Our 5th daughter, Meagan, was diagnosed with severe Congenital Hydrocephalus at our 20 week ultrasound. Her story has propelled our family on a new journey. I hope to keep track of Meagan's story here to help other parents who may face a Hydrocephalus diagnosis for their child, and to celebrate Meagan's life.
1. We met with Dr. W today (the Pediatric Plastic Surgeon and Craniofacial specialist). We originally were supposed to go on August 9th, but his office called last week and said they'd like to see her today after speaking with Dr. R (Neurosurgeon). Dr. W. examined Meagan's head, went over her scans and notes from Dr. R with us and said that, like Dr. R had suggested, sooner is better than later. We met with his assistant who was able to schedule Meagan for September 4th. We go for a pre-op appointment on August 30th. So, surgery date is set. We now see Dr. R on Wednesday to finalize details.
2. More importantly, Meagan is 10 months old today!! Where does the time go?! It is flying by. Happy 10 months Meagan Theresa! You are such a joy!
First pair of shoes - size 1's and SO cute!
10 months old.. and I think her hair grew again overnight!
Meagan had a weight follow up today. She is holding steady at 14 lbs. at 10 months old. It is still in the 1% for her age, but that is just Meagan. I love her Pediatrician. She is very careful to follow Meagan closely, however, she doesn't panic from numbers on a page. She said yes, Meagan is tiny for her age...however, she is not unhealthy. She is not "undernourished." The Pediatrician also said that this may be "just Meagan"... slow and steady. She did say she wants Meagan to go ahead and have the swallow test now, because she is still gagging/spitting up milk at times, and also has regressed in her solid food attempts. The few times she has licked food off the spoon or taken a little from a feeder since the day I posted about her eating a few weeks back, she has gagged and even spit up milk she already ate at an earlier time. (I shouldn't have jinxed it by posting about her eating! Oops!) We will need to work with a Speech Therapist to help her get onto some sort of solids, if possible, but before we do so, we need to know if we are dealing with a developmental issue, or an actual physical problem. They were very good at working her in and so she will go for her swallow study on August 3rd. It will be very helpful to see if Meagan actually has swallowing issues so we can move forward in the best way possible with food and eating.
In other news, Meagan did get some new gear! The first necessary item was a Nap Nanny. Meagan doens't tolerate sleeping on her back, so she has slept in her bouncy chair from the day she came home, October 26th, until 2 nights ago at almost 10 months old. Although she's small for her age, she really did outgrow the bouncy chair and we needed a new sleeping arrangement. We tried the crib again, and to no avail. We knew about the Nap Nanny and it's softness and inclined position. I had mentioned it to my sister in law when she was visiting. The day she left, a package shows up at my door.... it was a Nap Nanny! (Thank you Aunt Katie and Uncle Mike - Meagan's Godfather). So for the last two nights, Meagan has napped and slept all night in complete comfort in her new digs... and she loves it!
The second item was a high chair. Even though she is not eating foods yet, she loves being around people. Having 4 older sisters, who are constantly eating, we are often in the kitchen. Whether it's fixing snacks, meals, cleaning, or putting away dishes, we spend a LOT of our day in the kitchen, so we don't want her to miss out on these social times! We had a spacesaver chair we could strap on to any chair that worked fine for our other kids. It would have worked fine with Meagan too, except that in our size family, we need almost all our chairs. We decided it would work better to have an actual high chair so we weren't constantly moving her seat on and off when we needed to eat dinner together. Nanny took Meagan to the store and she picked out a great high chair. (Thank you Nanny!!) We got it set up last night, and she seems pretty happy in it!! So now when we have family times in the kitchen, instead of being on the floor in her bouncy chair, she can be up high with the rest of us, looking around, and enjoying a new view!
So now Meagan has some cool new gear to enjoy her days hanging out with her sisters. She already seems to love her Nap Nanny and her new view from her high chair, so we are very happy about that! Hopefully the swallow study will give us some clues as to why she is struggling so much with food so we can have a productive follow up with her GI doctor. While we "weight" around for those results, we will continue to enjoy watching Meagan look around from her new view at the table..... and as far my view goes, I could never tire of looking down at her and seeing this snuggle bug right up next to me where she belongs:
The most amazing things are shown to us through the eyes of children. Witnessing interactions between children remind us of the joy in life, and the innocence of childhood. Meagan's little cousin, Claire (6 months old), is visiting this week. Meagan was laying in her bouncy seat, when Claire crawled over to her. What happened next was the sweetest thing I've seen in a long time. Kids are amazing. Watching them communicate is so special. There are no words.
Today Meagan had her Neurosurgery follow up with Dr. R. She had a CT scan first to look at brain development and also do a 3D reconstruction of her skull. She has been severely overlapped for some time now. As you know from before, her shunt has been changed several times to try and avoid this, butwe just never found the perfect setting for her. Even half a setting higher, and she would poof fluid from between her skull bones, her soft spot would bulge and she would be miserable. We have had her set on a flow that was a bit fast, but seemed to work for her. She was happy, eating, sleeping, and her fluid was draining well allowing for good brain growth. Unfortunately, the "side effect" of not finding the perfect setting was having hers suture overlap, increasing the risk of premature fusion of the bones. It also made her NSG monitor her closely to make sure that the faster flow didn't leave her with slit ventricles.
