15 month well baby check up

Meghan had her 15 month well baby check up with Dr. Sievert today.  Since Meghan is a small girl, we all take turns guessing what her weight will be.  Here are her stats she got today:
Weight:17lb 8 oz - .32 percentile
Height: 28 inches - 1.76 percentile
Head: 48.3 cm - 96.17 percentile - she has a larger head size because of her Hydrocephalus.

I was the closest in guessing her weight - I guessed 17.14.  I guess we are all just so excited for her to be in her new carseat, but she has to weigh 20 pounds before she can go in it.  Hopefully by Christmas! 

We discussed a few concerns about Meghan with Dr. Sievert today, but, didn't get much clarity, as I expected.  Most of her issues are neurological, which is where Dr. Petronio comes in.  Dr. Petronio is her neurosurgeon at St. Paul Childrens Hospital.  A few concerns we have about her are chocking/gagging/swallowing issues.  She will choke, or gag, on food periodically...not all the time and not every day. Anyone who knows Meghan knows we need to have her food into small pieces or she will shove all the food in her mouth.  Because of this, we are very careful she doesn't put much food in her mouth at a time.  A couple days ago, I was feeding her pudding and she choked on that.  This is a symptom of Chiari.  Another concern we have is Meghan's left foot not having the same reflexes as her right foot.  Feet and hand numbness is another symptom of Chiari.  I just hope things aren't getting worse with her Chiari. 

About 2 weeks ago, we were contacted by Childrens to schedule her next MRI.  This is scheduled for October 16 and it will be a 2 hour MRI, where she will be sedated.  She will have images taken of her brain, and spine.  She will also have a CINE MRI, which is checking the flow of cerebral spinal fluid - to check for any blockage on the spinal cord.  We will hopefully know much more about her Chiari and syrinx after this MRI.

Good news - last Wednesday, Meghan decided to take a few steps all on her own!  She was more thrilled to walk than we were to see her walk I think.  Her eyes lit up when she took those steps...it was amazing to see!  She hasn't taken any steps since then, but we know she can do it!!

The Beginning

First, I'd like to thank you for taking time to read about Meghan's journey.  In the short time she's been with us, she has been through SO much and has shown us how much of a fighter she is.  I wanted to share her story and her journey, as well as our journey as parents, and a family so people can try to understand what we go through from day to day.  I will warn you...this first post is LOOOONG, as it starts from her first day of life.  Thank you for your continued support.  It will forever be appreciated!


