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.
One year ago, I was at the Pumpkin Patch with my older girls and my parents. We had a lovely day exploring the farm, picking out pumpkins, and taking hay rides. It was so much fun, and such a great family outing. But someone was missing - Meagan. At the time, she was still in the NICU at Children's Hospital. Though I'd had a great day with the family, it wasn't right not having my kids together.
This year, the weather was cold. FREEZING cold. Windy. And grey. But it was even better than last year's sunny day....because our whole family was together.
Meagan's Godfather, Uncle Mike, just happened to be at a nearby base finishing up a course for his next Army tour... so we were very lucky to have Aunt Katie and her girls join us at the pumpkin patch! We have really enjoyed having them around!
Meagan got to do a lot of firsts this Fall. First trip to the Pumpkin Patch. First bite of a homemade pie. First time seeing farm animals in person. First bumpy ride over the pumpkin patches. And her first hay ride!
While we complained of frigid hands, Meagan took in all the sights and sounds of her surroundings. While we complained of the cold wind gusts, Meagan seemed to not mind at all. Matter of fact, she seemed to love the wind! She would laugh every time it would gust... and we did too because it gave her quite the...uh.... interesting hair style.
Meagan even got to pick out her own pumpkin. She spent a lot of time checking out the new textures of the pumpkin. It was a perfect little pumpkin, just like her!
So our Halloween traditions commence again. Homemade chili. Hot spiked cider. Treats for the kids. Dinner with our dear neighbors. And some trick or treating fun!
We have had quite a breakthrough these last few weeks. I didn't want to write anything about it because last time I did, Meagan stalled. And reverted. I feel *fairly* confident, though, that this skill is here to stay. We have had almost 2 weeks now where Meagan is starting to EAT.
One day a few weeks ago, Brian made spaghetti and meatballs for dinner. Meagan seemed interested in what we were eating. To this point, she hadn't shown much interest in baby food so I thought "why not?" I took a little piece of the meatball and put my hands to her lips. Normally, we have to fight to get any food into her at all. But, to my surprise, she opened her mouth and took it from my hand. When she was finished with that piece after a few minutes, she looked at me as if to say "Hey mom, where's my next piece?" I put my hand near her mouth again with another piece of food, and she opened again. It is like something has suddenly 'clicked' or 'woken up' with Meagan's eating. I have been working with her since April with no progress. We started feeding therapy last month with no progress. I am so happy that at 13 months old, Meagan has finally decided to try.
Since that night, it's been nothing short of a complete 180 degree turn with her eating. More importantly, in my opinion, is her interest in food. She seems to want to try anything we eat. Since that spaghetti and meatball dinner, she has had little bits of everything we eat for our meals. I figured, why wait now? She is interested in food, so why not just dive in? We are even venturing into puffs and yogurt bites that melt very easily. She seems to be doing well with them so far. It takes her (literally) about 2-3 minutes to finish one, but one is better than none!
Some of the foods Meagan is trying one at a time. These are two of her favorites.
We got silly one morning and made Meagan her own pancake to celebrate. She didn't eat much of this (the texture was a bit thick for her)....but it sure was cute!
I'm excited where this new interest may lead Meagan this year. Strictly speaking about volume of food, we have a very long road to go. She still can manage only about 4-7 "bites" of food per meal,which of course, is nowhere near what she needs to sustain herself. I'm on pins and needles to hear her weight tomorrow at her next check up. But I'm hopeful that we will see her stamina and ability to eat more and more bites increase over the next 6 months, and start to put on weight. It is exciting to watch her try new things; to open up a whole new world for herself through another set of senses with tastes and textures..... But best of all, it is exciting to know that doing all that, she is HAPPY.
Meagan went for her third stem cell infusion at Duke Children's Hospital last week. It was a crazy hectic week leading up to the trip, but we managed to pull everything together with the help of family and friends and make it up to North Carolina on time.
Not too far from Duke, my good friend Lori's daughter was in a skating competition. Since the location was so close, we figured it would be nice to go watch her in a few events in between our obligations at Duke. We enjoyed having the break and being a mini "cheering" section. Meagan also got a "good luck" snuggle from Lori.
Brian's sister and her family live about 2 hours from Duke University, so after the skating competition we headed to their house to drop off Maura. They were nice enough to offer to keep her while we were at Duke with Meagan. That way she could just relax and play and we could focus on Meagan while in the hospital. Maura also enjoyed seeing her cousin who is her same age.
