Well.. Where do I begin?
Let's rewind time to September 11. This was the day that Parker had a routine check-up with his Neurosurgeon. It had been 6 months since his last visit. He had been doing pretty good (or so we thought), so honestly I wasn't a tad bit worried. In fact, I went to this appointment alone. They changed the date at the last minute. Instead of rescheduling his appointment we decided that since he was doing so well, it would be an in and out procedure. These appointments are always in and out. No need to get all worked up about who could make it and who couldn't. In fact, I had my afternoon planned to pick up racing packets at a sports store in the mall and grab lunch with Parker after his appointment.
I couldn't have been more wrong about how this day would end.
The day started off typical. We first signed in so he could get his MRI. Now, here is where things started to get off track a bit. Myself or Casey always go back with Parker when he gets his MRI. One of us stands guard with the stroller and diaper bag, the other takes him back with the technician. Then a technician goes into the machine with him to help keep him calm. He always does a great job. In and out in 2 minutes! Because a technician goes in with him we stand back with the other technicians and see the results of his MRI as they are coming through. We aren't by any means Radiologists, but we aren't complete idiots either. This first glance of his scans usually give us an idea what his ventricles look like. Most of the time, to the naked eye, they don't look too different.
Well, this time the technician looks at me and asks if I want to get in with him. I had never seen her before and she wasn't playing around. This lady was in a hurry and wasn't offering to go in with him. So, I don't hesitate. I didn't want him to be frightened, so I stripped off my jewelry and hopped on top of the table to go in with him. Frozen soundtrack and a set of earplugs later we were getting the scan.
So...obviously I was unable to see the scans because I was side kicking it with Parker...
After his MRI we went to meet with his Neurosurgeon. My experience with this office is that we are in and out, quickly. They are very busy balancing patient appointments and procedures and typically don't make you wait. Today, however, we waited for 45 minutes.
"Have you seen him yet? What is going on? I am on pins and needs," Casey text.
I replied, "I know I literally have no clue what is taking so long. It never takes so long. He must be really backed up with patients today."
As a mother of a toddler I pride myself on creative entertainment. One can only entertain a toddler so much in a Neurosurgeon's exam room. They don't even have real beds...! So, cups and odd tools it was!
Finally I could hear a knock at the door...
First words out of his mouth were, "Where is your husband?"
I look at him and reply, "Not here."
"He's not here," the doctor said.
At this point I am like okay, what is going on here. Commence bad gut feeling...
He sits down and says he that he just went through Parker's entire file. Note, he has not been at the university hospital for an entire year. He was actually at another hospital doing a fellowship and we were seeing an interim doctor. I never really clicked with the interim doctor and was so excited to have our original surgeon back. He knew I was emotional and at times crazy, but took Parker on anyway. Brave man. It took me two months to get our appointment switched to this surgeon from the other. I just had a feeling Parker needed to be under the care of him.
"Okay. I am going to let you tell me what's been going on and then I'll give you my thoughts," he says.
I was a little confused because I wasn't really sure what was going on that I needed to talk about. He must have noted my confusion and then brings up all kinds of issues we were having with other specialists at the hospital. He seriously read through every single note from every single doctor I had talked to since he had been gone. God love him.
So, as Parker is literally ripping the office up, we talk about all of the appointments and phone calls that went on throughout the year.
Here are some of the highlights:
- MRI in December 2014 indicated ventricles were at a very low state - almost too low.
- Hospitalization in March 2015 because of unknown excessive vomiting - MRI at that time indicated ventricles tripled in size - they were however on the "normal scale" and no intervention was needed at that time.
- March 2015 (2 weeks later) - MRI at that time indicated ventricles were a tiny bit bigger. We were told this could be Parker's new norm.
- June 2015 - Parker has significant developmental delays and is red flagged at a Neonatology appointment. We were referred to the Center for Disabilities and Development at the university for assessment.
- July 2015 - Parker begins having "zoning off spells". I contact his Neurologist and we were to talk about a possible EEG and MRI. No one from the office called to schedule and I did not aggressively seek to make this appointment. The spells went away. (side note: feeling pretty guilty about this)
- August 2015- Parker begins regression developmentally. He loses balance and easily falls many times throughout the day.
- September 2015 - Parker begins to lose balance more frequently and starts zoning off spells again. He wakes many times throughout the night.
I look at him a little bit overwhelmed by his take on the timeline.
"When you put it that way, yeah, I guess there has been a lot going on...," I say.
He replies with, "Let me just watch Parker for a couple minutes."
This was kind of awkward. Was I supposed to be a silent bystander in this period of observation? He clearly doesn't want me talking. I am a nervous talker and Parker's Neurosurgeon is a studier. Not a super good combination, but I did my best to shut up. He has moments of silence where he is just thinking. I do my best not to act weird or awkward. This was seriously the longest 5 minutes of my life.
Of course during those 5 minutes Parker is falling all over the place and acting as rotten as can be. At this point he had been in the tiny exam room for over and hour and I can safely say was over the entire experience. Cheerios and Kleenex are flying everywhere - at one point he was slapping his surgeon's shoes. He even went behind him and started flapping his white doctor's coat. My god this child.
So, then the Neurosurgeon pulls up all of Parker's MRI scans to show me his measurements. Sure enough, his ventricles were getting bigger. Knowing how crazy I am he even got out the good ole measuring tool on the computer to prove to me that they were bigger. At this point in the game he said it was his belief that the valve in his shunt malfunctioned back in December, hence the huge variation in the size of his ventricles. So, his best guess...the valve was broken.
Which means brain surgery to repair it. You've got to be kidding me! Commence tears!
"I mean he has to have surgery? Are you sure? I don't know what to do," I wailed.
He replies, "Look. It's my best guess. There is a lot going on and in six months we are going to wish we took care of it now. It's not super common to operate when a patient isn't showing shunt malfunction symptoms, but with Parker, we can't take many chances."
"So you would do it?" I ask.
He said, "Yes. I would do it. I can do it today even."
"What! No. NO. I cannot do this today. I don't even have a clean pair of underwear packed," I cried.
<Why that came out of my mouth I don't know. Moments you can't take back...>
He then said that he didn't want to wait long, but, if his Shunt Series x-rays came back normal we could wait a week. So, I agree and we go get his x-rays. These x-rays show the shunt and all of the tubing that goes down into his abdomen. Typically doctors can see if there is a kink or some level of disconnection.
They came back normal. Whew.
The doctor then says he is going to do all of the pre-op tests while we are there. So, I went on a mission through that entire hospital for x-rays, blood work and a physical. The highlight (I say this with complete and utter sarcasm) was probably getting a urine sample from a toddler who wears diapers. Like, are you kidding me? Wow. That was interesting. They taped this little contraption over his "man parts" and we waited.
And waited.
And waited.
Eight ounces of juice and 30 minutes later he tinkled like less than an ounce. What-ever! I say it counts! Peace!
Next thing I knew the doctor popped back in with a consent form. This is real life. When they hand you the consent form it's serious and it's happening. He went through all of the risks that I was unfortunately very aware of. One of them being a shunt infection...
I signed my name and that was it. Parker was scheduled for surgery.
At this point we had been in the hospital something like 6 hours. Everyone close to me was frantic and trying to help in any way they could, knowing I was there alone. I was really fine, though. Oddly enough I was okay. I had a couple meltdown moments, but overall, once I had a good cry, I was just hell bent on getting through those pre-op appointments, getting Parker lunch and changing his diaper. I needed to get home and talk this day over with Casey. Casey was aware of what had transpired and was also freaking out.
I cannot tell you how well Parker did. He is a scheduled child, almost to a fault. If you mess with his schedule, watch out! Well, he didn't even get lunch that day until 2PM and he is usually taking a nap during this time. He was such a trooper and his cooperation made it a lot easier for me to handle.
So with our day of surgery instructions in hand we were on our way into the world. We have never been in a world with an impending brain surgery date. Casey and I struggled all weekend with the outcome of that appointment. Immense guilt consumed him for not being there. No one wants to put their child through surgery, so of course we start pondering whether or not we were doing the right thing. It's so hard! He wasn't showing the traditional symptoms of a shunt malfunction.
The following Sunday some of my close friends and I had already registered to do a 5K Race that benefited the Children's Hospital. We went wearing our Hydro Blue shirts and dominated. While we were enjoying a couple celebratory "adult beverages" after the race a woman approached me.
She asks, "Which one of you is Parker and which one of you has Hydrocephalus?"
I look at her and reply, "Parker is actually my son and he has Hydrocephalus."
"No way. I have Hydrocephalus. I have had it since I was 6 months old. I got it from bacterial meningitis. I doctor here at this hospital," she said.
I immediately take full advantage of speaking to a woman who suffers from the same condition as my son.
"Can you feel you shunt?"
"How many surgeries have you had?"
"How do you know if you shunt isn't working?"
"How old are you?"
"What do you do for a living?"
This lovely woman answered every single one of my questions and helped me in more ways than she will ever know. In fact, her most recent surgery had been over a decade ago. She wasn't showing the typical shunt malfunction symptoms (just like Parker currently). Her mom just had a feeling something was off and sure enough, it was. She was a healthy, active and amazing young woman. Meeting her gave me so much hope and strength. Meeting her made any guilt I had about putting Parker through surgery again disappear. We were doing the right thing.
God sent her to me that day. Out of 1600 people she found me. Needless to say there were a couple tears of happiness from us that afternoon.
Friday, September 25, 2015
Monday, August 31, 2015
It's a Happy Hydro Awareness Month Kind of Day!
Did you know that September is Hydrocephalus Awareness Month? If not, now you do! If you are friends with my husband or I, surely you knew this because we blasted Facebook with every single Hydrocephalus Awareness tidbit out there. We are loud, we are proud, and we love to bring awareness to our friends and family!
Yes, yes, we are thoooose people. To say we are proud of our little miracle is an understatement!
