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

Update Oct. 29th

Last week was not the best week for Faith. Monday the Dr. put her on the regular nasal cannula again so we thought things were improving. On Wednesday however we found out due to her rickets (brittle bones) she has 2 fractures in her left leg. She is now wearing a harness to immobilize her legs and allow the breaks to heal. She also had a slight set back with her breathing. The Dr. put her back on CPAP on Saturday due to bad blood gases. She had too much C02. By Saturday night her stomach started to bloat and Sunday morning it was much bigger. She had too much air getting in to her gut so they stopped her feeds, put her back on the regular nasal cannula at 7 liters of flow and 80% O2. She is now down to 6 liters 35% O2. and back on full feeds of 35cc's. They are only weighing her once a week to allow her to heal. We are able to hold her however it is very difficult. Faith also had to have blood as her hermaticrit was low. Her eyes are improving since the surgery and her color is getting better! Small steps in the right direction.

Ashleigh is still doing well. Her eyes are improving as well and so far will not need glasses or surgery. She is getting bigger by the day. Her next Dr. appointment is in November so it will be interesting to see how much weight she has put on since we aren't getting her weighed every week now. She was discharged from the home nurse last week! Her apnea clinic appointment in November 20th. She hasn't had anymore episodes so keep your fingers crossed!

I know you are all dying for pictures. I broke the camera over the weekend. I will do what I can today while Parker is sleeping. I'm finding I only get about 1/2 to myself to get anything done without interruption.

Love,
Michelle

Update Sunday Oct. 19th

Sorry for being behind on the updates. We are still trying to get used to having a little one at home!

Ashleigh is doing very well. She now weighs 6 lbs 8 ozs. Her apnea monitor has only gone off 2 real times since she has been home and she has been discharged from the oxygen. Her ROP is still stage 2.

Faith is working on getting better. The Dr. started her on a special formula for renal patients called PM 60/40 last week. She gets it 2 times a day and breastmilk the other 6. It seems to be helping as she is looking more chunky and her weight is up to 3 lbs 15 ozs. She is still on CPAP however they hope to get her back to the nasal cannula soon. They decided to start bottle nippling small amounts (5 or 10 cc's) to see how she would do. Normally they don't nipple a baby on CPAP however she was showing good suck and swallow reflexes!!!! She has done very well with it so far :)

After Ashleigh'e BPD clinic on Friday we took her to see Faith. Faith was awake and Ashleigh asleep! I think it was good for Faith to spend some time with all of us though it was brief.

Parker is still trying to adjust. He has asked me to put Ashleigh in the bassinet numerous times so I can hold him instead of her. I'm sure it's all part of the adjustment period. Just as soon as he gets used to Ashleigh, Faith will be home!

Thank you everyone for continuing to pray. We hope Faith will be home soon and healthier than the Dr.'s anticipate!

Michelle

Update Thursday Oct 9th

Faith's surgery occurred on Tuesday. The opthamologist said between the time he looked at her Monday and when he performed the surgery on Tuesday the ROP had progressed significantly. He even noted some blood in her right eye. He believes the surgery was successful, but is still concerned because of the very aggressive nature of the disease. The blood in her eye is also a concern as it can cause her retina to shrink and then detach. She will be monitored closely in the near term. She did pull her tube out and is back on CPAP. That is a good step to getting off the ventilator.

Ashleigh had her eyes checked yesterday for the same issue. She is stage 2 ROP. The opthamologist believes her ROP is regressing and will likely not need treatment. She will also be monitored closely every week. She is 6lbs 4oz. She is getting bigger and changing every day. Mom and Dad are happily tired.

Update Monday Oct 6th

Two steps forward one step back.

Over the weekend we received some not so good news about Faith. While visiting on Friday I was informed she has a broken rib and I could not hold her The did not know the reason for the broken rib, but think it may be from the heart surgery. They did also said her bones are very brittle. This is do to her liver not being capable of processing vitamin D. Her liver has been damaged by the TPN(interveous food) she was given early on.

On Sunday we received a call that she had an eye exam that showed stage 3 ROP. She needs eye surgery immediately. The doctors explained without surgery she will likely go blind. She scheduled to have the surgery tomorrow. The surgery sounds simple enough with little risk, but she will likely lose some of her peripheral vision as they actually laser that part of the retina

Then late Sunday evening will received another call that she had to be reintibated. Her blood gases were not good and she was destating. So Faith is back on the ventilator. No timetable was given but hopefully as short as possible.

These changes are upsetting and disappointing. She seemed to be doing better.

Ashleigh is doing ok. She's now 6lbs+. She has been a little stuffy and didn't poop til late last night. We were glad to have her poop.