Jake: The First Year

1/31/2012

Intro

We are coming up on Jake's first birthday (which is also my birthday) and with it has come a lot of nastalgia about the last year and a half or so since we found out our baby had Hydrocephalus. I have felt a sort of urgency to really write things down. Mostly for our family and especially those going through similar circumstances, just looking for help, hope, and resources. Blogs were my number one resource when I was pregnant and trying to prepare. I realize though, that there are many of you who would be curious to know about what went on. And so, for those reasons, I am going to become an avid blogger and document everything, starting from the beginning.

I love to read so this may come across as being like a journal or book, but I want the experiences to be real to anyone reading it because this is family history in the making. The things I'm writing about are pretty truthful. I don't meant to scare anyone going through similar things I just want to be real. Wow it's 2 AM but my mind is filled with thoughts and words. At times I look at myself in the mirror and think of everything that has happened in the past year and wonder if that life has really become my own. It has wonderful days, and it has very difficult ones as all of ours do. But I wanted to document this journey to spread awareness, and to reach out to those who are searching, like I was, for just a speck of hope.

November 2010: The Beginning of our New Lives

We were looking forward to hearing a word that day. "Boy" or "Girl". I was so excited! Every day I could feel him moving inside of me. His heartrate was incredible. Every mother and father looks forward to that special ultrasound day when you get to see your moving, living baby for the first time and hear the doctor speak one of those words that will change your life forever, but never could we have imagined that the words we would hear that day would not only be "Boy" but also "Abortion", and "Hydrocephalus".

I laid there with the ultrasound machine on my belly, amazed at the little person inside of me. I couldn't wait to see him, to see if he was a boy, or girl. I was so extremely nervous that day. The room of the ultrasound did not hold particularly good memories for me. It had been a rough road to get to where we were: a year of trying to get pregnant the first time, two previous miscarriages, one that was especially traumatizing. I couldn't help but feel like that place held a certain way about it that made me uneasy. Afterall, every time we had tried to get an ultrasound before, the results were always bad news. But we finally had a pregnancy that was going right! I remember holding my breath and my heart was beating so fast as he checked all of the baby's organs. The legs,the kidneys, the liver, the stomach, the arms, and then the head. He paused, took some measurements, and again measured the legs. Back to the head. More measurements. Then again, the legs. He asked the nurse to see my test results. That's when the bad feeling sunk in and I knew. Even being the least knowledgable person about medical issues, I knew his head did not look right. I knew from other ultrasounds that I had seen that I could not see his brain. The doctor left the room.

When he finally came back in, he had THAT look. The one when doctors are putting on their bedside manner faces because the news isn't pretty. He briefly explained the meaning of Hydrocephalus. "Water on the brain". He had a lot of extra fluid in his brain for reasons unknown, and we would have to go to the hospital immediately to have a more extensive ultrasound done and a diagnosis officially given. The part I kept replaying in my head was that "His head is abnormally large, and the fluid is pushing his brain to the side". As a doctor I'm sure he felt it was his duty to bring up abortion, which he did. My mind was just spinning. I felt like I was in a vacuum... not real.

The drive to the hospital was with Kenny's mom. We both silently cried. "I Am a Child of God" was playing in the CD player and I could barely stand it. I called my mom on the way there and explained the situation to her. I asked her to call the extended family and to please pray together before my next ultrasound.

The hospital confirmed the diagnosis. Severe Hydrocephalus. I was referred to a specialist because now I was a high-risk case and testing and preparing had to be done. Kenny and I were distraught. The doctors had been sure to tell us that we had to prepare for the worst, for the chance that he might not live very long, or at all. In the very least they were sure he would be brain damaged. In that day, the outlook of our lives changed forever. We were no longer imagining our child growing up and going to college, or getting married, or even going to school. Our focus was so much closer than that. We were focused on every day, and especially his birth. It was like "The Twilight Zone"; something so unfamiliar and strange we didn't know if it was real, but every day I woke up and looked at his ultrasounds and knew that it was.

That same night, with that dirty word "abortion" rolling around in our heads, we decided that we could not longer refer to him as "the baby". And so we named him Jake.

