Saturday, February 23, 2008

Alexander Jon's birth story

Adam and I found out we were pregnant in early January 2007. It was a normal pregnancy. When I was 17 weeks pregnant I not so gracefully passed out at church, and made a trip to the hospital, everything seemed to be fine.
Around 22 weeks a routine ultrasound found that there was a cyst on the umbilical cord. This news did not bother me too much, but I decided to go home and Google cysts on cords anyway. (bad idea) The information I read said that most of the time a cyst on the cord is related to some chromosomal abnormality, I was in tears, and full of fear. This is not what I wanted, I could not do this.Because the doctors wanted to monitor the blood flow to Alex, I had routine ultrasounds once a week , and in the last weeks, I had 3D ultrasounds twice a week. I also decided to have an amniocentesis just because I am a need to know kind of girl. Everything was normal! I was filled with joy, and couldn't wait to meet my baby boy. Why didnt they tell me this painful test doesnt detect every problem???? Deep down I knew that there was a problem, but I ignored that since the doctors told me that everything was fine.
On September 7, 2007 a scheduled c-section was to take place, this was my first c-section "the doctors didn't want the cyst which was the size of a baseball to pass the natural way, "in case of rupture" at 12:31 Alex was born, although it felt more like he was ripped from my body. He made one little squeak, then he was grunting, and he was fighting to breath. They immediately took him upstairs, I barely saw him, and had no chance to hold by precious baby boy.Once I had recovered from the c-section I went upstairs to see my son, he was crying, naked, and kept hitting his face on the oxygen hood. They said I couldn't hold him, his O2 was dropping fast, and he was soon on a vent. Not long after they put him on Nitric Oxide, and he was on an oscillator. this is a machine that while intibated makes his body shake. The doctor decided he should be flown to St.Louis because there was a good chance he would need to be on a heart lung bypass machine if he were to make it. He was truly fighting to live.
When the transport team wheeled Alex away from me, for the first time I felt the greatest sadness I have ever known, my heart was broken, and empty. I wept for my older boys who couldn't see their brother, I wept for my baby who had been taken from his warm safe home, now he couldn't find me, he was fighting to live. So as he flew to St.Louis, and the trasport team had him bagged and was breathing for him, I went home. Coming home that first time, and not having Alex in my arms as I walked through the door was one of the hardest parts of all this, tears would come down my face just passing his room, we had it ready for him everything was up and waiting. I had to close his door, and not look at his bed, and swing, the chair that I should be rocking him in just sitting there empty.
Alex arrived in St.Louis, and God had everything in place, the right doctors were in place just for him. Dr. Walentik became Alex's doctor and chekced in on him at times I know she didnt have to. We were surrounded with great care, and just the right nurses and doctors that Alex needed each day. I also know that his primary nurses were a gift from God, they loved Alex, and took care of me too.
In St.Louis the doctors were very concerned for Alex, he had pulmonary hypertension, his heart rate was in the 190's, and his sats were in the 80's. His lungs wee filled with fluid. At 5:00am, 9:00 am, 1:00, and 9:00pm they would poke his heel to get a blood gas, which tests a lot of things, but the big number was his Co2, his was high, usually above 60, and into the 70's. Every few hours they would come in and x-ray him, that scared me because they would ask if I wanted to leave the room to avoid exposure, and he had to lay right under this big machine his little newborn body and be exposed. On the second day in St.Louis the power went off in the NICU, which also meant the oscillator stopped, the amchine that was keeping my son alive stopped. I panicked, screamed, cried. The nurse was right there, bagged him, and breathed for him, but there is something more scary seeing a human breath for your child than a machine.
Alex was on the oscillator for five days, then an angel walked into our lives. Dr.Sadiq who just happens to specialize in newborns with pulmonary hypertension, took Alex off the oscillator and put him on the vent, it was a success! Dr. Sadiq came in and checked on Alex every morning around 7:00. He didn't have to, he wasn't Alex's doctor. I will forever be grateful to Dr. Sadiq for watching out for my Alex. Alex continued to struggle to breath on his own and it was another 3 weeks before he could come off the vent, they tried 3 times to take him off, each time I had to watch him fight for every breath, I could see all his ribs as he would pull hard trying to get enough oxygen into his lungs, and each time I had to watch them insert the breathing tube back into his airway.
This was such a hard time for me, back home Noah was having his first days of kindergarten, and Joel his very first days of preschool. My whole life had been turned upside down. I needed to be there, and I needed to be with Alex.
Alex also had a malrotation that could have resulted in a twist or blockage of his intestines which could have resulted in him losing some or all of his intestine, that was corrected on September 28, It was a major surgery, and once again Dr. Sadiq made this surgery happen before the surgeon left the hospital for another job. We would have had to move to another hospital if Dr. Sadiq had not pushed for the surgery. At Cardinal Glennon they opened up a new NICU unit the day after Alex arrived, Alex had his own private room, and I could stay in it with a bed to sleep on 24/7, we would have lost all this if we would have had to go to another hospital.
After the surgery Alex came off the vent, and stayed off. We were in the hospital for another 3 weeks. A geneticist came to our room, looked Alex all over, very professionally, and with respect told me all the things that were physically wrong with Alex (it was like a bully on the playground) "his ears are malformed, his nose is beaked, his thumbs are angulated, he is hairy, his eyes are too far apart.He was very nice but, its hard to sit there while someone tells you what he says isn't "right" about your beautiful baby. I didnt see it, he looked perfect to me. Now I can look at people and see little imperfections that if they had enough of they would be classified as having a syndrome, the fact is none of us are perfect. He left the room, did some research, and came back with a Rubinstein Taybi Syndrome diagnosis. I ignored him, first of all the first time you hear that, it sounds like some foreign language, I waited for him to leave, and told myself he was fine, afterall he had three genetic tests that all came back normal. It took me months to come to terms with what that doctor had said, I did some research, and even met a wonderful mom and her son with the same syndrome, that is when I knew we would be ok, meeting her is what turned all this around for me.
I have been wrestling with God ever since, but I'm starting to understand everything. God put us in St.Louis so we could have all those wonderful doctors, so I could be with Alex at all times, so he could have the very best care. So I could meet Myssie, and see that our little sweeties are ok, they are not a syndrome, they are real boys and girls. He brought the best therapists to us, Cheri you are a friend, you are in fact family! I have met strangers on line that have gone through much greater things, and have a faith, a strength that I hope to have one day Kenzie, I havent know you long, but I think we share something in all this, I know it wasn't an accident that I stumbled upon your page.
God didn't leave me, there were nights in the NICU, I was alone, my baby was dying, and I couldn't find God. BUT, He never left, He was putting everything into place, and he sat right there by me on the couch when no one else was around. He stood by Alex when I had to go home.
I cant say that I want this, no one wants this for their child, but I know I can do this. I know Alex is going to be fine, and he is going to teach everyone he meets whatever it is that they need to learn about life. Alex will be a life changer for everyone who meets him, and loves him.
I will bless the Lord who guides me; even at night my heart instructs me. I know the Lord is always with me. I will not be shaken, for He is right beside me."- Psalm 16:7-8