Meagan checking out her cousin
Maura had so much fun staying with her cousin
We had the infusion day routine down by this point. It was a gorgeous sunny week last week for the most part, so it was nice to have a hospital room next to an outside window. In the down time, Meagan enjoyed playing with her toes and having some quality time with Daddy.
Meagan also made sure to have her "special" items nearby. Her blanket from her Godfather and her little elephant from her Godmother. Both items have been with her since the NICU!
June, the nurse who works with Dr. K in the stem cell program, was so happy to see Meagan again.
One of the best things about the study Dr. K runs, is that she is always concerned with the whole child. As I've mentioned before in other posts about Meagan's infusions, they always have a music therapist on site to soothe the children while they get the stem cells. It serves as a calming mechanism, and also a distraction for the children from any pain or discomfort they may feel. Trey, the music therapist at Duke Children's, came by for a visit to say hi to Meagan again.
As soon as the cells were thawed, June, Dr. K, Trey, and other nurses came in to start Meagan's infusion. Meagan is normally a really hard stick, but Dr. K managed to get her on the first time. Also, Meagan normally cries the minute a nurse or doctor walks into the room. This time, she did not make ONE sound. Not even while getting her IV. She just stared at Trey and listened to the music. It was the most calm I have ever seen Meagan in a medical setting. I couldn't believe how well she tolerated the procedure this time.
Once Meagan was finished, she was hooked up to fluids to make sure she didn't become dehydrated. Within a few minutes, she was completely passed out asleep. She must have been exhausted and had a really good nap.
Meagan was passed out - she was in a deep sleep!
Waking up after her sleep
Dr. K came back in to check on Meagan. She looked great so the fluids were unhooked and we were free to go at that point! We had to watch Meagan that night, and call in the morning before we left to let them know she did fine. We also got a follow up picture with Dr. K. It was almost a year from the very week of Meagan's first infusion, and first meeting with Dr. K.
Meagan did great! She was such a trooper through the long trip and an even stronger girl through the whole procedure. Everything, for the most part, went as expected. But there was one thing that was a nice surprise... and some very good news! Dr. K told us that Meagan actually has enough cells for a fourth infusion! We are very excited at this prospect. Meagan is due for an MRI this winter - after those results are in, we will have a phone conference with Dr. K and her team and go from there. We may do a fourth infusion sometime this year, or we may save the remaining cells in case there is ever a setback in the future.
I do believe the stem cells helped Meagan's vision immensely after her first infusion. After her second infusion, I didn't see anything as drastic as her vision improvement, but, I did notice her becoming much more social and alert within the first 2 weeks afterwards- trying to smack her lips, being more attentive to human voices and communication, etc.... This time, I am very happy how things have been going since we've been home. I'm not going to say anything just yet because I don't want to spoil it, but, I do see some exciting things in a few areas...all of which are brand new since her latest stem cell infusion last week. Hopefully these new things continue and we will have a new update soon. In the meantime, it's back to reality and catching up on laundry and other things that fell behind while we were away at Duke.
Meagan says thank you for all the help and prayers!
Meagan's hospital stay 2 weeks ago took a lot out of her. She has obviously been more tired than usual and in some ways, even still seemed to be recovering this week. Because of her fatigue, I'd been letting her rest more than I usually would physically, and spent a lot of time talking to her and working on communication. She continued to seem pretty serious, and I was getting a bit concerned what her change in mood meant.
Meagan smiles on demand. That is just "her norm." So it is a great tool to gauge her mood or if something might be bothering her. Whether it's a good thing or bad thing bothering her always remains to be seen, but, it is a good indicator for me. If she isn't smiling as much, I know to keep a close eye on her. Well, this was the case last week. Even when I would get down in her face and talk to her, there would be no "happy" reaction, which was very different than what she'd normally do.
A few days after her "stoic" appearance, I noticed her playing with Reilly. To my surprise, this is what I saw, so I grabbed my camera:
I was so excited to see her trying to clap! I couldn't believe she was trying to copy Reilly. Because of this, I started to play "Patty Cake" everyday with Megs. I would ask her, "Meagan, do you want to play Patty Cake?" .. and then I would take her hands, and clap them together in between mine. Following that she would usually clap them together herself a few times. I could see her mind working every step -- 'move arms outward, extend fingers, bring arms close together, touch hands together with a more rapid movement than normal, repeat....'
