Abigail Rose 10/24/07-4/7/08

Happy 4th Birthday!

2011-10-24T07:54:00.000-07:00

Here is your sister and Mommy releasing a balloon.

We love you and miss you every day.

Dad, Mom, and Annabelle

Happy 3rd Birthday Abby!

2010-10-24T18:51:00.000-07:00

Your little sister let a balloon go for you. We love you and miss you every day.

Happy Birthday

2009-10-23T19:56:00.000-07:00

Tomorrow is Abby's 2nd birthday.

I think about her everyday, but I keep my feelings about her very deep inside. That seems to work.

I love you baby girl.

2009-05-22T00:09:00.000-07:00

Been thinking a lot about Abby. I really miss her. I know she would be a really cool little girl. Still pretty messed up.

2009-04-07T13:46:00.000-07:00

Doesn't seem like a whole year has gone by...we put Abby's ashes in her urn today and sealed it. Still hard to believe.

The weather here has been awesome - beautiful spring time days. I remember taking Abby on her first walks in the stroller. I wish so many things were different.

We want to thank our families and friends for all their support. We wish we lived closer to be with you all. We love you.

Anniversary coming up

2009-03-12T14:04:00.001-07:00

This is the permanent urn we decided to get for Abby. On 4/7, we plan on transferring her ashes to the urn. Right now, they are still in the box we got from the funeral home. The urn came with super glue to seal it forever, and it came with a candle, so that we could use the wax to seal it temporarily. We haven't decided what we are going to do yet.

Visiting Family

2008-10-28T09:40:00.001-07:00

We had a great time with our family this past week. We had a birthday party for Abigail at my sister's house. We decided to release a balloon in memory of Abby.

These new pictures are some that Jenn's mom had on her camera.

First Birthday coming up

2008-10-14T10:41:00.000-07:00

Jenn and I are getting ready to come back East for a little vacation. Our friend Mike is getting married in Scranton, PA on the 18th. My birthday is the 17th, Jenn's is the 25th, and Abby's is the 24th. So we decided it would be good idea to make a 10 day trip out of everything.

It will be nice to be with family during that time. I can't believe our little girl was born a year ago. We both still have very strong feelings about everything. I'm not sure how difficult the 24th will be, but I'm glad we will be with our family.

The Tribute

2008-06-23T14:25:00.000-07:00

This is the video we played at Abby's memorial.

Our Garden Bricks

2008-06-10T08:31:00.000-07:00

These are the bricks we donated to the Children's Garden at the hospital.

We had another Brief Encounters meeting last night. It was good. We are both still really upset and pissed off that Abby died. I know she will always be with us. Sometimes I talk to her, like she is my guardian angel.

2008-05-13T08:06:00.000-07:00

We met with Dr. King and Tami, the case manager, yesterday to go over the autopsy results. He was very compassionate and nice. As is often the case, there was no definitive reason that he could say why Abigail died. They didn't find any formula or anything like that in her lungs, so she didn't aspirate. Most likely, something from her stomach (or some other reason) caused her larynx to spasm and constrict. He used the terms "a silent struggle," which didn't make me feel too good. But, he confirmed that there was nothing that we could have done differently or could have predicted. He also said it was possible her heart had some sort of rhythm problem, then stopped. It could have just showed up for no reason. He said this was unlikely, since she had been on heart monitors for 5 months with no sign of this. We thanked him for coming to the memorial service. He said it was important for him to come, since in the beginning he was so pessimistic, and Abigail continually proved him wrong.

Basically, it was a fluke thing, a human tragedy.

We also stopped by the PICU to say hi to some of the nurses, so that was cool. We saw Bonnie and some other very special people. It was weird to be back there, but not too bad. Looking back at the pictures and thinking about everything that happened, we were so naive. Death was always around us, yet we didn't see it like that. Abby was our daughter. Yes, she had tons of tubes and wires, and everything else, but we saw past all that stuff. In a way, it was good that she was our first child. We didn't know kids could be any other way.

We went to a grief counseling support group last night for parents of babies who have died in infancy, still born, or miscarried. I think it was very helpful. We will continue to go. There were all types of people there. I could really find similarities in the different things that they all said, about their ordeals, their emotions, etc. One couple said they knew about Abigail because they worked in the Legacy Health System. Apparently, they send out emails when they have success stories and their patients are on the news. So that was cool.

Abigail's Song of Love

2008-05-05T20:28:00.000-07:00

This is the song that we had sent for from the Songs of Love Foundation. We said we wanted a folk song. We filled out a form about what Abby liked, her pets, things she did, etc. We just got the CD in the mail. I have the lyrics, if anyone would like them. Check out their website: http://www.songsoflove.org/

Just push the play button.

I also got some new pictures sent from the Child Life person, Lynn. She had taken this when we went to say good bye to the nurses in the PICU the day we left the hospital.

2008-04-16T07:22:00.000-07:00

If anyone would like to donate money to a charitable organization in memory of Abby, we suggest you donate directly to Emanuel. The Children's Hospital Foundation link is below:

http://www.legacyhealth.org/body.cfm?id=606

Thank you all very much.

Jenn and I donated a "Garden Brick." There is a really nice Children's Garden area at the hospital. We got a brick inscribed with Abby's name on it.

2008-04-12T08:58:00.000-07:00

We had a beautiful service yesterday. Everything was perfect. We were amazed by all the doctors, nurses, therapists, and staff from the hospital that attended.

I'll try and load the slide show from the funeral on here sometime soon. This might be the last entry for a while.

Jill gave me a Buddhist quote that I'll always remember: When you have learned all you can learn, and when you have taught all you can teach, you pass on. I think this perfectly applies to our little Abby.

"Mommy Toes"

2008-04-09T22:08:00.000-07:00

Tomorrow, we meet with a chaplain from the hospital, Jill James, who we asked to preside over the memorial service. In the afternoon, we will have a private viewing at the funeral home.

2008-04-08T18:34:00.000-07:00

Many thanks to everyone that have sent messages of love and support. It's amazing to think about all the people that Abby has affected.

We are having a memorial service on Friday, April 11, at 3:00pm. There will be a reception following the service at our house. All are welcome.

Skyline Memorial Gardens & Funeral Home
4101 NW Skyline Boulevard
Portland, OR 97229

I have been trying to figure things out, and there is no answer. There was no way to predict what happened and once it did happen, there was nothing anybody could have done. We wouldn't have done anything differently. Abby was a beautiful little girl. She taught us so much about everything. Words cannot express the love we all feel.

In Loving Memory

2008-04-07T12:49:00.000-07:00

I don't know how to start this, Greg and I are in complete shock, Abby passed away this morning. I was driving her to her 9am appointment and she stopped breathing, I pulled to the side of the road and gave her CPR and called 911. The paramedics took her to Emanuel and they did everything that they could but she did not make it. I can't tell you how much this hurts - she was home for 12 days and was doing awesome - there was no sign.
I wanted to write this right away to let you all know that Abby is the miracle baby - she touched us all and has taught us so much - please keep your loved ones close to you and thank you all for being our family and for loving Abby - she is an inspiration, continues to be a beam of hope and is our little angel.
We will let you know of services as soon as they are arranged.