Esther said...

"Call to me and I will answer you and show you great and mighty things, fenced in and hidden, which you do not know (do not distinguish and recognize, have knowledge of and understanding)."Jer. 33:3 I agree with you. God will use Alex to show forth His mighty works.

Cindy said...

Jessica, you're very strong, and you and Alex will show God's strength and love through your lives.

Heather Devino said...

Hey Jess...thanks for sharing your story. I'm sorry I wasn't there for you through all of this. You know, you don't hear from a friend for a while and you just assume everything is okay. You say to yourself, "She's got a new baby. She's just busy." I'm so glad you have your blog now so we can stay in touch better. Thanks again for sharing and I'm so glad you have found new friends to support you on this journey. I love you!

Laurie said...


I agree with you that Alex is not a syndrome, he's a precious little boy who is beating the odds every day and I see him as perfect. My heart hurt so much for you as I read how the doctor was talking about your perfect baby. They don't have the eyes and hearts that we mothers do. I love reading about Alex and his progress and if you don't mind, I will be following and commenting from here on out. I am amazed by the strength you have in the Lord for each day. And I am so thankful for you to have met other mothers and babies who are like Alex. And the most wonderful part about this is that they are alive and thriving, each at their own little paces. This is a miracle and I will be praying daily for you to see the miracles each day. I love all children, and Alex is one of them too.

Love, Laurie in Ca.
PS. I am a mom and a grandma.

nola said...

Hi Jess, I loved reading your story and how my heart aches for what you went through. God has our lives in His hands and His promise to never leave us brings great comfort. God always makes a way where there seems to be no way. With love and strength for each new day - God will make a way. He loves you and Alex and your family. I will hold you up in prayer each day.

angie said...

I'm glad that you shared your story. It does help in the "healing" process. I waited until Emma was about 2 before I wrote our story, and reading it still brings those memories back like it was yesterday. It is just SO much to take in! The diagnosis itself is devastating, but medical problems on top of it (Emma had a liver transplant at 7 mths) is just undescribable. Your Alex is a fighter....and so is your family. Our kids are meant to do great things in this world! They are far better teachers than we could every be. The older Emma gets...the more she teaches me that. If I could only see the good in every single person that I meet like she would be great!

Kenzie Stanfield said...


Thank you for sharing this story... to be brave enough to put those raw emotions that can still take you right back to that hospital room just a few months ago. I am so thankful that we can talk, and sweet friend, you are strong! You are walking a path that in many ways I understand, but many ways I don't. As hard as it is, a speaker at MOPS recently talked about remembering that "this is the day, THE MOMENT, that God has made... I WILL rejoice and be glad in it"... some times it is definitely harder than others, but overall we can rejoice in this suffering. Praise the Lord that this life isn't all there is!

Praying for you, for your good days and your hard ones. Loving your sweet family...

In Christ,

Katie said...

Hello! I came across your blog while "blog surfing" as I call it :) Your story touched me. My son Cole, 12 months, was diagnosed at birth with a form of dwarfism called Achondroplasia. I know these are different conditions, but I feel as though the emotions we both feel are the same. I went through the whole not knowing if something was or wasn't wrong with my baby. I will keep Alex in my prayers. I just wanted to say hello :)