I cannot believe this will be our second year raising awareness for a condition I didn't even know existed. At this point in the game we have a pretty good understanding of what Hydrocephalus is and what it means for our son. There are some aspects of his future that are undefined and the unknown does plague us. One thing I can tell you for absolute certain...we no longer let it define Parker. We carried this diagnosis around with heavy hearts for a long, long time. We spent countless hours in tears and worrying, even as recent as last month. The worry never goes away.
The articles we've read scared us greatly and cemented a tremendous amount of uncertainty in our lives for little Parker. Plus, Parker has been about 6 months behind in all areas of development since being diagnosed, so most of what we read was actually becoming reality. We've tried every intervention and specialist out there to help catch him up. This is a battle we still fight and I'd be lying if I said my heart wasn't a little bit heavy from time to time. The worst feeling in the world is watching your child struggle. Like many NICU and/or Hydro parents, I've had to endure that since day 1.
When reading facts about Hydrocephalus I am always shocked by how common and dangerous it is and how little attention it actually gets! Supporters are constantly rallying for research dollars because there haven't been any huge advancements with the treatment and detection of malfunctions with this condition. At the end of the day there is no cure and treatment is almost always brain surgery. Obviously this hits home a bit more for me, but more than anything, it scares me to think my son has a condition that no one with research dollars really knows about. Some people are given shunts and they are perfectly fine for 30+ years! I can only hope that is Parker's case. I am too well versed, though. I know that the reality is some people fight and fight hard and still lose their battle. Our children, before they learn to speak, suffer tremendous amounts of pain from headaches and disability challenges that will impact them the rest of their lives. The worst part, as parents we are helpless in the situation.
Because the month of September is dedicated to Hydrocephalus Awareness, it is a time of reflection for me.
What Parker has been through...
Where he's been...
Where he's going...
All are constant, lingering thoughts in my head. He is still too young to fully understand the condition that plagued him at just three months old. Every single time I go back to that moment in the ER tears sting my eyes. Even now as I type. The moment in time that stood still. The moment that literally changed everything, forever. Even by some miracle Parker's Hydrocephalus goes away, we will never ever forget the people we've become during this journey. My backbone is a lot stronger and my nerves a little weaker. Some how in all of this crazy hydro journey we've been riding, my smile lines are more defined. Maybe I'm just getting wrinkles because of age, but, I have seriously spent a lot of time smiling. This boy has brought so much happiness to my life and the kid is hilarious. I would like to contribute my newfound wrinkles to that. :-)
Since my last post I can confirm a couple things.
1. Parker is HAPPY.
2. Parker is HEALTHY (no ear infections, colds or flu *knock on wood).
3. Parker stayed home ALL summer with his family, enjoying every bit of it along the way.
4. Parker learned to WALK.
All of those things are clearly reason to celebrate, especially number one. For some reason, though, the thoughts of what he can't and should do still weight heavily on me. It's a feeling that I can't control. If you've been a mother or father in this position I'm sure you can relate. I feel guilty for it, too! I know he's happy, healthy and home, but...I want more. Selfish, maybe? Determined, yes!
It's taken some time for me to hit the keyboard again because we've had a roller coaster of appointments and "mishaps" for this child. I'm still not sure that I can portray what's happening, because honestly, I don't know. The uncertainty is KILLING us at this point. We hope to have a lot figured out this fall as far as next steps for Parker.
Long story short, at around 15 months, he seemed to have plateaued developmentally. At 18 months, other than the walking, he really wasn't doing anything he was "supposed" to be doing. We do early intervention programs in our home and he didn't score so well on the 18 month assessment. To say I was devastated was an understatement. I layed in my bed and cried...for a while. Then I remembered we had another appointment at the university hospital with the Neonatologist. Maybe Parker just had a bad day? Seriously you can't expect a toddler to perform at an A+ level on command.
My gut told me to slow my roll, though. Being home with him, I have had the amazing opportunity to play with him and watch him pretty much all day and night. What he was being tested on were things I knew he wasn't doing for me, either. Yes I know what's on those tests and what he should be doing at each stage because I study that up! In fact, it took me well over three months to teach him how to put a ball in a bucket. That sure wasn't on the test as a "good" check mark. I knew in my heart of hearts that something was wrong. All kids are different, absolutely, but Parker was just struggling.
So, second assessment, he scored exactly the same. Commence breakdown in the doctor's office!
She starts off by saying, "I love seeing Parker and I hope you will bring him by to visit with me. At this time I am going to refer you to the Center for Disability and Development. There isn't anything I can do and I'm seeing some red flags here."
Cue crying...!
"I'm so sorry. I just get so emotional over this," I cried.
The doctor hands me tissues and replies with, "Hey, it's okay. You need time to grieve. Believe me I see a lot and I know you are a good mom and I know you are doing everything you can and this is hard to hear."
I then went on to agree with her and even told her that during pregnancy I didn't even consume packaged lunch meat and took my vitamins! Never missed an appointment! Yep, fell right off that wagon again. She shook her head agreeing with me. God love her.
What a feeling of defeat. I cannot even begin to describe the instant panic and worry that consumed me in that moment. When you do everything right! Early intervention for over a year! So, the Neonatologist referred us to the Center for Disability and Development. I mean, what else can you do? We have to do whatever it takes to learn how to teach Parker. Clearly, we aren't teaching him the way he needs to be taught. It was like deja' vu marching through that hospital with snot and tears running down my face. I had a good cry and then it was off to eat two cinnamon rolls and Parker's left over chicken strips at Perkins.
So, we are continuing to deal with those emotions and our appointment is this fall. We are hoping and praying that at the end of it all, we at least have some diagnosis and/or tools to help him learn. He is also scheduled for a complete eye exam at the university at the same time because we think that maybe, just maybe, some of his struggle is because he can't see close up. Who knows! At least we can say we looked into it!
Then naturally the little stinker started having these little "seizure like spells" and losing balance more than usual during the month of July. They weren't full blown seizures, but more like, dazing off episodes. If you were unfortunate enough to witness him have one you know why panic struck me. He was also falling like a mad man. Balance is not always Parker's friend so that's why when he was falling for absolutely no reason I was worried. So after many conversations with his Neurologist he decided that he was no longer going to have these spells and snapped out of it. Thank you, God. We did not want to put him back on seizure medication.
Seizures and shunt malfunctions are always a worry of ours because last time he had his ventricles checked they were significantly bigger than they've ever been since his shunt was inserted. Our favorite Neurosurgeon is back at the university hospital after wrapping up a stint at the St. Louis Children's Hospital. We are going to meet with him in just under two weeks. So, we are hoping, hoping, hoping those ventricles are where they need to be at this point.
It seems that September and October will be months of closure for us! Hopefully!
So, other than the above mentioned, we really have had a great summer with Parker. He's gotten to do so many fun things and it's been beyond enjoyable to watch him have fun. He has really come into his own with a crazy personality that so many people love. His laugh in contagious and his smile just screams trouble! The love I have for this boy grows every single day and I don't even know how that's possible, but it happens!
Looking on the bright side, as I try to do, I do look forward to spreading Hydrocephalus Awareness and knowledge this month and wearing as much blue as physically possible! I'm sure my husband and I will be flooding Facebook with our Hydro Posts and you know what, I'm not even a little bit sorry! :-)
Yes, yes, we are thoooose people. To say we are proud of our little miracle is an understatement!
I cannot believe this will be our second year raising awareness for a condition I didn't even know existed. At this point in the game we have a pretty good understanding of what Hydrocephalus is and what it means for our son. There are some aspects of his future that are undefined and the unknown does plague us. One thing I can tell you for absolute certain...we no longer let it define Parker. We carried this diagnosis around with heavy hearts for a long, long time. We spent countless hours in tears and worrying, even as recent as last month. The worry never goes away.
The articles we've read scared us greatly and cemented a tremendous amount of uncertainty in our lives for little Parker. Plus, Parker has been about 6 months behind in all areas of development since being diagnosed, so most of what we read was actually becoming reality. We've tried every intervention and specialist out there to help catch him up. This is a battle we still fight and I'd be lying if I said my heart wasn't a little bit heavy from time to time. The worst feeling in the world is watching your child struggle. Like many NICU and/or Hydro parents, I've had to endure that since day 1.
When reading facts about Hydrocephalus I am always shocked by how common and dangerous it is and how little attention it actually gets! Supporters are constantly rallying for research dollars because there haven't been any huge advancements with the treatment and detection of malfunctions with this condition. At the end of the day there is no cure and treatment is almost always brain surgery. Obviously this hits home a bit more for me, but more than anything, it scares me to think my son has a condition that no one with research dollars really knows about. Some people are given shunts and they are perfectly fine for 30+ years! I can only hope that is Parker's case. I am too well versed, though. I know that the reality is some people fight and fight hard and still lose their battle. Our children, before they learn to speak, suffer tremendous amounts of pain from headaches and disability challenges that will impact them the rest of their lives. The worst part, as parents we are helpless in the situation.
Because the month of September is dedicated to Hydrocephalus Awareness, it is a time of reflection for me.
What Parker has been through...
Where he's been...
Where he's going...
All are constant, lingering thoughts in my head. He is still too young to fully understand the condition that plagued him at just three months old. Every single time I go back to that moment in the ER tears sting my eyes. Even now as I type. The moment in time that stood still. The moment that literally changed everything, forever. Even by some miracle Parker's Hydrocephalus goes away, we will never ever forget the people we've become during this journey. My backbone is a lot stronger and my nerves a little weaker. Some how in all of this crazy hydro journey we've been riding, my smile lines are more defined. Maybe I'm just getting wrinkles because of age, but, I have seriously spent a lot of time smiling. This boy has brought so much happiness to my life and the kid is hilarious. I would like to contribute my newfound wrinkles to that. :-)
Since my last post I can confirm a couple things.
1. Parker is HAPPY.
2. Parker is HEALTHY (no ear infections, colds or flu *knock on wood).
3. Parker stayed home ALL summer with his family, enjoying every bit of it along the way.
4. Parker learned to WALK.
All of those things are clearly reason to celebrate, especially number one. For some reason, though, the thoughts of what he can't and should do still weight heavily on me. It's a feeling that I can't control. If you've been a mother or father in this position I'm sure you can relate. I feel guilty for it, too! I know he's happy, healthy and home, but...I want more. Selfish, maybe? Determined, yes!
