Rhyder, Brianna and Annabel...

I have talke with a precious family who live fairly close by. Yesterday another miracle was born. His name is Rhyder and he is the son of Michele and Dave. They don't have a blog but I have seen pictures on facebook and he is so cute!! He does have trisomy 18, like Brianna and Annabel. At this point he seems to be doing well and he is going home with his mommy and daddy tomorrow. They have two other sons who are very young. Their hands will be full with all there is to do, the stress of having a lil one with trisomy 18. Please keep them in your prayers and I will surely be the first to let you know when they have a blog.

Brianna continues to have some spells, blue, high heart rate, low sats...They are in the midst of this time of appreciating each and every moment but also knowing that their moments maybe limited. Please continue to be with them in your thoughts and prayers. I find myself admitting more and more this is a tough road.

As far as my family we are getting back into the school routine. I love summers with no schedules. I do have to say that school is such a blessing to me where Annabel is concerned. She is safe, loved and sooooo stimulated. She comes home so happy, ready for some lovin' and ready to got to bed out of sheer exhaustion. This week has been an emotional week for my twins, Carly and Colette. We woke to an early call this past Sunday morning, from the asst. principal telling of their friends horrific head on collision the night before. I have always loved the fact that they go to a Catholic school where they can openly share their faith. This week we all got to see their faith in action. They all came together at school Sunday afternoon for a prayer service. Another Mass said at school on Monday. Since the visitation and the funeral were a few days away, the students just met at families homes to be together. Many time spending the night and all going to school together. Last night was the visitation and today the funeral. It has been an emotional time for these seniors. My prayer is that they will turn this horrible tragedy into something to honor their friend Ashley LaBiche. Her family is hurting so, but they are a family of strong faith. We will all pray for them as they accept this loss.

We are also getting ready for my son's deployment. We attended another yellow ribbon weekend as a family. It was a good time had by all. This is our first family member so we are learning so many new things. I think I am beginning to realize this is going to happen, that he will be leaving my son and returning as a soldier.

Annabel continues to struggle with her UTI's. She did great after the surgery for three weeks. Since then she has not been free or off antibiotics for more than a week. Our pediatrician is wonderful and without her I don't know what I would do. Our urologist doesn't expect her to ever be negative of bacteria again. He also doesn't want us to treat her. This has been my fight since mid-July and I am worn out. If you ever hear us moms talking about having to fight for our childs right to treatment, this is it. It is way too much to explain and too confusing to try to make reason of his reasons.... She will be having some more test on her kidneys (nuclear med scan, renal ultrasounds) and then making a decision on another dilation or something more permanent, such as a vesicostomy. These test are not until Oct 6 and 7th. After this frustrating appt. we went to visit her surgeon. Over the weekend while out of town Annabel's g-button malfunctioned. The top of the valve came out so it needed to be replaced. She had the mini-one and this is what we replace it with but with a shorter size. She had a 2.0 and now is sport a 1.7. Because she had lost the top valve it made removing the button very difficult. Normally they just take the instrument that comes in the kit and locks it in the valve and with some pressure they remove it. Well, not for us. After realizing they couldn't do it this way, the nurse ask me if she had bowel issues....???? HELLO!!! I said yes and then she replied well that won't work. I ask what she meant by this and she said, "well when we can remove them easily we just cut the top part of the button off, push the rest through into their tummy and just let nature take its course!" OUCH! Annabel struggles so much just to get the soft stuff through, can imagine her trying to pass this silicone/latex type button without something happening. Anyway they did use some other instrument that they used to remove a Bard type button. Long story, but didn't know if this has happened to anyone else.

Then our last appt. of the day was our long awaited sleep study. Because she had to go to sleep with the c-pap/bi-pap mask her night was much more of a struggle. A little history, we have not been using the bi-pap due to it causing her episode of choking while sleeping. She has trouble managing her secretions and with the bi-pap blowing it back down she is fighting the machine. So the sleep study was done with the c-pap and she did good as far as apnea episode in the beginning. The new is that Annabel is still experiencing the central apnea and will probably need another study done with the bi-pap machine. We have to wait for the doctor to review and give us a call to know our next step. I had truly hoped that with the surgery it somehow had cleared this problem. I do know removing the bowel has significantly reduced her need for oxygen on a regular basis. Also, she is so much more comfortable with her tummy issues.

Annabel seems to be growing longer. She is now 23lbs. 2 oz. and about 34" long. People comment on her face not being so babyish any longer. Due to her not feeling as chipper the pictures are not as smiley, but will post a couple anyway.

The Great Physician...

Sweetest sleep ever...

