Sick on Holiday Weekends….

Why is it that Bella likes to get sick on holiday weekends?  We hustle down town and then sit all holiday weekend waiting for everyone to come back to work. 

Bella is pretty miserable.  Her heart rate is pretty high.  Her doctor said to switch everything to the J port (nothing through her tummy) otherwise she vomits.  She isn’t in any danger of dehydration because the J port is working and giving her formula, and she is having plenty of output.  :)  The doctor suspects (over the telephone) that her g is in the wrong place.  What we need is a contrast study (another one) with IR.  Two options she said.  We could go in to the ER or we could call on Tuesday and set up an appointment, hopefully for Wednesday.  We will already be down there, seeing pulmonology and cardiology.  Ugh!  Double ugh!

Guilt.  Guilt.  Guilt.  I know the drill.  We would sit and wait and wait, probably till Tuesday or Wednesday, down town, admitted, for the contrast study.  We would have to be seen by ER residents who are clueless about kids like Bell.  I just don’t want to do it.  And….the other half of my brain says….what if it isn’t the G tube after all, what if it’s something else?  Sigh.  Guilt.  I think it’s her belly. She has no fever, no new redness.  Unless her symptoms change, I think we’ll hang out here. Me rocking and bouncing and praying and poor Bella sleeping and fussing.  Poor sweet thing.

10 Months Old

Ten reasons we love Bella.

1. Her beautiful smile

2. Her piercing and intelligent  eyes

3. Her cute tongue

4. Her growl when she tries to talk around her trach

5. Her chubby thighs

6. All of that hair!

7. Her adorable hands

8. Her crooked toes

9. Her sweet, loving personality

10. Her drive to fight and her will to live month after month, week after week, hour after hour, minute after minute, second after second.

How we love you little one!  Happy Ten Month Birthday!

Sammi’s Post Part 2

Sammi made another movie that day that explains the vent better.  She calls it a trach, but oh well.  The first part is just her singing to Bella.  Yeah for Sammi, my future Child Life Specialist.  :)

Favorite Aunt

Between Jason and I's sisters, my girls have many Aunts to choose from for "Favorite Aunt." When we came home from the hospital this time, we came home with a GJ button rather than a G button. One feeds your belly. One feeds your intestines. One big difference is that you have to be on continuous feeds with a GJ button. That means there is always a tube connected to Bella's belly. I thought about this and came up with three problems that I needed to solve.
1. Clothes
2. School
3. Years of no food

In reverse order

3. Bummer! Seriously - I guess because I'm thinking about it, I have noticed how much we associate with food. 2 friends of mine in the last 2 days have posted about food - popcorn and cupcakes (yum!), but not something my Bell will be able to eat. What are the implications of not eating for years - oral aversion, big time. My OT (who happens to specialize in oral work, how blessed are we?) knows we have a lot of work ahead of us for many years. When Bella does finally get to eat her first piece of birthday cake - it will be a moment to truly celebrate!

2. My hope is that Bella will one day be off the vent and have the trach removed. My secret hope is next summer. My 2nd best hope is the following summer. Whatever happens, happens and we'll deal. But IF she can get off the vent and not have a trach by the time she is three, we will be talking about school. School! School with a child that is continuously feed...hmm....guess what? They make back packs for little ones to carry around their feeding pumps and feeding bags. Problem solved.

1. Clothes - I went through her dresser and realized that at our current size (3-6 months - wahoo Bella!) most of her clothes consisted of a onesies with something - for example, a onesies and cute matching pants. Before the GJ, we could bolus feed her and then remove the tube. We could pretty much keep her clothed. I thought about this. We could just keep the onesies snapped and then unsnap it when we needed access to her ports for meds. (Silly me to worry about these things, I know. There are more important things in life - but she is my baby girl and I want her to wear clothes and look nice.) My sister happened to stop by and we were discussing this. She (the artsy one (read Shelly, could never have figured this out - ever)) said, no problem. And she came up with the perfect solution right there on the spot. She scooped up all of her onesies and fixed them right up. The result - my baby can wear clothes again while eating and getting her meds. Wahoo! Thank you Asia! Did I mention that she did this all the same week she was packing for an international move with a newborn, a toddler, and a husband out of the country? So, sorry to all of my sisters and sisters-in-law, but ASIA, is the favorite aunt of the week!!

What did she do? She ripped out the side seam and stitched it, then sewed in some velcro circles. So now, we can just lift that part when we need access. Yipee! She did leave me some extra velcro circles to do her 6-9 month onesies - like that is going to happen. That is why this poor kid has Grandmas and Aunts. Her Mama is not the domestic goddess - those gifts were passed out to my sisters. :)

Sammi's Post

Sammi made this short documentary on Bella a few days ago when she was still feeling well. It's really cute. I think she has a great understanding for a ten year old!

Not doing too well

Yesterday she was off, restless, sleepy.  We tried to keep everything minimal to allow her to rest.

Today is worse.  Sleepy.  Crabby.  Her GJ site has been hurting her.  I don’t know what that is.  Spitting up gastric juices.  Poor sweet love.

I have a lot to post about Bella – fun stuff.  I’ll try to get those up soon when I’m not rocking my babe and doing CPT.

The Nap Nanny is Here!

Wahoo!  Good-bye aspiration!

 

We chose yellow to match her room.  Thank you Grandma!