It's taken some time for me to hit the keyboard again because we've had a roller coaster of appointments and "mishaps" for this child. I'm still not sure that I can portray what's happening, because honestly, I don't know. The uncertainty is KILLING us at this point. We hope to have a lot figured out this fall as far as next steps for Parker.
Long story short, at around 15 months, he seemed to have plateaued developmentally. At 18 months, other than the walking, he really wasn't doing anything he was "supposed" to be doing. We do early intervention programs in our home and he didn't score so well on the 18 month assessment. To say I was devastated was an understatement. I layed in my bed and cried...for a while. Then I remembered we had another appointment at the university hospital with the Neonatologist. Maybe Parker just had a bad day? Seriously you can't expect a toddler to perform at an A+ level on command.
My gut told me to slow my roll, though. Being home with him, I have had the amazing opportunity to play with him and watch him pretty much all day and night. What he was being tested on were things I knew he wasn't doing for me, either. Yes I know what's on those tests and what he should be doing at each stage because I study that up! In fact, it took me well over three months to teach him how to put a ball in a bucket. That sure wasn't on the test as a "good" check mark. I knew in my heart of hearts that something was wrong. All kids are different, absolutely, but Parker was just struggling.
So, second assessment, he scored exactly the same. Commence breakdown in the doctor's office!
She starts off by saying, "I love seeing Parker and I hope you will bring him by to visit with me. At this time I am going to refer you to the Center for Disability and Development. There isn't anything I can do and I'm seeing some red flags here."
Cue crying...!
"I'm so sorry. I just get so emotional over this," I cried.
The doctor hands me tissues and replies with, "Hey, it's okay. You need time to grieve. Believe me I see a lot and I know you are a good mom and I know you are doing everything you can and this is hard to hear."
I then went on to agree with her and even told her that during pregnancy I didn't even consume packaged lunch meat and took my vitamins! Never missed an appointment! Yep, fell right off that wagon again. She shook her head agreeing with me. God love her.
What a feeling of defeat. I cannot even begin to describe the instant panic and worry that consumed me in that moment. When you do everything right! Early intervention for over a year! So, the Neonatologist referred us to the Center for Disability and Development. I mean, what else can you do? We have to do whatever it takes to learn how to teach Parker. Clearly, we aren't teaching him the way he needs to be taught. It was like deja' vu marching through that hospital with snot and tears running down my face. I had a good cry and then it was off to eat two cinnamon rolls and Parker's left over chicken strips at Perkins.
So, we are continuing to deal with those emotions and our appointment is this fall. We are hoping and praying that at the end of it all, we at least have some diagnosis and/or tools to help him learn. He is also scheduled for a complete eye exam at the university at the same time because we think that maybe, just maybe, some of his struggle is because he can't see close up. Who knows! At least we can say we looked into it!
Then naturally the little stinker started having these little "seizure like spells" and losing balance more than usual during the month of July. They weren't full blown seizures, but more like, dazing off episodes. If you were unfortunate enough to witness him have one you know why panic struck me. He was also falling like a mad man. Balance is not always Parker's friend so that's why when he was falling for absolutely no reason I was worried. So after many conversations with his Neurologist he decided that he was no longer going to have these spells and snapped out of it. Thank you, God. We did not want to put him back on seizure medication.
Seizures and shunt malfunctions are always a worry of ours because last time he had his ventricles checked they were significantly bigger than they've ever been since his shunt was inserted. Our favorite Neurosurgeon is back at the university hospital after wrapping up a stint at the St. Louis Children's Hospital. We are going to meet with him in just under two weeks. So, we are hoping, hoping, hoping those ventricles are where they need to be at this point.
It seems that September and October will be months of closure for us! Hopefully!
So, other than the above mentioned, we really have had a great summer with Parker. He's gotten to do so many fun things and it's been beyond enjoyable to watch him have fun. He has really come into his own with a crazy personality that so many people love. His laugh in contagious and his smile just screams trouble! The love I have for this boy grows every single day and I don't even know how that's possible, but it happens!
Looking on the bright side, as I try to do, I do look forward to spreading Hydrocephalus Awareness and knowledge this month and wearing as much blue as physically possible! I'm sure my husband and I will be flooding Facebook with our Hydro Posts and you know what, I'm not even a little bit sorry! :-)
Sunday, March 29, 2015
Therapy Schrarapy
Every week our therapy sessions go a little like this...
They ask, "Is he pulling himself up in his crib yet?"
"Nope."
Then as sure as the sky is blue they ask, "Is he able to get up from laying down?"
"Nope."
"So basically nothing has changed."
I reply, "Yep."
So, every week we endure therapy. Most sessions, Parker and I both end up crying. He cries because he's just mad and I cry because I feel horrible for putting him through it. It's frustrating putting him through this weekly and not seeing results. It's not his therapist's fault, it's not our fault and it's not his fault. I feel confident in blaming Hydrocephalus on this one.
"Gosh darn it! It's FREEZING outside and it's Spring."
Blame it on Hydrocephalus.
"I spilled my tea on the clean rug (uh hum Casey)."
Blame it on Hydrocephalus.
You all have my permission to blame what-ever you want on Hydrocephalus. It's pretty easy.
Parker was forced to a hospital bed during a very crucial time in his development. Then between healing from other brain surgeries at home, he didn't get the tummy time he needed. I think I counted over 8 weeks he didn't get tummy time, or even any time to explore floor play. So, at the end of the day, it all caught up and his physical development isn't really going so well.
As a parent we so badly want to see our child succeed. Things that come naturally to toddlers, do not come naturally to Parker. It seems like so much of what other kids just "do" we struggle with. Its excruciating to see him struggle at such a young age. We pray it's not a precedence for the rest of his life. It's pretty hard watching him cry and get angry because his mind wants to do something and his body just...can't.
At one therapy session I was in tears to the poor therapist. Honestly, it's sometimes too much to handle and I lose it.
"I just picture him sitting on this spaceship blanket watching TV never walking or doing ANYTHING, with the support of his boppy pillow, forever."
She replies, "That's not going to happen. He will crawl. He will walk."
So, the million dollar question is WHY won't he do anything?!?
At this point, they have said that they don't believe he has Cerebral Palsy or anything else physically debilitating. It's just a matter of catching his body up to his age. I mean really, 18 months is the 'red flag' age for walking. We still have three months before everyone goes into full on freak-out mode.
It's just hard to be patient and it's nearly impossible not to worry because one more long-term hospital stay will do so much harm for him developmentally. Also, we know that there was a level of brain damage at birth. Is this what the damage looks like? Who knows. Needless to say, it's frustrating. When we were told he had brain damage we were always assuming it was going to be intellectual damage, not so much physical. You know what they say about assuming...
I've never wanted a toddler to roam my house and get into trouble like I do right now! It would certainly ease my mind. That being said, Mr. Parker is very brave in his walker. He roams the house like he owns the place. Casey caught him "running and gliding" through our kitchen.
"Run...Run...Pick Feet Up and GLIDE"
It's pretty funny to see him do it. I would compare it to adults running with shopping carts and jumping on for a ride. Please, do not even pretend like you've never been there done that. We all have so I know you know exactly what I'm talking about.
In Parker's most recent therapy session we had a visit with two therapists. This usually happens once a month and I can't get a wink of sleep the night before. This is where he is assessed and "rated". Well, for the first time EVER Parker rated just below the 30% developmental delay. We are never below the benchmark and it was seriously a cause for celebration. Basically, if you rate below the 30% delay, therapy isn't always necessary. In fact, the therapist told me had this been his first ever visit to Parker, he wouldn't recommend therapy at all.
Say Whaaat?!?
Of course knowing what we all know, we are continuing full force. Sigh.
I would be lying to you if I said we tend to focus more on what he "should" be doing rather than celebrating what he "is" doing. Which, I hate to admit, but in reflection, I realize it to be true.
So, let's take a moment to celebrate what this rock star has accomplished.
1. Sitting without the support of his Boppy.
2. Rolling (won't roll on shunt side, but we don't care, who would roll on that anyway... no one).
3. Pulling himself up on the couch (with bribery-mostly paper he can rip and be naughty...no shame in my game).
4. Walking with our assistance.
5. Rolling around like a bat out of hell in his walker.
6. Standing for a couple seconds unassisted.
7. Walking the couch.
See, that's already over 5 things just off the top of my head. What am I complaining about?
He still has 6 days to learn how to walk for Easter Egg Hunts. :-)
They ask, "Is he pulling himself up in his crib yet?"
"Nope."
Then as sure as the sky is blue they ask, "Is he able to get up from laying down?"
"Nope."
"So basically nothing has changed."
I reply, "Yep."
So, every week we endure therapy. Most sessions, Parker and I both end up crying. He cries because he's just mad and I cry because I feel horrible for putting him through it. It's frustrating putting him through this weekly and not seeing results. It's not his therapist's fault, it's not our fault and it's not his fault. I feel confident in blaming Hydrocephalus on this one.
"Gosh darn it! It's FREEZING outside and it's Spring."
Blame it on Hydrocephalus.
"I spilled my tea on the clean rug (uh hum Casey)."
Blame it on Hydrocephalus.
You all have my permission to blame what-ever you want on Hydrocephalus. It's pretty easy.
Parker was forced to a hospital bed during a very crucial time in his development. Then between healing from other brain surgeries at home, he didn't get the tummy time he needed. I think I counted over 8 weeks he didn't get tummy time, or even any time to explore floor play. So, at the end of the day, it all caught up and his physical development isn't really going so well.
As a parent we so badly want to see our child succeed. Things that come naturally to toddlers, do not come naturally to Parker. It seems like so much of what other kids just "do" we struggle with. Its excruciating to see him struggle at such a young age. We pray it's not a precedence for the rest of his life. It's pretty hard watching him cry and get angry because his mind wants to do something and his body just...can't.