The First Doctor

She was, to say the least, not my favorite person. From the moment we walked in she seemed bored with me. A child having a child. I look so young that I get that a lot. Well, yeah, I AM young but not a teen pregnancy like a lot of doctors seemed to think. I was there with my mom and my mother-in-law because Kenny had school. I'm so incredibly thankful that they were there because I was scared and still in a state of confusion.

First, we met with a geneticist to see if there were any possible family related DNA issues that may have caused the hydrocephalus. Then we saw the main specialist doctor. She did an ultrasound. "His hands look fine, and his feet look fine," she said. She explained that many times hand and foot deformations are associated with birth defects like Jake's, as well as heart problems so we got set up to do a detailed heart ultrasound with another doctor. Then she said, "I am offering you an amniocentesis today and I strongly suggest you take it. Yes or no?". I know I went pale. I never ever wanted an amniocentesis from the moment I found out what it was in a pregnancy class I took in college. The idea of having your belly penetrated by that long needle was just gross. But I had to do it. My mom held my hand and it wasn't as bad as I thought it would be. Certainly not hardly anything compared to what childbirth was like, but it was the beginning of the medical procedures I would have to have done including an MRI.

She kept treating me like I was an idiot and didn't care about my child or understand my situation which is why I went back to see that doctor one more time before I found another, much better doctor and switched.

The Second Doctor

We are so thankful that we found Dr. Carpenter. He works in the Houston Medical center at Baylor and he was a godsend. An older man in his sixties he has a lot of experience and was my original doctor's professor at one point. He is frank, open, and honest, but he didn't treat me like I was a child. Up to that point it had been about a month since we found out about Jake and I still hadn't dared go on the internet and google anything. I was afraid to see pictures... I knew he would look different. I was afraid of what I would find and afraid of facing something I wasn't ready for. With all of Dr. Carpenter's years of experience, he did say that Jake's case of Hydrocephalus was one of the most advanced he had ever seen. But we liked him, and he was smart. He said we would wait to take the baby until the last possible moment because we wanted his lungs to be developed as much as possible so he had a better chance of surviving the brain surgery he would have shortly after birth. He was the first doctor to suggest so, and I believe it was one of the reasons Jake is a miracle. Other blogs I had read said to take the baby early to get the pressure off of the brain quicker with the shunting, but I'm SO GLAD we did it Dr. Carpenter's way. I have learned that being born early is much scarier, in my opinion.

The Months Before Jake's Birth

We were just riding on hope at that point. I don't know what it was, but it started then and it has continued until now, and it will continue on. I know there are those out there who may not care about how we have come closer to God through this experience, but it's impossible for me to keep Him out of it because He has blessed us and carried us through. All we could do at that point was rely totally on our Father in heaven and just pray. We always felt so much hope and it was confusing to compare that to what the doctors were telling us. It was a time in our lives where we felt like all the doors were sealed shut and there was no way out, yet we still felt so much peace that everything would work out the way it was meant to, and that it would be ok. Kenny and I had each other, and we had supportive family on both sides. My mom truly became my best friend during those times because she is always there to listen to my fears and my celebrations, both of which there have been many.

We just went about things the same. I hadn't even really told people I was pregnant, they just started commenting on it when I popped out. I was waiting to tell people, but after everything started happening I found that I just didn't have the strength to tell anyone what was going on. I mean, I told a few people, but it was too much to explain to people who just wanted to make light conversation. I just said, "Yep, it's a boy and we're excited!" I had decided to be excited because I was starting to feel robbed of the whole first-baby experience. I was jealous of others around me who were having such a simple, easy time having perfectly normal kids. I'm not saying that's right, but I wanted to be excited too and have a baby shower and feel like my life was going to be ok, not coming to an end. This caused some strange reactions from people once they knew. Some just thought that Jake's condition just must not be a big deal. Others looked at me strangely because they could see that I was happy. By all means I shouldn't have been happy! But I was, and I was finally having a baby. I was scared as hell but I was going to decide to be happy as much as I could. What was the alternative? There WAS no other alternative. I couldn't just quit, Jake needed me and I didn't want to be a depressed mom. I wanted to keep those bad hormones out of the picture.

