On growing pains

Saturday, June 14, 2014

Being a mom of two is hard. Or it is for me anyway. I had this picture in my head of how it would be.... I can't even remember what the picture was now. I think it was bits and pieces from my childhood mixed in with things I wanted and wished I had. Doesn't matter now... Life with two is different than anything I ever imagined. 



It's beautiful and amazing and spectacular while also being a never ending saga of screw ups (again at least for me.) and not living up to your potential. I constantly have an internal list of things going in my head. At various times my brain will be saying "he's important too!" Then other times it will say "she's important too!" It's a neverending feeling of being stretched too thin and being unfair to one or the other. I'm scared to think how moms with more feel and amazed by ANY mom that makes it look so effortless. 


Maybe things are different for us because we had never really planned past one. I had fertility issues and we assumed we would just have the one. I always ached to give Tucker a sibling but she was still such a wonderful surprise.


Our life with two began pretty chaotically so I should have known something was up. The Monday after I had Aubrey, we had to take her in for weight check. Well Tucker needed his 2 year old check up and had a little cough. We wanted to nip it before it had a chance to run through all of us. Long story short, he was put on a medicine that made him have roid rage. For a week we were in hell thinking we had messed everyone's lives up.... that he wasn't adjusting well and it was because of her. A sweet friend finally made the connection for us that he was basically taking a liquid steroid and after a couple days off it, he was back to normal. 


Typing that all out just made me realize something... It's funny how (in the moment) we think things are terrible and we've just messed up and are continuing to mess things up. One small thing makes such a big impact and looking back on that sweet time now, we were just doing the best we could as a very new family of four. 



I have a feeling I will look back and see that in this season of our lives eventually. But for now I'm busy hustling from one doctor's appointment to the next and desperately trying to make sure Tucker feels just as loved and attended to as always. We will weather this storm and come out stronger for it. 



 

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Neurosurgeon

Tuesday, June 10, 2014


As I type this, Aubrey Claire is snoozing away in her crib to the sound of rain falling. Heavenly. (No she's not sleeping on two pillows or with a bottle) 



Today's appointment was a GOOD one. He calmed a few of our fears. We were sure we were heading for surgery but he told us quite the opposite. He doesn't like to operate in these instances unless the intracranial pressure gets to be too high. He wants the body to correct itself. 

So. What we know now is this: 

-she has hydrocephalus. 
-she has enlarged ventricles in her brain but her brain mass is still normal. 
-she has the syrinx. 
-she has feeding and milestone delays. 

He couldn't give us a reason for her delays but only said it was in the brain. He feels like they will resolve themselves as we continue therapies and she grows. At this point we're staggering her appointments between him, her neurologist, and her primary doctor. They will all record head growth and check her soft spot. (I'm going to start keeping a notebook on it as well.) We will reassess if anything is additional is needed as she grows. UNLESS her soft spot starts bulging or we see eye issues. (Which we have been fortunate enough to not encounter yet.) 

We just want to thank everyone so much for all of the prayers. This was an answer we were hoping for but were also thinking wouldn't happen. (I was certain she would need surgery and was so upset.) Continued prayers would be very much appreciated as I start wading through getting her set up with her therapies (we're currently doing physical therapy, occupational therapy, feeding therapy, speech therapy, and early intervention.) as well as setting up our information with a case worker at our insurance company.

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Aubrey's MRI

Wednesday, June 4, 2014

This is a hard post to write. I've been trying to avoid it. Thinking that maybe if I did, we would get different results. That hasn't worked. 


Aubrey had her barium swallow on a Monday and then had her MRI the following Friday. The Friday before Memorial Day. The Thursday before her test I waited until about lunch time to see if they would call me with orders. Once lunchtime came and I got no call, I called them. They gave me the directions and I got them all squared away just as Tucker's speech therapist was knocking on the door. I put my phone up and spent that hour focusing on Tucker while Aubrey napped.


