Update 1-25

Hello all,
We wish we had better news. Shortly after our previous post, Faith's condition began to worsen. We went from the anxiety and excitement of her homecoming to talk of surgery, dialysis, and eventual kidney transplant.

Faith's kidney function has declined. and she has started to retain fluid. She is not peeing well and her creatinine and BUN are up. The excess fluid is hindering her breathing, so she has been reintibated. Her condition has deteriorated to the point where she is having severe bronchial spasms that cause her breathing and heart to stop. She has been resuscitated several times in the last few days. The cause of this change is not known. We are hoping the cause is an infection of some sort. That would likely allow her kidneys to improve again. The kidney specialists believe it to be just a worsening of her kidneys. We are to meet with them again in a day or two. It is likely they will be recommending Peritonneal Dialyis(PD) for her. There is a link on the main blog page describing the process. If the PD is started on her, she will be in the hospital for another 6-8 weeks minimum. The PD comes with many risks including infections and punctured bowel. She would also likely need the PD every day until she receives a kidney transplant. She cannot be put on the transplant list until she is one year old and 22 lbs.

We will try to keep you updated
Thank you for all the prayers.

Todd and Michelle

Happy New Year!

It's here!!!!!

This is the e-mail you have all been waiting for. The discharge plan process has been started for Faith. She should be coming home in the next couple weeks. She looks absolutely amazing! Her color is great, she is focusing and extremely social. She weighs 7 pounds 10 ounces. She is currently on the nasal cannula with an 1/8 of a liter flow and 21 % O2. They are trying to wean her to room air and so far she is tolerating all her weans and maintaining good PH levels and Co2 levels. Her kidney function has leveled out with her creatinine at 1.2 as of today. The doctors are working on a plan for how often she will need to be seen for labs and follow ups as well as what her diet will need to be. She isn't nippling very well so she will come home with the feeding tube so Todd and I have to learn how to put it in and start the feeding.

Ashleigh is doing great. She weighs 10 pounds 8 ounces. She loves to stand and is still daddy's girl! She smiles all the time, loves her swing and is already sleeping 6 straight hours during the night! Such a change for us since Parker was an awful sleeper.

We are very excited our whole family will be together soon. Thank you so much for all your thoughts and prayers. They have been answered.

Our love to all of you!!
Todd and Michelle

MERRY CHRISTMAS

Sorry for the long delay on updates.

Ashleigh is doing well. She is over 10lbs and as you can see she has a beautiful smile.

Faith has been stable and improving on the ventilator. She's 7lbs. Her kidney and liver function have improved. We hope to have her home some time in February.

They both will have their challenges moving forward, but we are very hopeful.

Thank you all for the well wishes, prayers, and support. Some day we will thank you all personally.

Have a great Christmas, Hannukah, Kwanza, Festivus, or what ever you may celebrate at this time of the year.

Love

Todd, Michelle, Parker, Ashleigh, and Faith

Update Dec.2

I wish this was a good update however it's not. The past week has been terrible for us. Last Monday Ashleigh developed a rash around her vaginal region that looked initially like diaper rash. As the day progressed, it got redder and more puffy and she also developed a low grade fever. I got her into the Dr. Tuesday morning and was told it was probably contact dermatitis however that didn't explain the fever. The Dr. did a CBC and her white blood cell count was normal. The Dr. asked if I was comfortable waiting for a day to see if it got any better and treat it with Aquaphor. She advised if I wasn't comfortable with that I could take her to the hospital to have them do a CBC and blood culture. Going with mother's intuition that something wasn't right, I took her to the hospital and 20 minutes after getting home the Dr. called and said her count was 30.2 which is extremely elevated and we need to get her to the hospital ER right away. Todd took her to Beaumont and she was admitted Tuesday night. She was diagnosed with cellulitis and is on an antibiotic. They released her from the hospital Wednesday evening. She seems to be doing well, the redness is gone however now I'm concerned she may have a yeast infection. She does continue to gain weight and as of last week she is 8 lbs 9 ozs.

As for Faith, she was reintubated again on Saturday. Her blood gas showed her CO2 level at 100
%, she was extremely puffy and retracting very hard. To be honest, she looked terrible when we got there to see her. She was on 95% O2 with a high rate and pressure. She has been weened significantly since then however we got a call this morning that she self extibated 2 times over night. I'm currently waiting on a call back from the nurse to tell me how it all unfolded. They are in the middle of rounds right now. Todd and I have requested a meeting with all her Dr.'s on Friday. Ashleigh will be with us and maybe we can get the girls a little time together.