At one therapy session I was in tears to the poor therapist. Honestly, it's sometimes too much to handle and I lose it.
"I just picture him sitting on this spaceship blanket watching TV never walking or doing ANYTHING, with the support of his boppy pillow, forever."
She replies, "That's not going to happen. He will crawl. He will walk."
So, the million dollar question is WHY won't he do anything?!?
At this point, they have said that they don't believe he has Cerebral Palsy or anything else physically debilitating. It's just a matter of catching his body up to his age. I mean really, 18 months is the 'red flag' age for walking. We still have three months before everyone goes into full on freak-out mode.
It's just hard to be patient and it's nearly impossible not to worry because one more long-term hospital stay will do so much harm for him developmentally. Also, we know that there was a level of brain damage at birth. Is this what the damage looks like? Who knows. Needless to say, it's frustrating. When we were told he had brain damage we were always assuming it was going to be intellectual damage, not so much physical. You know what they say about assuming...
I've never wanted a toddler to roam my house and get into trouble like I do right now! It would certainly ease my mind. That being said, Mr. Parker is very brave in his walker. He roams the house like he owns the place. Casey caught him "running and gliding" through our kitchen.
"Run...Run...Pick Feet Up and GLIDE"
It's pretty funny to see him do it. I would compare it to adults running with shopping carts and jumping on for a ride. Please, do not even pretend like you've never been there done that. We all have so I know you know exactly what I'm talking about.
In Parker's most recent therapy session we had a visit with two therapists. This usually happens once a month and I can't get a wink of sleep the night before. This is where he is assessed and "rated". Well, for the first time EVER Parker rated just below the 30% developmental delay. We are never below the benchmark and it was seriously a cause for celebration. Basically, if you rate below the 30% delay, therapy isn't always necessary. In fact, the therapist told me had this been his first ever visit to Parker, he wouldn't recommend therapy at all.
Say Whaaat?!?
Of course knowing what we all know, we are continuing full force. Sigh.
I would be lying to you if I said we tend to focus more on what he "should" be doing rather than celebrating what he "is" doing. Which, I hate to admit, but in reflection, I realize it to be true.
So, let's take a moment to celebrate what this rock star has accomplished.
1. Sitting without the support of his Boppy.
2. Rolling (won't roll on shunt side, but we don't care, who would roll on that anyway... no one).
3. Pulling himself up on the couch (with bribery-mostly paper he can rip and be naughty...no shame in my game).
4. Walking with our assistance.
5. Rolling around like a bat out of hell in his walker.
6. Standing for a couple seconds unassisted.
7. Walking the couch.
See, that's already over 5 things just off the top of my head. What am I complaining about?
He still has 6 days to learn how to walk for Easter Egg Hunts. :-)
Tuesday, March 17, 2015
365 Days to Forever
I'M BACK! Hydro Mommyhood was definitely on vacation. Vacation is over. Casey told me that I had to start pulling my weight in writing again. :-) First, let me start off by saying how much I missed everyone and all the feedback you give me! During my most difficult times in Parker's journey, you all helped me more than you know. Plus, this blog has helped many families through their Hydro Journeys and gained a tremendous amount of awareness for the condition, and for that I am super grateful. Honestly, I can't believe it's taken me this long to get back to the keyboard. There have been many times in the past couple months where I could have certainly used the therapy of writing.
This time of year has extreme significance to us. Exactly one year ago, today, our lives changed forever. Parker was diagnosed with Hydrocephalus at about 11PM on March 18, 2014. I will never, ever, forget that day as long as I live.
If you have followed my blog you know that I already knew he had it merely by mother's intuition and research. It was one thing to suspect it, but it was a complete shock to actually have my worst fears confirmed in that tiny ER exam room. I immediately handed Parker to Casey and I excused myself. Thank goodness the bathroom was right next door because the sudden urge to get sick overwhelmed me. I remember not being able to see my reflection in the mirror because I was crying so hard. Thinking back on that moment, I wish I could forget everything I was feeling, but I can't. The fear and anxiety that plagued me at that moment, has continued to plague me all these months.
That was it. In a 5 minute conversation our lives changed forever. I remember the doctor said, "I am so sorry that this has happened."
There were no words from us. Just complete heartbreak. As you may remember, Parker had his first brain surgery the following morning, just shy of being 3 months old. The days, weeks and months to follow made up some of the worst and somehow best moments in my entire life.
Worst: My baby had brain surgery 3 TIMES in one month. My heart stopped every time he was on that operating room table. We could not hold Parker for over THREE WEEKS.
Best: My baby made eye contact with me! He LOOKED at me for the first time and really saw me. Tears sting my eyes when I relive that moment right after his first surgery. Then there was the moment when I held him for the first time after not being able to hold him for weeks. It was as if I was holding him for the first time after he was born...only better.
From that moment on I vowed to never take a single moment with him for granted. To this day, I pick him up and kiss him and love him EVERY chance I get. This child is smothered in kisses every day. My faith was tested time and time again, yet somehow, God showed me his support when I least expected it and often in ways I didn't think possible, right at about the time I was on empty.
I would love to tell all of you that after our initial "bump in the road" things got easier. They didn't. Our challenges and fears have probably quadrupled since we've been home. It's a new kind of bump in the road in which we find ourselves completely responsible for. There have been missed milestones, more tests and doctor appointments, and horrible therapy sessions. The reality of the situation is...Hydrocephalus sucks, but it's our reality, which makes it suck even more because it's not going away.
Being a parent has got to be, hands down, the scariest job on earth. I am sure anyone can agree with me on that. You are in charge of this tiny little being until they aren't tiny anymore. Soon they eat by themselves, wipe their own tushies, talk back, graduate high school and hopefully move on to be respectful, law abiding citizens (right, Dad?). Well somewhere in between them being tiny and wiping their own tushies is where we are with Parker.
Next week he will be 15 months old. So far, we have mastered army crawling and sitting. Obviously most children his age are running circles around him by foot or by hands and knees. This is where things get tricky and heartbreaking for us...Parker seems to be a normal functioning 15 month old mentally, physically he is still incredibly behind. No matter what we do, he just can't advance physically. It. Breaks. My. Heart.
It's gotten that it affects me so much that I can't handle Facebook. I damn near cried at Monkey Joe's because I realized that Parker was the biggest, non-mobile, child there.
"How old is your little guy?"
I reply, "He'll be 15 months next week."
"Oh."
Cue awkward silence.
Yeah. OH. Believe me lady, it's confusing to me, too. I don't feel like I owe complete strangers an explanation as to why Parker is just sitting. When I am confronted with situations like that, which has happened MANY times, I often want to have verbal diarrhea and tell them everything he has been through. I feel like I have to tell them.
"Stop judging me Judgy Judgerson!"
"Yes we call that battery looking contraption on the back of his head a SHUNT! He needs it to survive!"
Turns out, Hydrocephalus isn't nearly as exciting to most parents as it is to Casey and I. So, I do resist the urge to get out my phone and show parents diagrams of shunts and how they work. I just take it and vent later. At the end of the day, I am my own biggest judge. It's a battle I fight with myself often. She probably had lots of questions, but more than likely, not judging me. I was judging me. Judging myself is like a fulltime job these days.
Am I doing this right? Am I making the right choices? What else could I be doing?
Those questions will keep you up all night! Lately, it's been plaguing Casey and I as we reach these important milestones in Parker's life. We just want him to have an easy toddlerhood because his infancy was everything but easy.
You are probably asking yourselves, "Why do they judge themselves so harshly? " I wish I knew why. Human nature I suppose. I think any good parent, at one time or another, questions their ability.
In moments like this, where I look back and reflect on how awful life was this time last year, I realize it's not that bad. Parker is healthy, happy, AAADORABLE, and minus the slight hydro flare-up a couple weeks ago, is doing relatively well.
I must ask myself a very important question, is it really that bad?
Well...the honest answer is, no. It's not that bad. Put on your big girl pants and buck up. He is happy, healthy and hasn't had a surgery since last April. It's just easier to see the bad things and place blame on yourself, rather than on a condition you can't yell at.
Our biggest challenges this past year have been patience, faith and perseverance. It's hard to keep up on those things when you aren't winning battles. We are, however, winning the biggest battle of all and that is keeping Parker happy. Overall, he is a genuinely happy guy! His smile is contagious and his strength inspires me every day. Even when he was hospitalized last month he still hammed it up and somehow reassured me everything was okay. How he does that, I don't know. He has a gift that I can't even understand or put into words yet.
I cannot wait to see what he does with it.
In the mean time I hope to be able to dedicate more time to my hobby, writing. I have lots of funny stories that involve pooping, hospital sassiness, and more! Who doesn't love a good poop story?
.jpg)
This time of year has extreme significance to us. Exactly one year ago, today, our lives changed forever. Parker was diagnosed with Hydrocephalus at about 11PM on March 18, 2014. I will never, ever, forget that day as long as I live.
If you have followed my blog you know that I already knew he had it merely by mother's intuition and research. It was one thing to suspect it, but it was a complete shock to actually have my worst fears confirmed in that tiny ER exam room. I immediately handed Parker to Casey and I excused myself. Thank goodness the bathroom was right next door because the sudden urge to get sick overwhelmed me. I remember not being able to see my reflection in the mirror because I was crying so hard. Thinking back on that moment, I wish I could forget everything I was feeling, but I can't. The fear and anxiety that plagued me at that moment, has continued to plague me all these months.
That was it. In a 5 minute conversation our lives changed forever. I remember the doctor said, "I am so sorry that this has happened."
There were no words from us. Just complete heartbreak. As you may remember, Parker had his first brain surgery the following morning, just shy of being 3 months old. The days, weeks and months to follow made up some of the worst and somehow best moments in my entire life.
Worst: My baby had brain surgery 3 TIMES in one month. My heart stopped every time he was on that operating room table. We could not hold Parker for over THREE WEEKS.
