So when my darling 2nd sons Birthday came in August, I sat down to write a sweet thing about him. It didn't exactly come out the way I thought it would. What came out was, His story. How he actually came into the world. So, I've had it sitting here on my computer for a month. I'm taking a big breath and pushing the post button. I wrote it for my family. For him and I and his daddy. Also, for the other kids for them to know how this all came about. I am also writing this to fulfill a promise I made to God 12 years ago.
So if this is too much information for you, I understand. Just step away and turn off my blog for today. If not here is a peek into our most difficult time in our lives as parents. (We actually had another very difficult time when baby number 3 came as well. Just different and maybe not as long suffering. But just as difficult. And quite painful physically and emotionally. Another story, another day.)
My second boy. My marshmallow. My heartache. When my second son was born, it was much different then when my first was born. My first son was a big baby. 8 pounds 15 ounces. Almost 9 pounds. My second was huge. 9 pounds 10 ounces. And he was born completely natural. No drugs. No epidural. No nothing. Just womanly force.
When he came out we were thrilled to have another boy. A big boy. But, from the first moments he was out there was a problem. They took him away. Quickly. I wasn't sure what was wrong. They started scurrying quickly around the room. Calling NICU Dr.'s and nurses. There was oxygen and much nervousness around him. In the meantime, I had just delivered a big baby and there was repair to do. And bleeding. Much bleeding. It was a scary and very unnerving time.
I would see my baby for short periods of time and then they would come and whisk him away. I wasn't sure why. They kept giving us odd answers. Something to do with blood sugar. Then we had the visit from the doctor from the NICU. Not a regular pediatrician. Some kind of surgeon. No bedside manner. We were trying to understand what they were saying to us. Something wasn't right. His blood sugars... I must of had done something... You need to let us do things to take care... Go home... Without your baby.... Let us deal with this...
" I don't understand. Dr. tell me what is the worst case scenario."-Me
"He could die."-Dr.
"No. That isn't the worst case. Then he would go to heaven to be with God. The worst would be if he had to live in pain and have no real life here. Is that possible?"-Me
Dr. shook his head in disbelief and walked out.
This was the first week of our babies life. I forgot the part where I almost bled to death. I passed out visiting my baby from the amount of blood and stuff coming out of me, and the overwhelming feeling of failure I had. So bad that I finally allowed them to give me a sleeping pill and I didn't tell them for the first time, how sensitive I am to drugs and took it. I heard nurses talking outside of my room about me and my baby and how bad it was. I was so low. So... I don't think there is a word for what I felt.
He was wanted. He was loved. He was very ill. I went home without my baby. The thoughtless volunteer worker they had wheel me down to the car asked where my baby was. I wanted to kick her. I wanted to.... Die...I had to have broken him some how. I didn't know how. I just knew that he was in me and I did something to hurt him.
The very long week after with me at home crept by. Hour by hour we would call to check on him. I woke up to a raging fever. 105. I was freezing. I couldn't stand up. I had a kidney infection. Terrible. I had allowed them to put a catheter in because I didn't have any fight in me at the hospital and I let them do it to shut them up. It had made me sick. Big surprise.
The decision was made for me to move into the hospital to care for my new baby. I hated the idea. I didn't want to leave my 3 year old. We hadn't been apart more then an hour or two ever. Now I'm leaving him. I didn't know what to do though. The things they were telling us on the phone and when we visited that was going on with our little darling was full of incompetence. I couldn't believe the incompetence. In the NICU. And he was already sick. They were going to kill him. Literally.
I moved in. The Doctors weren't thrilled. The nurses weren't sure what I was going to do all day. Well, I won half of the doctors and nurses over to trust me. And the other hated that I was in their space. I learned all that I could about what my darling had. Hyper Insulinism was the name then. Not common. Not much known about it. My sweet friend researched the Internet and fed us as much info as she could find. She researched doctors and hospitals. All the while I learned many hospital procedures. I learned how to give my baby shots. I learned to dress his little incisions. I took his vitals. I changed his bed linens that I brought from home. I nursed him. and nursed him. Took his blood sugars every 20 minutes sometimes and nursed him. Fought with young doctors that were doing things by the books and wanted me to be out of the picture so they could do what ever they thought they would try next without running it by me first.