It was around this time that I finally got the courage to go to google and type in "Hydrocephalus". I was so surprised to find that the current information was very intriguing and that pictures of babies with Hydrocephalus weren't as scary as I thought. Well, they were sad, but the babies were cute and I started to feel more like I knew what was going on. I researched all about shunts, daily life, and found blogs of moms out there like me who were already dealing with this every day. I learned that each child's case is different so there is NEVER a reason to give up hope. I knew things would be different, but I was able to start preparing and taking control of anything I could control. I went to the Texas Children's website and found a neurosurgeon. I read up all about the NICU and how to prepare for it. I looked up special equipment Jake might need. It was actually very refreshing to feel like I could do something.

I kept going to ultrasounds every week (which was like hell) because I was reminded of our predicament every time and his head just kept getting larger and larger exponentially, which meant his brain kept getting thinner and thinner in spots. But life goes on, and we kept doing things and going places.

About 7 Months Preggers

Two Weeks Before The Big Day

I couldn't believe I landed myself in the hospital! I was having this really strange pain in my back. It felt like my kidney had a lot of pressure on it. I called the doctor because it started getting pretty intense and if I timed it, well, they were about 7 minutes apart. She told me to go to the hospital right away to get checked out. Kenny wasn't home though, so I just sat in my chair and watched TV until he got home that night. The nurse called me and promptly chewed me out for not going in right away.

I thought it was nothing, but when I was in triage and they hooked me up to the monitors...yep! They were definitely contractions. I was informed that I wasn't going anywhere. Kenny and I had been so confident that we would be sent home that we hadn't even brought my hospital bag. At least I had just finished making one literally the day before. Kenny went back home and got my stuff. The started a drip of magnesium sulfate, the nastiest, crappiest drug on the market I swear! It stops contractions, but it makes you feel like you have the flu, you can't think straight, you're not yourself. I was so bummed that I was stuck in the hospital but the doctor knew it was crucial to make sure Jake's lungs were ready before he was born. I was 35 weeks at that point so he wanted me to stay for at least 2 weeks.

By then, we had many test results come back. Jake's heart was fine. His other organs were fine. He did not have Spina Bifida or Trisomy 13,18, or others. His condition was not genetic and for some reason he was a very active baby despite having complications. It's true! He would kick and kick and kick. Everything looked pretty good in the other areas of his body which was amazing.

So we just waited. Kenny slept on a crappy pull-out chair for two weeks and got up every morning to go to school and ate McDonald's every night because it was the only thing in the hospital open when he got there. I BALLOONED out of control and gained so much water weight. Jake's head was so big that it could not fit down into my pelvis but was rather freefloating around. I remember trying to walk from the bed to the sink and I had to squeeze my legs together and put one arm underneath my belly just to get there. I wasn't allowed to unplug my drip and even step outside of my room. Every day I had to get multiple vials of blood drawn and every few days I had to get a new IV. My veins are so bad they almost put in a PIC line which goes straight to your aorta, but luckily I avoided that one. Valentines Day I spent alone cutting out hearts and gluing them to pieces of paper. HAHA it was so funny, especially on the mag.

Our good friends Leigh Ann and Joel came to visit with their daughter Bailey and brought me Taco Bell a couple times (even though I only remember one time). They are such good friends and I thoroughly enjoyed the company! Kenny's parents were in the Cayman Islands for most of the time but when they got back they came to visit and brought goodies. Kenny's sisters also came to cheer me up and brought my nephews. I have the best family in the world! It really cheered me up, I don't know what I would've done without them. It really made me sympathize with those who have to stay in the hospital all the time for months or maybe years. It's truly awful.

See for yourself how huge I was. It was like having twins or triplets. I kid you not. I am originally about 110 pounds and got to about 165 or 167 I can't remember.

The Big Day

My C-section was scheduled for the day after my birthday on Monday, February 21st. I wanted him out!!!! I was so scared for the C-section but any pregnant woman will tell you that the end is torture when you feel like you no longer have a body and you're sharing it with someone half your size.

