Saturday, November 15, 2008

What A Nice Day!

Uncle Joel and Niece Maia

Uncle Joel giving his Niece some Lovin'

I can't say how much Joel blessed Gideon and me with his wonderful attention with Gideon the week he was with us! We love you, Uncle Joel!

Grandma Judy and Maia together at last!

Making sure she is all bundled up!

Papa Tom and His Granddaughter! She really likes her Papa's voice!

Goingfor a stroll down the CCU aisles!

Are you sure you want your crazy son pushing me, mom?!?!

Chillin' at Home!

Ah! I could get used to this!

Well, we have been officially home now for 72 hours. This is the first day, however, that I truly felt like I was "home". Today we didn't have any family visiting nor did we have to drive back down to CHOP for any follow-up appointments. I didn't have to worry about pumping my milk for Maia in a private place. It was the first day just to "BE". It was very nice.

Maia's stats have been in the mid 70's to mid 80's according to the pulse-ox machine we were sent home with. We only check it twice a day. We were told by her physician, Dr. Natarajan, that she would only send home the machine if we promised not to check her stats 24-7, but only 2 to 3 times a day. We really have no problem with this request. We are very tired of the wires, beeps, and buzzes of her long hospital stay. Unless we see that she is getting more pale, cold, or blue, or under distress we feel pretty calm.

Maia did have her first local cardiology appointment with Dr. Rivera this past Thursday. Mom and Dad were still in town and helped take me there since I am not released to drive yet. The appointment went well, but we were thrown for a bit of a loop. Dr. Rivera noted that the bicuspid valve and aortic valve have some stenosis and that the aortic valve has two flaps fused together. This is all new news to us and these are parts of the heart that are on the LEFT side not her already compromised RIGHT side. Dr. Rivera felt it was very minor not anything to worry about for now. We were able to talk to Dr. Natarajan the next day at my post-op appointment and she also felt it was nothing to worry about and it should typically correct itself. Dr. N. had seen these anomolies on the echo before and she apologized for not discussing this with us at the time, but she felt it again that it was something that typically right heart babies grow out of and it is not a BIG concern. Well, I guess we will have to be all right with this new information then. Hmmm.

Dr. Rivera says that we need to be very watchful for the next six months. She will be going for weekly visits with the Dr. R. until her ductus closes and she will be getting monthly RSV vaccines. These next few months will show us if Maia needs further procedures. If she is unable to maintain her oxygen levels OR trend them higher has she develops she will most likely need to do the fontan procedure where the surgeons start rerouting everything over to the left side so it can do the work for her heart. I guess what I am trying to communicate is that just because Maia is home with us does not mean that she is out of the "woods" persay. Please continue to lift Maia up in prayer.

Well, I mentioned that my family was no longer visiting. Now just because it was nice to "BE" today, does not mean that it wasn't difficult to say good-bye yesterday. There were quite a few tears shed. It is hard to let go of my mother, knowing all that she is going to be enduring soon with chemo. Also, it was just so very nice to be with my parents and see them with their grandkids. It was a wonderful time had by all.

By the way, if you are wondering of a charitable organization to donate to this holiday season, please consider the Ronald McDonald House. Our time there was truly remarkable. The volunteers that help hurting families and their sick children are absolutely wonderful. My entire family was utterly blessed by this organization through the housing, the meals, the shuttles to the hospital. They are amazing!

Now, my parents did leave yesterday. About 8:30 p.m. last night we get a call from my mom. They had just been side-swiped by a semi tractor trailer truck! Fortunately they were driving their Lincoln Town Car! My father was able to keep the car under control and we have determined he must have had quite a few angels helping him out! Three hundred more meters and they would have been hit while on a bridge and there would have been no way to move over like they did. The truck went on without even stopping. When the police arrived they saw that the back driver's side door was very dented in. Thank the Lord that both my parents were not injured in the least. I called them this morning and they didn't even have any sore muscles! Do you think that our family might be under attack? Hmmm!
We are absolutely amazed that we are now home with our daughter. God is so good! We never would have dreamed a few months ago that we would be discharged from the hospital so quickly. Thank you for all who have been praying and continue to pray...he is listening and responding to your faithful prayers! Praise be to God!


Wright Family said...

How awesome the Lord is that despite Satan trying to attack on everyside, the HE has been protecting you and blessing you!! We are so thrilled for you all that your little gal is home and we will keep praying for her and for your mom!

Megan McDonald Wright (for our entire family)

Mama Blue said...

I love looking at these pictures! I just saw your comment on my blog about the camera, so excuse my tardiness and random comment :)
I have a Nikon Coolpix that I got for Christmas last year, but the lighting is more because I have been learning how to manipulate and use the lighting around me.
I cannot wait for another update!