After her CT this morning, we met with Dr. R. at his office. He explained everything to us. As far as brain growth, tissue is still "fluffing out," slowly, but still fluffing....which is a good thing. However he did notice her ventricles looked a bit small for his comfort level. Of course we want her ventricles to shrink from where they were, but, this was a drastic change in a very short amount of time. Just from June 28th to July 11th, her vents took a sudden dive and had a significant decrease in fluid. Dr. R was not comfortable leaving her shunt flow where it was due to this sudden decrease. He said we would try turning up her shunt pressure again and see if we could put a little more fluid in the ventricles to help them stay at a healthy level. After he adjusted her shunt setting, we talked a little bit about the structure of the brain. There is still a lot of crowding at her craniocervical junction (back of her brain) as we discussed before. We are still going to watch that for now.
Finally we talked about Meagan's head configuration and her overlapping sutures. Unfortunately, Meagan's coronal and sagittal sutures have fused, and the metopic suture is also completely fused. Dr. R said that surgery is necessary due to her secondary synostosis. (Read about the surgery here: http://www.pedisurg.com/pteduc/craniosynostosis.htm) The scan even showed where her shunt catheter is now pushed across the midline, and we don't want the pressure of the fused skull to have any chance of moving or dislodging it. Dr. R said there was no need to rush into surgery next week, but he suggested because of Meagan's potential brain growth, and the fact that more than one area is already fused, we move sooner than later to prevent any stalling of progress. He also said since she will need it done, he prefers we do it younger than letting her get older because the bones will be softer to work with now, and there will be less blood vessel involvement under the skull bones the younger she is. This was no "surprise" for us but I wasn't 100% her bones had actually fused. After her CT today, of course I was sure. Dr. R is VERY conservative when recommending anything invasive for Meagan, though, and because she is doing well, has always preferred a wait and see approach to other issues she has had. Another Neurosurgeon could have easily operated on her a few times now, and he has avoided that. So for him to explain the pros and cons of doing the synostosis surgery now versus later, and have him conclude we not wait, made me know it is a worthy recommondation. We trust him 100% with Meagan's care, and so surgery will be scheduled for this Fall.
We are going to meet with the pediatric craniofacial plastic surgeon this month to talk about Meagan's case and make a plan, and then see Dr. R again in August to finalize surgery plans. There is no "final date" as of yet, but it will probably be in September.
In the meantime, we will see how she tolerates this new shunt setting, and make plans to get care ready for our other kids while Meagan is in the hospital this Fall. It is a little scary thinking about the surgery coming up and how involved it is, but, it is also scary to think about her brain growth being restricted by her skull fusing too small. If her shunt position, or brain growth were not at all in question or being affected by her skull, we would leave it be and decide to decline surgery. After going over all the details today, we know this surgery will give her brain more opportunity at continuing to "fluff out" and keep her shunt catheter from being pushed on. We want Meagan to have the best life she can possibly have, and and moving forward with this, while not the 'ideal' situation, is the best thing we can do in this situation to help her reach her full potential.
Today is Meagan's very first 4th of July. We celebrate the Birthday of our great nation and remember the vision put forth by our founding fathers. As I was thinking about the main principles in our Declaration of Independence, life, liberty, and the pursuit of happiness, I began to see how they also intertwined with what I hope for Meagan's future, and for all of my girls.
To live it to the fullest. To enjoy it. To glorify God with their daily actions. To be thankful for the gift of life we have all been given, and to defend life as they become productive members of society.
To use it wisely. To use it responsibly. To enjoy the freedoms we are so blessed with in this nation. To use their freedom to do good, but also use it to freely walk away from bad choices. To never take their freedom for granted.
Pursuit of Happiness:
To be content. To find a meaningful vocation. To continually educate themselves in their faith. To realize the short time we have here, and enjoy being sisters together. To pursue their dreams and use it for good.
So Happy Birthday America!! Thank you to those who have fought and continue to fight for it. And thank you God for our blessings in this great country, and especially for my wonderful family!
Ever since Meagan's seizure Wednesday night, she hasn't been herself. Besides her right side being limp, she also rarely smiled and was extremely quiet. She slept a lot more and even when looking around, seemed more out of it. Friday, she seemed more alert, but then in the afternoon, she had two more seizures laying in her crib, and was back to being sleepy.
We left on Saturday morning to go visit Brian's parents in Florida. She was content the whole trip and didn't even wake to eat (which is not like her)! I did notice, though, that she started to wiggle the fingers and toes on her right side, when she would occasionally stir, so I figured feeling and movement would soon come back. Our first day at the in laws, I did notice her trying to move her right arm for the first time, but it would just go straight up, and then flop down again. She was still very sleepy and very floppy. When she was held, she still mostly hung there on her right side.
Chillin with Grandma
Fast forward to this morning, Monday the 2nd. She woke up smiling, has been cooing louder than a siren, and has been finally kicking her right leg up and down!! She has moved and bent her right arm, and reached down to grab her left foot. She is also responding now when I place her favorite toy, her O-ball, in her lap. She is grabbing it and feeling it with her fingers. She is back to looking around the room, and smacking her lips. I cannot believe it took from Wednesday night to Monday morning for her to return to 'herself.' She must have really been knocked out.
So happy to wake up today, to a beautiful morning in sunny Florida, and see Meagan looking right at me like she normally does. Dudley even went over to her and gave her a big ol' lick across her face (eww!). Welcome back baby! So good to see your happy little self again!