June 10, 2011 -

This is the day that God gave me the most precious gift in the world...being a mother...for the second time! I will never forget the moment when the doctor announced I gave birth to a brand new little GIRL! We were so overcome with joy...all we could do was cry happy tears. We named our new bundle of joy Meghan Elizabeth Nelson. She weighed 8 lbs. 14 ounces. Big girl! She even outweighed her big brothers birth weight. Not sure Luke liked that?!?! I can remember holding her in the OR room feeling complete. Jeff left me to take Meghan with the nurses to get checked out while I went to the recovery room. Once the nurses brought me to my regular room, I was told I wasn't able to hold my new little girl. I felt like I was having a bad dream. Why can't I hold her...what's wrong???? Her oxygen stats kept dropping to levels that the nurses weren't comfortable with. They wanted to monitor her. It felt like eternity before I could hold her. Finally a couple hours later, the nurse brought her in. Jeff handed her to me and put her in my arms. I looked her over and fell so deeply in love with her. But, something about her wasn't right. I felt it. Call it mothers intuition, but I knew something wasn't right with her. I noticed her right side of her forhead stuck out farther than her left side. I also noticed the right side of her head slightly misshaped. No one seemed concerned nor did any of the nurses say anything about it to me, so I blew it off, and told myself it was like that from the position she was inutero. I told myself that it would go away within a couple days and to forget about it.  In the meantime, I couldn't get enough of her. I enjoyed introducing her to her two big brothers. I loved seeing her brothers eyes light up when they got to hold their new little sister. A couple days passed in the hospital and we we discharged and were able to go home and enjoy our time together as a family. As the days went on, Meghan became rather irritable. Her head shape didn't change. I looked at our daughter all day long, looking into her eyes, wondering why it hasn't changed yet. I never said anything to anyone thinking people would just call me paranoid. I don't want to be that paranoid mom :) When Meghan was rougly 2 weeks old, she started projectile vomiting. So, we switched bottles hoping that would help. It did not help. She would also have 10-15 dirty diapers a day. Needless to say her bottom was very red. June 20th, 2011. This is the day the medical journey started with Meghan. We brought up our concern about projectile vomiting with Meghans doctor. He suggested we try a soy formula. We also got some antibiotics for her red bottom. Poor girl. We left the doctor and went straight to the store to get soy formula hoping this would be the cure all. We switched and noticed her BM's becoming less frequent, but her vomiting continued. So did her fussiness. What is wrong??? Meghan continued with the projectile vomiting so Meghan had an ultra sound of her stomach looking for pyloric stenosis. That came back normal. Vomiting continued so she had lab work done. That all came back normal as well. By this time, we noticed Meghan's weight to slow down DRASTICALLY. A couple months passed with no change. We decided to take her off soy formula and go back to the formula she was on in the hospital. That was the worst thing we decided to do. No lie, within a half hour of Meghan having 1 ounce of the new formula, she started having diarrhea. And this would be up to 20 times a day. We took her to the doctor and he said it was due to an allergy to the formula and that she could have the diarrhea for up to 3 weeks. ARE YOU KIDDING ME??!?!?! I felt like my whole entire day was changing Meghan's dirty diapers one after the other. By this time, I had started doing daycare again and felt so overwhelmed. I felt like I was barely living, barely surviving. Not able to enjoy my little girl. But, I'm a mom and I do what I need to do to make my little girl as comfortable as possible. The 3 weeks passed and Meghan slowly got back to her normal again. But her vomiting continued. There was even a few times where she quit breathing for a few seconds due to chocking on the vomit. We were so scared. We were finally referred to take Meghan to a GI specialist. We didn't know it at first, but he ended up being our angel in disquise. We took Meghan to see the GI doctor, gave him Meghan's medical history and he suggested we have xrays of Meghan's GI track and a barium swallow test. A few weeks later, we took Meghan for those appointments and were told everything was normal. We didn't know what to do. At this point, we were concerned with Meghan's lack of developmental milestones and it was suggested that we look into early intervention physical therapy to help her with her developmental delays.  Meghan was tested on 3 different occasions by a PT and OT and she was approved for physical and occupational therapy. Meghan was at a stand still at gaining weight, and developmentally, so we decided to get a second opinion from a pediatrician on Meghan.  I felt like her primary doctor gave up on us, so I wanted someone new to take a fresh look at Meghan. Our main concerns about Meghan with the second opinion pediatrician was low weight gain and vomiting. I felt like no one believed us when we would tell them she would vomit up to 30 times a day. He ran some tests on her and everything came back normal. UGH!!! He suggested we go back to the GI specialist. Jeff and I debated for a couple days if we should go back to the GI doctor. We wondered what he would tell us that he hasn't already told us? We thought he couldn't help. BUT, we are dealing with our daughters life, and deep down we both knew there was a reason why all of this was going on her with and we knew we needed to find out what the cause was. So, we scheduled our appointment to meet with the GI doctor again. At this appointment, he became our angel in disguise.  He asked us if she had ever had an MRI of her brain. WHAT? Why would she need an MRI of her brain?!?! My daughters brain is perfectly normal. She's puking...that is a stomach issue...not a brain issue. She's tiny, but this is because of the amount she vomits everyday, right?!?! He explained to us that her head size was just a little on the large side. Nothing major, but he told us he's thourough and doesn't like to miss anything. He reassured us that he didn't think they'd find anything, but that he suggested that be our next step. My heart ached. We walked out to the scheduling area and the scheduler called St. Paul Childrens for a brain MRI. This is not happening. Not to us...not now. I felt like I was in a bad dream again. We got our appointment scheduled and walked outside. I wanted to ball my eyes out. Jeff did his job and reassured me over and over that everything would be okay. But, I knew it wasn't. I kept thinking about her head shape. Her forehead portruding out on one side. The bump on the back of her head that two other doctors told me was nothing - that it was just the way her skull fused together. I knew there was something going on inside her head. I felt it when I touched her head. I felt it everytime I gave her a bath. I would stare at her wet head, where all her imperfections were more evident when her hair was wet, and I cried. Everytime I gave her a bath...I cried for her.  