I am grateful and horrified by all that went on there. Strange statement, I know. But, it is so true. We were there for Almost 2 months. Living like that. I hardly slept because I had to protect him from the nurses doing stuff that wasn't necessary or doing it roughly. Not all of the nurses were bad. but, I soon realized that doctors and nurses are people. Just like everyone else. They have husbands, and rowdy teens and problems that they deal with while trying to make life and death decisions everyday. I would hear all of this reality all too clear while I lived there. As one nurse was assigned to us for her 12 hour shift, I heard all about her teen that was totally out of control and had run away. Yes, run away. And here she was trying to get through her shift worried about where her child was. While all of this is going on and she is quite distraught, she trips on baby boys IV that had to be surgically put in and had been sewn in place. Really. I could have scratched her eyes out, as my child howled in pain. But, how could I. Her child was lost. I had mine. He was being tortured before my eyes, on a daily basis. But, I had him.
I had read my bible much as a child. I knew my bible stories. I remember God talking to all of those people right out loud. But, I never heard him myself. I had been taught God could do anything. He just doesn't. Only at Pentecost did they have gifts. Only in the bible was there miracles like that. And God never talks out loud. And if he does, you are crazy. One night, I had a nurse I thought I could trust. She was convincing. My baby didn't get formula after the first week. It made him sick. And he had so much to endure, the least I could do was breast feed him. He had to be on a fast for so many hours for so many tests (and many more to come) that I believed the least I could do was breast feed him. He was my baby, I needed to breast feed him. See a pattern? Yea, they did too. This nurse was on her 12 hour shift and baby fell asleep. I told her I was going to go lay down and to call if he woke up. She assured me she would. Well, I poured into the bed in the tiny janitor closet of a room that was the sleep room. On the little twin bed. I didn't change my clothes or even put on the blanket.
That is when I heard it. A voice very big tells me, "Get up right now. He needs you." I feel myself lifted off of the bed and I wake up the rest of the way as I open the NICU door. Just in time to see this nurse putting a bottle into my babies mouth. The other nurses were apparently discussing the situation and telling her to call me. She was determined not to. I needed sleep she said. The nurses parted like the Red Sea when they saw me. Backing slowly away from her and me. (They had obviously remembered the night I grabbed the male nurse by the scrubs and hollered in his face to get me a doctor now! Somehow he was taller then me, but I was lifting him. ) The nurses face went white. All of the blood drained very quickly from it. And she said, "How did you know?"
I said, " HE told me. " She must have known what I meant (although I wasn't sure yet about the whole thing) because she handed me my baby and apologized quickly. I snapped that now I couldn't trust her and that meant that I couldn't sleep for her whole shift. Yes, I had heard God. Loud. In my head. And he lifted me to my feet.
The amount of trauma that baby boy and I endured was more then I could type in one place. It would fill a book and although many highs and moments God himself being present, it would be a very stressful book, I'm sure. Recounting this 13 years later is stressful. I still get sick to my stomach when I think about or talk about parts of the long ordeal. There were so many moments that refined me and made me a new woman. For good or bad, I came out of the situation completely changed.
He almost died several times. I was told he would probably be severely brain damaged. Maybe not even be able to feed himself. I prayed at that moment. I prayed every moment. Sometimes my prayers were not for what you would think. Some of my prayers, I am ashamed of now. Grateful that the Lord knows best and does what He knows is best. I wanted to quite so many times.
We went home finally. In October (he was born in the first week of August). I had to fight for it. I had to work hard but, they were finally going to release him to us. The nightmare just continued.
We had to give him medicine to control his blood sugars every few hours. I had to feed him no further apart then every 2 hours and many times it was as often as every 20 minutes. I was living on 4 hours accumulated sleep a day. Not in one stretch mind you, in short increments. Small naps. snippets of time. Yet, I had to feed and care for my 3 year old and this little bundle that was starving all the time. I had to give him a shot every 4 hours. It was awful. One time as he got stronger, I had to ask my 3 year old to hold the babies arm so I can give him his shot. I cried for hours after that, I knew I was ruining my son. No 3 year old should have to do that.
We went on like that for awhile. A week maybe 2. I'm not sure. It's all a blurr. but, then his sugar dropped. We had just gone and had an interview with a doctor that was way over booked but he said he'd take us. I was thrilled when the first thing he told me was to put that baby to the breast as often as he wanted. I breathed a sigh of relief right there. The other doctors fought me. They wanted me to formula feed and bottle feed. They even made me feed him a bottle full of sugar water before every feeding. Of course that would defeat breast feeding. I finally got pushed into a corner. I found a phone number of the local Le Leche league and called them. They told me to tell the NICU Doctors that I had talked to them and that they could have the 6 o'clock news there if they didn't back off. Funny. They backed off. Said bad things about me. But, backed off. I wasn't there to make friends. I was there to protect my child. I was fine with that. Like a mama bear. To the end!