Best: My baby made eye contact with me! He LOOKED at me for the first time and really saw me. Tears sting my eyes when I relive that moment right after his first surgery. Then there was the moment when I held him for the first time after not being able to hold him for weeks. It was as if I was holding him for the first time after he was born...only better.
From that moment on I vowed to never take a single moment with him for granted. To this day, I pick him up and kiss him and love him EVERY chance I get. This child is smothered in kisses every day. My faith was tested time and time again, yet somehow, God showed me his support when I least expected it and often in ways I didn't think possible, right at about the time I was on empty.
I would love to tell all of you that after our initial "bump in the road" things got easier. They didn't. Our challenges and fears have probably quadrupled since we've been home. It's a new kind of bump in the road in which we find ourselves completely responsible for. There have been missed milestones, more tests and doctor appointments, and horrible therapy sessions. The reality of the situation is...Hydrocephalus sucks, but it's our reality, which makes it suck even more because it's not going away.
Being a parent has got to be, hands down, the scariest job on earth. I am sure anyone can agree with me on that. You are in charge of this tiny little being until they aren't tiny anymore. Soon they eat by themselves, wipe their own tushies, talk back, graduate high school and hopefully move on to be respectful, law abiding citizens (right, Dad?). Well somewhere in between them being tiny and wiping their own tushies is where we are with Parker.
Next week he will be 15 months old. So far, we have mastered army crawling and sitting. Obviously most children his age are running circles around him by foot or by hands and knees. This is where things get tricky and heartbreaking for us...Parker seems to be a normal functioning 15 month old mentally, physically he is still incredibly behind. No matter what we do, he just can't advance physically. It. Breaks. My. Heart.
It's gotten that it affects me so much that I can't handle Facebook. I damn near cried at Monkey Joe's because I realized that Parker was the biggest, non-mobile, child there.
"How old is your little guy?"
I reply, "He'll be 15 months next week."
"Oh."
Cue awkward silence.
Yeah. OH. Believe me lady, it's confusing to me, too. I don't feel like I owe complete strangers an explanation as to why Parker is just sitting. When I am confronted with situations like that, which has happened MANY times, I often want to have verbal diarrhea and tell them everything he has been through. I feel like I have to tell them.
"Stop judging me Judgy Judgerson!"
"Yes we call that battery looking contraption on the back of his head a SHUNT! He needs it to survive!"
Turns out, Hydrocephalus isn't nearly as exciting to most parents as it is to Casey and I. So, I do resist the urge to get out my phone and show parents diagrams of shunts and how they work. I just take it and vent later. At the end of the day, I am my own biggest judge. It's a battle I fight with myself often. She probably had lots of questions, but more than likely, not judging me. I was judging me. Judging myself is like a fulltime job these days.
Am I doing this right? Am I making the right choices? What else could I be doing?
Those questions will keep you up all night! Lately, it's been plaguing Casey and I as we reach these important milestones in Parker's life. We just want him to have an easy toddlerhood because his infancy was everything but easy.
You are probably asking yourselves, "Why do they judge themselves so harshly? " I wish I knew why. Human nature I suppose. I think any good parent, at one time or another, questions their ability.
In moments like this, where I look back and reflect on how awful life was this time last year, I realize it's not that bad. Parker is healthy, happy, AAADORABLE, and minus the slight hydro flare-up a couple weeks ago, is doing relatively well.
I must ask myself a very important question, is it really that bad?
Well...the honest answer is, no. It's not that bad. Put on your big girl pants and buck up. He is happy, healthy and hasn't had a surgery since last April. It's just easier to see the bad things and place blame on yourself, rather than on a condition you can't yell at.
Our biggest challenges this past year have been patience, faith and perseverance. It's hard to keep up on those things when you aren't winning battles. We are, however, winning the biggest battle of all and that is keeping Parker happy. Overall, he is a genuinely happy guy! His smile is contagious and his strength inspires me every day. Even when he was hospitalized last month he still hammed it up and somehow reassured me everything was okay. How he does that, I don't know. He has a gift that I can't even understand or put into words yet.
I cannot wait to see what he does with it.
In the mean time I hope to be able to dedicate more time to my hobby, writing. I have lots of funny stories that involve pooping, hospital sassiness, and more! Who doesn't love a good poop story?
Sunday, September 14, 2014
Shuntabilities
Three months. It has been almost exactly three months since my last post. A lot of people have been getting on me (mostly my mother). "Where is your blog?" "You better get to posting!"
Chillax. I will do it when I do it. I've actually lost track of time. Believe me, this child gives me PLENTY of material day in and day out. I've just gotten wrapped up in loving him at HOME. Turns out, being a mom, even at home, is busy work! I've become pretty good at taking care of him, but in the mean time, I have been a pretty crappy friend being wrapped up in my little bubble. I love all of you who have stuck with me and I am sorry! It is my new resolution to step it up a notch.
I do not know where summer went! Our little family has settled in, being hospital free for record time. I can honestly say I've grown up more in the past 9 months than I have in the past 28 years. Everything has been put into perspective. I have truly learned what is most important and have been taught to cherish and treasure every single thing my son does. Believe me, not a day goes by that I do not thank the Lord. Every night I close my eyes and thank him. I thank him for this blessing of a son he chose me to have. It's hard for us to not look at those baby blues of his without getting teary eyed. This child is a walking miracle!
Parker is doing well, physically and mentally. He is playing and "gibbering". His little voice over the baby monitor is an alarm clock I've grown accustomed to. Though I will love the days when I can sleep again, I will miss his little voice waking me up. I did not think it was possible to love him more, but I do. Every. Single. Day.
Chubby Cheeks!
Baby Blue Eyes!
Momma! Dadda! Baba!
Giggles!
I cannot get enough of him! Ahh!
Let's go back to December 2013. Remember we had doctors tell us that there was a significant amount of brain damage. I have yet to see it and unfortunately continue to look for hints or clues that it is there I know I shouldn't do that. Believe me, but I do. I can't help it!
Something happened when we came home the last time from the hospital. I just got myself into this funk and feeling like so much of a failure I was miserable to be around. I would literally cry spontaneously about our situation at least five times a day. I literally questioned every aspect of Parker's being. What could I have done differently. I was placing all kinds of blame on myself. Can you say depressed much? I am woman enough to admit that I was depressed. I was miserable! Sleeping was impossible and fear of losing Parker was giving me so much anxiety I was literally losing my hair and eating my way through every fast food restaurant in Whiteside County.
Once I was able to admit that I couldn't fight these demons alone I went to my doctor. He point blank told me, "Caitlin. His diagnosis isn't going to change. This doesn't go away. So we need to figure out a way to deal with it. He needs you."
The crazy thing is, he knew exactly what I needed to hear. It's like I always knew his condition wouldn't go away, but to have someone look at my tear stained face and tell me that. Whoa. It was too late to be considered post-pardum depression, but he contributed my anxiety to the fact that for the first time since Parker was born I was home...alone. Every emotion and little bit of experience I had with his situation hit me like a ton of bricks at once! There weren't any distractions. When he was in the hospital I never worried about myself or what I was feeling or dealing with. I worried about him and what he was feeling and dealing with. So, in hindsight I should have taken care of me, too. My doctor is right, I am not good to him if I am not good. Lesson learned.
I continue to live the fear of him relapsing every day. To ease my mind we've become part of an early intervention program. Since we've last chatted Parker has had the amazing opportunity to welcome new people to his inner circle. By inner circle, I mean therapists. He gets to play with them every week and for the most part he genuinely likes it.
Being a part of this program was the best decision Casey and I ever came to. Granted, it's admitting your child has a level of developmental delay. However, denying it does NO GOOD.
Did I cry about this? Sure did.
Do I continue to cry about it? Sure do.
It's hard seeing your baby struggle. I hate it! If he has a bad session I almost always cry to my husband. I just want him to do good and not struggle. It's like his little brain gets it, but his body just can't do it. It frustrates him and he gets upset. Ultimately it's heartbreaking. I just wish he got it naturally like every other baby. However, wishing doesn't make it so. It is what it is.
BUT can I tell you how amazing his care team is? They do not judge and they love my baby! When he cries they hug him and love him and as a mother that is exactly what I want him surrounded with. It is the kind of encouragement and support he doesn't always get from typical medical staff. Plus they come to our home so Parker is in his "comfort zone." He sees the same faces every time and even gives them that contagious smile when they walk in.
I hate that we are in this situation, but I love that there is a program out there for people like us. It's so important, when faced with a diagnosis like we had, to tap into those resources social workers give you in the hospital. If we hadn't chatted with her, we never would have known this even existed. They will follow Parker until he is 3 and then, if need be, there are other programs he can be a part of. Why not? These therapists have a trained eye and his best interest in mind. Never hurts to try and worth every penny. They are there for literally everyone as long as the diagnosis qualifies.
Being a first time mom I will admit that though some things do come natural, a lot does not. I had no clue some of the things he should be doing at this point.
Some examples.
1. Picking up objects with his fingers and not palm. --> Whoops.
2. Eating some table food. --> Hmmm...
3. Crawling. -->Dangit!
4. Clapping. --> Well...almost so we will count it!
5. Pooping on the toilet. --> Just kidding!
I've cried over the "What Your Baby Should Be Doing" list a lot. So many people tell me that babies are different and will do it when they do it. Well, that is very true for a lot of babies. However, our baby has a neurological condition. I know he will do it when he does it, but at the end of the day, he might not. No doubt he needs to be taught and given a little extra push than most babies. I don't want to say he's different, but he is different! There isn't really a DIFFERENT way to say it. Grrr...
He throws up. He cries. He gets fevers. Every single time I naturally get a little nervous. It's so hard to figure out what is his condition and what is normal baby ick. Seeing how he can't tell me what's wrong yet, I play the guessing game a lot. I don't want to be one of those moms that rushes to the pediatrician or ER with every ailment so I usually call my husband and we go through the steps of our Hydro Checklist! :-)
- Fever?
- Vomiting?
- Fatigue?
- Irritability?