Imagine my surprise when yesterday, I looked down at Meagan lounging in her Nap Nanny.... I said ":Meagan, do you want to play Patty Cake?" Before I could reach and grab her hands, she looked up at me. I could almost SEE the process going through her mind again....and then she picked up her own hands and clapped them together! She did it on her own. In response to my voice command. This was big. Meagan was showing me she could hear something I said, and relate it to an action she could do.
So Meagan has been serious this week. But I guess she's just been seriously concentrating on learning Patty Cake! I feel incredibly thankful for this moment. God keeps dropping little surprises in our life through Meagan's progress. It may seem small to some, but every little step, is a huge leap for Meagan. I know she will continue to surprise us in her own ways and in her own time. Until then, I guess we'll be putting our hands together and playing a lot of Patty Cake!
We finally had Meagan's "official" 1st Birthday party today! We put it on hold for 3 weeks after her 'real' birthday just in case she wasn't feeling well after surgery. After last week's impromptu hospital stay, it was a good thing we planned ahead for any possible delays. She is doing much better - she was feeling badly again Thursday night and the start of Friday. I was a bit worried we were going back down the 'not feeling well 'path, so I cancelled my teaching for the rest of Friday so I could just be with her and let her rest. It turned out to be a good idea because she slept a lot, and woke up this morning in a good mood. She was definitely more tired than normal, but, it was obvious to me she was feeling a lot better than the previous night.
The day was filled with lots of food, decorations, fun, laughter, and friends. It was such a nice culmination of Meagan's first year because we had a wide variety of people attend the party; representatives from both sides of the family, old friends we'd known for years, new friends we'd met this year through a Hydro support group, and our dear neighbors we have grown close to over the last 5 years. It really spoke to what a blessing Meagan has been to us and to all... to have such a wonderful diverse group of people all gathered together to celebrate her 1st year of life.
The older girls and some of the other kids had a blast jumping on the moonbounce we rented, and of course everywhere you looked there were pink decorations. Garland, lanterns, and balloons adorned our deck, screened porch and kitchen areas.
The weather was perfect... sunny, 80 degrees, and sometimes a slight breeze in the air. There was lots of good conversation, and hearing everyone sing "Happy Birthday" to Meagan was such a sweet sound. Meagan even explored her birthday cupcake and made a mess with the frosting.
All in all it was a great 1st Birthday party for a pretty great girl.
This morning, Meagan woke up with no fever. And we held off giving any Motrin last night, so I knew for sure that the fever was probably gone. She was still really fussy, but at least she wasn't as hot. She had a few of her 'typical' seizures the previous night, but nothing out of the 'norm.' However, this morning, I actually called the nurse in because Meagan had a different type of seizure. She laid on her side and was staring up at the ceiling. I assumed she was staring at the light, but when I got out of the bed, she didn't budge. I walked to the side of the bed and got right in front of her face - I called her name and smiled at her and made noise.. she didn't look at me. Then I put my hand on her shoulder and shook her saying "Meagan, Meagan...." ... nothing. After about 20 seconds went by, I picked up the phone and called the nurse. At this time, Meagan's head started to shake back and forth. It happened like that for about 10 seconds, and then the shaking stopped. She was still out of it when the nurse came in. A few seconds after that, she seemed to focus again and responded to me when I touched her. It was so scary. I have never seen her that "frozen" in a seizure. She was not happy afterwards, and ended up falling asleep for a few hours. The nurse logged it and called Meagan's Neurologist. He decided to up her seizure meds and gave us a new prescription.
Despite a shaky start to the morning, the rest of the day was relatively uneventful. Since an infection had been ruled out, and any shunt issue, the only thing left was the flu test and viral panel. Meagan tested negative for all. So we were left with the fever with no origin. I really hate mysteries when it comes to my kids.
Fever gone, but still acting uncomfortable
\
We were set for discharge, but then I was told they actually wanted to keep us in the hospital for a few more days because of her eating. Meagan had dropped weight again, but, who doesn't when they aren't feeling well. And, we are staying on top of her weight issues with the GI doctor, Pediatrician, and feeding therapist. The nutritionist and nurses were really concerned about it and didn't want to discharge us because of it, but, after talking with them, I assured them we were on top of the eating/weight issue, and it was just "Meagan." We had her in the proper therapies and care, and we had already discussed a G-tube if eating did not improve greatly in the next 4-6 months. Based on that conversation and a recommendation from our Neurosurgeon's office, the hospital was ok with us getting our walking papers. I realize she isn't 100%, but, there was no serious matter keeping us at Children's anymore since those had all been ruled out, so I felt coming home is the best decision and am glad the hospital complied.
