In April 2015 we found out we were pregnant after trying for two whole years. Once we found out we were ecstatic! We were so excited that we just told our family and closest friends. We did not want to jinx it, but I didn’t want to have a miscarriage. Once June came we told everyone on Facebook that we were pregnant with a little video that we posted.

In October I found out that I had digestible diabetes so they made me go for a ultrasound. The ultrasound showed I had very little fluid, so Kingston hospital transfer me to Vassar hospital, who said we were OK, I still have fluid in there so come back in a week. That next week on November 5, 2015 I went back and had no more fluid. I had Leah on November 5, 2015, at 6:54 PM via emergency C-section. Craig and I were happy that we finally had our baby here! On the table when they were doing a C-section I heard the cry of Leah; I was so happy to hear that voice, to hear her cry, because before the C-section the nicu team came in and said most preemie babies don’t cry, to not be scared when you don’t hear a cry. I heard the cry and I was so happy and so proud, and then they came over with her after they cleaned her up and they said the baby doesn’t have a left ear and they didn’t know whether or not Leah was a boy or girl! Leah was born with one hole — she has a a vagina but there is no opening, which we didn’t find out until later. Mind you, I’m on the table because I had a C-section, cut open, and they’re telling me this about my baby. I was trying to keep my cool but I cried.

Not only that stuff but when I was in the recovery room they told me there was something wrong with her heart. I told Craig to make make sure she’s OK. The doctor came back in and said that they will have to transfer her to Albany med. I was so sad because the reason why we chose Vassor because they had a nicu team and we didn’t have to be far from my daughter. They did let me see her; I made sure before they took her we got to see her. I saw her for a few seconds in the c-section room. They opened the little case called a transporter box. She looked like a little doll in the box. I got to touch her hand… I finally got to touch my baby and it felt good.

Craig and my parents went to Albany med while my sister stayed with me. I couldn’t stop crying. I have never been so scared in my whole life. This was supposed to be a happy time, but it wasn’t, it was a horrific thing to experience. Craig didn’t sleep for over 24 hours even though my parents tried and the nurses tried. While I was in Vassor trying to break out of the hospital, Craig was in Albany letting them do tests on Leah. They found one ovary and one kidney and the kidney had a cyst on it. Since they found an ovary, they declared Leah was a girl. They found 3 things wrong with Leah’s heart. VSD, ASD, and her artery to the left lung was very narrow. Craig got a room at the Ronald McDonald house for us. That’s where he slept Friday night; in fact, he didn’t get to the house until 12am and went back by 5am so he wouldn’t miss the doctors.

Saturday morning I broke out of Vassor hospital with the help of my parents. They drove me to target to get my medication and my breast pump. From there we were off to Albany. While driving to Albany med Craig sent me a text that he was holding Leah! I was jealous that he got to hold her first but happy that she was able to be held. When I got there we took a family photo. I couldn’t stop crying — I finally held my own baby! She came out of me, I grew her in my body and here she is in my arms finally. After I held her we talked to the doctors and they weren’t concerned with the cysts on her kidneys, but me being pro-active I asked everything (so did Craig). We asked about Dialysis; they said we weren’t there yet so don’t worry about. When we finally knew Leah wasn’t putting out urine they said, okay now we have to place a catheter in her, and we have to think of quality of life and not expanded life, what do Craig and I want… I feel we asked all the right questions and we decided that dialysis was the right choice.

So Leah had her first surgery and they placed a catheter in her — it’s called PD which stands for Peritoneal dialysis. At first they were like, we have to get that size catheter in because they didn’t have it. We asked if we should go to boston and the renal doctor said “ohh no I was a fellow in Boston I know what I am doing” so Craig and I didn’t push it because we wanted to stay close to home. We felt good, we had hope finally. Every night we left Leah we did 5 prayers and the next morning we would do the St. Jude’s prayer for her. After we prayed and left the hospital, Craig and I would pray for her again before we went to bed. So we finally felt at ease when the doctor said that she knew what she was doing…

Leah had her surgery and it went great!! They should’ve waited, though, to start with PD treatment, but they didn’t wait more than a day. Leah did great! She was responding to treatment… but then two days later her catheter site started and was wet. So we stopped for a day, tried again, and the same thing happened. Then they put surgical glue in — yep they did — and we tried again. It didn’t work. Finally the renal doctor and her nicu doctor told Craig and me that we need a family meeting…

In this family meeting they told Craig and me that the PD wasn’t working and there was nothing they caould do besides hemodialysis, and that’s a 50/50 chance. They will put an IV catheter in Leah’s neck and she will get treatment like that, but for this we had to go to Boston… or we had the option to terminate her life by taking her home and she wouldn’t receive treatment and her electrolytes would stop her heart. Craig and I couldn’t believe what we were hearing! He threw the tissue box and pen that was by him — we knew we couldn’t lose her. We tried for so long to have her here, and here she was and they want us to make her disappear because of quality of life?! How dare they!!!! The very next day we were transferred to Boston we were going to do everything in our power to keep her here.