The Jacoby Family

Tummy Time

2008-04-06T13:50:00.000-07:00

We are were relaxing on our bellies today. Tomorrow, I have to go back to work full time. Jenn will be taking Abby to speech therapy. Hopefully, we can start attempting to bottle feed again.

Abigail "Talking"

2008-04-05T16:24:00.001-07:00

She is wearing one of my favorite outfits!

2008-04-03T19:31:00.000-07:00

Abigail and Mom went on a nice walk today. The weather was really nice. Abby enjoys the outside. We went to 70 ml for feeds during the day. She seems to be tolerating it just fine.

Also, Abby wanted to say Happy Birthday to her Nana!!!

2008-04-02T20:40:00.000-07:00

Abigail, Ma, and me went on our first stroller ride this afternoon. I got some pictures, but then accidentally deleted them. Tomorrow is supposed to be nice, so we'll go out again. She really seemed to like it, although she didn't like the sun shining in her eyes. She fell asleep as soon as we got back. We continue to work on getting in some good tummy time.

2008-04-01T20:09:00.000-07:00

Two nurses came by this morning. The first was the regular wound care nurse. She showed Jenn how to change the dressing. Everything is looking good. Abby weighed 4108 grams - just over 9 lbs. She has gained about an ounce a day since last Thursday - which is great. The second nurse was a Washington County community nurse. She will check her development next month and will help us with the many social services available.

2008-03-31T20:48:00.000-07:00

Abigail is doing good. We got a vaporizer, which really seems to help her sleep even better at night. Tomorrow, we have some nurses coming over. Jenn is doing great. I was stressed a little, but am adjusting. Abby is helping me be more patient and not get frustrated so easily. She really is a good little girl. She gets fussy, then toots, then goes to sleep.

For some reason, my level of free time seems to have diminished quite a bit! Things that we were able to get done in a relatively easy and quick fashion, now take forever!

2008-03-30T16:24:00.000-07:00

Abby is doing good. She really sleeps a lot - which is great. That lets her heal, recover, and grow. The feeding is going well. Her head and neck are getting stronger. Grandma gave her about an hour of belly time this afternoon.

Grandma flys back tonight. We are all going to see her off to the airport.

2008-03-29T20:13:00.000-07:00

Abby is doing well. It is kind of hard being her nurse at times, but we are managing. Jenn's Mom has been a big help during this period of adjustment. We had to change her NG tube today because the ends of the old one were leaking. Jenn did it no problem. Abigail didn't like it too much. She has been sleeping fairly well during the night. It is good to see her get some much needed rest.

We have a nurse come in on Tuesday and Friday to change her dressing and check her overall well being. It is so good to see her here at home. We drove by the hospital and it is weird to know that she isn't there anymore. She is home, where she belongs. She is still recovering though. It's no where near a normal situation yet. But, she'll be fine. It's so much better than being in the hospital!

KATU News Report - "Miracle Baby"

2008-03-29T06:44:00.000-07:00

Chill-axin'

2008-03-27T17:38:00.000-07:00

We had our first excursion today. We went to the pediatrician. Abby weighed 8 lbs 12 oz and was 21 inches long. The funny thing was that Grandma packed our diaper bag. We had clothes, hats, wipes, butt paste, lotion, etc. But no diapers!!! She's not going to live that one down for a while.

I will try to get a copy of the newscast tonight from friend who TIVOed it. I'm pretty sure I can somehow get a copy to the blog. Many thanks to everyone who has sent cards and left messages. We are so appreciative.

Abby is Home!!!!

2008-03-26T14:18:00.000-07:00

22 weeks after being born, Abby finally left the hospital and came home. We are super happy! I really can't believe it.

Tomorrow, Take Two

2008-03-25T21:28:00.001-07:00

Well, this is as close as we are going to get; Dr. King signed the official order for Abby's discharge - we're breaking out of this joint. The dietician will be meeting with us tomorrow at 9am to go over the feeding equipment that we will need at home, KATU News will be there at 11am and I expect that we will be on the way home a little after lunch. Bring it on.

Sorry Folks - Not yet

2008-03-24T21:04:00.000-07:00

Dr. King said it will be Wednesday or Thursday. He wants to make sure Abby is "close to perfect" - so she doesn't have to come back anytime soon. She took her car seat test and basically passed. That's when they place the baby in the car seat for 1 hour and monitor them.

Tomorrow is the day!

2008-03-24T18:26:00.000-07:00

Abby had a very busy day for her 5 month birthday. She went to the OR to have her broviac taken out, every culture they sent due to her fever came back negative and as long as she does not have a fever, she is coming home tomorrow. Greg and I are learning how to administer feeds, medication and other fun stuff that Abby will need when she gets home. KATU News will be there so we are very excited for this great day and can't wait to update you all on our adventure.

Reflecting back on our experience tomorrow will be very bittersweet. Whereas we are so thankful that she is coming home and ready to start the next chapter of being "parents", we are sad to leave the friends and staff at Emanuel Hospital. Not because we are afraid of doing things on our own, but the staff at Emanuel have been the best support system for Greg and I. First and foremost they saved Abby's life and were with us through thick and thin, shared laughs and cries and became our family. We will definitely make sure one way or another they will be a part of our family as Abby grows (just not as a patient :))

Happy Easter!

2008-03-23T19:41:00.000-07:00

We got some polaroid pictures with the Easter Bunny yesterday. Today, Abby had her Easter outfit on.

Dr. John changed her dressing. He said it looked really good. Her broviac cultures came back negative - so that means so far, it has not grown anything. She still has a temperature, but seems to be in fairly good spirits. Jenn took off her oxygen and she was in the mid 90s.

Not quite yet...

2008-03-23T13:38:00.000-07:00

Abby had a mild fever of 101.5 last night. Tylenol helps to get it down to 100-99. They think her Broviac may be the source. She is getting antibiotics. If that doesn't do the trick, they will just take the Broviac out. She was also having some minor breathing issues and is back on a nasal cannula. Her oxygen levels were upper 80s to lower 90s, instead of her norm of upper 90s. This means we wont be going home tomorrow. Right now, it's a minor setback. Probably just delay us a few days or a week. I had gotten my hopes up a bit, but now won't believe she is actually coming home until she is in her room and Butt-Butt is checking out his new BFF. Please everyone continue to pray and send positive thoughts that this turns out to be no big deal.

A Day With Our Grandbaby Abigail Rose

2008-03-22T19:59:00.000-07:00

Friday and today were very busy days for our Abigail. Wound vax was removed, monitors remove, 3 techs working on stretching and relaxing Abby's muscles....she just loved all the attention. Then, she got to lay on her belly for the first time in a very long time...that was great also. When we walked into her room today, her daddy was holding her and she was laughing, out loud, it was amazing. Today her Grandpa and I had Abby laughing and it's funny but you just start laughing with her. Then, while mommy and daddy were working on the car seats, the three of us hit the "road", (the Halls of the Hospital), in her little red wagon. She loves the wagon. She looks as though she is trying to take everything in that she might have missed these last few months. She is a happy camper and loves to be moving....that's good for the future camping trips that I'm sure she'll be making in the future....I can just see Jenn and Greg getting her hiking shoes for her "first" pair of footwear. This visit is very special and we are very thankful for how wonderful our Oregon family is doing.....many thanks to all our family and friends for their prayers, and well wishes.
Happy Easter to All!! Carol & Tom

Abby continues her great progress!

