Ford is ONE

Before having Ford, I told myself I wasn’t going to be “that mom” who plans an extravagant first birthday. Ha, the things we say before actually becoming a parent.  I created Ford’s 1st birthday Pinterest board when he was only a few months old. About 5 months before his 1st birthday, I had the entire party planned. Yeah, I know… I’m cray.

When Ford’s ETV surgery was scheduled for August, I was relived because that would give him about 6 weeks to recover and be well enough to host his 1st birthday party. Goodness gracious, God had another plan for him. Ford had major complications with the ETV surgery and ended up staying at Primary Children’s Hospital for 2 months. He celebrated his first birthday in a hospital bed, hooked up to wires, drains, and tubes.

I realize that most parents get to celebrate their children’s 1st birthday in the comfort of their home, surrounded by friends & family. Their child gets a smash cake and loads of presents. They have fun games & themed party favors. And while that might be the norm, it is not lost on me that there are other mother’s celebrating their child’s 1st birthday (or any birthday) in a hospital. I want to share how I pulled off a fun, festive, and inexpensive birthday for my son while he was in a hospital crib.

O-FISH-ALLY ONE

When we were given the news that Ford would not be discharged before his 1st birthday, I was devastated. But you know what? Ford deserved the best birthday party a hospital could offer. I refused to let his big day go unnoticed so I decided to decorate his room with the homemade items I had made. We turned his room into an under the sea party! Click HERE for the DIY party decorations.

I used streamers for the water and hung cut out fish to look like they were swimming. The bobbers that spelled O-N-E which were supposed to go on his highchair, I hung on his hospital crib above his pillow. I made a first year milestone collage – I LOVED taking pictures of his monthly milestones and knew I wanted to showcase them. I brought most of his gifts to the hospital so that he could open them on his big day. His actual birthday was on a Tuesday, but I set all this up on Sunday and left it up all week – I felt like he deserved a week long birthday celebration.

By the time Ford’s first birthday rolled around, he had already been at Primary Children’s Hospital in Salt Lake City, UT for about 6 weeks. The doctors, surgeons, and nurses knew him well. The nurses were especially smitten by him. All his favorite nurses came by to see him that day (even if he wasn’t on their rotation). They brought him books, and stuffed animals, and snuggles. This wasn’t the birthday that I had planned and hoped for, but those nurses made his day EXTRA special and I am forever grateful for their kindness.

Ford had been very sick leading up to his birthday. He was left very weak from a cyst fenestration surgery, he couldn’t keep any food down (even with a feeding tube), and he lacked “life”. Somehow, on his actual birthday, he perked up a little bit. He was able to keep down some food and was even able to try his first tiny piece of cupcake. It was such a miracle to see him smile. We only had our parents come up to the hospital that day and man did it cheer Ford up. But the absolute BEST part of his birthday, was that Josh & I both had the opportunity to hold him for the first time in days… talk about the most magical moment. His 1st birthday, while not what we imagined, turned out to be a wonderful day and one we will never forget.

**If you are planning a birthday party in a hospital, remember to run all decor / visitors / food by the nurses. They will be able to tell you what is allowed.

We are Home!

We are home. And Ford is thriving!

We were discharged on Friday, August 23rd. We spent this weekend enjoying the amenities of our own home, mostly our own beds & not paying for coffee! 😂 And have enjoyed watching Ford become his normal self: full of smiles & laughter and an appetite that could put a grown man to shame. His sass is back full force and he makes sure to let us know when he wants to be the center of attention.

We are already seeing the benefits of his surgery. Ford has always tucked his chin down after a few seconds of holding his head up due to the pressure on his brain. Y’all, we can see his neck now because he holds his head up! His balance has also improved, he is sitting up for longer periods of time and reaching for toys without toppling over. The size of his forehead and even the shape of his head have changed. He feels lighter when we pick him up because he’s supporting more of his own weight. We pray the ETV surgery continues to work as we can so obviously see the benefits.

Since being home, Ford has had some pretty intense nightmares. The hospital stay(s) were traumatic for him. The ONLY thing that comforts him is snuggling his head as close as he can to us and rocking him back to sleep. We hope that as we gain more normalcy and get back into our routine, the nightmares will subside.

