Sloan Allen-Leal, 10 months old

 

My name is Sloan Eleana Allen-Leal

I am 10 months old.

I am Imperfectly Perfect.

 

 

Sloan Eleana Allen-Leal was born on June 01, 2018 at 2:27PM. I was so nervous, I have wanted to be a mom for as long as I could remember, and my time was finally here! When Sloan came out, her scream was very quiet, and she was blue, especially her hands. I remember telling the nurses “her hands are blue; her hands are blue” and they kept reassuring me that it was normal for newborns right now and that she would “pink up.” I had a gut feeling that something was not right.

We had one hour alone with Sloan and then all 10 guests came up to meet her. Because I had GD, Sloan’s blood sugar was checked 3 times and all 3 times the results came back low. After everyone left, around 8:00 PM, they had to take Sloan to the NICU to give her some high caloric fluids to help her blood sugar level. By 12:00 AM we hadn’t heard much, so I sent Taylor to check on our baby girl. When he came back, I could immediately tell something was wrong. That gut feeling came right back. I asked what happened and he told me she was sedated and had all these wires and tubes on her. I called the nurse in and said I wanted to see my baby, so she brought the wheel chair and wheeled me to the NICU. When I saw her I lost it. I did not understand what was happening and why it was happening this way. She only needed some fluids, nothing else. My nurse brought me back and told us to try to get some rest. I could not sleep, We still hadn’t heard anything about Sloan and we wanted answers. Soon it was 2:00AM and then at 4:00AM and finally a NICU Dr. came to see us.

He explained that she was sedated and had all these tubes and wires on her because she was fighting the staff and they needed to monitor her. He said a sentence no parents are prepared to hear, “I heard a heart murmur and I want to transfer her to Rady Children’s in San Diego.” [ Rady Children’s was an HOUR and A HALF away from us] At 7:00AM Sloan came back into our room with the transfer team in a plastic box with a ventilator and the wires and tubes all over her.. They explained to us how the transfer would work and had us sign what we needed to sign. Our little girl was on her way. Since I just had a c-section I couldn’t go with Sloan, so Taylor left and followed her to the hospital.

June 02, 2018 Sloan was admitted to Rady Children’s and was diagnosed with Tetralogy of Fallot. Sloan needed a special medication called PGE to keep her PDA open for her to get enough oxygenated blood to her little lungs. I was finally able to get down to Rady’s on June 03, 2018. The nurses, doctors and staff were so amazing. They were able to fill me in on everything that was happening with Sloan. On June 04, 2018 I finally got to hold Sloan again. We were in the Hospital for 32 days. Sloan had her first Open Heart Surgery on June 26th, 2018. Handing over your 3-week-old to medical professionals is one of the hardest things we’ve ever had to do but, Dr Nigro was able to work on her walnut sized heart. He replaced her pulmonary valve, repaired the hole in her heart, closed her PDA and shaved the thickened areas, and opened her arteries. Sloan was ready to go home only 8 days after Open-Heart Surgery! July 04, 2018 we were finally discharged from Rady Children’s.

We have been home for 8 months now. Since being home, Sloan has had a cath procedure to reopen her arteries & 5 echo’s (2 being sedated). We are scheduled for another sedated echo in June and we are monitoring her arteries and leaking of her pulmonary valve. Even though she still has blockage and leaking, you could never tell just by looking at her. Sloan looks and acts like a typical 9-month-old. She is laughing, smiling, eating, crawling and now starting to pick herself up and walk along furniture.

This is not the start I thought we would have had with our first baby. Its been a very crazy start, to say the least, but we are handling it day by day. We are doing everything and anything in our power to make sure Sloan stays as healthy as she can be.

We were more than happy to share our story. Spreading CHD Awareness and showing other CHD Families that there is hope is very meaningful to us. The advice we can give to other CHD Families is that, 1) it is tough and scary but at the end of everything it is all worth the hell you’ve gone through. 2) ASK all of your questions 3) don’t give up 4) stay strong ♡

-Written my mom, Alora

April 2019