Saturday, September 13, 2008

My Intro

I'm excited for the opportunity to blog with you and get to swap stories and share encouragement with each other.

In Oct. 2004, my second son (and 2nd child), Marshall was born at 33 weeks gestation. The Emergency C-Section is still a blur to me. I kept wondering when I would hear him cry and when I could hold him. What I didn't know was, he wasn't breathing and was immediately "bagged". I worked as a housekeeper at this hospital several years ago. I cleaned the Labor and Delivery O.R. after surgeries were done. I had cleaned the room between the two O.R. rooms where they work on the babies until the NICU team can get there. I never dreamed that my own child would be there one day. I never thought that they would be calling Code White (labor and delivery emergency) and Code Blue (Respiratory). The NICU wasn't ready for Marshall because the doc messed everything up!

I had been having LOTS of trouble with Placenta Previa and contractions as well as a rapid heart rate. I was on Nifedipine but even that didn't stop my contrations in the end. When I kept contracting through Magnesium Sulfate, I knew we were in trouble. On Friday, I had been over to Parinatology for a vaginal ultrasound to see if the Placenta had moved at all. I noticed that the baby's cord was all bunched up between my cervix and his head. I asked the Parinatologist if this was a problem and he assured me that everything would be fine. On Saturday night, things got progressively worse. I was bleeding so much that there were softball size clots coming out and I was no longer allowed to get up for ANYTHING. Things went from bad to worse when the doctor FINALLY decided to come in and "let me deliver". I really had no choice! This baby was coming whether I liked it or not. I had been in so much pain for so long. The doc kept prescribing pain pills but they weren't helping at all. Finally, he let me get an epidural and then he came in to start the delivery process. He didn't listen to my concerns about the cord and popped my water anyway. The cord came out and then he nonchalantly determined I would need a C-Section. As I was being prepped for a C-Section the nurse decided to check me and noticed that the baby's head was coming down FAST!! I don't remember much after that because I was shaking so bad and was in a total panic. The nurse shoved her hand up as far as she could and held Marshall's head up there while my husband and the other nurse ran the bed down to the O.R. for an Emergency C-Section.

Later I was told why I never heard Marshall cry. He was NOT doing well and the nurses were actually wondering if he was going to be OK. His APGAR was 2. I can't remember what his second Apgar was but it was either 4 or 6. SO, he was rushed to the NICU and immediately put on the ventilator. He steadily improved and after a week in the more severe nursery, he was moved to the transition nursery where he was a "grower and a feeder". He was 4lbs 10 oz at birth. After 3 weeks in the NICU, we finally got to bring our beautiful boy home. We thought it would be so much easier than running to the hospital twice a day. He was on an Apnea Monitor and Caffiene Sulfate when he came home because he had Apnea nad Bradycardia.

We were always exhausted because he never slept well. He hardly stayed asleep very long at all and he was very easily overstimulated. I took him for MANY walks even in the winter because he was always so fussy. I just bundled him up really good and strapped him in the SNUGLI, then put the apnea montior over my shoulder and a blanket over him and away we went. I spent most of my time walking around with him, trying to calm him.

As he grew, he did more strange things. He would bang his head constantly!! If he was in his high chair, he would bang the back of his head repeatedly on the back of his high chair. He also banged it on the hard, metal door, on us, and on any other surface. He even banged it outside on the cement steps! We were very concerned about this but were always told "Dont' let him do it." How do you stop it??! When he learned to crawl, he would crawl on the floor while rubbing his head around on the carpet. He would lay down on the kitchen floor and push his body around in circles while rubbing his head around. If I held him, he would rub his head on my chin. He still bangs his head on us all the time but not on the hard things. He still seems to need a lot of pressure on his head. When he slept in his crib, he would push his head into the corner. Now that he's in a twin bed (bottom bunk of the boys' bunk beds), we still have pillows all around his bed because he still pushes his head into them to go to sleep.

When he learned to crawl, he would crawl over to his changing table that had a cabinet on it and open and close the doors over and over again. I thought it was strange that he never took anything out of the cabinet. He just opened and closed it.

At the same time, he STILL wasn't sleeping through the night and we were EXHAUSTED! We would take him to the Pediatrician and tell him we just couldn't get him to sleep through the night. He told us we weren't ignoring him good enough. What's there to ignore when he's not crying but just playing in his crib all night? Most of the time, Nathan had to sleep on a mat on our floor because Marshall would wake him up. After switching doctors, it was recommended that we get a sleep study. I had been TRYING to get my other doctor to prescribe one but he wouldn't do it. He kept saying it was our fault and that Marshall was just too spoiled. We got the name of a great sleep specialist and I was able to get an appointment within a few days. They had a cancellation and I was SO lucky (blessed) to get that appointment. The doctor immediately knew there was a problem and we started trying medicine. She said there was no point in doing a sleep study if he won't sleep! We got him sleeping enough to do a sleep study. The doctor called with the results in a few days and said his obstructive apnea was so severe that she wanted him to see an ENT as soon as possible for immediate surgery. We were told that doing a tonsillectomy on a 20 month old is dangerous but the risks of him dying of obstructive sleep apnea were even greater. So, we had the surgery done and his sleep has improved but not completely. The doc prescribed a CPAP mask but he totally freaks out and won't wear it.

His behavior is another problem we deal with. We're told he has "sensory issues" but nobody gives us any kind of concrete diagnosis. He has a very limited repertoire of food he will eat. If we try to give him spaghetti noodles, he throws up every time. Eating, sleeping, and anger have been our main concerns with him. He's BRILLIANT and can talk very well but he still can't sleep and his behavior stresses us out!!!

Now Marshall is almost 4 and is such a joy but such a challenge at the same time. We love him to pieces. He takes Risperdal to help with the anger issues. Without it, he was angry 90% of the day. He also pretty much refused to eat EVER. The Risperdal actually makes him feel hungry (even though it doesn't help him eat a bigger selection of foods). He still gets mad and hits a lot but not even CLOSE to as much as it was. We're still struggling every day to deal with the demands placed upon us but we wouldn't have it any other way. We are happy to be in Holland too. It's beautiful here. Different than we planned but beautiful.

Here are two examples of things he still does. The one on the top shows what I was trying to describe about him rubbing his head around on the floor. The one on the bottom shows how he always pushes on his head. He isn't in a crib now but he still tries to stand on his head a lot. I think it has to do with putting more deep pressure on his head.

7 comments:

Happy in Holland said...

Hey! I'm glad you are joining us! Send me an email at happyinholland@gmail.com--I want to talk to you a little bit about your son. I'm curious as to what avenues you've pursued on getting a diagnoses for him, and I may have a little info you may not be familiar with. Thanks! Talk to you soon!

tiptoe mama said...

Welcome welcome Anita. We are so glad to have you as part of our Tulip family. When they say that 'knowing is half the battle.' It's true. And it really is a BATTLE. We'll look forward to finding out more about it right along with you. And I think I speak for all of us when I say we'll be praying for you to find something out. It surely is a blessing just to KNOW. Thanks for sharing.

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Chair For Cerebral Palsy Child

Keep Posting:)

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Best Wheelchair For Heavy Person

Keep Posting:)

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Commode Reclining Wheelchair

Keep Posting:)

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Karma Travel Wheelchair

Keep Posting:)

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Karma Km 2500

Keep Posting:)