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