Boston– thank God for Boston!!! I mean the nicu was different — 24 babies to one area and in Albany we had our own room. It was different, but Boston found out Leah had two ovaries, which are on the left side of her two kidneys (which are on the right side), but the one kidney was so small that her body was going absorb it and the other had a cyst and that’s why it wasn’t working. They think she will be able to have babies when she gets older! They also found out that there is no bladder, so during transplant they will build one for her with her intestines. She has an ear canal in her left ear, she just needs to be tested to see if she can hear from that ear, but she will need to be sedated for that so it’s not on our important list. Boston put a new catheter in so Leah has had two surgeries for a catheter, but at least in Boston it worked. I asked myself why it didn’t work before, why didn’t we make them transfer us right away… but it was the journey we had to take for Leah. Albany put a big catheter in Leah. We don’t know why it leaked, but it could be because of that. Craig and I are so grateful for all the nurses we meet through this — they helped us heal and take this by the horns!
Right before Leah’s 3 month birthday, we were discharged on Jan 29, 2016, to take Leah home.

Updates:

Leah’s first year of life has been so amazing for us! She started sitting by December 2016.

January 5, 2017, Leah had open heart surgery at Boston Children’s hospital. We decided on this to fix all her heart problems because she had to be on the bypass machine. We were afraid that if we did this after transplant we could jeopardize her new kidney, which we didn’t want to happen. She was taken in around 1:30pm and she was out by 6:00pm. They put her on a bypass machine to work on VSD and ASD, and they also fixed her left artery that was attached to the left lung, they made that bigger. We were discharged after 5 days in the hospital for open heart surgery.

While Leah was recovering in the hospital from open heart surgery, my husband Leah’s daddy was tested further by Bringham and Women Center. He finally went in for his CAT scan, ultrasounds, did all his urine tests, did his psych test on why he wanted to donate his kidne — and passed!

Two weeks after Leah’s heart surgery we got the call that Craig was able to donate his kidney Leah!!!!!

Leah has to be 10 kilos, which is 22 lbs !!!! 63 cm which we are at !!!!! We are so close to transplant.

On November 6, 2017, Leah had 3 seizures. Craig and I knew something was wrong with Leah the morning after her birthday. She wouldn’t stop crying all that night after we cut cake at grandma and grandpa’s house … we drove her to Kingston hospital and from there she was driven by ambulance to Albany med. Leah’s o2 was dipping so they put her on a ventilator. 4 days later Leah had emergency surgery on her small intestines because her intestines poked a hole in her hernia and her hernia was strangling the intestines. The same surgeon who put her first catheter in came in and I flipped out — he was not going to touch my daughter again and screw up! They said they had no time to bring us to Boston and that we needed to do the surgery now. We finally settled on the chief resident to do the surgery and she came out fine. We got transferred to Boston the very next day. We spent two months in total at both hospitals.

Leah was supposed to have her transplant on February 7, 2019, but that got cancelled because the donor had an antibody from the past. They were a match now, but in the past they weren’t… so was my husband — he wasn’t a match in the past but is now, so we all decided it would be best if Leah’s dad donated to her. We have a new date in May.

well may came and went and Leah didn’t get her transplant  because she came down with the flu 

then July came and Leah was suppose to have her transplant but then leahs team saw a number that was concerning so they canceled transplant once again !!!! Two days before 

then two weeks later Leah had a bowl obstruction and her pd catheter wasn’t working . I think she scared the whole team bc after that admission they gave us a date of July 23 a Tuesday ! They never do transplant on a Tuesday but in this case they did !!!!

leah got her daddy’s kidney on July 23 2019

During surgery they took her vagina off her bladder and sewd it up. They also did a uretha transplant which was   Successful   Attached her kidney and she was out . Daddy is also doing well he had a little tougher time but is doing well now 

we are struggling with leahs blood pressure right now but I’m sure we will get her on trac soon

leah finally went home after a month in boston <3 leah  has been stable since her transplant . 

UPDATE:

on 6/15  we headed to boston to do a kidney biposey on leah . her creatine levels were rising slightly so we going to up her steroid dose. she was only taking 1 ml so now she will be taking 1.5 mls now  

sometime in july  or  auguest we will be having surgery for leah at boston childrens hosiptal for leah can have a dry diaper for when she starts school and she will also get a gtube !!!! leahs kidney also shows grade   5 reflux so they will also be fixing that for her !

 

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Tank you all for the love and support!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.