Thank you again from the bottom of our hearts for the love, support, and concern during this awful experience.  It takes a village to raise a baby and y’all prove time and time again that my village rocks! ❤️❤️❤️

Broken

Today, I broke.

There were many times in Ford’s hydrocephalus journey where I thought I was breaking. I think the anticipation of his surgery and then the adrenaline during his hospital stay kept me from completely falling apart. But today, after discovering his incision leaking and swelling, I just broke. I sobbed uncontrollably while staring at my child’s surgery incision, knowing that something was wrong… again.

The next hours seemed to drag on for days. I called Ford’s neurologist & pediatrician offices in hopes to find out if his incision was infected. When I called to make an appointment with my pediatrician, the receptionist told me she was out of town and would be back tomorrow. So I scheduled an appointment for tomorrow and asked to speak to a nurse. The nurse let me know that ultimately the surgeon would have to be the one to determine if the incision was indeed infected. It took 4 hours of calling & leaving VM’s for the neurologist’s nurse to get back to me. She said that the doctor took a look at the pictures I sent and he “thinks” the incision looks ok. BUT if it continues to leak then we’d have to go to the ER right away.

I lost my breath. Did she just say ER? I can’t do it. I cannot pack one more bag to go to the ER. I cannot sit for hours on end with NO answers only to be admitted to the hospital. I cannot watch an IV team unsuccessfully try to get an IV in his vein. I cannot wait for doctor after doctor to tell us they don’t know what’s wrong. I cannot see the life drain from my son’s face again. I cannot watch him fight for his life while it seems no one cares. I cannot go back to the ER.

My husband made the decision to go to our local Kids Insta Care so we could see a doctor BEFORE going to the ER. We were seen within 10 minutes and it was immediately apparent to the doctor that Ford’s incision was indeed infected. He prescribed him an oral antibiotic and we were on our way.
Everything is ok now, right? He isn’t running a fever. He has an antibiotic. He is OK.

But I am not OK. I’m broken. I realized today that while we’ve been home for 3 days I haven’t really slept. I wake up sweating after having awful dreams or I wake up to Ford screaming in pain although he is fast asleep in his bed. Flashes of Ford ripping his body from side to side in pain haunt my thoughts. Thinking of the life literally draining from his body and just wondering how the hell I’ll get through life without him. When picking something up I realize my hands are trembling from yet another anxiety attack. My hair is actually falling out in clumps, I’m sure from stress. I am angry at myself; if I was more healthy when I got pregnant, could I have prevented this? I am devastated that my son has to endure so much pain and so many trials. I feel guilty for even feeling so broken because I know there are mothers out there that have children with more severe medical challenges.

Today, I am broken but I know I can’t stay broken. I have to tape all the broken pieces back together because I am a mother & I need to continue to advocate for my son and get him healthy. Today I am broken, but tomorrow I must be whole again.

Post Op: Day 6

Day 5 post op was awful & last night being so scary. Ford had another episode of convulsing in pain and projectile vomiting. He couldn’t hold down any liquids by mouth – everything had to go through his IV. His oxygen & heart rate kept plummeting. His nurse worked fast & diligently to get him back to base line. I sobbed and was terrified that I was losing my son. I selfishly asked God why he would give me something I so obviously couldn’t handle. I was breaking.

And then our prayers were answered! Ford’s surgeon came to see us this morning and believes Ford has chemical meningitis. Chemical meningitis can occur when a small amount of blood gets into the spinal fluid during surgery. His team of doctors have begun treatment for this and the results are astounding! He is tolerating fluids by mouth & getting his appetite back. His cheeks are rosy & the sass is strong. He laughed for us today & was awake for longer periods of time! He is still in observation but we all think he’s on the road to recovery.

Each mountain Ford is given, he moves it. ❤️

Post Op: Day 5

Early this morning Ford was admitted to Primary Children’s… again. He began violently vomiting again and couldn’t even keep down a sip of water. He’s been lifeless & moaning/uncomfortable all day. We have ZERO answers yet.

All I keep asking is why? Why MY baby? I want to trade places with him so badly. I want him to be happy & healthy. 😭 I’m absolutely heartbroken.