Those are sure signs of something going on with his Hydrocephalus. However, those are also signs of, oh I don't know, a little thing we like to call the FLU. So at the end of the day it's all about tapping into those instincts and just taking a deep breath. We've had one pediatrician visit this summer because Parker had a horrible cough and runny nose that kept him (and us) up all night. We sure did high five when it was just allergies. YES! No brain surgery or hospital stay! Obviously we knew it was something related to a cold or allergies since he was sneezing and coughing, but we honestly never know what diagnosis he has that will land him in the hospital. Darn shunt.
I hate to see him sick, but he needs to get sick. I can't keep him germ-free in our little bubble forever. So, I let my guard down...a little. Let's be real. Sure do cover and sanitize everything in public. WASH YOUR HANDS PEOPLE. I know for a fact people don't wash their hands after they go to the bathroom. No thank you.
"Yes he is cute. Go wash your hands."
Parker is still a major creep with the ladies so he attracts a lot of attention where-ever we go. Major flirt. He has spontaneous giggles when he sees pretty ladies. It's really hysterical, but when he keeps doing it, creepy. I really, really hope he outgrows this nervous giggle otherwise Parker will never survive around the ladies. For now he gets away with it because he is so darn cute!
So, in a nutshell we have been busy, but overall, good. We still have our challenges every day, but man are surrounded by great people to help us fight. One more thing, did you know that September is Hydrocephalus Awareness Month? Did you know that 1 in 500 children will be affected by this condition? That is too much! Do Parker and other Hydro Warriors a favor...wear blue one time this month and tell someone, anyone, why! With a little more awareness the possibility, or in this case the shuntability, of research and funding would increase dramatically. Awareness Matters. Wear Blue.
Chillax. I will do it when I do it. I've actually lost track of time. Believe me, this child gives me PLENTY of material day in and day out. I've just gotten wrapped up in loving him at HOME. Turns out, being a mom, even at home, is busy work! I've become pretty good at taking care of him, but in the mean time, I have been a pretty crappy friend being wrapped up in my little bubble. I love all of you who have stuck with me and I am sorry! It is my new resolution to step it up a notch.
I do not know where summer went! Our little family has settled in, being hospital free for record time. I can honestly say I've grown up more in the past 9 months than I have in the past 28 years. Everything has been put into perspective. I have truly learned what is most important and have been taught to cherish and treasure every single thing my son does. Believe me, not a day goes by that I do not thank the Lord. Every night I close my eyes and thank him. I thank him for this blessing of a son he chose me to have. It's hard for us to not look at those baby blues of his without getting teary eyed. This child is a walking miracle!
Parker is doing well, physically and mentally. He is playing and "gibbering". His little voice over the baby monitor is an alarm clock I've grown accustomed to. Though I will love the days when I can sleep again, I will miss his little voice waking me up. I did not think it was possible to love him more, but I do. Every. Single. Day.
Chubby Cheeks!
Baby Blue Eyes!
Momma! Dadda! Baba!
Giggles!
I cannot get enough of him! Ahh!
Let's go back to December 2013. Remember we had doctors tell us that there was a significant amount of brain damage. I have yet to see it and unfortunately continue to look for hints or clues that it is there I know I shouldn't do that. Believe me, but I do. I can't help it!
Something happened when we came home the last time from the hospital. I just got myself into this funk and feeling like so much of a failure I was miserable to be around. I would literally cry spontaneously about our situation at least five times a day. I literally questioned every aspect of Parker's being. What could I have done differently. I was placing all kinds of blame on myself. Can you say depressed much? I am woman enough to admit that I was depressed. I was miserable! Sleeping was impossible and fear of losing Parker was giving me so much anxiety I was literally losing my hair and eating my way through every fast food restaurant in Whiteside County.
Once I was able to admit that I couldn't fight these demons alone I went to my doctor. He point blank told me, "Caitlin. His diagnosis isn't going to change. This doesn't go away. So we need to figure out a way to deal with it. He needs you."
The crazy thing is, he knew exactly what I needed to hear. It's like I always knew his condition wouldn't go away, but to have someone look at my tear stained face and tell me that. Whoa. It was too late to be considered post-pardum depression, but he contributed my anxiety to the fact that for the first time since Parker was born I was home...alone. Every emotion and little bit of experience I had with his situation hit me like a ton of bricks at once! There weren't any distractions. When he was in the hospital I never worried about myself or what I was feeling or dealing with. I worried about him and what he was feeling and dealing with. So, in hindsight I should have taken care of me, too. My doctor is right, I am not good to him if I am not good. Lesson learned.
I continue to live the fear of him relapsing every day. To ease my mind we've become part of an early intervention program. Since we've last chatted Parker has had the amazing opportunity to welcome new people to his inner circle. By inner circle, I mean therapists. He gets to play with them every week and for the most part he genuinely likes it.
Being a part of this program was the best decision Casey and I ever came to. Granted, it's admitting your child has a level of developmental delay. However, denying it does NO GOOD.
Did I cry about this? Sure did.
Do I continue to cry about it? Sure do.
It's hard seeing your baby struggle. I hate it! If he has a bad session I almost always cry to my husband. I just want him to do good and not struggle. It's like his little brain gets it, but his body just can't do it. It frustrates him and he gets upset. Ultimately it's heartbreaking. I just wish he got it naturally like every other baby. However, wishing doesn't make it so. It is what it is.
BUT can I tell you how amazing his care team is? They do not judge and they love my baby! When he cries they hug him and love him and as a mother that is exactly what I want him surrounded with. It is the kind of encouragement and support he doesn't always get from typical medical staff. Plus they come to our home so Parker is in his "comfort zone." He sees the same faces every time and even gives them that contagious smile when they walk in.
I hate that we are in this situation, but I love that there is a program out there for people like us. It's so important, when faced with a diagnosis like we had, to tap into those resources social workers give you in the hospital. If we hadn't chatted with her, we never would have known this even existed. They will follow Parker until he is 3 and then, if need be, there are other programs he can be a part of. Why not? These therapists have a trained eye and his best interest in mind. Never hurts to try and worth every penny. They are there for literally everyone as long as the diagnosis qualifies.
Being a first time mom I will admit that though some things do come natural, a lot does not. I had no clue some of the things he should be doing at this point.
Some examples.
1. Picking up objects with his fingers and not palm. --> Whoops.
2. Eating some table food. --> Hmmm...
3. Crawling. -->Dangit!
4. Clapping. --> Well...almost so we will count it!
5. Pooping on the toilet. --> Just kidding!
I've cried over the "What Your Baby Should Be Doing" list a lot. So many people tell me that babies are different and will do it when they do it. Well, that is very true for a lot of babies. However, our baby has a neurological condition. I know he will do it when he does it, but at the end of the day, he might not. No doubt he needs to be taught and given a little extra push than most babies. I don't want to say he's different, but he is different! There isn't really a DIFFERENT way to say it. Grrr...
He throws up. He cries. He gets fevers. Every single time I naturally get a little nervous. It's so hard to figure out what is his condition and what is normal baby ick. Seeing how he can't tell me what's wrong yet, I play the guessing game a lot. I don't want to be one of those moms that rushes to the pediatrician or ER with every ailment so I usually call my husband and we go through the steps of our Hydro Checklist! :-)
- Fever?
- Vomiting?
- Fatigue?
- Irritability?
Those are sure signs of something going on with his Hydrocephalus. However, those are also signs of, oh I don't know, a little thing we like to call the FLU. So at the end of the day it's all about tapping into those instincts and just taking a deep breath. We've had one pediatrician visit this summer because Parker had a horrible cough and runny nose that kept him (and us) up all night. We sure did high five when it was just allergies. YES! No brain surgery or hospital stay! Obviously we knew it was something related to a cold or allergies since he was sneezing and coughing, but we honestly never know what diagnosis he has that will land him in the hospital. Darn shunt.
I hate to see him sick, but he needs to get sick. I can't keep him germ-free in our little bubble forever. So, I let my guard down...a little. Let's be real. Sure do cover and sanitize everything in public. WASH YOUR HANDS PEOPLE. I know for a fact people don't wash their hands after they go to the bathroom. No thank you.
"Yes he is cute. Go wash your hands."
Parker is still a major creep with the ladies so he attracts a lot of attention where-ever we go. Major flirt. He has spontaneous giggles when he sees pretty ladies. It's really hysterical, but when he keeps doing it, creepy. I really, really hope he outgrows this nervous giggle otherwise Parker will never survive around the ladies. For now he gets away with it because he is so darn cute!
So, in a nutshell we have been busy, but overall, good. We still have our challenges every day, but man are surrounded by great people to help us fight. One more thing, did you know that September is Hydrocephalus Awareness Month? Did you know that 1 in 500 children will be affected by this condition? That is too much! Do Parker and other Hydro Warriors a favor...wear blue one time this month and tell someone, anyone, why! With a little more awareness the possibility, or in this case the shuntability, of research and funding would increase dramatically. Awareness Matters. Wear Blue.
Sunday, June 8, 2014
Sometimes Even I'm at a Loss for Words
It would seem that life was continuing at home. After three weeks we headed back to Iowa City to get Parker's stitches out. Complete dejavu. This was at the time over a month ago that we took Parker to his surgery follow-up appointment to then only be immediately admitted the following day for three weeks. To say I was nervous about this appointment is an understatement.
The day before our appointment Parker projectile vomited, everywhere. This also added to my level of anxiety regarding him getting sick again. I told the doctor, "So, Parker projectile vomited everywhere. I fear this is the start of something bad. This is exactly what happened last time."
She looks at me and nods. Says nothing. Absolutely nothing.
You know those awkward times when you are waiting for a response, but you just get a stare? That was this situation. Then, I ask, "Sooo I guess we have to just sit here and wait? You can't do anything?"
"Yes," she replied. "I understand why you are scared and nervous, but he doesn't have a fever," she adds.
So, we took Parker home and continued to try to find a new definition of what our lives would be. Not going to lie, I was looking for the vomiting and fever to commence at any moment. It never did. No matter how hard it is, you have to continue living and just find a way to be normal. At this moment I still have no clue what normal is for us. I have become quite the helicopter parent, hovering over everything Parker does. I examine his diapers, monitor his food intake, take his temp several times a day and check his entire body for strange rashes. I can safely say that I drive both Casey and Parker absolutely crazy with my hovering antics. Sometimes they need to put me in time out.