So we had just had the interview with the new doctor and the baby lost his sugars. The meds didn't work. We had to rush him back to the hospital. Really?? I didn't want to but, knew there was just cause. As I am having to squirt this stuff in his little mouth that can only be described as cake frosting. It was disgusting. That is when the seizures started. He had a 20 minute Grand Mal Seizure. It was terrible. He was looking at me the whole time. The doctor yelled at the nurses to get out of my way so maybe I could bring him back by talking to him. I had never seen a seizure before. Of course I had a lot of firsts that aren't wonderful or celebrated there in those hospitals. And definitely not something you would find in anyone's baby book.
After a week or so at the PICU now we went home. It seemed like eternity. We were only home a matter of a day or so. We got an opportunity to go to Philadelphia to be put through a trial they were doing on what he had. We were on the next flight. This hospital was scary. It was huge. My husband and 3 year old stayed at an Embassy Suites about a mile or so away. We went through horrible trials and tests. We met others that had babies with the same thing. Many of them way worse. Seizures all the time. Severe damage done to their brains. And so much more. This was a teaching hospital so the different cases there were pretty extreme. Deformities. Illness. etc. My baby looked perfect. I was so blessed. The bizarre things that happened there and we had to endure again were shocking. You could not imagine and I couldn't make up the stuff it was so bad. I had a neurologist try to kiss me. yes really. I have a sick baby in the bed. He is supposed to be reading the tests and he goes in for one. I backed up and kept going. Then wanna bet, he did it again. He asked my husband if he could show me something, my husband left and this creep goes in for another try. Like I accidentally moved the first time?! CREEP!
Then they surgically insert a special IV into his leg using an x-ray and that night he almost bled to death. There wasn't enough doctors on call so I literally had to hold strong, hard pressure on the bleeding wound for 8 hours before I could get help. He would have bled to death if I had slept somewhere else like the other moms did. Then my baby gets staff infection. The doctor on call doesn't think anything is wrong so that night he is so sick. I have to get a resident doctor to help me squeeze the stuff out of his poor little leg. Green, smelly, oozy stuff. The resident was gagging. He couldn't handle it. I told him I can do this. You can take a breath and step back. I'm a mama and this is my child. This is just a couple of the things that happened. And the others are just as bad. I'm not just picking the worst stories, just the more shocking ones that stick so vividly in my mind. They were all just as bad.
They tell us to go home they can't help us. God steps in and we can't go home. It is Thanksgiving day. Well, good thing we didn't go home. His medicine stops working. Just like that. No warning. Just stopped responding to it.
They go in for a blind surgery to decide what to do. I have a vision. I can't explain it. As the doctor is telling me what they will do and showing me a picture of the pancreas, I stop him and tell him the problem is "there". I point at a spot on the picture. I beg him not to "chunk out the pancreas" and just go to that spot. They think I'm crazy. They offer me sleeping pills because I must be delusional. They tell me not to pray for a miracle cure. Pray for diabetes. That is probably the best they can do.
I pace and pray and read my bible. Random passages. I walk some more and sit. 8 hours of surgery. It was so long.
They found it. The one cell doing all of the damage. It was right where I had said. The surgeon said that he had gotten to the point in the pancreas where he was going to "chunk out the rest " of the pancreas and he said he heard my voice in his head. He said he couldn't have lived with himself if he didn't just look. And there it was. Baby boy had 85% of his pancreas removed. But, he is perfect now. They said it is possible that as he grows, it would rejuvenate.
That was the most horrible time in my life. The worst thing I have had to endure. The hottest fire God has ever put me through. But, Even as awful as it was, I felt God like I had never felt him. He was close to me. He talked to me. He lifted me.
So baby number 2 had come in with the much trauma. And he was nothing like the first baby. Still isn't like his brother. I had to fight for his life. I had to fight for my own life. I learned what the scripture means about praying without ceasing. I Thessalonians 5:17. I don't think I ever stopped praying to God. It was all one big prayer. So much crying out. So much just crying. I wanted to quit. I wanted to run away. But, I couldn't. He was my baby.
That little baby, just had his 12th Birthday. He is perfect. He is whole. God blessed me with the miracle cure or healing that the doctors told me not to pray for. Well, I'm glad I didn't listen. I'm glad that by that point I had heard God enough and felt his presence that I had confidence that He could heal him. And guide the surgeons hand. Also, whisper my voice in his ear to do what his surgeons logical brain told him not to.
I have been blessed immensely with this child. I love him with the awe that he was touched by God. And because of him, so was I. Happy Birthday big guy.