Saturday night my parents flew in, the night before my birthday. I was so excited to see them and I didn't think my dad was coming but he surprised me and came too. It was like a breath of fresh air to have everyone there. I missed my brothers and my sisters though, I wish I could have seen them too. My parents brought presents which also cheered me up. We said goodnight and they went to their hotel.

I tried and tried to sleep that night but it was so difficult. I looked at the clock and suddenly it was 3 AM. My nurse came in to check on me. She said, "What are you still doing awake?" I had been kind of feeling like it was hard to breath. So the nurse took my blood again to check the mag levels. They came back way too high. So about two hours later she came back in and said, "I called the doctor, they're doing your C-section today". That was such a shock! They had to take me off the mag (hallelujah) and had no other choice. So at about 5 AM I called my parents with the news. I was too high strung with nerves by then. I found out I was scheduled for sometime around 9:00 that morning. It felt so quick! My parents came about 7:00 and I opened my presents. I got a Sushi making kit (my pregnancy craving), some pictures my brothers and sister drew for Jake's nursery, and a coloring book and crayons. It was great. We took some last minute pictures right before I got prepped for surgery. Here I am with my parents and Kenny.

So, it was happy birthday to me and Jake. A double birthday! I never would have guessed. He wasn't due until March 14th but I could not handle another day in my double-body.

I got prepped and wheeled to the O.R. I sat on the table and they began my spinal block. This would be no regular C-section and we all knew what was at stake. Before they began Dr. Carpenter came in and put his hands on my shoulders and looked me in the eye. He asked me how I was feeling and I said, "Nervous, but I trust you". And I trusted God. He said, "I would be nervous too with all the s**t that's been handed to you." HAHA amen. The spinal was bearable, but not pleasant. I remember him saying it would be around 20 minutes to get it done but it seemed much quicker, thank goodness. I was laid on the table and the screen was up. Kenny still wasn't in the room. By the time he finally got in there they had already started. I felt really groggy (I asked them to keep me well-drugged) but I remember it felt like only a matter of moments before I heard him. It was a cry like he was supremely annoyed. I remember I started to cry and said with a lot of effort, "I'm a mommy". The nurse put his footprints up to my face. I remember the doctor leaning over and saying loudly, "You can never have a natural delivery. Always C-sections. You have to have C-sections!" Then they wheeled Jake out in his little incubator with the oxygen machine hooked up to his face that made him blow bubbles. It was literally the most amazing thing because it became so real that there was a living human being inside of me! It was beautiful. Then I passed out. I woke up a couple of times. I remember feeling things being stuffed back inside and sewn shut then I passed out again, and then I remember being wheeled down a hall and then passing out again.

When I woke up I was in recovery. I couldn't focus because I was so drugged. My eyes kept rolling back into my head of their own accord. It was so strange. I was hooked up to pumps on my legs to keep clots away and I said hi to my parents. They showed me a picture of the baby. He was SO BIG! He already had rolls. It looked like I gave birth to a 3 month old. 9lbs, 15 oz. I knew a lot of that was from head weight, but still, he did not have a small body. My own body felt held together by duct tape. I was on a platlet expander (I think that's what it's called) because I lost so much blood. I learned later that the doctor had to use a vacuum on Jake even though he did a vertical C-section for extra room...it wasn't enough because his head was so large. I had lost so much blood because of the fact that my uterus was simply stretched so thin. At that point I thought my belly-button was gone, although luckily it's still hanging on (haha). Usually you try to get up and walk the same day as your surgery but I wasn't allowed because of the blood loss. I stayed in recovery until 7pm and then got moved back into my old room. While I was in recovery, our good friend Pedro Rojas came to vist and brought me cookies for my birthday not knowing I had had the baby. I can only imagine what I looked like!

I just remember how much I wanted to see Jake. Everyone else had already gone to see him and I was the only one who hadn't. The nurses tried to set up some kind of monitor so I could see him  but it didn't work so I didn't get to see him until he was 2 days old, the day before his shunt surgery.

