Feature Baby: Louie

Finding Out

Right between the first and second trimester, I was given a test to rule out any neuro-tube defects. I got it done, and so far all the test I had were coming back with good news. Well, not this one. "Mrs. Jara, it seems like one or both babies might have Spina Bifida." I was shocked, especially because since I knew I wanted to have children I made sure to take the prenatal pills and take care of my body as much as I could. I was sent for an ultrasound 2 weeks later and, they found the Lemon head shape on Louie, Baby number 2. My boys never changed position while I was carrying them, so I knew who was who. Plus according to the Ultrasound tech, Louie was conceived 24 hours after Joaquin. How do they know, I have no idea. So I am at the hospital, shocked and scared. Since it was pretty early, the OB did not want to diagnose because baby was still small and he had some growing to do. So, I did not own the news.

Choosing Life

I go back around the 20th week, and it was confirmed. Louie has spina bifida, and the following were the words of the OB, "He has spina bifida, may we suggest fetal reduction. His quality of life will not be the greatest and you should consider the reduction. He may not walk, he may need a trach, he may have hydrocephelus, etc." I could not contain my emotions. I mourned my healthy baby for a week, but I made the decision that I was not going to give up on his life, and I was to proceed with the pregnancy. I was asked about the reduction 3 times, and all 3 times I declined. "Please do not ask me again!" I told the doc. I am keeping this baby and i will make sure he has the best life possible.

Mourning

So after a week or so of crying, I got on gears, and researched as much as I can. Every night after I got home from work that was my mission, to educate myself on his condition. I joined a support group on babycenter.com that has been a lifesaver and such an advocate for Spina Bifida along with the reassuring words of a great and educated Spina Bifida Nurse (who lost her job because budgetary reason..DONT GET ME STARTED ON THIS!) Well, when it came time to the visits with the Spina Bifida team, I felt I was empowered! I was able to talk their language and my outlook on the quality of life for my son was immense!!! So I carried on with my pregnancy and prayed for the doctors to be wrong.


Ready or Not Here They Come

Two months later, something unexpected happen. Joaquin and Luis pulled a fast one on me and decided I was going to do things on their terms. They started to alert me they wanted out!! On February 23, I was at work and I felt some contractions. I didn't pay any attention to them since I new it could happen. I went shopping after work, got some popeyes' and went home. Once I got home the contractions got a stronger, I knew that wasn't a good sign but decided t go to the ER anyways to get checked out. I had a feeling it was nothing and I was going to get sent home on bed rest..man was I wrong!! I was 3 cm dilated and i was not going home until these boys were born..........


I was not able to see my boys untiL 24 hours later, I called the NICU to check on them and the first thing the nurse told me is that they are ok and Luis was moving his legs, a lot. I couldn't believe what I was hearing. I was so happy, but he was not out of danger yet. He was scheduled for his back repair the following day. The risk was high, the Docs will "fix" him, but some nerves will run the risk of damage, and his leg mobility would decrease. 4.5 hours later, he was out of his surgery. Everything went fine. I went to see him, and he was moving his legs, again. I have never been so happy in my life, I gave God his praises and thanked him for really taking care of both my boys. A month later, he had his shunt surgery, he did have mild hydrocephelus; but once again, the Docs "fixed" my baby. One thing did happen that kinda scared the beejesus out of me. Luis developed dysphagia. Because of multiple surgeries and the intubating, his throat muscles got a bit weak. When he ate, he aspirated therefore he would choke up a lot. Since I had informed myself about Spina Bifida, the eating issues really got me scared and I was a wreck. Thankfully, after a swallow study, Docs determined it was dysphagia, and we thickened his breast milk with cereal, hence the chubby cheeks!

I do not want to say that the NICU stay for my boys was a blur, because I hated leaving them there. But, I know they were better there than with me. My boys, Thanks to GOD, were never in a situation in which they were sick. They were born premature, but complete. They both hit their milestones, got strong and came home. Joaquin did develop a double hernia after he came home, very common for preemies, but had it repaired and has been great since then.

Luis Now

Luis gets physical therapy once a week, developmental therapy and occupational therapy twice a month as soon as Early Intervention finds one and speech therapy to make sure he continues on track with his feedings. He is sitting us on his own now, rolls over, and rolls around all over the living room. All of his doctors are certain he will walk with proper therapy and bracing. We still do not know his level, and I think we are going to leave it at that. We do not want to determine his physical abilities based on a "level" We will know if there are any problems in relation to Spina Bifida as he grows up and start hitting his developmental phases, but to be quite honest, I have a perfect baby. I do have my days in which I am so sad because not one mom wants their children to have any challanges growing up and then I get to thinking about the future and how much he will have to face but, I wil not have had it any other way.The hardest part for me was my pregnancy.My boy will be 1 year old on February, and to me it means so much. I love my boys so much, I can not take it sometimes. God doesn't send just anyone a special needs child, I am glad he choose me and that he gave me beautiful boys, Luis and Joaquin.