Phill and I have had a long, tiring journey to becoming parents. Our first pregnancy ended tragically. We lost our little girl Elisabeth, the memory of whom we do not share with many people, who was born before she was viable to live outside the womb. It took us another two and half years to conceive Asher Ben. We feel incredibly blessed to have our little boy, to have the incredible gift of his childhood, to be able to watch him grow up.
Asher's Pregnancy: Asher's pregnancy was fraught with complications. Where to start? Well lets start with the least pleasant. Morning sickness. Or so we thought! Most women get morning sickness. However a small amount of woman suffer from a condition called Hyperemesis Gravardium. Basically a severe form of morning sickness that can result in dangerous pregnancy complications. I was so sick with Asher that I could not work, I could barely function, I was miserable! I could not eat anything. I would wonder up and down the grocery aisles every night crying, because there wasn't one thing in the store I could imagine eating. My food aversions were so strong that the smell of other people cooking in our apartment complex would cause me to vomit in our apartment. I was weighed two days before I delivered Asher, I was 25lbs less that day than the day that I got married.
I also had severe gestational diabetes. Or so we thought. It was odd though, I would get really high blood sugars that would spike and then go so low I would pass out. When I was 33 weeks pregnant I fainted and hit my mouth against the cement. I am now sporting 6 capped teeth in the front of my mouth! Later the connection was made that my placenta stopped working and was interfering with insulin production.
At 32 weeks gestation I was diagnosed with IUGR. Asher was not delivered right away because he was still a good size. However we were prepared to have a 5lb baby. We were in fact thrilled when he came out at 6 lbs!
Toward the end of my pregnancy I was so exhausted. I was reassured many times that it was normal, but I would tell people, that I felt like I was dying. Sometimes I would have severe pain right under my rib cage. It was explained away as acid reflux.
However, Asher was born. He was healthy. We took him home. And 4 weeks later, I collapsed at home. The pain under my rib had progressively been getting worse and worse. I was transported by ambulance to a rinky dink community hospital who diagnosed the issue as gallstones and removed my gall bladder. I was in the hospital for three days and then released. I was home for exactly 24 hours. Just enough time to hire a nanny. That night, I was rushed back to the hospital in so much pain I couldn't catch my breath. I was given tons of pain medication...I don't really remember the next day. But I do remember my husband fighting with the hospital, saying absolutely not to exploratory surgery, and then waking up at Beth Israel Hospital in Boston.
Thank God for Beth Israel, because of them, I am here watching my little boy grow up! Within hours of being admitted to BI, I was diagnosed with Acute Autoimmune Hepatitis induced by pregnancy. I was in liver failure and my kidneys were starting to shut down. I had a liver team, was immediately put on magnesium and blood thinners, and settled down for a week plus of life in the ICU. Not fun. I didn't get to see Asher once.
I had several xrays, CT scans, and MRI's while I was there. It was discover by high contrast MRI that I have three medium sized lesions on my liver called FNH. While not cancerous, they grow when exposed to hormones and steroids....read they grow during pregnancy, and when they get too large, they can rupture causing internal bleeding and well death. Awesome.
Asher's Health: Two weeks after I was released from the hospital Asher suffered a severe allergic reaction to formula that is supposed to be hypoallergenic. I was home alone, without cell phone reception. And my baby wasn't breathing. I thought at first he had choked, but later learned he was suffering from anaphylaxis. I drove with my 9-10 week old, while still not cleared to drive, out of his carseat in my lap to the hospital. I met Phill there, he was given medicine and transferred to Tufts Floating Hopsital for Children.
We are very lucky to have the oncall docters who were there when he was admitted. Both specialists ran a clinic for his disorder...a rare disorder that was categorized under the umbrella of Primary Immuno Deficiency. Further defined as an Acute Multiple Protein Allergy. We have since learned that he also has a condition called Eosiniphilic Esophogitis. This is a condition that my husband also has, not as severe as Asher, but we are now learning is a genetic condition passed from father to son. Nice.
Asher lives off of mostly medical food. Although he is now able to eat turkey, rice, and most vegetables, he is not able to get enough calories to thrive, so he is still on Neocate, an amino based formula and will be until he is at least 5.
Asher's current allergy list is: Dairy, Beef, Wheat, Soy, Casein, Peanuts, Tree Nuts, Shell Fish, Preservatives, Artificial Dyes.
Several Appts with specialist for Asher and for Myself have lead us down a new road, thinking about how family is built and how we will complete ours. Warning, this is going to get messy!
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