2008-03-22T09:55:00.000-07:00

Sorry for the delay! Mom here ~ Abby is doing wonderful and had a great night. Dad spent the night last night with Abby. We are learning how to mix Abby's feed, give her medicine and lots of other things. Today we are going to have her car seat tested and put into place and Grandma and I are going to thorougly clean the house in preperation for Abby's arrival home. Check out the pictures below of her tummy time!

Smiling with Grandma!

2008-03-20T22:29:00.000-07:00

Abby had a good day. Jenn and I took a Infant CPR class down in the NICU this morning. While we were there, a volunteer named JP (Jean-Pierre) held her. He said it made his Easter. Tomorrow, she gets her wound vac off and we can get her some much needed "tummy time."

Things are still looking good for Monday. Lots of stuff happening.

2008-03-19T22:26:00.000-07:00

Abby got moved back out to the floor today. She is off oxygen. We are coming home on Monday, March 24th - her 5 month birthday!!!!! We are coming home soon!!!! Jenn's parents fly in tomorrow, so that will be great. Things are looking good.

2008-03-18T20:56:00.001-07:00

Abby got her breathing tube out today. No problems at all. Her throat is very sore, every time she swallows, she grimaces. Coughing is also painful. I told her that everyday her throat will feel a little better.

She looks great. It's amazing what having all your arteries the way they are supposed to be will do for you. We move out to the floor tomorrow. We should get the wound vac off on Friday. After that, we may come home at any time.

Huge Weight Off!!!

2008-03-17T23:56:00.000-07:00

Abby did great today. She continues to amaze. She looked great after the procedure compared to what she looked like on Wednesday. Dr. Kaiser was able to balloon her left artery from less than 1 mm to about 4 mm. He also re-did her right side to 5 mm. Later on, 6 months down the road, he might put in some stints. She will not need surgery at this point. I can't believe it. It still hasn't sunk in. She could come home next week. She will get extubated tomorrow morning. Get the wound vac off this week. She should come home with oxygen and the feeding tube - which is awesome. It's no big deal.

Jenn and I were talking, and she has challenged Dr. King, Dr. John, Dr. Kaiser, Jason, Dr. Hagop to their max. It's unheard of. She will be 5 months next week. It's been so unbelievable. We can not tell you how much we appreciate everyone who has sent their prayers, love, and support. Jenn said it is like Dr. John is almost like a religious figure. He is always so peaceful and was like a man who was full filling his Purpose. Those doctors literally saved Abigail's life. I remember the first time I met Dr. John. I asked him questions that, looking back, were so naive. We really knew nothing then. He sees that stuff every day.

The father of the baby who got moved in to our room today could see me and Jenn talking to all the nurses, doctors, and therapists. He asked me if I worked there. I told him, "No", we just have been there quite a while.

2008-03-16T20:01:00.000-07:00

Abby was looking around today. She's such a good little baby. Tomorrow will be a big day. We are scheduled for around 2:00pm. Please pray and hope for a successful ballooning.

2008-03-15T20:55:00.000-07:00

Abigail is still doing well and is kind of in a holding pattern until Monday. We are still confident Dr. Kaiser will be able to balloon her left side.

Abigail's great grandfathers are both really just plain awesome. Jenn's grandfather, P. Abbott Asplin, Class of '39, Franklin & Marshall, was inducted into their Hall of Fame in 2000. He played football on offense and defense. He turned 90 last year and is a recent newlywed. My grandfather, is in his late 80's, is doing good, but just went into the hospital today with some seemingly minor symptoms. They will check him out and monitor for a few days. We know they both care and think about Abby all the time. We are honored that Abby is a great granddaughter to such admirable men.

2008-03-14T19:13:00.000-07:00

Abby is doing well. She is still on the vent - probably until Monday. She is comfortable. Her vitals have been fine. She's still a little puffy, but continues to pee a bunch.

This is a tough one. Believe me, that was not what we wanted to hear yesterday. We are all hoping they can balloon the left side open on Monday. That would be the best case. At this point, there is no sense in worrying about anything else. We just have to wait and see what happens.

Latest Update

2008-03-13T15:16:00.000-07:00

We met with Abby's team today and they do not want to wait 3 months to attempt the balloon procedure again, they want to go back in on Monday. Bad news is if the procedure is not successful on Monday she will have to have surgery and they will have to open her chest again. This is a setback but we are as optimistic as we can be that Monday will be successful since they already know what the left pulmonary artery looks like and will not have to spend a lot of time exploring. Overall, Abby is doing well - labs, blood gasses and white blood count were all spot on. We aren't sure if they will take her off the vent since she will have to be on the vent for the procedure on Monday. Until then she will remain in the PICU. Please keep your fingers crossed and send your prayers our way.

The Lip!

2008-03-12T19:30:00.000-07:00

Here it is. But, she can do it a lot more than that.

The procedure took a long time. They wanted to balloon out both of her pulmonary arteries. They did the right one fine, the left one's opening was too narrow to get the wire in there properly, about 1 millimeter. They will try again in about 3 months - give her a chance to heal and grow. We are back in the PICU for a few days. Abby is on the ventilator until tomorrow. She is puffy around her eyes, hands, and feet. Her vitals were fine the whole time. She is a trooper, poor little thing. Lying on her back again with that tube down her throat. She is not a happy camper. But, so far, we were told that she could possibly come home next week!

We saw an "educational" video about the procedure filmed about 10 years ago. Dr. John had a moustache! It was pretty awesome.

Procedure on for tomorrow

2008-03-11T19:21:00.000-07:00

Abby's balloon procedure is on for tomorrow at 10am. They will open both the left side and the right side. Dr. Keiser will be performing the procedure (he is awesome) and it should last a few hours. Not sure if she will return temporarily to the PICU afterwards, hopefully she will - even if she does not need it we prefer the care in the PICU. She will have to go back on the vent - but only temporarily.
Abby and I had a nice visit from our friends Clarencia, Iris, Dana and Shelly last night as well as our friend Dawn and her little boy Tim. It is really nice to be with friends and have them share in Abby's success and progress.

We are cleared for takeoff!

2008-03-10T19:38:00.000-07:00

Jenn and I both feel that Abby is getting closer to really getting her feeding going. She is clearly trying very hard at it. I have a feeling that once she gets it, which we both feel will be in a few days, there won't be no stoppin! Physically, her mouth is starting to get into shape. Once she gains a little more control and calms down a little bit, that's it. Right now she just gets so excited, she is too funny. She literally tires herself out in a few minutes. Today she took about 6 ml legitimately, and started sweating a little bit, so then we let her rest, and she falls asleep.

Besides smiling, she also does "The Lip." We all know that fathers have little or no defense against this deceptively evil attack! I'll try and get some pics.

