Saturday August 30th

The last 24 hours have been amazing. Yesterday I held Faith for the first time!!!! She did pretty good for her first time. She is still touchy and had to have some extra oxygen however she did wonderful. It must have been a big motivator for her because today she pooped and she gained 100 grams (almost 4oz's). She now weighs 3 lbs 1 oz!! The Dr. also increased her feedings to 2cc's every 3 hours.

Ashleigh is still doing well. Daddy and I held her today. She gained 80 grams and now is 3 lbs 15 ozs. She is eating 36cc's every 3 hrs so just over 1 ounce at every feeding. I will work on breast feeding again tomorrow.

Love to all!
Michelle

Update Thursday Aug 28th

Sorry for the delay in updates

Faith's condition has not changed much over the last few days. She is eating small amounts of breast milk, and she seems more restful. Her stats and condition have neither improved much or regressed. Her facial swelling seems to have lessened. She now looks more like Ashleigh.

Ashleigh has been doing well, still off the vent, and progressing. She is now 3 lbs 12 oz. She went to breast last night and tried to feed. This was cool to see and the lactation consultant was very impressed. She even smiled a few times! I held her for about an hour. Definitely a daddy's girl.

Update Monday Morning Aug 25

Faith seems to be more content being with her sister. The doctors have been able to get her off some of the medications, remove some IV lines, and she has started eating breast milk. She is still touchy and on high ventilator settings, but looks more restful. The girls heart rates seem to sync up frequently.

Ashleigh has been very happy to have her sister back. She pulled out her tube again. They put her on CPAP(pressurized nasal ventialtor), but she was still unhappy. They tried a regular nasal canula, and she seems to like it. So Ashleigh is currently off the ventilator and just on oxygen. This may be temporary as she may tire, but it is a step in the right direction. If she stays off they may start feeding her by bottle. She also seemed much less stressed and a lot more alert.

Update Saturday Morning

Faith was moved from Children's Hospital back Hutzel hospital last night. The transfer went well. The girls are now next to each other again. Faith and Ashleigh have had a relatively quiet few days. It is nice to have them next to each other again. No news on Faith's seizure cause and Ashleigh's ear infection is improving. Maybe we can hold Faith soon.

Update Wed Aug 20th-morning

Faith has had a rough 24 hours. She's been seizing frequently. These have been causing her heart rate and o2 level to drop abruptly on several occasions. They have had to intervene several times to bring up her o2 and heart rate. The seizures have slowed over night. It is frustrationg not knowing the cause. The goal now is to control the seizures and improve her breathing so the can start doing the tests to find the cause for the seizures.

Dad held Ashleigh for a while and she was very content. She tried to pull her tube out again! She is now 3lbs 5oz. They are treating her with ear drops for an ear infection. Seems to be making steady progress.

Update Sunday Aug 17

The final results for Faith's EEG were given to us on Saturday. The report shows diffuse encephalopathy. Without getting into the details it confirms injury to the brain. The extent of the damage will likely not be known for weeks. She requires an MRI, but is just no stable enough yet to get one. This was a heart wrenching surprise as we were told the initial results looked ok. She also started to seize again on Saturday. She is now on an additional drug Keppra. We also do not know the cause of the injury or seizures. The child neuro specialist did state that the young brain is hard to diagnose on EEG and is also very resilient.

Ashleigh is still having uneventful good days. She weighed 3 lbs 1 oz today. She really looks to be getting bigger.

Saturday Morning Aug 16

Ashleigh has been doing ok. Uneventful last few days. They are thinking about extabating(remove the ventilator tube) her soon. The doctors want to fatten her up a little bit and then give her a couple of doses of steroids to relieve any inflamation in her airway before they try. They do not know exactly when, but it is nice to know they are at least thinking about it. Ashleigh weighs 2lbs 13oz.

Faith seems to be improving. She opened her eyes for daddy and is moving purposefully. She has lost a lot of her puffiness. Things seem to be moving in the right direction. Faith weighs 2 lbs 5oz.

Once again thanks for all the thoughts and prayers

Todd and Michelle

Update Thursday Aug 14th

They took Faith off the oscillating ventilator yesterday and put her on a standard ventilator. This allowed them to also do an EEG to check her brain function. We received some good news this evening. The initial results were good. They will not have the full report for a few days so we will hold of celebrating until the final report is in. She has been doing ok with most of her vitals, has been peeing, and has not shown any signs of seizures. In the next couple of days the doctors plan on doing another heart echocardiogram with her blood pressure lowered to look for any more defects that don't readily appear when her bp is higher. They are still trying to find out why her breathing and kidney function are not improving.

Ashleigh has had a couple of relatively uneventful days. Mom held her again and she did very well. She's eating and her vitals have been good.

To Cooper's Family

Our sincerest condolences to Cooper's family. Cooper was Faith's isolette neighbor.
You are in our thoughts and prayers.
God Bless

Michelle and Todd

Tuesday Aug 12th

Faith's seizures have been controlled by the Phenylbarbital(PB). They have not observed any seizures in the last day or so. The doctors still do not know why they developed and they may never know. We will have to wait until she starts outgrowing her PB dose to determine if the antibiotics have cured the underlying problem.
Early this morning they tried to ween her off some of her blood pressure drugs, but her BP went too low and her urine output decrease some. They have since increased them to the previous level. She has had her O2 levels drop a few times today so they had to increase her ventilator settings to help her breath. Comparative to the weekend she has had a relatively good day and a half. She has atleast been getting more rest then she was.