I am not feeling I have very much to write. I want to let everyone know that Annabel is doing so well. I have to make myself remember that she has this ugly thing called Trisomy 18.

The last several months prior to the surgery had become stressful concerning her apnea spells, the machine for her to breathe that wouldn't always work, the bowel twisting on itself and causing great pain, and the UTI infection and antibiotics.

There is not a doubt that all the prayers for Annabel were heard. She is having no apnea spells at all, yes no oxygen and no bi-pap machine for now. She is urinating just like a little girl should and I have no reason to suspect she is not emptying her bladder. The huge change also is that she hasn't had any laxative but once since her surgery. This entire week she has had BM regularly and her tummy is soft and so small. She is taking breastmilk and this really seems to be agreeing with her.

I will continue to be thankful for all the doctors who operated on Annabel and took care of her. I know with out a doubt that she was in the hands of the Great Physician. He orchestrated everything from beginning to end and I continue to be grateful for His goodness...

Upon release from the hospital she weighed 19.7lbs. Back in April she was 24.4lbs. She is slowly inching up the scales. We are adding whatever we can to her diet to give her calories and get her protein intake up. She has lost what little muscle she had and I am sure when she resumes her therapy this will come back as well.

I am sad to say that I will not be attending the Trisomy (SOFT) conference this year. My twins will be turning 17 in early Aug. As a family we will be renting a beach home and spending the week together. This was the only time that we could all be together. I will surely miss old friend and the new friends that we would have made. Carly and Colette will be senior this year and my plan is to make as many memories as possible and to not miss a thing.

Two Doctors and a Baby...

Could this sound like a TV show??? Today brought us two wonderful doctors. Actually, I met the pulmonary dr. yesterday and then today. He was so patient and spent time answer my gazillon questions. Also, the cardiologist spent time with me understanding the heart with diagrams and telling me why all these things are ok for Annabel right now. I use to be a major worrier, but somehow with Annabel I can only worry about what is the here and now. I guess being a senior citizen raising a baby there is only so much room left in this brain for storing information.

Her heart is fine for now. He said her VSD is large BUT because of some tissue that is acting like scar tissue to help lessen the hole the blood passing through is not causing her problems at this time. To make this short, I will mention quickly that all 4 valves are abnormal, heart is large, and aorta enlarged. I have all the numbers and medical terms. In short, Annabel is doing ok concerning her heart. They will watch her closely and monitor her progress. He doesn't believe that any of these oxygen levels are being caused by her heart. I am so thankful that I don't have to be faced with making any decisions that I have prayed I would not have to make.

I had some questions concerning her CPAP that I was able to ask today. Annabel has scarring on her left eye. She sleeps with her eyes open slightly and therefore this caused the drying and the scarring. My concern is that this air blowing right by her eyes all during the night will cause further damage. He verified that this would and we will have to keep her eyes very moist now throughout the day as well as night. Not a big deal but I don't want it to affect her vision. This is one thing that we have hope that she will continue to see well.
The other issue is that she has sinced seemed even gassier(is this a word)? Her tummy fills full of air. Yes, in fact this will cause her to have more gas due to the air being forced in while sleeping. Again, not a life threatening issue we will just have to deal with.
The plan was if all went well and she did good on the CPAP we may go home tomorrow. This meant that she had to tolerate the new level for the CPAP. Last night the level was not good enough and she needed 5 liters of oxygen fairly early in the evening. The doctors this morning wanted to up her level on the CPAP to 8 at bedtime. We could tell when Annabel was getting tired for her nap that her level began to decrease and by the time she was falling asleep she was getting lower than they wanted. So respiratory came and set the level to 8. She was ok for a short nap but I do think the added pressure made her restless.
Annabel decided to roll out the welcome mat for her sister Tara's arrival. She began vomitting and having bloody loose stools. We had been clear of any stools since yesterday around noon. YUCK! She did have a hard time going to sleep due to her tummy troubles but is now asleep.
They have set the CPAP at 8 and with 3 liters of oxygen. This is where we are now and I am going to try to get some sleep. My plans were to let Tara have the night and I sleep somewhere else(here in the hosp) but with Annabel not feeling so well I am going to stay here close by. They key to getting out of this place is that she be successful with the CPAP. I would love to go home tomorrow and sleep in my bed but only if we are going home to as few alarms as can be.

God continues to watch over Annabel. He brings wonderful people into our lives. He took away the doubt about our cardiologist at home by bringing this new cardiology doctor that just happened to know him. I am grateful for the peace that my heart feels concerning this matter.
In light of all Annabel's issue they pale in comparision to what Kathleen is about to face with her baby, Stellan, Jonah and so many others out there that are in desperate need of our prayers.