Abby weighed 3960 grams this morning. She is starting to gain some weight, which is great. She still gets physical, occupational, and speech therapy every day. We massage her back a little bit. The kidney doctor, Dr. Guillery, stopped by to talk about the blood in the urine. There's not much or anything, just under a microscope you can see the red blood cells. He's not too worried about it. He is doing an ultra sound and urinalysis to get some more info. The balloon is still on for the end of the week, so we'll see what happens. Cultures all negative. Wound vac thing is getting smaller - looking good. She got some blood because she was little anemic.

Jenn and I worked out a schedule for the next week or so, until Jenn's parents come out on the 20th at least. Hopefully, Abby can home sometime when they are here. It might be close, but certainly possible.

2008-03-09T21:51:00.000-07:00

Abby is doing good. I spent the past 2 nights with her. She is awesome. I love just being with her. She started smiling at us. Jenn stayed home to super clean everything at the house. We had our friend Pam watch Abby today while we went out and got all our baby stuff, like stroller, car seat, etc. It was pretty fun going out and getting everything.

Things out "on the floor" are definitely different, but manageable.

Good Day

2008-03-08T22:22:00.000-08:00

Abby's cultures from her blood labs all came back negative today ~ this means that she no longer has an infection, so we will be able to move forward next week with the procedure. Greg spent the day with Abby and I stayed home to thoroughly clean the house and play catch up. Greg said that Abby is starting to smile more and he thinks that she laughed, but were not sure. We are looking forward to the next couple of days. Remember to spring forward.

Busy Day for the Abinator

2008-03-07T19:10:00.000-08:00

Abby had a very busy day today, she had an EKG, X-ray and labs all before 6:30am. She also had a wound vac change (one more week until we are done), speech, physical and occupational therapy today as well as an echo. Since Abby is now out of the ICU, Greg and I are doing a lot more of the work - which we are very happy and excited about. We are both working on sleeping schedules because Abby can't be left alone at this time. She was put back on the canula last night with a little bit of O2. But no worries, it is a weening process.
Abby will need another procedure next week to fix her pulmonary branch stenosis -which is a narrowing of the artery in one short segment, this procedure will consist of using a balloon to open the artery his is similar to an angioplasty. We are hopeful that this will happen next week. She needs to get over a new infection that they found yesterday - the Docs are suspicious that it is due to the broviac since it has been in her for a long period of time - downside of that is it will make it very hard to pull labs and give medicine. We are hopeful that with administering antibiotics, rest and nutrition she will beat this infection without removing the broviac. Either way, she will need to be put back on the ventilator for the branch stenosis treatment but it should be no longer than one day. This will push back her discharge date back.
On a very exciting note, we were contacted by Emanuel Hospital's public relations office and wanted to know if we would like to share Abby's story. Which of course, we do. KATU News which is an ABC affiliate picked it up and will be doing a story on Abby the day that she leaves the hospital they are also going to pitch Abby's story to Good Morning America! Thanks for all the prayers - keep them coming.

Wagon Hoooooo!!!

2008-03-06T18:44:00.000-08:00

We took Miss Abigail on her first wagon ride around the hospital - something that we have been looking forward to for a long time. It was great. She loved it and got quite a few compliments about how good she was looking.

She is not on any oxygen anymore. She is completely breathing on her own fine for the first time ever. She still has the wound vac and has an NG tube. The wound vac will be on for about another week, maybe less. Dr. John said she has an incredibly fast healing capability. The feeding is going ok - it's going to take some time - but I'm sure things will be alright. Jenn and I are both patient. Abby always does things on her schedule.

19 Weeks Old!!!!

2008-03-05T19:56:00.000-08:00

Abby was sleeping in her new room this afternoon with the daylight coming in through the bright window. This was the biggest day ever. Finally coming out an ICU for the first time. We went left down the hall instead of right - which was down to the O.R. We are in the School Age section - which is awesome because its in the same section where BINGO is played!

Abby is doing awesome. It's truly incredible. I couldn't believe a week ago she was intubated. I never would have said we'd be out on the floor in a week. Jenn and I so thankful. We are kind of in shock. Not in a bad way though. We're excited - but just can't believe it. I am going to take her for a wagon ride soon. Maybe tomorrow or the next day.

Jenn started breast feeding for the first time today. It is going to take some practice, but should be fine. She is also eating a little from a bottle, but still gets tube fed for now. Her wound was cleaned today and parts of the skin have come together already -which is so fast - she's like Wolverine from the X-men. She is barely on any oxygen/lung support.

The entire staff at the hospital - all the doctors, nurses, surgeons, therapists, chaplains, food, life, etc. have been so kind to our family. Thank you so much. For everything.

First Time Feeding Abigail!

2008-03-04T23:22:00.000-08:00

For the first time ever, Abby took the bottle 3 times today!!! She drank 10 ml each time. It was amazing. She would suck a few times, then get excited because she would forget to breath. Then she would breath, and get excited because she wanted the bottle. She is still feed through a tube too. Of course, Abigail Rose continues the "genius baby" theme in our family and eats from a bottle the very first time.

She will be leaving the PICU and going to the floor tomorrow!!! This is huge and will be a big transition for everyone. She is doing so good. I can't believe how fast things are going. But, it's fine with me. She may be home sooner than I thought. It's crazy to think about how fast she is continuing to recover. It just makes me think about how long it took to recover from her surgery and how sick she really must have been. It seems like a million years ago.

2008-03-03T18:43:00.000-08:00

Abby was enjoying her new swing. She falls right asleep. She was on just regular nasal cannula - really only getting a whiff of air. So she has been doing great. The therapists have been working on her neck, back, and shoulders. We are swaddling her so her arms and legs are in close to her and moving her to her sides. She still loves her pacifiers. Her voice still has to heal quite a bit. Dr. King did not decide to try to feed her yet. I heard he spoke with Dr. Baxter in the NICU. Abby will be going to the floor and not back in the NICU. The neonatologists said she is too far along. The insurance also said she didn't need to be in an Intensive Care Unit.

Also, she got her last catheter taken out, plus got her wound vac changed out. I saw the wound. Jason said it looked great after 3 days already. The skin is coming closer together. He said maybe another week or two.

2008-03-02T20:25:00.000-08:00

The pictures do not do her justice. Abigail Rose is truly beautiful. She was being real active and alert. But not fussing. I think her neck is still a little stiff. But I'm sure she loves not having those bars in her chest and that tube down her throat. Her voice is getting a little stronger each day. Her progress continues. We also found a little birth mark on her back - so that was cool.

Today we went to a concert. Our friend Tim plays the tuba in the Portland Community Wind Band. It was pretty awesome. They played with a local 6th & 7th grade band too.

2008-03-01T22:26:00.001-08:00

I got Dr. King - who is very conservative - to say that he could see Abby coming home in 3-4 weeks!!! This is huge news!! Jenn and I are so excited to have our baby girl finally coming home. Her progress since Wednesday has been remarkable. She seems to have crossed a major threshold in her recovery.

