Friday, September 19, 2008

So Much To Update

I apologize for the updates being far and few between. Each time I had something to update I would decide to wait since something else (an appt., a gathering, a visit) was coming up soon.

Liviana is doing really well. She crawls...backwards. She has not quite figured out the usefulness of the crawl for propelling her forwards. She goes from crawling or laying down to sitting and back again. She covers quite a bit of ground when given the opportunity. She has been saying "Hi" in a sweet sing songy voice after I prompt her with my sing songy "Hhhiiii" several times. Anytime I say "Boo" from anywhere in a room she will start laughing. She anticipates the angst that is soon to follow and can't contain herself. I have heard "mama" several times and they seemed very specifically to be directed towards me. She is indeed the cutest, sweetest, funniest little 8 month old around...I am of course a little biased.

Since my last update Liviana has had several appointments. First, for her weight. CDH babies are often watched for their weight gain. It can be difficult for them since they burn so many more calories with their respiratory system than normal. At Liviana's appointment yesterday she weighed.....drum roll....17 lbs. even! I am so proud of my little butterball. I didn't need doctors telling me she was gaining weight thought. I could easily tell when I was holding her that she has been packing on the pounds. She was also measured at 27 inches in length. Livi is still pretty much just breastfed. She has minimal bites here and there. She really is not interested in food. She likes the spoon and the bowl but the food, she is not so fond of. The faces she makes are quite laughable...they really must taste horrible to her. So far the only thing she seems to like is plain, organic, Greek yogurt. She makes quite the mess of it also. I'm not too worried about the eating. She is clearly getting all she needs from breastmilk given her growth. She'll eat more solids when she is ready. Miles did not eat until almost 8 months old and you can't keep food out of his mouth now.

She had her NICU follow up last month and that went really well. She had developmental assessments by the psychologist, PT's, OT's and doctors. It was a 2 hour appointment and we somehow managed it with all three kids in tow. I got teary eyed watching her during the psychological assessment. They had her in a high chair and tested several concepts like her ability to pick up two items at one time, her ability to take items out of a cup, looking for items that have dropped on the ground and stacking blocks. To sit and watch my little girl perform these tasks with ease was very emotional given the first month of her life. She ended up scoring right at her age and a little ahead in some areas on the assessment. So proud. She also has been sitting unassisted for quite a while and she demonstrated her rolling expertise also. She was right on for those skills also.

I brought the letter from Dr. Olney regarding the potential SCD diagnosis. Dr. N was unfamiliar with the condition, which did not surprise me considering there are only around 130 documented cases in literature. He said he would recommend getting the pricey genetic test done if for no other reason than peace of mind for me, whom he referred to as a "pain in the neck" in a good way :). He really thought Livi looked amazing and he wants to see her back when she is 16 months old.

Our next appt. was with Dr. C, her surgeon for a follow-up. This was short and to the point and immediately followed our already 2 hour NICU clinic appointment. He always checks her incision sites, says she looks great and that's that. He will see her again around her 1 year birthday with X-ray.

Yesterday, Liviana had her follow up with Dr. G., her Orthopedic surgeon. I sent the report from Dr. Olney ahead of time so he had a chance to look it up since most docs are unfamiliar with the condition, I don't think he did. He said that if Livi did have this condition it was a mild variant and not one that was going to produce the high mortality rates commonly found, YEA! He said she appeared to have some kyphosis in her neck but is only showing around a 15% curvature which is too low for them to rule out as being from position during x-ray. He also said he cannot get a good picture of her cervical spine (neck) on x-ray and only CT scan would show that in enough detail. He said he would not order a CT scan until he is at the point of considering surgery. She does have limited motion in her neck to the right and given the issues with her spine it has been decided among many docs that she will not get PT for the issue. He really thought she looked great but wants to follow her closely and will see her again in 6 months. I left the appointment relieved and thankful. We now will await genetic testing to be sent off to Wisconsin for the SCD.

Liviana is now a little sister to a big, 2-year old boy. Miles turned 2 on September 9th and we had a celebration on August 31st when family could be in town. He is such a sweet, loving boy and he loves his big and little sister so much. I am so blessed and proud of all of my kids.

I am being summoned by the little ones and I hear a "mamamama" coming from Miss Livi so I will run for now. I promise more updates soon.


Brian and Cassi Reed said...

So glad for the update, sounds like Livi is doing just great. And I will have to agree, she is one of the cutest little 8 month olds I've seen in a while. I am so happy to hear how well you are all doing. Moving next weekend, so hope to meet up soon.

Angel Elli's Mom

Karen said...

It is so awesome to hear how well your little girl is doing despite her dx and all the complications from it. I feel a connection to her story because my dear friend gave birth to her daughter Olivianna Grace (about 3 months ago) and she died 11 minutes later due to complications from her congenital diaphragmatic hernia. Though they had told my friend it was highly unlikely that Olivianna would survive (she had been determined not a good candidate for surgery at about 25 weeks? gestation), it was heartbreaking for them and for all of us. Anyway, it was cool to read some of your story and see your smiling happy baby girl!

Dear6993 said...

I love the new photos of your kids! Their smiles are so bright, and so beautiful! And what great news about Livi's follow-up appointments. She is an amazing miracle, having overcome the odds of CDH. Enjoy your moments with your adorable kids! You are in my prayers.

Karen Dear(Kinley's Great Aunt)

Anonymous said...

Whoop whoop on the Greek yogurt (I'm Greek)! I am so glad that all of Livi's appointments are going well. It must be such a relief with every visit that comes and goes.

She is absolutely beautiful. And a happy, happy belated birthday to Miles!