When his speech teacher was packing up, I glanced at my phone. I had a few missed calls from a number I didn't know a TON from Tommy and texts from him like crazy. Just as I was about to text him back, he called me again and I answered. While I was doing speech therapy with Tucker basically all hell broke lose. They told Tommy our insurance preapproval was out of date (?!?) and that someone at the hospital dropped the ball.... The ENT that was suppose to be there wasn't scheduled. They told him we would have to move it to June. That sweet man, he went bananas on them. (The majority of things up until this point that have gone wrong, I've been the one to deal with them) He told me to call them back and find out what's going on. I did and they said they pushed the insurance through but the ENT was still an issue. The director of the Radiology department got on the phone. I broke down. I honestly can't remember what was said. The only thing I remember is saying "she has an ENT can we call her?" They didn't seem to think that would help but said we could go ahead and try. Bless her ENT and her staff. I was a frantic mess at this point. They knew I had already gone through mess with the hospital earlier in the week and tried to help as much as they could but her ENT had surgery scheduled the next day and couldn't be there. 

Long story short... Her ENT fought like hell for us and called every single doctor involved or thought might be involved and went over Aubrey's case with them. Seriously. She's an amazing blessing. Because of her, we were able to get the MRI. 

My Mom took it a step further. I found out who would be in anesthesiology that morning and she went and talked to the doctor there that evening. The next morning when we got there, she went and found one of the doctors and talked to her as well. She was the one who came and did the test. (We are so thankful for her, too) 


Aubrey couldn't eat after 2AM this time. She was not a happy camper. She woke up for the day at 3AM. Her brother decided to tag along as well. After an hour of her crying, I finally got her to sleep for about 30 minutes by taking a pacifier (neither one of our babies have been paci babies) 


We got dressed and headed to the hospital. I put her in the most comfortable thing I could find. She's hot natured so I opted for a sunsuit. She looked like we were headed to the beach not the hospital. 


She was awake and a little fussy most of the morning and while we were waiting for the procedure. We were told there was still a chance that she wouldn't have it done it was up to the anesthesiologist. 


She fell asleep right before they took her back to get it started. 


The test was suppose to take about an hour. After an hour was up a doctor stepped in and said there was 45 minutes left. I thought that was strange but didn't say anything.... Maybe they just took longer to get it started. 


Once the test was over, it was like giving birth all over again. I stood in the doorway and waited what seemed like hours to hear her cry. I almost lost it when she finally let out a weak, hoarse little cry. We headed to recovery as they said "the test went well" I knew right then and there they found something. 


They told us to call on Tuesday to see if the results were in. 


We tried to have a normal weekend but I was so anxious. I was ready to know. I called first thing Tuesday morning. It was about 1 PM when her pediatrician called me back. Aubrey has a syrinx (cyst) in her spine and brain. 

Syringomyelia (sear-IN-go-my-EEL-ya) is a disorder in which a cyst forms within the spinal cord.  This cyst, called a syrinx, expands and elongates over time, destroying a portion of the spinal cord from its center and expanding outward.  As a syrinx widens it compresses and injures nerve fibers that carry information from the brain to the extremities.  Damage to the spinal cord often leads to progressive weakness in the arms and legs, stiffness in the back, shoulders, arms, or legs, and chronic, severe pain.  Other symptoms may include headaches, a loss of the ability to feel extremes of hot or cold (especially in the hands), and loss of bladder and other functions.  Each individual experiences a different combination of symptoms depending on where in the spinal cord the syrinx forms and how far it extends.  Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing or straining.

We have no other information right now. From what I understand, it can be related to hydrocephalus but it's not determined if one causes the other. We've been referred to a neurosurgeon. We were originally scheduled to see him in July but, after looking over her chart, they decided to move her appointment up. It's next Tuesday. I'm terrified but also hopeful that we can finally get her past this. 









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Aubrey's Modified Barium Swallow

Sunday, June 1, 2014

This was the first test in a week of tests for us. Our week didn't start out well. It was on a Monday and no one ever told me the instructions for her for before the test. So I called my mom frantically and got her to ask (she works as the same hospital that she had the test at.) She asked but the person she talked to wasn't 100% so I was stressing all morning that I wasn't doing something or WAS doing something that would make us not be able to do the test. I called her ENT as soon as they opened and they called the hospital to get the proper instructions. 