Ashleigh pulled her intubation tube out last night for the second time(stinker!). They tried to leave her on the CPAP(nasal ventilator) to see if she could handle it. She wasn't ready so they reintibated her. While she was on the CPAP we did get to hear her cry. I was never so happy to hear a baby cry. In the grand scheme she is doing well.

Sunday August 10th

Faith has not been doing well. We arrived Saturday afternoon and witnessed the seizures that the doctor called us about. They are very unsettling to see. The frequency and duration got worse as the evening progressed. At one point I would say she was seizing every minute. Once they gave her the second dose of phenylbarbital they reduced in frequency and duration. Faith was a little better in the early morning hours. We are unfortunately in a waiting game until they can figure out what is causing them

We did not get an opportunity to see Asheigh, but the nurse said she pooped a ton. They really do excited about pooping in the NICU! She had a good day yesterday.

Momma holds Ashleigh

Momma and her baby

Update Saturday Morning

Faith had a good day on Friday, her urine output was up and she lost a lot of her puffiness. She had a negative blood culture and seemed very content and relaxed. This morning we were informed she is having seizures. They are treating her with phenylbarbital to halt them while they try to determine why. When she is stable enough they plan to do a spinal tap to see if she has meningitis. They also cannot put her on an EEG until she is off the oscillating ventilator as it interferes with the EEG. So she is sticking to her good day-bad day routine.

On a better note. We have both held Ashleigh. She really liked being held by mom. Her oxygen saturation jumped up to 100% and she was very content for over an hour. Momma was very proud. We have video we will post soon. Ashleigh is 2lb 9oz and has been feeding very well. Over all she seems to be doing well. We just need her sister to do the same.

Progress Update

Shortly after the posting that Faith was doing better and would be transferred back to Hutzel, she regressed some. Yesterday afternoon she was placed on a oscillating ventilator. Her breathing was becoming labored, oxygen levels were dropping, she wasn't urinating enough, and they believe she has an infection. Xrays also noted she has atelectasis in her lungs. That is essentially collapse of part of her lungs. I have attached a link to describe it. The oscillating ventilator is more gentle on the babies and should help open up her lungs. The latest xray last evening showed improvement in the atelectisis and her urine output has also improved. The cultures are not back to determine if she has an infection, but they have put on antibiotics just to be safe. She will likely be at Children's for a while.

Ashleigh is doing well. Her feeding amounts have been increased again. She will hold our fingers and open her eyes. We may actually get to hold her today. We'll keep our fingers crossed.

Thank You

We would like to thank everyone for their prayers, concerns, and well wishes. We sincerly appreciate it.

Thank you

Michelle and Todd

Tuesday August 5th

Good news for Faith!!!! Her chest tube fell out last night and they put the gauze with vaseline on. She is doing well so they are transferring her back to Hutzel today :) They did a chest x-ray and it shows some grayed areas on both lungs. The Dr. isn't concerned however we will have to find out more! My guess is she will continue to improve with a more quiet atmosphere. We think all the commotion at Children's stressed her out.

Ashleigh is still doing great. At 2:00 p.m. they uped her feeding to 6cc's every 3 hours. The nurse said she even had both of her eyes open today! She weighs 2lbs. 8 ozs. and is having a good day!

Michelle

Monday August 4th

Ashleigh is still doing very well. Tomorrow is her last day of her antibiotic for the staph infecton. She self extibated 2 days ago and was on CPAP for 20 hours. She was having a hard time breathing on her own so they put her back on the ventilator yesterday morning. They have increased her feedings to 5cc's every 3 hours starting 2:00 a.m. tomorrow. She opened her eyes a couple of times while I was visiting today. The nurse took an awesome picture of her that I will see if we can get onto the site for everyone to see. Her weight is 1100 grams or 2 lbs. 6-1/2 ozs.

Faith's chest tube fell out this morning however the gas built up in her lungs again so they had to put the tube back in. Most likely she will have it for another couple days. She is now only on medication for her blood pressure. They are planning on starting her on 1cc of breastmilk tomorrow. She was less puffy today and seemed to be resting well. She continues to be fisty and doesn't liked to be messed with. Daddy definitely has the touch with Faith. Her heart rate goes down and she is very content when he is touching her. She is already Daddy's girl!!!!!

Love to all!
Michelle

Videos added

A couple of videos were added this morning. For some reason the link does not work. They can be seen @ www.youtube.com/spartan39green. Sorry I will try to get the link working again

Todd

Friday August 1st Second Update

Faith is continuing to improve! They are lowering her blood pressure meds and plan to take out her chest tube tomorrow. Once the tube comes out Todd and I may finally get to hold her. It would be a good stress relief for all 3 of us! She had more pee pee diapers. Now we just need to work on getting her off the ventilator and back on breastmilk. Faith's weight is pretty inaccurate at this point since they pumped her with so much fluid.

Ashleigh is still doing well. She now weighs 2 lbs 5 oz! She is on 2cc's of breastmilk every 3 hours and was resting very comfortably today.

Love
Michelle

Update Friday Aug 1st

Faith has improved in some ways, but still has issues with her kidneys. Yesterday a nephrologist was brought in to look at Faith. She is in renal failure. Her kidneys have not been functioning properly. She has started peeing more since midnight. That is encouraging. The doctor said she is still in renal failure but if she continues to pee he is hopeful she will get through this. In fact she has peed enough where he does not need to see her anymore. This has been a tough time for us as we could see she was very sick. She looks much better this morning. She even looked at me.

Ashleigh is hanging in there, but she is still intibated. They still have to suction a lot of secretions from her respiratory tract from the infection. She's eating and gaining weight.