When I Held You for the First Time

I finally got myself over to the NICU. My mom and dad wheeled me over there so I could finally see him! I couldn't really stand up too well and his bed was elevated, so I got short peeks between breaks until his nurse came over to talk to me and she said I could hold him! I was not expecting to be able to hold him for a while, so we were all so excited!



I knew what to expect when I saw him for the first time, but it was strange to think he was MY baby. I didn't get that immediate bonding experience with him and for two days I had just seen pictures so it was weird. He didn't seem like he belonged to me, and honestly, I was quite relieved he had to stay in the NICU for a while because it was a little too much to handle thinking about bringing him home just yet. His head was so large, it was so awkward to hold him. His little neck had no muscle tone and it just flopped with that heavy head on the end of it. There was so much fluid that his head felt squishy and I was afraid to touch it. You can kind-of see in this picture how his eyes were wide and they were also pointed in almost opposite directions because of all the pressure in his head. He loved to grunt! I remember for months he just grunted when he was upset instead of crying. It was so cute, but it was also evidence to how unresponsive he was. Kenny got to go back later that night and hold him too.

Jake was like, the biggest baby in the NICU. There were all these little tiny 1-pounders and then there's Jake, 10 pounds with wrist rolls. His nurses loved him.

Surgery Day

I wasn't really nervous for his shunt placement surgery at all. First of all, we absolutely loved his neurosurgeon and trusted him fully, but also I still felt like it wasn't my kid. But we had nothing to do but sit around and wait for the surgery that afternoon. Kenny was in class, and so it was just my mom and dad. They took really good care of me, I'm so glad they were able to come! It would've been so difficult to be there by myself just waiting in the hospital room. Finally, the neurosurgeon came into the room and talked to us. These are the main things I remember him saying.

1. The surgery was a success and everything went well (phew!)

2. He took a look at Jake's brain and couldn't see anything wrong with it's anatomy (more than we hoped for!)

3. He told us to never give up hope because Jake's situation looked pretty good considering the hydrocephalus was the only thing wrong with him and there were no brain malformations (besides the fact that there was just a lot of pressure on it). He said that he's seen worse cases of hydrocephalus turn out just fine and he's even seen kids who made it to college.

4. There is a 40% shunt failure rate within the first year of getting a new shunt, and about a 20% infection rate. Either one of these occurrences would result in more surgery.

We got to go see him after the surgery. He had on a surgical wrap around his head, but it looked like a cute little hat, it was adorable. The nurses were giving him a binkie coated with sugar water and morphine for the pain. Look how cute.



Here's some more info on the shunt and the procedure:

 There are different kinds of shunts, but the kind Jake received is called a VP shunt, or a Ventriculoperitoneal Shunt. It is a device made out of plastic that is put into an area of the brain where it can drain the extra fluid. It is then wired through the body back down to the stomach where the fluid drains and is taken care of naturally by the body. The shunt design allows for bending over, etc., so it has a valve on it that stops the backflow of cerebral spinal fluid (or CSF). The entire shunt is under the skin. Here's a diagram, and then I'll explain more about the procedure.

There is an incision made behind the ear, and one in the stomach by the belly button. They drill a small hole into the skull and pass a catheter through into the brain. Then another catheter is put down through the neck (another cut is made in the neck) and fed under the skin to the stomach. Then they attach the valve to both catheters to make one long device. Whenever extra pressure from fluid builds up, the valve in the shunt opens and allows the fluid to drain into the stomach cavity. The whole procedure takes about 1 1/2 hours. It's much riskier for babies because of being under the general anesthesia, and especially if their lungs are not developed enough.

Also, shunts can fail often, but this depends on the child. I have heard of children needing 30 shunt revisions by the time they're 3 years old, but I have also heard of (and met) children who were 5 and 11 years old and never had another revision. Someone in the NICU who works with many kids with shunts told me that the average in revisions is 3 in a lifetime.

Shunts fail because of blockage (calcium build-up), just because they are a man-made object and thus imperfect, they get infected, they slip, and I'm sure there are more, those are just the ones I could think of off the top of my head.

