Kayla. I don't know how old she was. I wish I knew more about her. She seemed really spunky in photos.
Amber. She passed today. I'm dying inside. I learned about life with an I-Cell baby by reading her blog. Hers was the first face I connected to I-Cell. She softened the blow for me by living with curiosity and grace. Amber's health had been deteriorating for some time, but I was not prepared for this news. She was 3 1/2 years old. She leaves behind a younger brother, Charlie who also has I-Cell, and two super young but wise parents.
Amber's passing made things so much more real to me. I know that their time here is brief but that reality didn't really hit me until now.
I have an urgent need to spend every minute of my waking hours with Niko. The desire is so strong that I have a metallic taste in my mouth. I even treasure listening to Niko's raspy breathing while she sleeps. The sound of her breathing flows and fills my lungs with tangible fulfillment, similar to the satisfaction of inhaling from a cigarette (I used to smoke 14 years ago).
Oh Niko, I wish I had the ability to stretch time.
Amber's doll with matching cannula and G-tube
Rest in peace sweet angels. My heart breaks but I know you are not in pain anymore.
My husband tells me to stop reading about other I-Cell children. Perhaps he's right. Am I losing my sanity? Or am I saving it? In a perverse twisted universe I feel more grounded by getting to know other I-Cell families, learning about what I should and should not expect for the year(s) ahead with Niko.
Allie has the flu and strep. She cannot breathe on her own anymore. she was intubated.
Allie now faces two very scary procedures.
The doctors determined that she needs to get a tracheotomy, however her neck is so small the operation would be problematic.
She also will need to be fed by a G-tube. To make this more complicated, Allie has a hernia (common for I-Cell kids) which pushes most of her organs up to her chest. Her stomach is near her rib cage by her left arm pit, which makes this procedure a difficult one.
I saw a video of Allie in the hospital with a bi-pap covering most of her face. Her eyes were fixed on her mother and she kept repeating these words slowly in her beautiful high pitched voice, "I… Love… You… I… Love… You..." I don't think I'll ever forget that scene.
Allie has two healthy sisters and a third sister who also has I-Cell.
FIRST THING
The suction machine finally arrived! Niko has been stuffed up for over a month now. Her sleep has been totally interrupted. She wakes up choking and screaming. She sounds phlegmy and rattling all day. The bulb syringe is a shameful joke. The nosefrida did close to nothing. The other I-Cell families recommended a suction machine. In fact it seems like most of the families use them.
Obtaining a machine has been a struggle. Our insurance plan doesn't cover any equipment. We were denied for everything that doctors have recommended thus far. I've talked with social workers, insurance agents, doctors, specialists, etc. And then suddenly today, my doorbell rang and a friendly man delivered the machine. I have a sinking suspicion that I'll receive a fat bill in the mail for this. But I'll deal with that when it happens.
I'm pissed off that this took so long to arrive. And I'm steaming mad that Niko has suffered unnecessarily for over a month. But am I glad that there is still a need for it? Weirdly so.
The model I received is Roscoe 50006.
It came in this travel bag.
This is the pump. It's really simple - just an on/off switch and a level dial. The rep told me to leave it at high. They also gave me a replacement tank.
These are the little sucker tubes called… "Little Suckers". The rep mentioned that they also have nasal tubes made specifically for babies with a soft bendy plug at the end that creates a seal at the nostril. But he didn't bring any because my doctor didn't prescribe them. hhhmmmmmpppppp.
I gave this machine a try and it didn't get anything out of her nose. Niko's congestion sounds like it's deep in the back where the back of nose and throat meet. I'll give this another try tomorrow, or perhaps tonight when she wakes up screaming.
SECOND THING
Niko rolled up today. For real! I left her on her back on the floor mat and then looked away from her. When I turned back around a few minutes later she was on her tummy. She didn't even complain, as she usually does when I place her on my tummy. This was her very first bona fied success at rolling over and I missed it. She looked stunned. The look of "What the hell just happened? And how did I get here?" was clearly on her face. I'm so proud. The passing of her first birthday must have forced her to face her challenges, set goals for herself and strive to meet her goal dates.
THIRD THING
We went for her first PT and OT session at CCS (California Children Services). She's been getting PT and OT at the house (through another program) but this was at the CCS office. She met a new team of therapists and seemed to like them. They also have a different style from her other therapists and she learns better when she's exposed to new environments.
Somehow now that she's one year old, she seems different. More present. More engaged. More cognisant. More mature. She acknowledges engagement with people right away. Her face lights up. She's just different.
I caught this on video today. I know that there are countless videos on YouTube of parents making ridiculous noises in order to get their babies to laugh. But this is hysterically fun. And I dare you not to smile.
I put Niko in a playground swing for the first time today. She freaked out and panicked about being unsupported until I propped her in there nice and tight with my jacket. Then she seemed to enjoy it. She's the sweetest little strawberry. I could just bite her. What is it with parents? We all want to devour our kids.
Today is Niko's 1st birthday. I can't believe she's one already. This day is bittersweet. It's impossible not to think of the milestones normally reached by the end of a baby's first year; sitting, crawling, eating, walking, babbling, roaming around, exploring, etc. But of course I can't focus on these things. And I usually don't. But the first birthday is a big landmark and a big reminder. Niko has not even had her first bite of solid food yet.
But she has made some impressive progress.
She now has a somewhat regular sleep routine. She takes two naps a day, at around 10:30am and 2:30pm. Her final bedtime is around 7pm.
I can now place her in the bassinet to sleep and walk away. She can fall asleep on her own. This is HUGE.
She also has a feeding routine. She gets 4oz of formula every two hours during the day, 6 feedings total.
On a few occasaions she was able to hold on to a wedge of fruit and suck on it for juice. The fruits she can hold so far are apples and pears. And I have offered strawberries and watermelons to her (I have to hold these since they break apart easily, and she doesn't like the mesh bags). This girl likes fruit.
She can reach out and touch the face of the person holding her, which is a sweet way to connect with her.
And she can laugh out loud and recognize humor like a 'real' kid. I say real because I sometimes forget to treat her like a real baby.
Here is a video a friend shot today. We sang happy birthday to Niko with a mini cake. She didn't eat it and looked around with a pretty puzzled look on her face.