Her test was at 1 and she wound up not eating after 7 am. They said most babies are usually so fussy and angry by that point. Not this baby. She was just as sweet and precious as ever. 


There were 2 speech therapists who watched the procedure and they were about the cutest and sweetest people we have ever met. They doted and fussed over her and just couldn't get over her hair. 


I still can't get over how sweet they were to her. 



They sat her in this little modified highchair with towels all around her to prop her up and keep her in the right spot to do the test. 


Then they mixed up the barium and some of her milk I brought her, some water, and some pears. 


I fed her some of each while they took a series of X-rays to watch what happens when she swallows them. 


She had some issues with a couple of the things we tried. We had just started spoon feeding. Right before the procedure, they were telling me not to mix the food in her bottle, to spoonfed her. I kept trying to explain that it wasn't working that way and the only way I could get the food into her was to try feeding her first and then putting the rest in the bottle so she could get some. After the test, they told me not to spoonfeed her that mixing them in the bottle was ok. She can have water but it has to be in a newborn nipple and she did the best with her milk thicken with food. 

They also referred us to occupational therapy, speech therapy, and feeding therapy. When she spoonfed or drank water from a nipple for her age, she aspirated it and started choking and coughing (which we already knew she was doing we just didn't know why) and we could actually see it go into her windpipe. 

We'll start all of the new therapies next week. Next up.... The MRI!



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Current Favorites-- Tucker Avery

Monday, May 26, 2014


(These are his "flap flap shoes") 


This fella? He melts my heart 95% of the time. The other 5%? He's up to no good and doing things that make me become the bad guy. 

He's at such a cute, fun little age that I want to remember some of the things that are so important to him. 

Right now, he's loving: 

-"choo choos" 

- Spider-Man (but he makes the web slinging noise to "say" it) 

- Reading pretty much any book he can get his hands on. 

(He fell in love with "yee haw, yee haw" at the doctor the other day. They let him take the cover home because the inside was ripped to shreds. That was the best part of his day that day. Hands down) 

- Singing. "Itsy Bitsy Spider" (makes a hand movement like the spider going up the spout) "tinkle tinkle" (twinkle twinkle) and "suhsign" (sunshine) are some of his favorites but he also knows "Patty cake" and the movements as well as the movements for "I'm a little teapot"

- Routine. He's such a little creature of habit. He's really thrived since we set out to focus on his bed time routine every night. He sleeps in his own bed for most of the night now! 

(We read the same books every night but his speech therapist said that it's great for him. This week, we started pausing before we said some of the words. We have been so tickled to find out some of the words he knows in the books. "Fret" and "moan" are two of my favorites!) 

- his grandparents. All three of them but Pawpaw especially. 




For the most part, he explores but he also likes to keep things the same. His best days are days where we follow our routine. That's been hard with everything going on with Aubrey Claire lately but, he's taken it pretty well considering. 


He loves that sister of his HARD. But he's also gotten to a stage where he gets frustrated at her and lashes out at her pretty quickly. I (personally) believe he just knows something is up. He so badly wants her to play with him and it makes him angry that she can't. He has such a soft heart. 


This boy of ours keeps us guessing and we certainly do love him. 









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All About Aubrey--- Medical Edition Part 7

Wednesday, May 21, 2014

After my last post, I really just needed to step back and breathe..... to get through some of the appointments we had scheduled. It's frustrating for us. We're at a place right now that it seems like every time we see a doctor or have a procedure done, doctors on her case seem to multiply. We were exhausted... we still are. In the past month, we've been to a LOT of doctors but we've also switched up some doctors as well.

I'll start from where I left off....

After the MRI didn't happen. We were told to go to an ENT to get her checked out. We were lucky enough to get in with one of the best ENTs in our area. Everytime we tell someone who our ENT is, they talk about how wonderful she is. We're thankful for that.


