Tuesday Sept. 23rd

On the 18th Faith was put back on the ventilator because her blood gases were not very good and she was working too hard to breathe. The Dr.'s were trying hard to get her off the vent so they put her on a bi level mode to make her do more of the work. On Sunday afternoon around 2:30 she was re-extibated to a high flow nasal cannula. She has been on it since and doing very well!!!!! Currently she is getting 43% oxygen with a flow of 4-1/2 liters. She had an eye exam on Sunday and has stage 2 ROP. She will now be getting eye exams once a week. Hopefully it won't progress any further. Her weight as of today is 3lbs 7 ozs.

Sept. 22nd was the most amazing day so far. I breast fed Ashleigh twice AND gave her a bath. She is also off of her oxygen except for during feedings!!!! They took her off her nasal cannula on Friday. The highlight of the day.............I finally got to hold both girls at the same time! I could tell the girls enjoyed being together too :) Words cannot express the joy I felt. We will definitely get the pics of that wonderful moment up asap! Daddy fed Ashleigh a full bottle last night and tonight. As of today Ashleigh weighs 5lbs. 12 ozs.

On another positive note, the Discharge Coordinator has been in contact with us and Ashleigh will be coming home very soon. We are in the process of getting everything in place for this eventful moment.

Love to all,
Michelle

Thursday Sept. 18th

Faith was taken off the ventilator yesterday and is now on CPAP (continuous positive airway pressure). This is oxygen under pressure that is continually blown thru the nose to help keep the aveoli in the lungs open. Daddy said she looked very comfortable last night when he was visiting. I have a little bit of a cold or allergies so I stayed home with Parker. She is on full feeds of breast milk based on her weight. She continues to open her eyes more!! She is less puffy and her color seems to be improving. Faith weighs about 3 lbs. 10 ozs.

Ashleigh continues to do well. She did lose a little bit of weight yesterday however she took almost a full bottle at one of her feedings. Her fluid goal is 45cc's and she drank 43! One of the requirements for Ashleigh to come home is to nipple all her feedings as well as maintain her own temp. and continue to gain weight. I'm breastfeeding her when I'm at the hospital. She is better at some feedings than others but still shows interest! It will be challenging when she gets home. The Dr.'s did up her oxygen back to 23 %. She weighs about 5lbs. 4ozs.

Thanks to everyone who has signed the guestbook. We are so humbled by the love and prayers from everyone. Your inspiring words help us get thru each day!

Michelle

Update Friday Sept 12th

We met with the nephrologist today to talk about Faith's kidney issues. As we had expected and been previously told, her kidneys will not improve. They were damaged by the twin to twin transfusion syndrome. The doctors said she will require dialysis and a kidney transplant at some point in the future. He was thinking somewhere around one year old at the earliest.

Our meeting with the nephrologist was precipitated because Faith's labs started showing significant changes in Kidney function. This concerned the doctors. They believe these deteriorations in kidney function were related to her infection. The nephrologist said she has chronic renal insufficiency and acute renal failure. The chronic component is from the TTTS and will never improve. The acute component is related to the infection and hopefully improves through the elimination of the infection. The acute issues are what concern the doctors the most. If they do not reverse, the doctors have discussed dialysis on her. They have never done peritoneal dialysis on a baby this small before and are unsure of the outcome. The goal now is to get her bigger and get some of her other issues under control(infection, lungs, jaundice, seizures, and edema). They will be monitoring her kidney function closely and manipulating her meds, fluid, and diet to minimize the impact on her kidneys.

On a lighter side, Ashleigh is doing well. She grew some, breast fed twice and pooped on momma.

Update Wednesday Sept 10th

Thanks to everyone for all the wishes in the guest book. More people were viewing then we thought.

Faith does have an infection. It is not MRSA, but a form of staph that is treatable with penicillin. She has been doing ok. Monday she was very alert, looking at us and moving around. The last few days she has been more sedate and has not opened her eyes as much. We have been able to hold her which she seems to enjoy. She had her eyes checked and she showed no signs of ROP! Last night she seemed to be much more jaundice then usual, but we hope this will go away as they plan on taking her off the IV feedings soon. The IV feedings are the likely cause of jaundice.

Ashleigh just keeps growing. She was put in the open air crib again yesterday and they lowered her O2 level to 21%(room air). Mom breast fed her. We don't know if she got anything, but she did seem to be trying. If things keep progressing she may come home in the near future. She has had an issue the last couple of days. She has spells where she stops breathing(apnea) and they have to stimulate her to make her breathe. The docs and nurses says it is common, but is scares the *^%* out of us. It seems to occur when she is getting her feeding from the tube. The nurse thinks she might have gastric reflux. They say she will out grow the apnea episodes.

Mom and the nurses have also been excited as they have been able to dress them in there little outfits and take pictures. We'll post some pics soon.

Don't forget to sign the guest book if you have not already done so.

Update Saturday Sept 6

Faith did not have a very good day yesterday. She was acting lethargic, destating hard, and her blood pressure was low. The doctors think she may have an infection, because her platelets were also low. They have put her back on antibiotics for the infection and dopamine for her BP. She did well overnight. Her color is better and she is moving more. Hopefully the antibiotics and platelets will finally send her in ther right direction.

Ashleigh had a pretty uneventful day on Friday. Mom tried to breast feed her and she did well. Her weight was up only a few grams. She is now 4lbs 6oz. The nurses put her in a standard crib on Wednesday. She kept her temp up for about 24 hours, but she had to go back to the isolette. Over the past few days she has really become more alert and looks around. It is very cool when she smiles.

Please sign our guest book if you have not already.

Guest Book Added

Please take a moment to sign the guest book added on the right. Just leave a quick name, last initial, and message(if you'd like) so we can show the girls when they are older. We also like to eventually thank all those that are following their progress. Also leave a description of who you are if you think we will not know you directly. i.e. "friends of your mother at the lake". You do not need leave your email address, but you can if you like.

Thanks

Todd and Michelle

Update Wednesday Sept 3rd

Ashleigh is getting big. She is now 4lb 1oz. The doctor actually started talking about her going home in the not to distant future. She needs to improve her breathing, hold her own temp and feed from a bottle. There is still a long road ahead and we have watched several babies stay after they were supposed to go home. So we won't get excited until we are home with her. The opthamologist told us she shows signs of ROP(retinopathy of prematurity). He believes it will resolve on its own. If not she may require eye surgery to fix the issue. I will attach a link to describe the condition. Ashleigh smiled quite a bit yesterday.

Faith has been eating breast milk and growing, but some of it seems to be fluid retention. They had to give her albumen again to help pull the fluid out of her tissues and into the blood. The doctor believes her kidneys are not functioning correctly and leaking her own albumen. He informed us her kidneys will likely not improve and may require dialysis and eventual transplant. Nephrology will need to come look at her at some point as he is not the kidney expert. Her ventilator settings are still pretty high, but they have been able to reduce them some. She seems to be getting more rest. They have taken her off most of the meds, except for the anti seizure drugs. They are going to let her outgrow the doses of those drugs. We will know if she is still having seizure activity as she continues to grow. It is very difficult seeing her pace of improvement to be so much less then Ashleigh's. Faith has her name for a reason.