I haven’t put these up – they are so fun! She looks so big!
It’s really fun for these two because the stander puts Bella right at Joy’s height.
I’m really glad that she enjoys it!
I am such a wonderful Mom – not!
We were transferring her from her wheelchair to her bed. Somehow I didn’t see that her extension tube sitting out. It must have caught on something. I am so sorry babe! I pulled out her GJ button – completely. We had a spare g-button, thankfully, so I slipped that in to keep her stoma open. Then we called the doctor. We are holding her feeds till tomorrow when we can hopefully get an appointment in IR and get a new GJ. We went through and figured out which were her essential meds and we’ll sit her up in her wheelchair for at least a half hour to help prevent any aspirations. Sorry love. I know where we’ll be spending tomorrow. :(
Funny thing – my 11 year old walks in, totally oblivious to the crisis that had happened (Are they that common around here that we don’t even notice them anymore?). She sees the GJ on the table – and asks, “Why is Bella’s tube that she eats with on the table?” :)
Right now the kids are experimenting with the tube to see how it really works – the things my kids know! (shaking my head)
Allergies are still alive and well here in Houston. But the pollen count isn’t nearly as high – thank goodness. Bella isn’t totally free from the need for extra oxygen and xopenex, but she was able to get off the vent for one brief hour this week – a step in the right direction.
She watches us eat and she is so curious. She has been cleared for therapeutic tastes, but not for eating. She loved tasting the orange droplets I was squeezing from my orange.
My Grandfather got to meet Miss Arabella. I was afraid that he would be overwhelmed, but he wasn’t. He is a sweet man.
She is just too cute!
We tried something different this week. For the nights that a nurse doesn’t show up, we set up an old crib in our room. It’s much nicer than sitting up all night in a chair in her room. :)
I gave her a bath this morning in the sink and she splashed all on her own! She is growing up and doing so many baby things – I love it!! My hand is there to protect her from any water splashing up into her trach.
Poor sweet Bell! She has been on oxygen and xopenex all week just trying so hard to keep those sats up! But we are home – and any day at home is a good day!
This is the culprit! Pollen. This is our driveway – icky! But she smiles through it all. Love ya babe! She is growing up. She wants to sit up. She tries so hard. That is our one year goal for PT - sitting. The trunk control is coming. Bell, you amaze me. Every day and every little thing is a struggle and you give it your all. Thank you for coming to me and teaching me every day to try my best at everything. Love ya babe!
Becca dressed Bella in a matching hoodie – she just needs to grow a little :) It is very good at hiding all of her tubes :)
Today I got a reality check. Our littlest sweetheart lives with the help of technology and electricity. She has developed some type of secondary infection from either allergies or a virus (my diagnosis – to be confirmed tomorrow in clinic :) ). I have been worried as her oxygen needs have steadily increased and her secretions have gotten grosser and grosser. Then the power went out. Ugh! Stress on top of the worry. I am so grateful my Jason was here. He got the generator out and all of her equipment plugged in. That is one more thing I need to learn how to do (especially before he leaves on Friday to visit his parents). What a blessing we had that while the power was out!
I convinced the NP that we didn’t need to go to the Emergency Room today. But I am under strict instructions to head that way if she needs anymore O2 than she is on or has any more signs of distress. I’m hoping we can continue our lucky streak and be able to treat this at home. At least the power came back on!
What fun! We went up to the farm. My family was gone, so it was just us and 30 acres. It was wonderful!
We did it! This is the first time in almost a year that Bella has been transported in anything other than an ambulance. The kids thought we were packing to stay a week! :) I must admit the ambulance is easier – you put everything on the gurney and then load the gurney. Loading Bella and her equipment is a 2 person job!
I learned that Bella – with that amazing tongue of hers – can touch her nose with her tongue. That is some talent, little miss!
This is Lee. She is our favorite paramedic. We try to make all of our appointments when she is scheduled to work. She knows Bella’s medical history about as well as I do – and she just loves our sweet girl!
Sweet Bella! We were back in endocrine today. We are getting abnormal results again, so back on the synthyroid. We are going to have a thyroid ultrasound to see if we can find a cause – should be fun with the trach. She called down to nuclear medicine just to make sure they could do it. The fun never stops!
The Stander!!! It’s pink! She seems to like it. She tolerated it well. Her stats were great! Her heart rate only went up a touch. Way to go little one! And then a picture of Bella and Valerie. Bella loves Valerie. Valerie loves Bella. I love that Valerie is so dependable and takes such good care of my girl. :)
Arabella is doing so well. I am so pleased. I am so thankful!
To those of you with nursing – we are supposed to have almost 24/7 coverage. I am about ready to tell the nursing company to take a hike. From what I’ve been told they are all about the same. They promise the moon and just don’t or can’t deliver. At what point do you say – enough, I’m done. It’s not like we can’t take care of Bell – we can, we do. It’s the uncertainty of our lives and schedule that is making me nuts. Advice?
Yesterday was Bella’s one year heart day. Thinking back over it was overwhelming, but today I was reminded how grateful I should be.
I was outside working on my yard – which hasn’t had any attention since Bella came home – too long. A lady stopped in front of my house and popped out of her car. She walked over to where Joy and I were sitting putting down mulch. She works at the girl’s Elementary School. She helps with the car pool and the lunch room. She had seen Joy in the car before and had asked her name this morning. She walked right up to her and reached out her hands, “Does she have…” and she paused. Now as a Mom of kids with special needs, I have learned to sense the difference between people and how they asked that question. There was no danger here, nothing of ridicule, or inappropriate curiosity – there was almost a longing. “Down syndrome." I completed her sentence. “Yes, she does.” She replied, “I thought so. I had one.” I noticed the past tense. Her name had been April. She was almost 4 years old when she had her heart repaired. She told me she was a huge Daddy’s girl. She told me how much she loved that little girl. She told me how her fingers were blue on the tips. She told me how nervous she was all during that surgery. She told me they couldn’t get her off the heart/lung bypass machine. She lived seven hours after her surgery. 7 hours.
Then I did something I never do, I took her in to meet Bella. I showed her the ventilator. We talked about how things are different now – 29 years later. March 16th was her surgery and the day she died. I hope seeing my girls was a blessing to her. 29 years – wow. A mother never forgets.
was Bella’s Open Heart Surgery to repair her Complete AV Canal.
Bella 3/3/9 Bella 3/3/10
The surgery that we had been waiting and waiting and waiting for. The surgery that they promised would fix our baby and send us home to a normal life. The surgery that really only ended up being a stepping stone toward finding and facing much worse problems.
Oh my baby, you look fabulous today one year later!
Happy 1st Heart Day my Bella!
Such fun!! I decided we should paint today! Junior is always doing fun projects – so here is our first attempt. :)
1st – Let her play with the paper
2nd – let her feel the paint
3rd – She likes it!
5th – The Masterpiece!
“It was the best of times, it was the worst of times.”
Those are my feelings about home nursing on a good day. Just think about a home health company sending a sick nurse (not the 1st time) to my sweetheart – and me sending her home. Imagine my email to the account manager when the nurse tells me (again) that the nurses are told to come in sick. Imagine my day with my not feeling so well little love. And then behold the chocolate shake my hubby brought me home to cheer me up that night. Such a fun day! At least the babe is beautiful – and totally worth every hassle!