While we've been home we have known about a couple of our closest friends who were planning on giving Parker two benefits. This entry is a day after our first benefit. Some of our dearest friends and family pulled off a very successful event in honor of our sweet angel baby.
When you find out that someone is giving you not one, but two benefits, you are just at a loss for words. That is hard to admit, because frankly, I am RARELY at a loss for words. The love and support people have for our family just overwhelms me - in a very good way of course.
I mean there are t-shirts out there worn by hundreds of people for my son! How freaking awesome is that!?! Talk about Hydrocephalus awareness! You can bet a ton of people at Wal-Mart check-out lines will be Googling Hydrocephalus, now.
As Casey and I were preparing for the benefit a lot went on in our little family that people are unaware of. Most of the attendees were unaware that Parker still wakes up every hour at night and I had slammed three AdvoCare Spark drinks, having only had less than 3 hours of sleep. We try everything to keep him comfortable because his incisions are still healing and he suffers terrible headaches in warm weather. The day of the benefit, Parker spit up every single bottle, which is very much not normal for him. His temp was slightly elevated and there was one point in the afternoon where I decided I wasn't going to attend the benefit because I was so worried about him.
When he spit up yet another bottle I sat on my couch and sobbed to my mom,who was all set to babysit him for a couple hours so Casey and I could attend the benefit together. I was literally crying my eyes out because I continue to fight blinding anxiety over my son's illness and when he will get sick again. I am in constant fear of losing my baby. My mom just sat there and listened to me. She listened to all of my fears and anxieties. When I was finally done sobbing she decided to speak.
"Cait you can't always worry about him. Babies spit up. Babies cry. Babies get fevers-especially teething babies," she said.
I reply, "Yeah mom, but those babies do not have a stupid brain disease. Those parents don't live every single day on edge."
"Those moms don't huge their babies not knowing if that's the last hug they will get in a while. I NEVER know when he will be taken away from me again," I add.
Her eyes fill with tears too. It pains her to see her daughter fight so hard to have a normal family. She continues on that my basket-caseness (exact words God love her) rubs off on Parker. He can sense my anxiety and when I'm a mess, he's a mess. Basically she told me to buck up and leave. She raised two children and they were fine.
Okay. I get it. There isn't anything I can do to stop an infection or malfunction. If it's happening, it's happening. Sometimes you have to let the cards play out. It's just...hard!
I was an absolute nervous wreck for this benefit. Being the center of attention is definitely not at the top of my list and if we weren't bringing Parker I'd say some of the attention was deferred to me. We took Parker in the morning to send the golfers off. When I opened the door to greet everyone, baby in hand, I couldn't believe it. I saw so many people who haven't even seen him. I have an almost 6 month old baby that people haven't been able to see because he has spent almost half of his little life in a hospital. These people not only include close friends, but family as well.
My husband was nominated to say a few words, because Lord knows, I could not handle it. I can write and hide behind the computer screen, but to get up in front of people and speak about Parker in such an emotional state, noooo way. He definitely did it and was amazing. Actually he wrote much of the speech himself only asking me for a little input. During his "Thank You" speech at dinner I started crying, shocker. I just never pictured myself, here. Who would? I know. No one would. But to be here and living this life. It was just a lot of "heavy" going on in that moment. When he was done I excused myself and sat in the bathroom to regain composure.
"How did we get here? How is this my life? How is this MY benefit?"
When i excited the bathroom, I realized that everyone was in such amazing spirits during the golf outing and dinner. I had a really hard time not crying through it to be completely honest. I wanted to cry, mostly happy tears, but sad tears too. Sad tears for my sweet baby. This was a reminder of what he has and will continue to endure with his illness. It's such a heartwarming experience to have so many people who care about you and your family, all in one room. I did not know most of the attendees, which only added to the warmth my heart was feeling. They haven't even met Parker, but their heart and prayers go out to him. People offered me words of encouragement.
"Keep on keepin' on!"
"You, my dear, are amazing. I do not know how you do it."
"I pray for your son every single night."
I mean the list goes on and on. They've never met me, but for some reason, our story has made it's way to them and touched their hearts. So much that they purchased dinner tickets, bid on silent auction items and introduced themselves to me to show their support. I still cannot believe it.
By time the night was over I literally went from feeling like the most unlucky mom to the luckiest mom in the room. All of these people. All of these smiles! The energy and optimism they had was exactly what we needed. Even if the monetary donations weren't involved, having people there to show their support was more than enough. We weren't alone in fighting this battle.
Casey and I cannot even think of a way to thank everyone. I mean, as I've said before, I am at a loss for words. We woke up today a little groggy and speechless. Parker was of course an angel for his Nana, having not spit up AT ALL after I left him. He woke up working on his fitness in his crib, entertaining himself so much that we didn't even know he was up. We had a heart attack at 6:45AM without his wake-up call.
Someday I will share these stories with Parker. I will let him read my blogs, certainly when he's old enough to understand, and express to him how much he is loved not only by his parents, but by so many others. I will stress how lucky he was to have the opportunity to grow up in such an amazing community. A community that acknowledges the hard times and celebrates the good. A community that saw him through high school graduation and continued to lift him up, when he was down. A community that prayed for him every single night. A community that shared in the tears his mother shed and helped wipe them away. Lastly, a community that showed his parents what love and support could mean.
We are forever grateful to the planning committee and participants in the benefit. You have given us so much love and support and it is our hope that this is the beginning of something very good for our little family.
Blessings and love to you all!
Assessments, Molds, Bubbles and Home
After Poop-a-Palooza 2014 I was able to regain a little more self-control. Parker was on his little back for weeks. If you remember we weren't able to pick him up or move him around without a lot of effort from the nursing staff. Because of this he has a pretty bad flat spot. I think I described it before as a cliff.
At the time of hospitalization we were celebrating Parker's "4 Month Birthday". At this point babies should be holding up their heads. Parker was not holding up his head. He was practically a newborn baby. You can't blame the kid. He has a HUGE head. I swear his head is the size of some 3 year old's head. It's a cute hydro head, but a big one for sure.
So, after a little pushing, the Physician Assistant agreed for the physical therapy consult. "He isn't moving around because he just had surgery," she said.
"He's not moving around because his head is the size of a 10 year old. Let's be real. It has nothing to do with surgery and everything to do with his Hydrocephalus," I reply.
She looks at me blankly. Commence stare down.
Why I had to push for this is beyond me. Hello. He is 4 months old and cannot hold up his head. Having just spent three weeks on his back and coming off of a surgery a little over a month ago, the kid doesn't have a chance. I guess I didn't see what the big deal was. Just call the Physical Therapist and have her see Parker. It's our bill. Hello.
My absolute favorite Physical Therapist in Iowa City stopped by. She assessed Parker Hydro Journey #1 and was sad to see him again. She said, "Well he's not doing some things he should be doing, but let me teach you some tricks."
Yes! Thank you! I am a first time mom and I have a child with "different" needs. I know this. The Physical Therapist and I had a long discussion about Parker's future developmentally. She told me about some programs we can get plugged into back home. I agreed that we should definitely look into it. We had a nice discussion about how parents of kids who need a little more attention sometimes act on giving more attention or pretend like they are "normal" and wing it.
I am not a gambler. I don't "wing it". Especially when it comes to my son. Casey and I definitely went through phases of grief when our son was diagnosed. Like I've said before, he has an incurable illness. We can do our best to treat him and control it, but we can't take it away. Parker will live a lifetime of worry and headache pain. It's an absolutely heart breaking reality as a parent. No control over your child's pain. So, when I'm offered some control and when someone finally says "this is what you can do to help him" you better believe I'm going to do it.
"Some parents just don't think their child needs extra help or attention. They just see how it goes as they get older. It's definitely been my experience that the wait and see approach isn't always the most beneficial when they are this little," she said.
I reply, "I am not doing him any favors by pretending he's like he's on track. The idea that he isn't definitely broke my heart. I am done complaining about it. I've asked doctors for months what I can do to help my son and they've all said, wait and see, and love him."
She nods.
"Thank you for giving me something to do to help. It might not be much, but to help him develop and gain strength is amazing," I said.
Tears sting my eyes. I couldn't help it. As I type this tears form again thinking about our conversation. As a mother I feel so helpless. At times I feel like a failure. I was telling my husband just a week ago how much of a failure I feel like sometimes. God created a woman to be able to bear children and bring them into this world happy and healthy. What an amazing gift! Obviously my "mother mold" broke somewhere and something went wrong... I know a lot of people close to me would disagree with that, but its how I feel. Like I've said before, no matter what anyone says, I will always blame myself. I cannot help the way I feel.
I had ONE job. Gosh!!!!
Reflecting on where my mold broke I also realize other unique gifts God gives to unconventional mothers. Some women can't conceive or carry their own babies. I am sure they feel the same way. God gives those mothers the gift of patience, which undoubtedly, makes them amazing mothers when they finally get those little angels in their arms. So, he definitely makes up for areas in which we feel defeated.
I guess what I'm trying to say is though I feel like my mold broke, I also realize that I was given other attributes at a higher scale that enable me to cope. My husband said God gave me humor, strength and perseverance above everything else. He said that's what gets our son through this.
He's right. Now, where do I sign!
Parker is high risk for a lot not only because of his Hydrocephalus, but because he had a Grade IV brain bleed at birth. In fact he qualifies for a lot of assistance developmentally because of his brain bleed, not his Hydrocephalus ironically. My biggest fear is Cerebral Palsy, or CP. The reality of it keeps me up at night. As if having Hydrocephalus and the possibility of brain damage isn't enough, let's give the kid CP. I've been told that CP can be diagnosed anytime from months to a couple years old. It's like holding your breath every time he is examined.
