By God's Grace

Wednesday, November 18, 2009

Waiting, waiting and more waiting...

There has been much waiting on our part. I tend to be a person that like to make a list for each day and be able to cross of what I have done. It seems like for the last month my list has entailed calls to doctors to get clearance, schedule testing and then wait for days for call back. I am beyond frustrated. As anyone who has read this blog surely knows that I have also been frustrated with our urology situation. Yesterday was our visit with the new urologist, which should have been our first urologist when she was just a few months old. The wait to see him is long and I should have been patient. The visit went so well yesterday. He actually examined Annabel, when neither of the last two in almost 4 years has touched her unless in surgery. I was also shocked when he asked if it was time for me to cath her. When I answered yes, he said he want to get a urinalysis and do a culture. Wow, I was so amazed that he was going to actually acknowledge that she had infections. By Friday, he will be placing her on an antibiotic and she will stay on one until the surgery. The last urologist didn't want her on antibiotics and said she would always be positive for bacteria. He also wants her to sleep with a catherter in during the night which should help me get more sleep. He also had a very warm bedside manner which is so encouraging. I like the fact that he had a timeline and also a plan for Annabel. I had mentioned that Annabel needed urodynamic test prior to her surgery for the tethered cord. He said we should have this within two weeks and then proceed with surgery. The test she is waiting is called CMG which test for pressure in her bladder. I am curious as to why the two other urologist have never performed this test on her. So of course, for the first time I left feeling so good after a urology appointment.

I have been so blessed again with another sweet mom who is willing to donate her breastmilk to Annabel. On our way home we stopped to pick up some milk and was able to see her beautiful daughter. She is producing more milk than her daughter is needing and is so willing to share with Annabel. God has sure brought some beautiful people into my life and hers. It was such a relaxing and beautiful day and I was so grateful for our new urologist and to meet Annabel's new milk mommy.

Kourtni(our Nanny) is still diligently working to produce milk. At this time she is producing enough so that Annabel has one full feeding a day. She is listening to all the advice anyone offers as to help increase her milk production. From what we are told that this amount is good for this early.

All of the kids are doing well. Derek is still going to our local college and taking classes. Him and Linzy drop off often to entertain Annabel and I am so thankful for that. Tara is working hard and comes by each and every afternoon also to play with her. Tyler will be home for 3 days for Thanksgiving. He will return on the Friday after Thanksgiving and will leave for Iraq Dec. 4th. I think this good-bye will be incredibly hard for all of us. Major prayers will be needed for me to let him go at the airport. Carly and Colette are busy making their college visits. They have applied to six and already have received confirmation from four. Of course, not yet their number one choice. They were gone for the weekend to visit with their dad at a college about 4 hours away. The home was so quiet and it made me realize that this year is flying by and so very soon, they will only be coming home to visit. It was just yesterday that I was bringing them home from the hospital. So many time I wished they would hurry and grown up. I should have wished less and just enjoyed all the good, crazy times. I can't begin to imagine how much Annabel will miss the activities that they bring to our home.

Thank you for taking the time to catch up on Annabel and her family. The prayers as always are appreciated and I will let you know when the surgery is schedule and for specific prayer request.

Tuesday, November 10, 2009

Much loved little girl...

Annabel has been doing good. She is probably back up to her highest weight ever. She is eating well and her sleep habits are better, including sleeping with her oxygen. She is back at speech therapy but not at physical therapy yet. We were supposedly waiting for her to have her surgery on her back(tethered cord) but can't seem to get the necessary test that he wants first. This has been over three weeks of me making calls to the hospital to schedule them, waiting for the doctors nurses to call me back all to be told that they are working on this. I was told this could take place prior to Thanksgiving so she could recover over the holidays but there is no way now that can happen. Also, if Annabel can make it until after Christmas that is what I will hope for now. Her MRI isn't schedule until Jan 5th and I really want this first. They drs. have placed her on a priority cancellation list, but I am of little faith where this is concerned. I have been unsettled with the feeling that each day we wait to see if we will be called to make the two hour drive. It is very hard to plan anything at this point. But I am grateful that she is well. She has had no colds, runny noses and we have been free of any type of infections including UTI's. This is really a big deal. We are back to cathing her every 3 hours, also twice daily placing the gentimycin irrigation in her bladder and giving her as much liquids as we can drip in during the night. She is still taking breast milk that I am positive is the reason for the success of her weigh gain and her tummy being as good as expected.

With that said, I have blogged before about Kourtni, our new nanny. She has become more than that. I knew she had a heart for special angels in her life. I knew she would attempt to learn anything possible to help with Annabel. She is very confident and willing to do whatever is best and has become a second set of ears for me when listening to the doctors. That is what my Tara did and it is hard not to become dependant on that. So was I shocked when Kourtni suggested that she try to induce lactation so Annabel would be able to have breastmilk and eventually not worry about prescriptions from the milkbank. With that said our pediatrician is wonderful and so very quick about writing the script for her when needed so no complaint there. I sure didn't want Kourtni to feel that this was expected of her at all, but how could I not be touched that she wanted to do such a thing for Annabel. Annabel's milk mommy, Michele has been such a wonderful support for Kourtni as so has Mallories' mom, Connie. Kourtni researched how to induce lactation and began the necessary steps. From the information that she gathered we thought it would be a month before needing a pump but it wasn't. Today, Annabel recieved her first 70 cc from Kourtni. So that is what some of the pictures to follow are. It is still early but from all indications are very hopeful that she will be successful. She is so disciplined with her pumping and she still helps me with Annabel's needs. I continue to be amazed by what she wants to do to ensure that Annabel has everything possible to help her stay in the best possible health that she can.

The family continues to do well as we are all getting ready for the Thanksgiving holidays. Kourtni has been a nice fit with the family and the girls go eat and go to movies together in her off time. I want to thank my family for adjusting and being so accepting of her. But she makes it so very easy. We will have much to be thankful for this Thanksgiving. I want to thank everyone who contacted me via text, email and phone calls concerning Tyler and where he is stationed. So grateful that he is at Fort Bliss, not Fort Hood. But so sad and hurting for the families who were so affected by this terrible massacre. It will also bring the reality that Tyler will be leaving stateside for Kuwait then Iraq on Dec. 4th. But we will celebrate that we are together as family, that Annabel is feeling well, and that Tyler is home for a 3 day holiday...