The doctors had not dealt with neonatal MG very often. I'm sure some were seeing their first case. They wanted to see if his condition could have been due to being a baby of a diabetic, which apparently has some of the same (milder) symptoms of neonatal MG. I knew better. I should have pushed. He was so floppy. No muscle tone. You know how most babies clench their little fists and wave their arms and kick their little legs? Jacob just lay there ind of splayed open like a little frog. But part of me wanted so desperately to believe that it WAS just the infant of a diabetic thing, and that in 5 days when I went home he would come with me. It was not to be.
For 5 days, I went to the NICU every 3 hours, to feed Jacob through his feeding tube. We changed his diaper. I was too weak to stand or walk, so I was still in a wheelchair, and on oxygen 24/7. Jacob looked so tiny, yet SO huge! Every other baby in the NICU was like 1 - 3 pounds, fighting for their tiny little lives. My hulk was 8.5, and 21 inches long! They had him in a bigger bed, because the little isolets were just too small!
I was exhausted, but nothing was going to stop me from being there every 3 hours to hold my son. I was getting very little sleep, and my anxiety was through the roof. Doug had to stay in my room overnight because I would have panic attack after panic attack. I would have parked in the NICU if I was strong enough to get there by myself. But no one would take me because of my condition, and I was supposed to be resting. Fat chance.
I was discharged on Saturday, August 19. Without my son. Just before we left, Jacob's main doctor came into my room and told me they were putting Jacob on a C-PAP machine (Continuous Positive Airway Pressure) to help him breathe. His carbon dioxide levels were still too high. I cried.
As soon as we got home, the phone rang. It was Jacob's doctor again. The C-PAP wasn't working, so they put him on a ventilator. I cried harder.
The nights were the worst, because during the day, my mom would go up every morning and sit with Jacob, and sing to him. Doug and I would go up late morning, early afternoon, and stay til evening. Then we would go home, and try to go to bed.
My arms were empty, my belly was empty....I had just gone through this 40 week ordeal, and I had nothing to show for it. The ache in my heart was almost unbearable. We checked on Jacob every night around midnight by calling the NICU. I was healing from a C-section, still super-weak from the MG, and this was my life.
When I saw Jacob on the vent, I just bawled. I KNEW what it felt like, having been on a vent in the hospital in 2000 for several weeks. I KNEW it wasn't comfortable. I KNEW it was irritating and hurt, and it was hard to get comfortable. The entire time he was on the vent, I was the only one to hold him. I was not going to let him not be held just because he was on a vent. He had so little human contact, really....My mom was still going up every morning, God bless her. But I was the only one to hold him. I cried every day.
Finally they decided to do something called IVIG. I didn't want them to, because it didn't work my MY M.G., and I figured if Jacob had MY anitbodies, it wouldn't work for him either. And not only did it not work for me, it gave me a fever, flu-like symptoms and a migraine. Doug and I talked about it, and he thought we should try it. The doctors said it could very likely work for him, even if it didn't work for me. I finally gave in.
They got an IV in his foot, but it didn't stay put past the first day. IVIG is a 3-4 day treatment. So they had to put an IV in his little forehead. I have never been so sad in my whole life. I had to leave the room, or I probably would have killed someone. And the worst part of Jacob being on the vent? When he cried, which he RARELY did, they was no sound. You just saw this wrinkly little face, the little body tensing, but no sound. It was HORRIBLE! I truly thought my heart would break.
Most of Jacob's baby pictures are in Creative Memories albums, so I scanned a page so you can see my poor little boy. This was the MAIN reason I didn't want to birth my own child. I knew this could happen, but I NEVER envisioned it this bad. No one did. This was pretty much worst case scenario, once again.
We put Bible verses all around Jacob's crib, and prayed for him every day. Many of our friends and family were praying as well. The ONLY thing that kept me sane was that I KNEW Jacob would get better. All the other parents in the NICU didn't KNOW that. Every day Jacob was getting a little stronger, because every day was one day closer to when my antibodies would completely be out of his system.
The IVIG days were the worst. It did start improving after that. He went on and off the vent like 3 times...they thought he was strong enough, put him on the C-PAP (which he HATED because he had to wear this knit cap and have tubes blowing air up his nose. I've been on a C-PAP too, and they are miserable!
About 10 days before he went home, he was put in a big boy crib. It was metal, and small, but it was HUGE compared to the teeny isolets with the teeny babies in there. It was just tragic seeing those itty bitty babies...not knowing if they would make it or not. Sadness permeated my life at that time. One day when we got there Jacob was in a bright yellow bean bag, in his crib, batting at his mobile. It was one of the best sights I had ever seen! I remember the first time he kicked off his blanket! I was SO excited, because that meant he was getting stronger!
Little by little Jacob improved, and was able to get off the vent, and be on oxygen only. He still had the feeding tube, because he wasn't taking all of his feedings by bottle yet. I wasn't nursing because I had to get right back on my CellCept so I would be able to take care of this child! Eventually he was weaned off the oxygen. The only thing keeping him there was feeding. I was like, I want to take my baby HOME!!! I can tube feed him at home...everything else was fine. I had to really push to get him home, but I thought, they have had him long enough!!
So FINALLY, after 35 days, the day that Jacob was 5 weeks old, we got to take him home. That was probably the happiest day of my life. It was finally over.
Once we got Jacob home he thrived. He had his 6 week checkup on the 26th, and we pulled the feeding tube out that day. He was taking 90% of his feedings by bottle, and although it wasn't easy to feed him, we both felt like the tube was just getting in the way.
At his 6 week checkup, his pediatrician, who hadn't seen him yet (because he wasn't affiliated with Jacob's birth hospital) read through his chart before he came in. After he examined Jacob, he told us that unless he had read that chart, he never would have known that Jacob wasn't just a normal, healthy six week old baby. Hallelujah!
Jacob was a bit behind physically...His upper body remained week for several months. But he was healthy, and whole, and perfect. He was SUCH a good baby. He only cried when he was tired, hungry or needed his diaper changed. He NEVER cried just to cry. He never fussed. He was amazing.
And he still is. I thank God every day for my wonderful gift. This priceless child named Jacob that came into my life and changed it forever. Of course I wish I could have spared him what he went though, but if we had to go through it to get my Jacob, it was worth it. He is the light of my life. Mommy loves you Jacob. More than you could ever know.