Yesterday was Vincent's birthday. I can hardly believe that my baby is five! Seriously where did the time go? Vinny is my middle baby and a miracle child too. You see when he was 2 weeks old (exactly) he was admitted to the hospital with a high fever almost 104 degrees Fahrenheit and after a urine test, blood draw and spinal tap we learned he had septis or as the nice dr's explained to me he had become sick on his own waste. By the time we got to the hospital the infection had spread to his blood and we spent the next four days in peds getting IV antibiotics that had to be given every 8 hours...precisely...over an entire hour.
They discharged us with a pic line that went from his ankle to his heart and Husband and I had to administer IV antibiotics for him for 14 days. The poor thing was so sick, his immune system compromised that he developed thrush, a series of ear infections and then at 6 weeks he scared us again with a high fever and back to the ER we went. Fortunately he had only developed an viral upper respiratory infection so no more drugs that time, but they watched him for a day and sent us home.
I wish I could say that this was the worst part but it was only the beginning. My 8 pound 12 ounce boy wasn't even 9.5 pounds at 2 months. Soon it became obvious that something was wrong. By four months of age we were going into the dr's office for weight checks every week. We were feeding him 40+ ounce of formula a day and no. weight. gain. It was horrible.
He was constantly sick. Totally lethargic sleeping 14-18 hours a day. Diarrhea in every. single. diaper. People accused us of starving him. People were afraid that we were making him sick. I was watching my baby slowly slip lower and lower on the growth chart. If he got a cold in the morning I could see he lost weight by lunchtime. He had no fat, no reserves and was one sick baby. A sick baby that only I, Husband and the Doctor knew about.
Up until Vincent was born I always wondered what I would do if my child got sick and it seemed like nothing was working. Would I just stand by and let the medical doctors do their practice thing or would I fight? Would I try anything? What would my child's illness stir within me? I knew in my heart of heart's despite crippling blows to my ego as a 'good' mother that I was a WONDERFUL momma and the momma God designed for Vincent. I knew he was sick, Husband knew he was sick, the Dr knew something was wrong. So we fought.
At six months I went into one of our weight check appointments and just told the Dr it was time for reinforcements. We needed specialists. I left with two referrals one to the cardiologist and one to the Feeding and Growth Clinic. The first appointment was with the cardiologist which was total bust, well not completely we were able to rule out heart problems so that was good. So onto the Feeding and Growth clinic.
I went into the appointment uncertain. I had heard both good and bad reviews from people, but they were my last hope. I saw a speech therapist and then a dietitian and after explaining Vinny's medical history...lack of growth, continual illness and my unwavering conviction that something was wrong with my son the dietitian whom I swear was an angel looked right at me and said "We want to admit him to the hospital." I'm not a crying person so I didn't burst into tears but I wanted to hug her.
The dietitian went on to explain that he wasn't at death's door but that they were admitting him as a Failure to Thrive patient. She kindly explained that this was in no way a reflection on me as a parent because I was being a great mom by seeking help for my child, for fighting for him. They had lots of tests they needed to run and while I could do it outpatient it would take months to get everything coordinated.
We spent a week in the hospital. We saw every specialist you could think of and therapists too. He was poked, prodded and scanned. The hardest test by far was the one for Cystic Fibrosis...not because it was a difficult test but because I knew what the prognosis was...incurable. We finally left with the diagnosis of Mild Malabsorption and he was put on a new formula that was 'partially digested' really it means that they had separated the proteins and enzymes and whatnot so that it was absorbed into the bloodstream from the stomach and not just the small & large intestine. He gained weight and we left cautiously optimistic.
We had a decent summer. He was growing s-l-o-w-l-y. Then just before September we hit a bump...Vinny lost weight. The dr called Vinny's Gastrointerologist aka gut doctor. We saw our doc Friday morning and I got a call from the gut doctor's office that afternoon for an appointment on Monday! That is crazy fast scheduling, not sure what our doc said, not sure I want to know, but I'm so glad he did.
We had a short consult, scheduled an Upper GI biopsy to check for Celiac Disease. The doctor wasn't super encouraging but at least he was willing to do more tests.
Just before his first birthday I went into to find out the results of the biopsy and Praise the Lord he had Celiac! Now it might sound cruel to be thankful your child has a disease but when you're fearful of cancer, Crohn's or other incurable illness. Celiac isn't curable now but it is managed by a gluten free diet...a diet change that saves your life is better than cancer and infinitely better than not knowing. Honestly, if the doctor said nothing was wrong I wasn't sure how I was going to continue to go grocery shopping. Sooner or later somebody was going to call CPS on us. An answer is what we needed.
Life is infinitely better with this crazy boy, and if it's okay to admit it I think 5 is the best age for boys. They're still young enough to think you'r the best but big enough to take care of basic needs. I can't imagine my life without him and I'm so fortunate to live in an age where a Momma can fight for her baby's health and find out the problem.
So happy birthday my little man with a big heart! Momma loves you with all of hers!