The days passed and we moved into our new house. A week after we moved, we went to St. Paul Childrens for Meghan's brain MRI. We decided that we would stop at Chili's in Shakopee after the MRI for a good sit-down meal. We arrived at Children's. I didn't know what to expect, I just felt like I was walking in someone else's body. I was in a dream, a fog. I went where the nurses told me to go, did what they said to do. I watched them as they put an IV in Meghan's wrist and she fought them. I cried with Meghan...I felt her pain. I held her as they gave her Propofel, the sedative. Within a few seconds of the sedation drug, she was out. It was extremely hard handing her over the the nurse to take her back to the MRI machine. I pulled myself together, as did Jeff. We waited. We were told the MRI would take 45 minutes. An hour passed. This was taking longer than we were told and something didn't feel right.  I remember the door opening and the nurse wheeling Meghan in to the room. She looked so peaceful. I started getting her bottle ready for her so that it would be ready when she woke up. I knew she'd want it right away, as she couldn't have anything to eat 8 hours before the MRI.  As I prepared the bottle, I heard Jeff ask the doctor if we're good to go home. The next words I heard changed my little girls life forever. Well, we found water on her brain, which is a condition known as Hydrocephalus.  We are trying to get a hold of the neurosurgeon to see what he wants to do, but he's in surgery right now.  Once we get in touch with the neurosurgeon, we'll be in to talk to you. There was silence. Neurosurgeon???? I don't know a lot about medical terminology, but I know enough that a neurosurgeon is someone who does surgery on the brain. What is going on? Does Meghan need BRAIN surgery??? No...couldn't be. Meghan woke up and the nurse told us that we couldn't feed her as she didn't know if the neurosurgeon wanted more MRI's that afternoon yet or not. We walked and walked and walked with a crabby, hungry, 9 month old. We waited and waited and waited to hear what the next step would be. Finally, the nurse allowed me to give Meghan apple juice. A little while later, we were told to go meet with the neurosurgeon's nurse practitioner. She explained to us about Meghan's new diagnosis. She explained that Meghan needed emergency surgery to instal a shunt, which would drain the cerebral spinal fluid from Meghan's brain down to her stomach. When an infant has hydrocephalus, symtoms are a large head, poor weight gain, developmental delays, fussiness and seizures. Meghan had all of these symtoms, except seizures. We were in total shock. I was relieved that after an almost 10 month search for what was wrong with Meghan, that she finally had a diagnosis. But, why her brain? Why couldn't it be something simple? We walked to what would be our home for the next 5 days - the hospital room. We met with doctor after doctor, nurse after nurse. It was all so overwhelming. I couldn't comprehend what anyone was saying. I just nodded my head. All I wanted to do, besides taking my daughter and running out of the hospital, was to lock myself in the bathroom and cry. Jeff had to go back home to get clothes for us and lock up the house. We contacted everyone in our family and gave them the updates. Surgery got scheduled for right away the next morning. I don't think we slept at all that night. I remember just watching Meghan sleep. I wished that I was the one going through this, not my innocent daughter.  We were told she probably had constant headaches. Loud noises only added to that. All of this is starting to make sense. I know surgery is the best thing, and would save her life. We made it through the sleepless night, and prepared for surgery. We walked downstairs to the operating waiting room. I wanted to run away with Meghan. But, I knew her having surgery was the best thing for her. I held her while we were waiting for her to be taken in for surgery. How would I be able to hand her over to the nurse? I didn't think I could do it. We all cried. Everyone but Meghan :) I worried that she would scream as she was taken from me, but by the grace of God, she didn't cry at all. That was easier on me. I was okay knowing she wasn't screaming. We waited for surgery to be over. FINALLY, the neurosurgeon came out and told us everything went well. THANK GOD! He said she had a fair amount of pressure on her brain and that it is possible for her head size to go down just a little due to the pressure being gone, as well as the fluid. He told us we would have a whole new little girl within 3 months after surgery. We couldn't wait! We got through recovery, which went so much better than we expected. There were a couple hiccups with recovery in the hospital, but she made it and showed us how much of a fighter she is. I am truly inspired by her. I coudn't wait to get home, get back to my little boy, our new home, and wait for Meghan's new personality to appear. When Meghan was 7 months old, she was labeled as failure to thrive. But just 2 weeks post surgery, she rolled over. HOLY CRAP! We were SOOOOO thrilled. Our neighbors probably thought we won the lottery when we squeeled in excitement the first time she rolled over. Two weeks after that, she decided she could not only roll over one time, but from one end of the room to the other. Kiss that failure to thrive! The new Meghan is here and she's THRIVING!! When we were discharged from Childrens, we were told Meghan would have follow up MRI's every 3 months until she's 2 to check her shunt. Her shunt can fail and her tube can get blocked, causing water to accumulate on her brain again, so that is why she needs an MRI every 3 months. Until she can verbalize with us any symptoms of a shunt failure, she goes every 3 months.  Before we left the hospital we were told by the neurosurgeon that he wanted an image of her spine as well. Hmmm...ok. The day came to have her follow up MRI. Jeff and I felt great about Meghan's development and were sure we wouldn't get anymore bad news about Meghan. When we got to the MRI area, the tech asked why we are having an image of her spine. We were dumb founded and said the neurosurgeon wanted it. We didn't know why. She explaiend that when they image the spine, in order to get a good clear image, they usually sedate kids as the slightest movement can ruin an image. They took images anyways. We were feeling great about the visit and was looking forward to telling the NS about Meghans progress. The NS walked in the room where we were waiting after the MRI. She sat down and said the good news is that Meghan's shunt looks great and her third ventricle size is right where it should be. I know when I hear "the good news" that bad news is about to follow. Now what??? She asked us if we had ever heard of Chiari Malformation. Ahhhh...no.....why? She explained that Chiari Malformation is when the brain is too large to fit in the skull so the brain essentially gets squeezed out the bottom backside of the skull, and the brain then gets pushed down onto the spinal cord. She said Meghan also has a syrinx (fluid on the spine). And possibly a tethered cord, but didn't get a good enough image to say foresure. She said they would like another MRI of the brain and complete spine in 3 months. She will be sedated for this MRI again. They will compare the next MRI to this MRI and decide where to go from there. Two options are wait and monitor, or surgery. My head is spinning again. We weren't given much information on her new diagnoses other than the spelling. She told us not to do much research on the internet as there are alot of horror stories on the internet. True. But, I am a mother, who will do as much research about health conditions my daughter has. I want to know about anything that concerns her. What to expect, what her conditions of her daily life will be like, the success stories, the horror stories.  I think it's very important as a parent to educate yourself on anything your child is going through...especially when they are unable to talk and you are their advocate.  Her next big MRI will be October 16. Until then, we will continue to help her get stronger. Most of all, we will love her and give her support.