The Weeks Afterward

It was only the next day or two after that that we got to dress Jake for the first time, he got moved to a regular crib instead of an incubator, and as you can see in the previous pictures, I had forgot to add that he had been off of his CPAP machine and on room air for a few days (which was amazing because the nurses said not to expect that to happen for a while). He did well with surgery recovery in the days afterward and only needed two doses of morphine. Again, he was pretty out of it because of the brain pressure and I feel like that was part of the reason why it didn't bother him more. The recovery itself took a very long time and his incisions weren't quite healed up until a couple months later when he was home. After about another week in the level III NICU he was moved to level II, which was awesome because it meant that he was lower risk.

At that point I had been released from the hospistal and we were staying downtown at a hotel nearby. Luckily they had a shuttle that would take you over to the medical district for free and my mom and I would take that over to see Jake every day. She had to go home after about a week after I got released and of course Kenny was in school every day, so I took the shuttle over by myself every day to see the baby. The days would just fly by. I would have to leave periodically to go pump and it seemed like I could never get enough time with him. At that point, he really did feel like my baby even though I couldn't imagine what it would be like to have a baby at home and I still didn't feel ready to take him home yet. This is maybe 2 weeks after he was born by the way. He still had a feeding tube, but he was able to drink from a bottle (yay!) so he was able to take some of my milk. He had a really hard time finishing it though and usually they had to put the rest down his tube. That's mostly what we worked on every day when I came, I tried to get him to finish his whole bottle every 3 hours. Jake had a lot of tests done in the NICU and he was seen by a lot of doctors, so here's another list of what they told us.

1. He had a strong suck and he could put his hands together and to the middle (called midline) and these were both very good signs for his brain.

2. He had a hearing test, which came back that he was deaf in one ear and mostly deaf in the other.

3. He had a vision test, which came back not so great and he was diagnosed as cortically blind (meaning the eye itself is fine, but the brain can't process the info)

I knew that his hearing and vision may come back with very discouraging results, but for some reasons the news on the vision really hit me. I had been hoping for something because I felt like he was seeing something. I called my mom after the nurse practitioner gave me the diagnosis and I remember just stepping out into the hall, telling her the news, and sobbing. Some therapists had come by and told me that therapy was going to be that much harder because he wouldn't have visual motivation and he wouldn't understand his relation to the world around him for a while as far as movement and gravity. I just remember feeling a bit discouraged at everything going on (and I still do!) But I cried, and then I got over it. I decided there was no reason not to give up on his vision and his hearing once much of the fluid levels were able to regulate in the brain and the pressure came off. So I decided to just decide he was going to see someday.

Week 3 we started to see some hope for coming home soon. The nurses had told us he would be in probably at least a month, that they hadn't seen anyone with a condition like Jake's come home earlier, but the only issue he really needed to work on was feeding. He still had the tube, and they had decided to sign me up for a class to learn how to put the tube in myself because he would probably be sent home with one. I was anxious to get him home, but I REALLY didn't want to have to do the tube. I would if I had to, I thought, but I just came every day and worked and worked on feeding with that little boy. My mom came back into town because he was coming home soon, and I was SO GLAD to have her back and have some company. Also, my Aunt Cyndi came to visit one day. Thank you Aunt Cyndi!! I needed family so much.

One day, my mom and I came into the NICU and Jake had his feeding tube out!! His nurse said that it had been 2 days and he was taking all of his bottles for her so they removed it! Hallelujah! All we had to do was get a car seat (a car bed) and we could get him home!!



This is the best picture. He was being fitted for his little wheelchair and he was smiling like he absolutely loved it! He had to have the wheelchair for a while simply because of lack of head control and how fragile and heavy his head was.

Such a handsome little bug

Here's a much later picture of Jake in his car bed but I wanted to show what it looks like. It just lays flat which is MUCH safer for him. If he were in a regular baby car seat at this point, he probably wouldn't be able to breathe because the weight of his head would collapse his airway. But dang, they are hard to get your hands on especially for bigger babies!

Ok I'll post more soon but it's getting late, so that's it for now!