We had a scope done that day to check for laryngomylasia, check her adenoids, and her sinus cavity. We wanted to make sure all of that was ok before moving to the next step.


She actually did pretty well getting the scope. Everything was clear. We got referred out to a geneticist and also got a swallow study scheduled. 


We continued on what we were doing and FINALLY had another appointment with the neurologist. I was looking forward to this appointment after they rescheduled it on us twice. It was one of the most horrible appointments we've ever had. EVER. 

If you ever wanted to watch two babies literally meltdown before your eye, let me know..... I can get you in touch with this neurologist. 

AFTER ONE HOUR:



AFTER TWO HOURS:



I got so frustrated. I've never had to wait that long with kids before at a pediatric specialist. So I went out to the desk and asked politely about how much longer it would be. I knew they could hear them literally breaking down in our room. Apparently that made the neurologist upset. Within ten minutes he came storming in and just disregarding everything. I had already had a bad experience with this doctor but this put me over the edge. We are ABSOLUTELY NOT going back to him. 

As soon as we left that appointment, I called her pediatrician and told them what happened. We were suppose to be referred to a new neurologist a few weeks before ANYWAYS. They told me to call the new neurologist to try to schedule an appointment. I did and got even more frustrated. They couldn't seem to find the referral. We really loved this pediatrician. But time and time again, we have had issues with test being ordered, referrals being made, and follow up. (Seriously, I had to drive about an hour each way to pick up orders from their office to make sure her MRI was seamless.) 

The more I thought about it, the more I realized that no matter how much I loved the home-y feel of his office, Aubrey has "issues" and I don't think he is the right fit for her. We need a pediatrician that will be proactive. We decided to make the switch again. This is our third pediatrician. 


This office is much different. It's a mix between her first pediatrician's office and her second. (A little backstory... Their current pediatrician was my pediatrician when I was little. She was also Tucker's first pediatrician before we moved. She was very proactive with him since he was premature and that's exactly what we feel like we need for Aubrey.) 



We were in her office for a good three hours. Only about 15 minutes of that was waiting and filling out paperwork. She listened to everything that's been going on with Aubrey, all my frustrations, and what I expect from her. She was a breath of fresh air. We've been trying to get the results from Aubrey's cranial ultrasound for MONTHS. Within about 15 minutes she had the results, printed them out, and was sitting next to me while we read them.... together. 

Aubrey does have hydrocephalus. But we are thankful because it's Benign External Hydrocephalus. While there is no treatment, that also means no surgery. That's one of the things that terrifies me the most. We've been told it should resolve on it's own. We were given the "ok" to give her solids (no, she was more like "FEED THAT BABY SOLIDS!") and were told to continue on the path we're going down. We go back in a month for weight and head measurements. She's off the charts for both. She's a big baby and we love her so. 

Her new pediatrician also sent a referral to the new neurologist we've been trying to get in with. They called me TWO DAYS later. (Our appointment is with them in June.) This confirmed we made the right choice switching pediatricians. 


We've been continuing our weekly PT appointments, have started the process to get into Early Intervention, and are waiting for her next round of test. We are thankful that we can see His hand in this each step of the way. 






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Easter 2014

Tuesday, May 20, 2014

Our Easter was pretty laid back and uneventful this year. I loved that though. Originally I had planned for us to go to church somewhere, dressed in our Easter finest, and then celebrate with a huge spread of food. We did have a nice spread of food. But we mostly just hung out in our pjs all day and I watched "The Passion" while the kids and Tommy took a nap. It's still such a powerful movie.


We had a great pancake breakfast. They are this fella's FAVORITE. Who am I kidding..... FOOD is this fella's favorite! 




We also dyed Easter eggs as well but he was just worried about when he'd be able to get that boiled egg in his mouth. (Told ya, food's his favorite!) 


(He also needs a haircut) 


The Easter bunny really worked his magic this year. Lots of fun things for outside fun. Bubbles, kites, chalk, sand toys, water toys, swimsuits.... ALL kinds of things. 



It was just an all around sweet day for all of us. :) We hope your Easter was just as wonderful.








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