She did get extubated today and skipped right past cpap and is on a high flow nasal cannula. She has been doing great. She could come out of the ICU soon too. She can either go out to the floor or to the NICU. There are 2 sides of the NICU and she would be on the less critical side.

She's had a room mate for the past few days. I think she is about 7 and has cancer. She seems to have gone through some tough times, but is recovering well. Her parents are really nice.

Another Big Day!

2008-02-29T19:01:00.000-08:00

Today was full of surprises! Jenn called me this morning and said they were taking her off cpap. I said great! Then she called me and said they were going to remove the bottom bar. I said great! THEN she called me and said they decided to remove both bars and wire her sternum shut! I said great! That is what they were supposed to do way back in December. Everything went great. She did fine. They put in 2 wires in the shape of figure 8s. Then put a layer of her tissue on top. They also put a wound vac on. It will bring the skin closer together and suck out any bacteria that might be in there. It will probably be on there for 7-10 days. This is all exactly what is supposed to happen. We are back in chartered territory. No more, "we never did that before!" The only somewhat bad thing was that she had to be intubated for the surgery. But they expect to extubate tomorrow. She'll be back on cpap for a few days, but she should be fine. Dr. King actually said he was surprised with how well her blood gases had looked. After all the breathing stuff gets taken care of, we will concentrate on training Abby how to feed. The therapists are all really excited about how well she is sucking already. Plus, she was wearing pants like a big girl today too!

Abigail has made remarkable progress these past few days. It's been unbelievable. We can't thank all of our family and friends for all their support throughout the past 4 months. I know that we still have a ways to go, but it does seem that we can now see the light at the end of the tunnel. I can only hope that everything continues to go so well.

2008-02-28T19:43:00.000-08:00

As Randy Jackson would say, "Yo, the Little Abinater was rocking it out tonight, dawg!!" She was sucking on the pacifier like she has been doing it her whole life! Considering that she has been intubated for about 14-15 weeks out of her total of 18, the fact that she was basically eating her pacifier is truly amazing! She just got the tube taken out yesterday!!!!!! The nurses and therapists are astounded!!!

They started feeding her 60 ml in an hour every 3 hours. She no longer gets continuous feeds. She still gets fed through a tube in her nose. But, as you can see, when she eats, she doesn't have the cpap on! I don't think she really even needs it, but they will keep it on her for another day or two.

Her voice is starting to come back already too. When her vocal cords fully recover, watch out! She definitely has a set of pipes on her!

It's so funny, she gets fussy when she gets hungry. Then sucks on a pacifier. I was holding her and really felt like she was a real baby for the first time in a long time. My Mom said its like she is doing being sick and is ready to be a good little baby! I hate to get my hopes up too high (too late!), but the past 2 days have been so awesome!

Abby got Extubated!

2008-02-27T19:56:00.000-08:00

So far, she has been doing great! Her blood gases have been perfect so far. She will be on cpap for at least a few days - I suspect. Our little girl is truly amazing. I can only hope this good fortune continues. Many thanks to everyone who has been praying and sending positive thoughts.

So Close . . .

2008-02-26T19:55:00.000-08:00

Hi everyone! Abby was not extubated today. She was pretty close but the powers that be did not feel she has enough leakage for the airway. They gave her steroids throughout the day so that the inflammation in her trachea will go down. Goal is to extubate tomorrow. Overall, Abby is doing great and boy is she ready to have that vent out. She had a parade of her fans stopping by from the Nicu and other parts of the hospital to see how she is doing.

The Latest X-ray

2008-02-25T17:47:00.000-08:00

You can see the pins they placed in her bars. I spoke with Dr John. He said that the pins are placed in her sternum, but they should have no problem getting them out when the time comes. Jason said that bones usually take at least 6-8 weeks to heal fully. She could come home with the bars still in place. Her left lung keeps looking better. Abby weighed a little over 3800 grams and was 52 centimeters long- a little over 20 inches.

They removed the dialysis catheter today. Tomorrow, they plan to take her off the ventilator. That is a huge step. We will see how she does. Hopefully, everything will be ok.

Jason asked the nurse, "Are you still using the butt paste?" Now, of course, we all knew he meant for Abby, but the way he said it, was classic. It was pretty hilarious.

Happy 4 month Birthday!

2008-02-24T20:36:00.001-08:00

What a day to celebrate, Abby is 4 months old today. We had a good day at the hospital even though Greg is still out sick. We listened to music, played and watched one of my favorite shows, No Reservations with Anthony Bourdain. Abby is becoming very agitated with the ventilator, you can tell that she really wants it out, which will be our focus this week. All of her blood gasses and lab results came back on point, she is continuing to do great and amaze.

2008-02-23T21:57:00.000-08:00

Abby is doing well after the closure yesterday - she had a 121 gram diaper, which is a new record! We are really happy and thankful that our supergirl is doing so well. She is on MMV which is the "doing it yourself" status on the vent. They lowered her settings so that she is doing most of the work herself. She did spit up today while I was holding her, but that is ok - she is acting like a baby. She is such a joy to be around and we are so in love with her, she is such a blessing.

We had such a nice evening over at Greg's boss Sharon's home. It was nice to hang out with friends and catch up. Tomorrow is Abby's 4 month birthday, an absolute miracle. Love to you all.

They closed Abby's chest!!!

2008-02-22T20:40:00.000-08:00

Yes, after a mind boggling 10 weeks, (her first surgery was Dec.14th) Dr. John finally closed her chest. Of course, it's not really "conventional" - but nothing is with Abigail. She seemed to be recovering well after the procedure, didn't seem to get real puffy or anything. She got many visitors as word spread they finally closed her up. Beforehand, Dr. John went over the procedure with me to have me sign the consent form. I told him he better close her up today, or I wouldn't sign it! He said he was going to close her up and he did!

It's kind of hard to describe. I'll get a picture of the x-ray. Dr. John cut the "bend" out of the bars. There were 2 ringlets on each side. He brought the 2 sides together and put a "bolt" or small pin through the ringlets. This brought the 2 edges of the sternum close enough together so that over time (at least one month, maybe more) the bone will fuse together and the skin will heal and grow over top. Sounds to me like a piece of cake! He will leave the bars in there until her little sternum is done healing, then remove the bars.

Our next goal is to get her off the ventilator. I assume the first attempt will be sometime this week. She will probably go on cpap and we'll see how our Supergirl does.

Sitting up like a big girl

2008-02-21T20:16:00.000-08:00

Even though it may look a little uncomfortable, with the help of the Physical Therapist, Abby was able to sit up today and she really enjoyed it. Her stats improved and she was able to breath easier. We are going to bring in a bouncy seat and hopefully she can sit in that after tomorrow's surgery.

SO . . . the plan is to do the final "tightening up" tomorrow. After that we will work on getting the breathing tube out, feeding and then take her home - I'm thinking 6-8 weeks. Great stuff.

