intubate him cause he had to stay that way while being on antibiotics and fasted for the 14 days but when ever he was awake or not sedated he'd move around and try to rip at all his tubes ( this tiny man's a fighter) he got about two more blood transfusions which they had to fast him for 24 hours. Our poor sweet boy.
So they then on the 14th of December tried to extubate him. But for some reason he wasn't doing well breathing with out the tube so they put another one in. They did however notice that it wasn't easy to put back in. so weeks went on and he kept having random destats/ bronchial attacks where all his levels and numbers would go great to horrible. They didn't know why they figured it was something that was in his air way. But wanted to wait for the ENT Specialist to see him (ear nose and throat specialist) so he did and he went in and he took Leo to the OR to use a scope to see down in his airway and saw scar tissue from the tube . so they want to put him on dexamethasone to help make the tissue smaller. Leo had another blood transfusion due to routine blood work on the 8th of January So on the 8th of January we also had a meeting with his Dr and the ENT Specialist and his nurse and a couple others to map out a plan cause he's at the time he was 34 weeks . So we talked about his options at the time to try and shrink his scar tissue with the steroids ( dexamethasone) and if that didn't work a possible tracheotomy if that didn't work. So we had them put Leo on the dexamethasone ( a steriod) to help him the tissue go down and so he could hopefully be extubated on the 17th of January. So a couple days went by and by January 10th he extubated himself yet AGAIN while awake our strong boy. They noticed it was really hard to get that intubation tube back in yet again .Then as the day went on he had kept on having these random horrible attacks where his heart rate would go from 150s to 30 and his oxygen would go from 21 room air to 100% oxygen. The Drs And ENT Dr took him back to the OR for another scoping to see just what could be blocking his air passage, as they went deeper the doctors spotted a lower blockage in Leo's trachea thinking it was granulated tissue the doctors decided to try and work through what they thought could be an easy breakthrough was actually a little tougher then expected, in this process the ENT Dr was able to take some of the tissue out to send it to a lab for a biopsy and noticed it was more of jelly like consistency rather then the typical substance of granulated tissue which should have been weaker. In the process of this scoping the ENT had felt as though he made a error in possibly making a punctured or tear to Leo's trachea, The Dr and the ENT Dr told us he had a 70% chance of going to Boston MA (Boston Children's Hospital) The BEST childrens Hospital in the US ( We were TERRIFIED) in Boston they have better drs an a very Important machine called ecmo (extracorporeal membrane oxygenation) basically and out side of the human body Iron lung and heart so they can work on his trachea .. They then got him stable and we left for the night we got home around 7:00 pm and they called us back at 9 :15 told us Leo was in critical condition and we should come back ASAP! We rush our daughter back to her Grandparents house and we hurry back to Albany Med. We get there and they put a chest tube in and they call Boston. A helicopter comes in and the team works on moving him into Boston's set up till about 4:30 am. The team then takes Leo and myself ( his mother) and takes us to Boston as fast as humanly possible. We get there I'm shaking I'm completely overwhelmed and terrified for Leo. I'm in completely shock I was the definition of worried SICK.
Boston Children's Hospital NICU. They get him in move him get him as stable as possible in a medically induced coma. they scope him .. Sadly The ENT did tear him badly and they did see a HUGE penny sized tear in his Trachea at this point they aren't even worried about the mass/ scar tissue (that the specialists don't even know what it is yet.) They had to put another chest tube in and and IV on his little head. They are now trying to let Leo heal for the next few days or so . if that doesn't work then its possibly ECMO and Surgery. ( which is beyond high risk for him) But as of right now they are weaning off the meds that keep him paralyzed they took the IV out of his head and they are feeding him. We are so greatful for that. Leo has survived so much! Two placenta abruptions. Being born at 26+6 and breathing on his own for over and hour. And ambulance ride. Being at Saratoga hospital (they expected him to be dead on arrival) a transfer to Albany medical center. He survived NEC. 2 trips to the OR . he survived pneumonia from the OR , 5 blood transfusions. Being intubated and extubated over and over and OVER. a helicopter ride and transfer to boston 2 chest tubes more picc lines and IVs and tubes then I can count being Fasted for at LEAST 20 days . He is a SURVIVOR to put it lightly. We pray Boston can help him win this fight.
We tried to do this for the past few months on our own. It's just become to much . Now we need Your help if you can.Our lives have stopped we will being traveling we will have crazy medical bills And unfortunately so many possible unforseen expenses.
He still has so far to go. Anything will help
And if you can't that's okay to thank you for sharing his Journey with us by reading his story