After our Physical Therapy assessment we were ready to go home. Parker would be quarantined for a bit at home. At the end of the day, if he were to get Staph, the damage would be done during surgery. We were just trying to keep his immune system "clean" from outside germ exposure. The doctor did not send us home with antibiotics. We were in charge of keeping his incisions clean and dry. Sounds easy enough. Yeah right.
Did I mention the surgeon who put in his ventric or external shunt did not shave his hair in that area? Quite fun ripping that band-aid off to clean his incision. SUPER fun time at our house. Every little clean turned into a mini wax session for poor Parker. I often wanted to shave it myself, but decided against it because I am a chicken and fear the razor would cut him, thus giving him an infection. Paranoid much?
My last question to our Neurosurgeon before we left was, "Now where can I buy that bubble for Parker to live in?"
He laughed.
"Oh. You thought I was kidding? Nice try," I reply.
So we head home with a baby a month older, three brand new incisions, an adorable quilt of the solar system courtesy of the Dance Marathon Team, and a whole new set of emotions and nerves. We also leave with new wipes, ointments, band-aids, formula and diapers. Do not forget the diapers! You open up one pack and they are yours! Boo-yah! Clean house, man! Every time we leave the hospital I feel like I just took a trip to the baby aisle at Wal-Mart. Love it.
Walking out of the hospital is always a relief, but at the same time the most terrifying experience. I feel like a normal family in the confines of the hospital. When we walk out of the secured hallway with the rest of the public I realize that we aren't the normal family. People stare at my son. They look at me with that all too familiar sympathetic smile. They question how something like this can happen to a child so small. Been there done that!
The drive home is usually quick and the first night at home is absolutely horrible. I am always a nervous wreck and camp out in the nursery. Without the heart monitors and 24/7 nursing staff I feel beyond terrified. I remember escaping to Wal-Mart for groceries when we were home that first week. It felt like a vacation.
Casey asked me, "Are you sure you remember how to drive?"
"Very funny. Yes I remember how to drive," I reply. To myself I thought, do I? It has been a month! I made it to my car feeling like I left something at home. Oh yeah, my baby. My little precious angel who I had been with every single day. It was strange to not have him with me. I had a heavy heart leaving him at home. When I was alone I was thinking how different he was. He was sooo different. He wasn't eating, laughing, or sleeping. I thought that this was the time I "lost" a piece of my son. Every time he goes into surgery I am terrified of what will happen or who he will be when he comes out.
I remember crying to a friend on the phone telling her how different he was. I was absolutely terrified. It was honestly like he wasn't even here with me. It took several days for him to come back to me. I think he was "homesick" for the hospital! As crazy as that sounds he has spent so much time there with all that attention, he was out of sorts! He adjusted eventually, but it was a very scary time.
I am grateful for each day I have with him at home. Every single day is a battle. Every spit-up, higher temperature, sleepless night, headache, etc.. scares the holy heck out of me. I never take a second, minute or day for granted. Truth is, I never know when he will be taken out of my arms again. It is my constant reality and unfortunately the odds are not in my favor.
Hydrocephalus sucks.
At the time of hospitalization we were celebrating Parker's "4 Month Birthday". At this point babies should be holding up their heads. Parker was not holding up his head. He was practically a newborn baby. You can't blame the kid. He has a HUGE head. I swear his head is the size of some 3 year old's head. It's a cute hydro head, but a big one for sure.
So, after a little pushing, the Physician Assistant agreed for the physical therapy consult. "He isn't moving around because he just had surgery," she said.
"He's not moving around because his head is the size of a 10 year old. Let's be real. It has nothing to do with surgery and everything to do with his Hydrocephalus," I reply.
She looks at me blankly. Commence stare down.
Why I had to push for this is beyond me. Hello. He is 4 months old and cannot hold up his head. Having just spent three weeks on his back and coming off of a surgery a little over a month ago, the kid doesn't have a chance. I guess I didn't see what the big deal was. Just call the Physical Therapist and have her see Parker. It's our bill. Hello.
My absolute favorite Physical Therapist in Iowa City stopped by. She assessed Parker Hydro Journey #1 and was sad to see him again. She said, "Well he's not doing some things he should be doing, but let me teach you some tricks."
Yes! Thank you! I am a first time mom and I have a child with "different" needs. I know this. The Physical Therapist and I had a long discussion about Parker's future developmentally. She told me about some programs we can get plugged into back home. I agreed that we should definitely look into it. We had a nice discussion about how parents of kids who need a little more attention sometimes act on giving more attention or pretend like they are "normal" and wing it.
I am not a gambler. I don't "wing it". Especially when it comes to my son. Casey and I definitely went through phases of grief when our son was diagnosed. Like I've said before, he has an incurable illness. We can do our best to treat him and control it, but we can't take it away. Parker will live a lifetime of worry and headache pain. It's an absolutely heart breaking reality as a parent. No control over your child's pain. So, when I'm offered some control and when someone finally says "this is what you can do to help him" you better believe I'm going to do it.
"Some parents just don't think their child needs extra help or attention. They just see how it goes as they get older. It's definitely been my experience that the wait and see approach isn't always the most beneficial when they are this little," she said.
I reply, "I am not doing him any favors by pretending he's like he's on track. The idea that he isn't definitely broke my heart. I am done complaining about it. I've asked doctors for months what I can do to help my son and they've all said, wait and see, and love him."
She nods.
"Thank you for giving me something to do to help. It might not be much, but to help him develop and gain strength is amazing," I said.
Tears sting my eyes. I couldn't help it. As I type this tears form again thinking about our conversation. As a mother I feel so helpless. At times I feel like a failure. I was telling my husband just a week ago how much of a failure I feel like sometimes. God created a woman to be able to bear children and bring them into this world happy and healthy. What an amazing gift! Obviously my "mother mold" broke somewhere and something went wrong... I know a lot of people close to me would disagree with that, but its how I feel. Like I've said before, no matter what anyone says, I will always blame myself. I cannot help the way I feel.
I had ONE job. Gosh!!!!
Reflecting on where my mold broke I also realize other unique gifts God gives to unconventional mothers. Some women can't conceive or carry their own babies. I am sure they feel the same way. God gives those mothers the gift of patience, which undoubtedly, makes them amazing mothers when they finally get those little angels in their arms. So, he definitely makes up for areas in which we feel defeated.
I guess what I'm trying to say is though I feel like my mold broke, I also realize that I was given other attributes at a higher scale that enable me to cope. My husband said God gave me humor, strength and perseverance above everything else. He said that's what gets our son through this.
He's right. Now, where do I sign!
Parker is high risk for a lot not only because of his Hydrocephalus, but because he had a Grade IV brain bleed at birth. In fact he qualifies for a lot of assistance developmentally because of his brain bleed, not his Hydrocephalus ironically. My biggest fear is Cerebral Palsy, or CP. The reality of it keeps me up at night. As if having Hydrocephalus and the possibility of brain damage isn't enough, let's give the kid CP. I've been told that CP can be diagnosed anytime from months to a couple years old. It's like holding your breath every time he is examined.
After our Physical Therapy assessment we were ready to go home. Parker would be quarantined for a bit at home. At the end of the day, if he were to get Staph, the damage would be done during surgery. We were just trying to keep his immune system "clean" from outside germ exposure. The doctor did not send us home with antibiotics. We were in charge of keeping his incisions clean and dry. Sounds easy enough. Yeah right.
Did I mention the surgeon who put in his ventric or external shunt did not shave his hair in that area? Quite fun ripping that band-aid off to clean his incision. SUPER fun time at our house. Every little clean turned into a mini wax session for poor Parker. I often wanted to shave it myself, but decided against it because I am a chicken and fear the razor would cut him, thus giving him an infection. Paranoid much?
My last question to our Neurosurgeon before we left was, "Now where can I buy that bubble for Parker to live in?"
He laughed.
"Oh. You thought I was kidding? Nice try," I reply.
So we head home with a baby a month older, three brand new incisions, an adorable quilt of the solar system courtesy of the Dance Marathon Team, and a whole new set of emotions and nerves. We also leave with new wipes, ointments, band-aids, formula and diapers. Do not forget the diapers! You open up one pack and they are yours! Boo-yah! Clean house, man! Every time we leave the hospital I feel like I just took a trip to the baby aisle at Wal-Mart. Love it.
Walking out of the hospital is always a relief, but at the same time the most terrifying experience. I feel like a normal family in the confines of the hospital. When we walk out of the secured hallway with the rest of the public I realize that we aren't the normal family. People stare at my son. They look at me with that all too familiar sympathetic smile. They question how something like this can happen to a child so small. Been there done that!
The drive home is usually quick and the first night at home is absolutely horrible. I am always a nervous wreck and camp out in the nursery. Without the heart monitors and 24/7 nursing staff I feel beyond terrified. I remember escaping to Wal-Mart for groceries when we were home that first week. It felt like a vacation.
Casey asked me, "Are you sure you remember how to drive?"
"Very funny. Yes I remember how to drive," I reply. To myself I thought, do I? It has been a month! I made it to my car feeling like I left something at home. Oh yeah, my baby. My little precious angel who I had been with every single day. It was strange to not have him with me. I had a heavy heart leaving him at home. When I was alone I was thinking how different he was. He was sooo different. He wasn't eating, laughing, or sleeping. I thought that this was the time I "lost" a piece of my son. Every time he goes into surgery I am terrified of what will happen or who he will be when he comes out.
I remember crying to a friend on the phone telling her how different he was. I was absolutely terrified. It was honestly like he wasn't even here with me. It took several days for him to come back to me. I think he was "homesick" for the hospital! As crazy as that sounds he has spent so much time there with all that attention, he was out of sorts! He adjusted eventually, but it was a very scary time.
I am grateful for each day I have with him at home. Every single day is a battle. Every spit-up, higher temperature, sleepless night, headache, etc.. scares the holy heck out of me. I never take a second, minute or day for granted. Truth is, I never know when he will be taken out of my arms again. It is my constant reality and unfortunately the odds are not in my favor.
Hydrocephalus sucks.
Subscribe to:
Posts (Atom)