Another Big Day!

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.

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!

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 . . .

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

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!

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.

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!!!

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

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.

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.

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

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!

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

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!

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!

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.

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'

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'

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.

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.

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.

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!

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!

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!

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.

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!

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.

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!