I also wanted to let you all know WORLD TTTS FOUNDATION AWARENESS DAY is Dec. 7th. Here is the website to get more educated http://www.tttsfoundation.org. I put a phone call into the woman that runs the foundation this morning. Todd and I think we need a second opinion on Faith's treatment since she just doesn't seem to be getting any better. I will also probably set up a page on the website for Ashleigh and Faith.

Thank you everyone for your continued prayers and support.

Love,
Michelle

Update Nov. 18th

It's been a rough 1-1/2 weeks. On Saturday Nov. 8th Faith was reintibated. The Dr.'s think she had a bronchiospasm. Basically she clamped down and refused to breath. They tried to stimulate and bag her without results as well as doing chest compressions so the only choice left was to let a machine breathe for her again. They aren't sure what caused it other than the nurse was able to get a large mucus plug out of her later that day. Fortunatley she was only on the ventilator for a couple of days and last Friday they put her back on the nasal cannula at 3 liters of flow 50% O2. She had done ok for 1-1/2 days then Sunday her C02 was too high so they put her back on CPAP. She also has quit a bit of adema in her face and eyes. At this point they aren't sure why however she did look better last night. She is recieving 46cc's of breastmilk with PM60/40 powder added to it as the fortifier since she cannot handle the regular human milk fortifier due to the high phosporus content. Her eyes are slowly continuing to get better. She weighs 2480 grams or 5lbs. 8 ozs. Her bones are healing and the ortho people said they look really good. She is no longer getting caffine and had to get some blood last week. We are happy to report her creatinine continues to go down. It was 1.6 on Friday. I will have to look up what normal is however I know it's below 1. They are doing her labs 2 times a week, Tuesdays and Fridays.

Ashleigh is an amazing growing little girl. I took her to the Dr. on Nov.8th as I stated I might in the previous blog. She weighed 7lbs 8ozs!!!!! Nothing new was added medication wise for the reflux and the Dr. is fine with the 1 time a week bowel movement. She obviously is using up the breastmilk! On Nov. 14th she went to get her Synagis shot to prevent RSV and weighed 8lbs.! She had her 4 month check up yesterday and weighs 8lbs. 2 ozs 20-1/4 inches long. The Dr said she will probably reach her gestational weight by 9 months possibly sooner. He aslo said the color of her eyes now are what they are going to be. They are a bluish gray. She has a large bald spot and her hair is lightening up to a browish red. She is smiling more, follows very well and starting to have more wakeful periods. Unfortunatley those periods tend to be at night when her overtired parents want sleep!

Parker is wanting to help with Ashleigh more. When her apnea monitor goes off he goes running to help make it stop. He even asks to hold her on occasion. We took him to see to his first movie in a movie theater on Sunday. We saw Madigascar 2. Great movie however Parker wasn't as excited about it as we thought he would be. The boy wouldn't even eat popcorn! Needless to say it was nice for the 3 of us to get out of the house. Thank you Aunt Courtney for staying with Ashleigh!

I'll pick and choose some new pictures since I know everyone would love to see what the girls look like now that they are getting so big. Watch for updates later today.

Love to all!
Michelle

Update Nov.7th

We got some good news today. Faith's bones are healing well and they removed her harnass. They are still very thin and they Dr.'s made some changes to her meds earlier in the week to try and help her bone density. They added straight vitamin D and Calcium suppliments. She was getting a combination type med before. They also moved all the kids to 3A since they did a deep cleaning of room 3B. She is now by a window :) She weighs 2260 grams or basically 5 lbs. Her eyes were checked yesterday and continue to improve. She is currently on 4 liters of flow at 40 % O2. They will continue to ween her. She is getting 1 feeding by bottle every day. The nurses wait for us to do it if we are going to be there. She has also been more alert and they want to ween her from the isolette to an open air crib!!

Ashleigh is doing well. She is still only pooping once a week and spits up a lot. We may take her to the Dr. today or tomorrow to make sure she doesn't have any abdominal issues. She does tend to cry a lot when she is put down to as well as arching her back. She had her eyes checked on Wednesday and she has no stage in her left eye and stage 1 in her right eye. I'm not sure of her weight since she hasn't been weighed in 2 weeks. My guess is she is getting close to 7 lbs.

Parker is talking more to Ashleigh and even asks to hold her. When she was crying this morning he got her pacifer for her....too cute!

Todd and I are still happily exhausted and hope Faith will be home in the near future!

Michelle

Update #2 Oct. 29th

PICTURES ARE POSTED :)
If you click on one of the pictures it will take you to the web album to see full size photos