Mg and Pregnancy-Part Five; The NICU

The moment I held my baby for the first time....time stood still. Nothing else mattered. It's as if the world faded away, and it was just me, and just him; this astounding little being that I had grown in my womb. I was overwhelmed with joy. Jacob Douglas Sweeris. He was mine. And I was his. Forever.

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.

Mg and Pregnancy-Part Four; Birth and Aftermath

So we check in at 0'dark thirty and get to a room. They try Cytotek one last time, as I have dilated to one. At noon, they started pitocin, because there was no further reaction from the Cytotek. They started at a fairly low dose, and increased it by 4 units every hour. I think I was up to 32, which is quite high if I remember correctly. I was having contractions, but nothing to write home about. No further dilation, no effacing, nothing.

At 6 PM they stopped the pit so I could eat supper. Then at 10PM, they started it up again. If you've never had a baby, imagine trying to sleep with a baby heartbeat monitor wrapped around your belly, plus another wrap to measure any contractions, and being on pitocin (a medicine to stimulate labor) all. night.long. Needless to say, I did not sleep. No sleep + MG = nothing good.

Tuesday, August 15 arrives. They check me again in the morning. Nada. They crank up the pit again. At about 10:30 they manage to break my water, even though I was still only dilated to one. Now THAT is a bizarre feeling.

I continued to have contractions, and about 1:00-1:30 I got my epidural. We were a bit concerned about having an epi, but the docs recommended it as the safest way for me, because if I had to deal with the pain on top of the stress, the MG would flare like crazy and I wouldn't have a prayer of delivering vaginally. It was a little scary, because at first I couldn't move my legs at all...but Doug helped me find a better position and I was okay.

Obviously I'm tired. Borderline exhaustion. My spirits are still pretty good, but I'm fading FAST. At about 2:30, Dr. Lavery came in and checked again. No progress. So I said what are we looking at? He basically said if I started dilating right then, it would probably be 4-6 hours til I was at 10, then a minimum of 3 hours pushing. I looked at my husband, looked at the doc, and said, "I'm done. C-section please." By this time, I was not strong enough to talk. I had to write everything, or whisper.

The anesthesiologist was AMAZING. I was so scared about not being able to breathe, especially with the epidural, in the operating room...and to be awake for it all! So he said he would give me something to knock me out for like 10 seconds, take out the trach, put the ET tube in, get me on the vent, and wake me back up. I was like, okay. This was the worst case scenario that my neurologist had mentioned: delivering by C-section on a vent. I remember when he told me that I was like, nah, that couldn't be me!. Um, right.

However, the anesth. said, "Okay kiddo, your oxygen numbers are great. I'm going to lean you back just a little bit." So he did, and I was okay. After a few minutes, he put me back a little further. And waited....let my body acclimate to that position. He told me my oxygen numbers were still good. I was terrified, but many people were praying for me, and I KNOW God sent this doc to me. He was so awesome...I was at peace the moment I saw him. I immediately trusted him...and I don't trust doctors. I make them earn it, believe me.

So here we are going back bit by bit, and while it was a bit more difficult to breathe, I was doing it, and soon enough I was lying flat enough to have the C-section, NO VENT. This was truly a miracle, folks. Honest to God miracle. There was no natural way I should have been able to breathe lying flat on my back. No way. Except God's way.

I was so excited that I could be awake, and even talk, (well, whisper) during the delivery. Had I been on the vent, talking would have been impossible.

Doug was by my side (And he looked awfully cute in those doctor scrubs!) There were LOTS of people in there....my doctor, several nurses, helpers, more helpers, the docs from the NICU for Jacob, and The Giant.

The Giant was this huge man standing to my right. He was the Pusher. Dr. Lavery made the incision, and the Pusher started up by my breastbone, and started a downward pushing movement to get Jacob out. He was about 6'7", maybe 280. One of the man's hands were larger than my entire head. And he had both of them on my pregnant belly, pushing downward, squishing Jacob out. The entire gurney was moving. The man was HUGE. It didn't hurt at all, it was just this intense pressure. Crazy.

I will NEVER in.my.life. forget the moment they showed Jacob to me. (After they got him to let go of Dr. Lavery's finger with his mouth! He was biting the poor man!!) They lifted up this child. This amazing, wrinkly, pasty, beautiful, perfect, black-curly-haired, chubby cheeked angel and showed me my baby. Oh, that moment. Still brings tears to my eyes. I never EVER dreamed this was even possible, and here we were. I wanted that moment to freeze.

Unfortunately it didn't. Jacob was crying, which was a good sign, and his Apgars were okay, but not great. They whisked him off to the NICU, which I was prepared for, but it still stunk. I made Doug go with the baby while they stitched (rather stapled) me up and brought me to recovery. I was shaking so hard! I remember them telling me it was normal...but it was not fun!

I ended up being in recovery until midnight, because my heartbeat was too fast and they couldn't get it to slow down. I was severly dehydrated, and I drank a LOT...which helped the heartbeat go down, and I could finally go to my room. We had collected Jacob's cord blood at the time of birth to be cryogenically stored, so the box was on the counter waiting for the courier to pick it up. At the time, there were over 40 diseases that cord blood could cure for the person it came from. I'm sure there are even more today.

On the way to my room, they pushed me in my bed through the NICU so I could see my boy... I had only seen him the one peek in the operating room. I put my hand in the incubator (which he was WAY too big for!) and he grabbed my hand. Not tightly, but he kinda grabbed it. He had oxygen on, and a feeding tube in, because he couldn't suck. This was part of neonatal MG. He had it. I knew it right then. They weren't willing to come to that conclusion immediately, but in my heart I knew.

I slept fitfully that night, my arms crying out for the child I had just brought into this world. That, and the nurses coming in to push on my tummy to get my uterus to shrink back. Not so fun. It honestly didn't hurt as bad as I was expecting it to...but maybe I was just peroccupied.

The next day, as soon as I was able, I went to the NICU so I could hold my baby for the first time. I could.not.believe. it. This tiny miracle was MINE. I got to KEEP him! He was perfect. Big chubby cheeks...thick, black curly hair....perfect.

The next few days would tell the story....little did I know that I would be in for the most difficult journey of.my.life.