Although the fever is gone and her soft spot sunken in once again, Meagan still is not quite herself tonight. She is very fussy. She is extremely head sensitive, and cries at everything. I'm hoping she is just recovering from a very strange and uncomfortable weekend and we'll see improvement in the next few days. I will be watching her closely, but, considering she still feels cool tonight, I think we have officially kicked the fever out of the door. She is doing some of her normal things like grabbing her feet, but is also very sad at times. After a weekend like hers, it's certainly ok to be out of sorts for a few days! Hopefully in the next day or so, I see my good ol' Megs return. I'm sure I will.
- Meagan is having more wet diapers.
- It seems (knock on wood) Meagan's fever has broken... it is hovering around 99-100, and we are past her does of Motrin.. so hopefully we don't see anymore spikes.
- Meagan's swollen spot has softened a little bit - so the Neurosurgeon's theory about that being caused by the increased ICP (inter-cranial pressure) from the high fever seems to be consistent, so far.
- Meagan is having moments where she is calm or having more of her personality come through.
Now the "interesting" news:
- More blood-work today showed normal, so no obvious signs of infection. Her CRP is .9... which is technically 'normal' because anything less than 1 is normal, but, it is on the edge. It was .7 on Saturday. So it still perks my suspicions whether we got two readings "within" normal, or whether this is the start of a rise.
- Although the fever is lower, she is still very fussy overall. She is still very sensitive to her head being touched or positional change. She does not like light in her eyes.
- She is actually eating less than she was the last two days. She has barely had 4 oz from a bottle today... she has nursed 3 times today but only for about 10 minutes max. This is not normal for her. It seems like it is uncomfortable for her to suck.
- Twice when she's been sleeping today, her resting heart rate has fallen into the 60's. (normally, her resting rate is in the 90's). Also, she had a few desats that were longer than 5 seconds..when she was absolutely still.... this is abnormal for her as well. These coincided with her low resting heart rate. Sometimes, these things can be consistent with increased ICP, so I'm wondering if that is the case.. or just a fluke.
Fever is lower, but this is not a face of someone 100% better
So, we are left with improvement in some areas, but still no answers, or plan. They did a flu swab as a last shot, just in case, even though she's already had her flu vaccine and is showing no other symptoms. Dr. R did stop by again... he was relatively confident we have ruled out shunt infection, but not 100% sure. He was happy the bloodwork showed normal, but still feels something is off. He is going to let Meagan rest and stop by in the morning to see her.
Honestly at this point, I wish they would tap the shunt. Tapping the shunt requires taking some CSF out of her shunt and testing it for infection. It is risky, in that you could possibly introduce new infection into the shunt tract when the sample is extracted. This is why Dr. R was resistent to do it this morning. However, with everything being so 'strange' and having no clear answer as to what is bothering her, I think the tap is worth it. We are here. She is already admitted. Might as well cover ALL bases, in my opinion, before letting her go home. Dr. R sounded like he wanted to let her go home tomorrow, so we will see if they do the shunt tap or not. I'm definitely going to ask about it - I already let our nurses know today I'd feel more comfortable knowing the CSF was clear.
One nice surprise was a rep from FOCUS (Families Of Children Under Stress) stopped by. She brought Meagan a cute pillow pet and brought me a Mary Kay bag. This was awesome because I had JUST been thinking about how I couldn't believe this one time we actually get admitted for a long period, I hadn't packed my emergency bag. So I enjoyed a nice shower and getting all cleaned up with my new Mary Kay bag. It's funny how things happen like that. Thanks also to all the family and friends who have been communicating with me...helping me pass the time in the hospital, helping get the kids to and from school, and helping in general with things from bringing coffee, all the way to talking with me on the phone and being supportive.
So that's kind of the recap of today - not really "eventful" but not really "all better" either. I wish we would have an obvious sign there is truly a shunt problem tonight, or she just suddenly gets 100% better and we are absolutely sure she's ok. This middle of the road" is very frustrating! I of course would rather the latter - I want her to feel completely better...I don't want anything to be wrong.. but a clearer answer is what I'd like more than anything so I can feel completely comfortable taking her home tomorrow.