2008-02-20T20:35:00.000-08:00

Abby is progressing well, they lowered her vent settings so that she is breathing more on her own and changed her dressing. Nana was able to see her "open chest" this morning when they changed her dressing. The PA, Jason is very happy with her progress and how she is healing. He is very optimistic that we will be able to close her chest on Friday, albeit not in the traditional manner - big surprise :). If they are not able to close her they will definitely close her the following week. Abby had physical and occupational therapy today. We also read out of Abby's new book, 20th Century Treasury of Children's stories - if you are a parent it is a must have. I returned back to work part-time yesterday and it is going well, the overwhelming support for Abbym Greg and I is a blessing.

2008-02-19T19:39:00.000-08:00

Abby was doing pretty good today. She got a massage today that lasted over 1 hour while a harpist played in the room. They treat her pretty well there! All three of us got to hold her. Jenn started back to work today. She goes in to see Abby in the morning, then goes to her office 1-5. I still come in to see Abby in the afternoon. Our nurse, Ericka, put a projection lamp in the room that puts different scenes on the ceiling. It was pretty neat. Of course, Abby was sleeping when it was first brought in, but I'm sure she will like it.

A Good Day By Nana

2008-02-18T19:59:00.000-08:00

Nana here - Greg and Jenn dropped me off at the hospital after we had brunch at Shari's - they were hoping to go up Larch Mountain - the weather was beautiful temps in the 60's and SUNNY.
Abby looked wonderful, very calm when I got there. She slept a while but before long she was waking up, stretching and looking around. She can focus and smiles. Such a cutie. She can fuss too especially when she wants her diaper changed or needs to be sunctioned but then she looks around again. She is really respondsive. She had occupational and physical therapy - they are very kind and explain everything to her and whoever else is in the room - today that was me! we just had a really, really nice afternoon.

Greg and Jenn came back and Abby woke up when they got there. She is a smarty and wanted to make sure she saw her mom and dad. She certainly knows their voices. Too much snow and ice up high for Greg and Jenn to get all the way up the mountain but I think everyone had a good day!

Nana is here!

2008-02-17T21:44:00.000-08:00

Abby went back to the MMV setting on the vent today - so that is good. She is getting used to her newly tightened chest. She was a little crabby today, nothing major.

I included a picture of the latest x-ray. You can see the bending they are doing.

Lil' Tooter

2008-02-16T19:46:00.000-08:00

We had a fun day with Abby today. She had a huge diaper - 106ml! We got to hold her again and there is just no words to describe how that feels. She is quite the fiesty little girl and makes the funniest faces when she toots - which is a lot, must be the brocoli in the breast milk. She is back up to full feeds and did not get puffy after the procedure yesterday. She is slowly but surely getting better!

We got to hold her like a real baby!

2008-02-15T19:37:00.000-08:00

The surgery went well. They were able to close her another 1/3 third today. That means she is about 2/3 closed! Dr. John will attempt to close her sternum all the way next Friday. If he can't, then for sure the next Friday. He has ordered some special nuts and bolts that he will use to fasten the titanium bars together. He will let her 2 halves fuse together over a period of 1-2 months. Then he will remove the bars. He has been very pleased with her overall progress and with the way everything has looked and healed.

We asked him about his thoughts concerning Abigail coming off the vent. He said because she has been on the vent for months, she will need a lot of support. He said she will probably go back on CPAP. He said he wouldn't be surprised if she had to go back on the vent. He also mentioned she might need a tracheostomy. That way she could breath on her own, but instead of putting the tube back in her throat everytime she might need it, they could just hook her up to the vent through the trach. This is something that has not been decided yet, just wanted to let people know it is a possibility.

Happy Valentine's Day!

2008-02-14T19:49:00.000-08:00

Abby was just hanging out, doing her thing. She was peeing, pooping, tooting, squirming all around. They are going to switch her bed to a crib soon, so she is getting to be such a big girl! Tomorrow they are going to tighten her chest again. She should be getting off the vent pretty soon - maybe a few days after tomorrow. The nurse, Trishia, called us and said she got us permission to actually hold her like a real baby tomorrow. It should be awesome! It will be over 9 weeks since we last held her.

2008-02-13T21:06:00.000-08:00

Abigail was really sleepy today. We don't think she has slept very much the past couple of days, so it was good to see her rest. Her withdrawal symptoms seems to be subsiding. She is off the dialysis. The kidney doctor came in and said he would still be "in the background", but at this point, he wouldn't really be doing much. Her kidneys seem to be doing fine. I don't know if they are 100%, but they will get there. They are going to leave the tube in her belly for now, but will probably take it out on Friday.

The speech therapist came in and started seeing how she would respond to different smells. She really did have a postive reaction to cinnamon. Speech therapy in her case will really help her with eating and feeding. We have to see if she will an "oral aversion" since she has had the tube in her throat for so long. She still seems to suck and lick at the tube, so it's just something we have to wait and see how she does.

They are going to tighten her chest again on Friday. She should be fine. After that, they will see if they want to take her off the vent. So, we will see.

Loungin'

2008-02-12T19:52:00.000-08:00

Today was a good day for loungin'. Abby had a great nap today. We have noticed that as Abby goes through withdrawl from the morphine she tends to become Crabby Abby and tires herself out. They stopped her dialysis and if she continues to have good urine output they will unhook her at 10:45pm. When we left she was averaging 8ml of urine an hour which is way above the average of 1ml an hour - Great news! We're making progress.

Due to high demand we also included a picture of our infamous cat Buttons aka butt-butt loungin'

2008-02-11T19:34:00.001-08:00

Abby was doing ok. Her room mate wasn't there. Don't know where he went - probably just another room.

She was off her morphine drip. Her dialysis was every 4 hours. She has a little sore on her butt, we have been putting medicine on it. We don't want that to get worse. It's in a bad spot that is difficult to heal.

The main thing that happened today was some other patient had to get on ECMO. It wasn't a planned thing, so there was a lot of tension and people running around. It was pretty hard to see that machine and all those people again. I feel bad for the family. Hopefully, everything will turn out all right for them.

2008-02-10T16:20:00.000-08:00

Abby got a room mate today. A little boy named Allen. Don't really know too much about him.

She was doing good today. She weighed a little over 3800 grams. They lowered her dialysis to every 4 hours. Dr. Jenkins said he didn't think that she would have any really long term kidney issues. So cross that off the list. He didn't think she would need the dialysis many more days. He was saying how much it looks like she has been growing, especially the size of her head. He said considering how sick she was, that was great.

I forgot to mention yesterday that Dr. King did an echocardiogram. He said that her heart looked good. There was some narrowing of one her pulmonary arteries. This is not new. She will need an angioplasty - a balloon - to get that back to normal. I don't think it will happen anytime soon, but eventually. He said the dye they inject to do the procedure hurts the kidneys, so he didn't want to do it until the kidneys were 100%. That is the reason her one lung has always been worse than the other. I believe that the one lung gets too much blood. I don't have that all quite figured out yet.

2008-02-09T18:56:00.000-08:00

Sorry for not updating this sooner.

