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.
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