The Loss of Little Ones

I am asking that you pray for our 1p36 families all of the time. Very specifically, 3 right now. There have been three 1p36 families that have losted there little ones in the last 6 months. Jenny (19) in April, Annette (6) in Sept. and Little Chloe (1 yr 14 days) on October 21. We have been blessed through all of Abbies trials to still have her with us. For that we are greatful but, we are not promissed tomorrow. None of us are. Please don't take any moments for granted. I know these families covet your prayers. Even though we are separated by so many miles we feel closer to these families then some of our neighbors because they understand. I would like to ask that each family be remebered in your prayers. Thank you so much for your support.

FROM 30 MIN.OLD TO THE FIRST HEART SUGERY

THE FIRST TIME I GOT TO HOLD ABBIE SHE WAS RIGHT AT 24 HRS. OLD. SHE WAS SO TINY AND I DID NOT WANT TO EVER LET GO OF HER!

WATHING LEE HOLD ABBIE WAS SO AWSOME. SHE DID LOOK SO MUCH SMALLER IN HIS ARMS.

KAYLEE GOT TO GO IN THE NICU TO SEE ABBIE THE DAY AFTER SHE WAS BORN. SHE LOVED VISITING HER. THE NURSES EVEN LET HER TAKE ABBIE'S TEMP!!!

TY ALSO GOT TO VIST ABBIE IN THE NICU THE DAY AFTER SHE WAS BORN. HE WAS ALITTLE MORE NERVOUS BUT HE STILL WANTED TO GO VISIT EVERY 7 DAYS. THAT IS ALL THEY WOULD LET CHILDREN UNDER 15 GO IN.

ABBIE WAS HOOKED UP TO SO MANY WIRES IT WAS UNREAL. THE MAIN THING SHE DID WAS BREATH ON HER OWN. THIS WAS SUCH A BLESSING!

Abbie was taken to the NICU about 30 min. after birth. Lee followed her and got to talk to the Doctors first. He came back to my room about an hour after they took her and let me know she was breathing on her own and looked OK for now. They told me as soon as I could go pee I could go down to see her. You better believe I was in that bathroom right away and headed down to the NICU. She was so helpless! I could not even hold her for the first 24 hrs.

They sent her blood work off to the lab right away but, said it would be 12 to 14 days before we had the results. We had to saver each moment because we did not know if we would have another. This is something I have not taken for granted with any of my children since abbie's birth. There is no garantee we or any one we love have another moment of life at any time.

The cadiologist visited a few times in the first few days. They decided that Abbie would need heart surgery right away if she were going to make it. She had something called Aortic coartation. This meant that her blood flow to her lungs and body was closed off. Every one is born with a hole in their that closes in about 48 hrs. Abbie's never closed because GOD knows what he is doing! If her's had closed on its own Abbie would have died in less than 12 hrs. The surgery they would do would close the hole and open the arch. They wanted us to think about this because if she had trisomy 18 then she would not live even if they did the surgery. We did not care what the blood work was going to say we wanted Abbie to have every fighting chance possible.

So, at eight days old, 3 lbs. 14 ozs. we went to the OR. This was one of the scariest days of my life. Talk about sress! They took us up to the PICU waiting room because all babies from the NICU go to PICU after heart surgery for the cardiologist to be watching over them. Then when the cardiologist is happy they send them back to the NICU for the neonatologist to be in charge until they go home. They were thinking that Abbie would be in the PICU for around 4 days before they sent her back to the NICU. They told us a nurse would keep us updated through out the surgery. The nurse was good. She came in and let us know that things were going well a couple of different times. The Dr., who is the most awsome cardiothurasic surgeon in the world, finaly came in the waiting room to tell us our baby girl was almost ready to see us. He said she did great!.............

LOTS OF NEWS

ABBIE PLAYING ON THE FLOOR. SHE LIKES TO PLAY ON THE FLOOR AND ROLL FROM SIDE TO SIDE. SHE HAS EVEN FIGURED OUT HOW TO GET OFF OF THE BLANKET AND IN ALL DIFFERENT DIRECTIONS!


Abbie has seen some Dr. this past week. All good reports. Praise God! We will be adding a new Dr. to the agenda soon.

We went to the Pediatrition on Monday. It was a 6 month catch up with Abbie check! We have been "talking" on line at our support group about something called Tethered Cord. This deals with the spinal cord being attached to tissue in the back at the tail bone. I was a little worried because Abbie does have a few of the symptoms. Abbie had an MRI done last year that I was hopping would tell us if she did have a tethered cord that was looked over so this is one of the reasons we went. The Dr. looked at the results and it actualy says, "no tethered cord". This is great. It is one more thing we have rulled out and don't have to deal with! We also wanted to get things stared to see Endocrinology (sp). We just want to rule out any underlying issue that may be causing Abbie to not grow very quickly. None of her Dr.'s think there is but we want to make sure. So, this will be our added Dr. Fun, Fun......... I don't have an apt. yet because they want to review her records to make sure they put her with the best Dr. for her. I will update on it when I know more. We are also in the process of getting a disabled parking permit for Abbie. This will be so nice to not have to lug her and the others too far to get in a store! It will also come in handy when her new wheel chair arives!!! More on that in a bit. Abbie was 14 lbs. 13 1/2 ozs. She was 32 inches long. My word can we get any longer for our weight?! She is still growing ever so slowly!

Abbie saw the ENT on Tuesday. He is pleased. We will always have issues with her ears getting clogged because of the form in her canal but the oil drops are helping. There was no fluid and the 2nd set of tubes is still in place. He is great and thinks about Abbie's whole person. He may come in with some great help once Abbie starts in the school system and even before. We are going to try to get insurance to pay for more and I may have some great help wth this. I'm not sure I can post toom uch on it. Just be in prayer for the insurance sittuation.

Abbie will be getting a new wheel chair!!! The loner that was given to us is not working out like we had hoped. Abbie is to rotten and has figured out how to get out. She scoots her butt and arches her back and gets over the edge hanging by the seat belt. Not too safe. She is a mess. We decided She needed a costome one specificaly for her. We will be thinking of it all to keep her in place (I hope). When I get the link to it I will post it so you can check it out. It will be at least 3 months before we have it but the process has started anyway. I am very excited.

Therapy is going well. She is gaining strength and more control each week. We are making her a cool chair out of foam. I will post pictures of it hopefully next week. She will sit in it with her legs straight out infront of her and have support behind her for her trunck. I think it is going to be very helpful in trunk strengthening. She has also stared to roll off of her tummy onto her back. Sometimes she needs a little help tucking her arms under her but she is doing great with it.