Abby is doing fine. They were able to close her chest about 30%. Dr. John estimates that she should need 2-3 more procedures to get her fully closed. It was kind of weird in a way. They really didn't know how they were going to bring the "bars" together until they got in there. They thought they might cut the rings out, then somehow fashion a screw to connect the 2 pieces. Or wire the two ends together. What they ended up doing was just bending the bars with some pliers. They kind of "kinked" the bars up bringing the 2 halves of the sternum closer. She puffed up a little bit after the procedure. They increased her dialysis to 2.5% every 2 hours to get her fluid balance back to normal. Dr. King said he basically wanted to get her off the dialysis before they try to extubate her. It should be in about a week. He said that he didn't want to be filling her belly with dialysis fluid because it would put pressure on her diaphram.

Since my Dad was here, Jenn and I went on a date night. We had a lot of fun. One thing we did was go to an underground 3-D glow in the dark/black light minature golf course.

2008-02-07T19:57:00.000-08:00

Abby was pretty sleepy this afternoon. She wasn't really awake at all. They lowered her dialysis to 1.5% and every 3 hours - which is great. They are pushing to get her off the dialysis all together. They also told us that tomorrow they would remove the first "link" from her chest. So we will see how that goes. Everyone keep your fingers crossed.

15 weeks!

2008-02-07T06:56:00.000-08:00

Abigail turned 15 weeks old yesterday. She seems to be doing ok. They started doing her dialysis every 2 hours instead of every hour. When I called this morning, her kidney numbers were even lower than yesterday, so that is fantastic. It means her kidneys are doing their job. Hopefully, that continues. They are still planning on trying to extubate her soon. Maybe Friday or as late as Monday. We are trying to prepare ourselves. Abby has always been on her own schedule. She might not be quite ready, in which case, they would have to intubate again. I've been told it is common to have to try 2-3 times. But who knows. GrandDad visited last night. She did good. She got a little upset, but then they gave her her medication, and she calmed down. We put a black and white picture of a bulls eye above her. She loves it! She stares at that thing all day long!

2008-02-05T20:49:00.000-08:00

Today was good. Abby was pretty much the same as yesterday. She seems to be tolerating the vent pretty well. Still peeing. She is so cute. Grandpa comes to visit tomorrow, so I know she is excited about that!

2008-02-04T20:15:00.000-08:00

Abby had a great day today. They switched her ventilator settings from CMV to MMV - MMV is the setting that Abby is doing most of the work with support if she needs it. This is a huge step and she is doing well. They also lowered her dialysis concentration and she is peeing more. The next steps regarding her chest is to start taking the links (one or two at a time) the end of next week and start slowly closing her chest. We are also very hopeful that she will be off the ventilator next week.

I wanted to especially make sure that I thank my co-workers at WorkSource who organized a Bunco fundraiser last Friday. Greg and I are so fortunate to have such caring and supportive employers.

On a personal note, a friend's son in Pennsylvania, Derek, has recentley been diagnosed with cancer. Since your prayers have been essential and so helpful for Abby and her progress, please include him and his family in your prayers.

Lots of love.

2008-02-03T22:01:00.000-08:00

Abigail was ok today. Her blood work was almost the same as yesterday. Dr. King said her CO2 level was in the mid 50s which was about where he expected. He said she does have some chronic lung disease. They switched her anibiotic to fight a different bug in her lungs. It's what happens when she is a ventilator for so long. She is still doing good. It's just hard to see her deal with the pain. There is not a lot we can do. We can massage her, hold her hand, stroke her head, change her diaper. That's about it. In a week or so, she should be off the vent. I will ask and push to hold her once she is off the ventilator.

Day 101!

2008-02-02T18:44:00.000-08:00

The little cutie pie was being herself today. She'd get mad for a while, then sleep for a bit. We gave her a massge. She was peeing too. Doing things that normal babies do. We saw an x ray of her lungs. They keep looking better. They lowered her vent to 25% oxygen. They also lowered her minimum rate and volume. She has constantly "overbreathed" the ventilator. So far she has been tolerating it pretty good. The CO2 level in her blood gas has been ok.

2008-02-02T07:10:00.000-08:00

Abby did good yesterday. She was upset in the morning, but got her massage, then seemed to calm down. She peed on both my and Jenn's hands. I can't wait for her to run around here acting all crazy!

2008-01-31T20:17:00.000-08:00

Abby was funny this afternoon. She would get all agitated and fussy whenever she pooped or had to get suctioned, then she would tire herself out and go to sleep. She seemed to tolerate things a little bit better today. She was peeing today too. Dr. John said that he never really saw any kidneys "re-fail." So he thinks that she should continue to improve in that department. Dr. Jenkins also thought her kidneys should continue to get better as well. They are still slowly lowering the ventilator setting, and Abby is tolerating it well so far. They changed the dressing on her chest and said the wound looks good.

Dr. John said the plan is to close her chest by slowly removing the "links" in the "chain." After he is sure the plates are secure and fairly healed, he will remove one of those "links," then reattach the 2 ends, slowly bringing the sternum together. Of course, he has no idea how long this will take. It's all new ground.

I know I have said this before, but this is going to be a long process. I conservatively estimate that it will be at least 12 more weeks. I could be wrong, but - who knows. This whole thing is insane. It's starting to wear me down a little bit. But, I am still positive. Just need to keep focusing on the daily, little things. If I start to really think about everything, I go nuts.

2008-01-31T06:30:00.000-08:00

Abigail had a good night. She continues to pee in her diaper. Her kidney numbers went up a little bit from the day before. She weighed about 3300 grams. They still pull off excess fluids with the dialysis. I'm not sure where all that fluid is coming from. They continue to lower the ventilator settings, and she seems to be doing fine with that. She seems to be in more pain than before. Or at least able to show that she is not happy. I think she is starting to get used to the morphine. I don't think she likes those bars in her chest.

2008-01-29T20:30:00.000-08:00

Abby was getting back to her old self. She was really showing some emotions. Mostly, when she was unhappy. She seems to be entering a new phase. She is really moving around more and making faces. Her physical therapy is continuing and she really is making good improvements. Her kidney function is continuing to improve. Dr. Guillery is very happy. She peed a bunch of times. When we called tonight, she had a seriously wet diaper. So that is awesome. Her BUN (blood urea nitrogen) was 23. Normal for her is 5-10. She was over 100 at one point. Her creatinine was .8 Normal for her is .3-.4. She was over 2.5 at one time. She was tooting a bunch today. They are going to start to add protein to her feeds. Things seem to continue to go in the right direction. It is very slow. I am feeling impatient, but just have to remember to relax.

One of our good friends from college, Abby Umansky, makes her own jewelry. She is going to donate a portion of her proceeds to our fundraiser. Please check out her site to the right.

I saw her pee!

2008-01-28T20:07:00.000-08:00

Abigail was a good girl today. We had a Pee-Pee Princess sighting. I saw her pee a little bit today, so that means she is producing urine. It's not much, but it's in the right direction. She does have diarrhea. So that is something that they are working on - trying to get the right combo of stuff in her feeds. They are slowly weening her off of the ventilator. They test her CO2 levels in her blood to see how she is doing. It would be the first time they have extabated anyone with an open chest. I think that is still 1-2 weeks away.

