On the night Evan was born, I went to bed at midnight feeling like he would never be born. At 2:30 am I woke up to go to the bathroom and my water broke. That never happens to me, and at that point I was worried the contractions were going to hurt more. We got the kids up, packed, showered etc and left about 45 minutes later to make the 45 minute drive to the hospital. The contractions just kept getting worse and all the while I'm just thinking it is because I don't have the cushion of the water. Fortunately we had my in-laws meet us at the hospital because that was the longest, most painful, nerve wracking 45 minutes of my life- except for the nine that were to follow our arrival.
We arrived at 4:00 am. While my hubby handed over the other kids I made my way to labor and delivery only to realize at that moment I had to push. It was very surreal for the next 5-7 minutes and hard describe other than a lot of chaos and yelling. But at 4:09 am my little guy came into this world with or without the doctors help or permission! Looking back now and the hours that were to follow, I wouldn't have had it any other way! He may not have survived a longer delivery.
He was perfect and sweet and tiny. Not a thing in the world seemed wrong and right away he was hungry. After a brief glance over, they let me feed him for an hour while the caught up with all the paperwork we missed in the excitement. Then it was time for him to go get checked out and cleaned up. This was the first time that my husband wasn't invited to go to the nursery with our baby. We had never delivered at that hospital before so we thought it was just how they did it.
Minutes, hours ticked by as we waited in our room to get to see our little guy, but no one came. About the time we decided to inquire, a nurse came in. I was in the bathroom, she didn't even wait for me. I overheard her say "your baby is really sick." At that point I'm moving as fast as a woman can (who just gave birth). The nurse began to tell us about what had transpired in the 4-5 hours that we hadn't seen our son.
Upon arriving in the nursery, they found Evan's temperature to only be 95F. This prompted them to begin a series of test including a blood sugar test. Evan's blood sugar was only 4. They checked it again thinking it was a bad read. The second test only read 5. He was lethargic and unresponsive.
Normal, fasting blood sugar should be between 70-100. The nurses and doctors had never experienced such a low before. In fact our OB commented "dead people have a blood sugar greater than 5". They all could at least agree that it was low and they took measures to stabilize him.
He spent the next 3 days being tested for different bacterias and viruses, received antibiotics, had an EKG, had some blood work done etc. Despite all they did, with what they knew, he could not maintain his body temp or blood sugar between feedings. At one point, to help him conserve energy, we weren't allowed to even touch him.
This was all so scary to me. The nurse just kept telling me he was just being lazy and was too worn out from the"precipitous" birth and he would be fine. Eventually he appeared to be and we went home.
The weeks and months that followed seemed 'normal' at least that is what I was told all his symptoms and behaviors were. Evan ate veraciously every 1 1/2 to 2 hours 24 hrs a day, he was cranky, he vomited a lot, he had bowel movements that looked like green snot- not normal 'nursing poo' that was very acidic, he was very sweaty all the time and at about 5 months I noticed he wasn't growing.
I got all the standard answers: 'He's just growing', 'its your milk', 'he has reflux', 'he's just small'. His six month check up he had RSV and all the other concerns I had got sent to the back burner. I had resolved that when he was well, if there were no changes, I was pressing the issue. I didn't want to seem like the paranoid mom but I knew something wasn't right. I thought he had Celiac's disease or other similar intolerance and his intestines were inflamed. At no time was the idea to re-check his blood sugar ever considered.
The ER visit resulted in blood work, ultrasound, and lots of other tests that said- hes got a big liver but we don't know why. We left there with a referral to a liver specialist.
With indicative blood work and ultrasound he then was scheduled for a liver biopsy and hospital stay for stabilization. The day of the liver biopsy will stick with me as a lesson learned in being a parent who is prepared and ready to advocate for their child's care. Upon arrival it became very clear that the surgical prep team was unaware of the condition he was being treated for. He was scheduled to fast for six hours and they had no clue that he would have problem with that. Just before he went in for the procedure his blood sugar had dropped to 26 and we was getting really lethargic. Everyone is scrambling, the IV isn't working and that is finally when they were told he needed to be on a constant drip of dextrose. It was horrible and I wish I wouldn't have been so trusting.
In those next few days we met our geneticist, dietitian and a number of other nurses and counsellors. We left the hospital with a nasogastric (NG) tube that was fed by a continuous feeding pump and a million questions. That was horrible! He was learning to crawl, he hated having it put in or changed. I hated everything about it. Always worrying about if it was full, blocked, leaking in the night etc..
It was better than the alternative but so stressful and tiring.
Finally in August they decided He was ready for a gastrostomy (GTUBE) and cornstarch treatments.
This is where this blog begins. I hope that our experience will help others find comfort in numbers even though our GSD numbers can be few.
