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

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.

Wednesday Oct 1st

We apologize for the lack of updates lately. As they say no news is good news.

Ashleigh is Home! We brought her home this afternoon after a couple of delays. She is doing well. She slept on the drive home and has been eating. She's almost 6lbs.

Her brother Parker already knows her name and he shared his blankies with her. He seems ok with her so far. We'll see how that changes as she monopolizes momma's time.

Faith is doing well. Her Kidneys seemed to have stabilized. The doctor even hinted that they she may not need a transplant in the future. We'll temper our enthusiasm over that comment. She is still very small and jaundice, but has been off the ventilator for over a week. Maybe in a month or two she can come home and join her sister.

We are very proud of both of them.

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.

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.

Thursday July 31st

We have had a rough few days. We were informed late Monday evening that Faith needed surgery to close the Patent Ductus Arteriosus. The echocardiogram showed the ductus was very large and they believed it was likely the cause of most of her breathing and kidney issues. The surgery was performed on Tuesday morning and by all accounts went very well. We were even shown video of the procedure. Faith was doing very well afterwards when we left on Tuesday evening. Unfortunately some thing changed and we were called early Wednesday morning with the news she was not doing as well. Her blood pressure was low, her heart rate was high, and she was not urinating. She continued this way throughout the day yesterday. This seemed to be puzzling the doctors and they were very concerend. They put her on a multitude of medications and fluids to get her to pee and bring up her bp. Overnight she has improved a little on her bp and she peed a small amount. We are hoping the steroid they gave her will help turn her in the right direction today.

Ashleigh has been doing well over the last few days , although we have not spent as much time with her. She even pooped. Pooping is exciting for a premie. She is up to 2.2lbs and her infection seems to be under control.

Update July 27th

Ashleigh took a step backwards yesterday. They had to intibate her again to support here breathing. She likely has an infection, but the labs will not be back to tomorrow to determine what kind. They have also stopped feeding her breast milk and have gone back to the IV. Otherwise she is stable

Faith's murmur is smaller but it still exists. They are going to perform an ECG today to take a look. We do not know at this point if they will need to perform any other procedures or give her any medications. She too is stable and has gained some weight over the past few days.

Todd

July 24th Update

We received some better news today as Faith's murmur could not be heard by the doctor. It seems the Ibuprofen treatment is working. So hopefully surgery will not be needed. She also gained 30 grams.

Ashleigh's echocariogram showed she does not have the Patent Ductus Arteriosus like Faith. She does have a small opening they expect to close on its own. No IB treatments are needed for Ashleigh.

The doctors expect to have both girls eating breast milk again in the next day or so.

We just need to get rid of our colds so we can go see them.

July 23rd Update

The girls have been hanging in there. Both are relatively stable and have had some good and some less then good days. Each has been on and off the ventilators and feeding on their own from time to time. One of the struggles we have had is that both mom and dad have been sick with a cold. I have not been able to see them since Thursday the 17th and Michelle hasn't seen them since Saturday. This has been very hard on both of us.

Faith is a battler and likely going to be the trouble maker when she grows up. She has a few issues the doctors are keeping an eye on including some Renal(Kidney) issues. We were informed yesterday that she has a heart murmur or more technically Patent Ductus Arteriosis. The doctors believe this is what is keeping her from improving her breathing. They are treating her with Ibuprofen which helps close the Ductus Arteriosis. If the IB treatments do not work she will likely need surgery to close the Ductus.

Ashleigh has been more stable, but they had to put her in isolation as a nose swab tested positive for MRSA(penicillin resistant Staph). She does not have an active infection, but was isolated to protect the other children. We were also informed today that she too may have a heart murmur and they will likely begin the IB treatment to close the ductus.

We would like to thank everyones support and prayers. We will try to keep everyone up to date on their progress. Please feel free to check back often for updates including pictures and videos.

Todd

The Twins Arrive!

Although we would have like to seen them for the first time in September or October, the girls are here. They a very precious. They both have black hair and mom's nose.

Ashleigh Ruth born @10:46 am - 1 pound 13 ounces - 13.25 inches
Faith Michelle @10:48 am - 1 pound 3 ounces- 11.25 inches

Amazingly Faith was breathing on her own after birth and daddy even heard a small cry.