Fantastic Fundraiser

2008-01-27T19:11:00.000-08:00

We had a great fundraiser today and we raised a little over $2000.00. It was great to be with friends and come together for Abby. Major thanks to our good friends Kim and Jay for organizing this success.
Abby is doing well, she spit up a little - we think she has a little tummy ache because we had a lot of diaper action as well. She is a little puffy from the surgery. We are looking forward to another great week, thanks for your continued love and support.

2008-01-27T00:01:00.000-08:00

This is what it looks like. The Erector Set. Supergirl - with the titanium chest. The "chain" is rigid - not very flexible - screwed in. It is not permanent. Should only be for maybe 2-6 weeks. They provide stability for her to physically go through the mechanics of breathing. You can see the Broviac going up her right side, then down. The ventilator is the one straight down her throat. You can also see her lungs. The darker the area, the better. That is air. Her left lung is worse than the right - which has always been the case.

We heard that she peed tonight. That would be huge. Abby hasn't peed in weeks really. A couple of drops here and there. But that would mean her kidneys are functioning.

Dr. Hagop said her next goals are to get off the ventilator and get her kidneys going. If she is peeing, great. Then hopefully in a week or two, they can wean her off the ventilator.

2008-01-26T09:27:00.000-08:00

The blog last night was written by Jenn. She is a little more "upbeat" about the whole situation. I am still positive, but was upset that they couldn't close her "normally." Abby is doing fine this morning. She seems to have tolerated the surgery rather well.

2008-01-25T22:58:00.000-08:00

Abby had a good day today. Although she did not get her chest closed . . . in the traditional manner. They were not able to close her sternum because there is too much scar tissue and when they did attempt to close the sternum there was too much pressure on her heart. What they were able to do was put in two titanium plates in her chest to keep her sternum and chest stable. Dr. John is hopeful that the sternum and the scar tissue will then heal on its own, in a couple of days or a couple of weeks. So, in the traditional manner her chest is still open, but were on our way to close it - Abby style.

On a very positive note, they did an ultrasound of her bladder and kidneys and they saw some urine in her bladder and her kidneys looked good - we just need to give them the opportunity to work. Before the surgery today, Dr. John showed us the latest X-ray of her lungs and they look good! We compared them with an X-ray from 12/21 and they are so much better it's almost unbelievable. The next thing that we are going to work on are her lungs- they will start to ween her off of the ventilator to see if they can take her off of it - no time frame but it is a step in the right direction. Abby also got a broviac put in, which will help cut down the risk for infection. Abby tolerated the surgery and is recovering. Thanks so much for the prayers - looking forward to seeing you on Sunday.

Happy 3 Month Birthday!

2008-01-24T18:23:00.000-08:00

Tomorrow is her "pedicure." That is the code word we have to use, so Abby doesn't know what is really going to happen. Her white blood cells was down to 14. She lost over 200 yesterday. She weighed 3020 grams. That's about as good as we are going to get. They reduced the concentration of the PD fluid. She is pretty much ready. It will be 6 weeks with her chest open. Pretty unbelievable.

B-I-N-G-O!

2008-01-23T21:00:00.001-08:00

We all played BINGO on some funny hospital channel. (Ch 25) The hostess is down in the Starlight Lounge in front of a live audience broadcasting BINGO every Wednesday. Instead of numbers, they call out medical terms, then give the definitions. For example: pulse oximeter, eletronic thermometer, bed pan, and alcohol wipes. For kids that can't leave their rooms, we can watch on TV and call in when we win. We won 2 times out of the 3 games. It was pretty funny. For a prize, Jenn picked out the "elephant caterpillar" next to Abby. She lost over 200 yesterday. White blood cells stayed the same - but she had some stress yesterday. They aren't worried too bad. Looks like they are going to close her Friday afternoon. Should be no problem.

2008-01-22T19:43:00.000-08:00

Poor little thing, extabated today. It was the fourth time. The tape job they did got really loose since it was in there for a while - like a month and half. The good news was she did "relatively ok" during the whole thing. Her heart rate dipped - but not too far low. They bagged her and she was basically fine, got the new tube in on one try, and was pretty much done with it.

2008-01-21T21:15:00.000-08:00

Abby lost 214 yesterday. Dr. John changed her dressing today. He put some "seaweed stuff" on her wound that is antibacterial. It doesn't look like "seaweed." Jenn says it looks like angel hair pasta. It looks like really fine straw.

She got some more physical and occupational therapy. Lisa, her OT, does really great work. We believe the time Lisa spends with Abigail is crucial to her continued recovery. Lisa's entire approach is very healing and therapeutic.

Abby's chest looks better everyday. I hope I am not getting too optimistic, but Dr. John (and me) hopes by the end of this week - maybe - we can close her chest. I asked him how much longer after the closure can we hold her, he said probably the next day should be fine. I think she really needs to be held. I'm sure that she would love that. I know we would.

2008-01-20T18:09:00.000-08:00

She had another good day. She lost 216 yesterday. Her white blood cell went down to 17, which is, again, in the right direction. Her night nurse Megan drew the awesome picture for her. She was awake for a good part of the time we were there. We gave her a massage - which she loves. Her chest looks better. It seems possible that Dr. John could close the sternum soon.

2008-01-19T19:35:00.000-08:00

This was taken yesterday. Today was cool. We saw "Walking with Dinosaurs" with Tony, Lisa, and Xavie. It was a pretty awesome show. Xavie really liked it.

2008-01-19T08:58:00.000-08:00

Abby had a great night she lost another 292 units of fluid (same as the day before, forgot to put that in the update). The cultures that they took to detect for infection have come back negative after 24 hours which is a good sign. Her white blood cell count dropped from 21 to 20, still high but at least going in the right direction. Hopefully her white blood cell count will continue to drop and there will be no new infections. She still has an infection in her lungs but it is not growing. Thanks for the prayers - have a great day.

2008-01-18T18:32:00.000-08:00

Unfortunately the surgeons were not able to close her chest today. They were also not able to put in the broviac because her white blood cell count went up which can be an indication of infection - they took a bunch of cultures for testing and we should know for sure in the next 24 - 48 hours. If there is no infection and Abby was just throwing us another curve ball, they will attempt to close her chest next week. If there is an infection it will push back the closure - pray for no infection.

We also had a care conference today with Dr. King, Dr. John and Dr. Guillery who is the Kidney doctor. Dr. Guillery is encouraged by her latest kidney ultrasound but because there has been no urine output, he is not sure what will be the end result - he stated worse case scenario she will need a transplant, best case scenario her kidneys will bounce back. Everything that we need to work on - lungs, getting the fluid off and improving her kidneys is all based on getting her chest closed. The doctors stated that they are not giving up and neither are we. Lots of Love.

2008-01-17T21:03:00.000-08:00

Abigail will go in to get a Broviac catheter tomorrow morning. She will be taken down to the OR. That way, it can be as clean as possible. Check it out:

http://www.eapsa.org/parents/resources/catheter.cfm

Also, they will try to see if they can close her. We know that Dr. John will not do anything that would hurt her. So we are sure that everything will be fine. He just has to see what its like when he gets in there.

She is so brave. And strong. If they can't close her - they could always try again next week.