I just got off the phone with the pulmonologists office and they scheduled the CT's and bronchoscopy for April 8th. I was hoping to get this done sooner but they need to have two blocks scheduled for anesthesia since she will be having both tests at the same time. I just put a call into her cardiologist to let him know about the CT and find out if she needs antibiotics before the scope.
Arianna has been doing great. She is getting so good with her walking and even starting to run. She has been sleeping alot better since we put her bed next to ours. I have to admit I LOVE having her sleep right next to me in her own bed. I can reach my arm out in the middle of the night and feel her breathing, which reassures me that everything is ok. She hasn't needed oxygen the past 2 days...YIPEE!! She is not eating like she was last week but I'm hoping that will pick back up soon. We saw the nutritionist on Tuesday and Arianna weighed 18 pounds 8 ozs, which is a 4 oz increase since last month. She is slowly gaining but at least we're gaining!
Hope you all have a wonderful weekend!
11 comments:
Oh my! Yea on the weight...she is the same as Micah! Our little squirts!
I am sorry the tests are not as soon as you would like, but at least you have time to prepare yourself for them.
Heart Hugs,
Samantha
Vanessa,
What exactly are they looking for in the cat and bronch. studies??
Hope she sails through them!!!
Our babies are keeping us TOO busy!
So...the clapping monkeys are nationwide...wow! I'm glad she passed and all is well! YEAH! You are due for some great good news!
Glad to hear she's stayed off the oxygen too...that's great news.
She is just so cute...keep posting those pictures...she makes me smile!
Yeah on the weight gain & no oxygen! I'm jealous of her almost running! Glad to hear that the tests are scheduled. April will be here & gone before we know it! Thanks for keeping us in your prayers, & know that we'll keep you all in ours!
Big Hugs!!
YAY on the walking, running, weight gain, sleeping, no oxygen and overall goodness! Way to go, little one.
It'll be good to get those tests out of the way. You only have a few weeks to wait, not bad!
Have a great weekend! Keep up the good work, Arianna. xoxox
congratualations on the wieght gain! I had the same struggle with my son until he was 6 months old. He is now 15yrs old!!Im part of a group of moms that began a fundraising group to give back to the heart institute here in San Diego.You can read about his story on our website www.chifund.org . His name is Brandon. God Bless your baby girl!~René
Okay Vanessa - I have finally gotten caught up!! Thanks for finding me through Kathy. I appreciate you comments that you have left on Grace's caringbridge site. I started on your CB and read until I just finished so I am all caught up!! Wahoo. I am so glad to hear that Arianna is doing so well. She is absolutely adorable! Thanks for your prayers the past couple of days!! I am so happy to have another baby to follow!
<3,
Jen
www.caringbridge.org/visit/gracecooper
Vanessa,
I am Melainie Garcia from the TOF board. I never can post a reply on that board, I just cannot figure it out. : (
To answer your questions, this will be my first PVR surgery. When I was 5, they decided I was growing well and that techniques had improved enough that I could have surgery. In the 60's it was standard to wait until a child was near 10 years of age before they would attempt repair surgery. At least that is how I have always understood it.
They fixed my VSD and widened my PV by cutting out some of the fundibular muscle behind the PV. I think. They did not replace the valve. So my valve functioned pretty well for about 37 years after that surgery.
My heart failure with my pregnancy was probably due mostly to the PV not fuctioning as well as we thought it was. I believe that the pregnancy demonstrated to us that my heart wasn't doing as well as we were led to believe by my day to day activities prior to my pregnancy. I am not a runner or even excercise very much, but I wasn't feeling overly restricted in my day to day activities before I was pregnant. Around my 5th month that changed pretty rapidly for me. I felt more winded and unable to walk far, stand long or sleep lying flat. Many of these are symptoms of pregnancy and so it was hard to determine what was happening. Following her delivery, these symptoms worsened rapidly. Three day after her birth I was in the ER and diagnosed with HF. A week later I felt better than I had in YEARS! Then slowly I returned to my former somewhat limited energy and stamina levels that I had prior to pregnancy.
When your little one become a Mommy, techniques and surgeries will be so different from what they are now. They will be more able to diagnose problems and solve them than they are able to do now. What is important is that she knows what is normal for her body and heart and aware of changes when they start to happen. You don't want to make her afraid of her body, she has a weird heart. So do I. But mine has been the only heart I know and it has served me well in my life. So will hers, whether she needs more help along the way or not.
My first cardilogist is now retired and in his 80's, a few years back he and I joked that if I were to donate my heart to someone it would have to discounted half off, come with a money back guarentee and disclaimer. We had a good laugh. My heart may not be the best looking one or the smoothest machine in town, but hey it's all I've got and I love it!
Good luck with your little one. I will keep her in my thoughts. I am glad to go ahead of her so that the doctors can learn about her future, so that her future will be as bright, if not brighter than mine. I plan to live to see my
80's, my daughter married and at least a couple of grandkids if she is willing. : )
Much love,
Melainie
just checking in on you guys...hope you are having a great day...nothing but rain, rain, and more rain here...no fun!
Hugs,
Samantha
So glad to hear that Arianna is doing great! It sounds like she's been through a lot lately. And like you, I also sleep a little easier with my baby in the room. Someday we'll move his crib into his own room... but not yet!
Vanessa...
It's been almost a week...
What's going on with you guys??
Is she off the O2 for good??
Hope all is well with you guys!
(we got that cold spell too a few days ago..but, looks like the sunshine is back!)
Kathy
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