Monday, December 31, 2007

Abigail was recovering from her little procedure yesterday. She is slowly getting rid of extra fluids. She still has an infection in her lungs, but that is not new.

Pop-Pop is leaving tonight. Abby is going to miss him a bunch.

Sunday, December 30, 2007

Another good day

Abby had another good day today - She had another "wash out" which is when the surgeons go in and clean out her chest cavity. Dr. John was pleased with her progress and was able to close her chest a little - not all the way - but we're getting there with baby steps. One of the reasons that we really want her chest closed is because there is a very high risk for infection keeping it open - in fact on Friday at the meeting with Dr. King, he shared with us that they never had a baby survive this long with an open chest - but as well all know, Abby is a fighter and will beat the odds. Her other signs are good, her potassium levels are up, she is peeing and we are slowly weening her off of her blood pressure medication. The focus is getting as much fluid off as possible so they can close the chest. Even though we will not be out of the woods once the chest is closed, it is a HUGE STEP so please keep up the prayers - they sure are working.
Yesterday, Abby did good. She lost a lot of fluids. Her lungs looked better. They started giving her breast milk, which is really good news. She peed a lot and had a big poop. They were able to ween her blood pressure medicine a little bit too.

Nana went back home. Abby said she will try and get better so Nana can see her when she is better.

Friday, December 28, 2007


The nurse painted her fingernails and toenails this morning. So - she got her first manicure and peticure at 2 months old.

We had our meeting with Dr. King tonight. I have a lot of mixed emotions about it. He stated all the reasons why she won't survive. Of course, we all believe she will eventually come home. Maybe tomorrow I'll give more details - tough night for everyone.

Thursday, December 27, 2007

Abigail had a good day today. Nothing major happened. Her chest is still open. Her blood pressure seems to be under control. Her breathing seems ok. The ultrasound of her kidneys was good, although she is not peeing as much as she was before. They think the left ventricle of her heart is not pumping as well as it should be. The left ventricle is the chamber that connects to the aorta and supplies the body with oxygenated blood. The left side is usually the stronger side. Since she had the transposition surgery (her aorta used to be connected to her right ventricle), we think it makes sense that the left side might not be as strong as it needs to be yet. With time, her left side should gain strength and be fine. She is still in critical condition.

Tomorrow we have a meeting with her cardiologist. We are a little apprehensive to hear what he will say. He will go over the plan of action.

Wednesday, December 26, 2007

Today was good. We were told her blood pressure was an issue. We had mixed feelings about this. It was a little low. We decided we were not going to worry about it right now. Then, Jenn just called the hospital and said she is on half the blood pressure medicine she was on this afternoon. She is still running negative and her blood work looked good. So - our feeling was correct. We think Abigail is doing great.

Yesterday, they gave her a break from the paralysing medicine. They like to do that every once and a while to see how long it takes to "come around." She was opening her eyes today and moving her little hands a little bit- which was awesome. We can't wait to hold her. (They gave her more medicine so she would continue to "sleep.")

I think things are still going good. They might close her up Friday. So we will see.

Tuesday, December 25, 2007

Merry Christmas!

We had an awesome Christmas. Our baby seems to be doing good and it actually snowed here today. That is very unusual. I never want to get overly optimistic, but things seem to be going in the right direction. Abby continues to lose fluids and her lungs are slowly but surely improving.

I added a bunch of Christmas pictures to the slide show. We gave her the Supergirl outfit. The nurse even did her hair this morning.

Monday, December 24, 2007

Two Months Old...The Night Before Christmas!

They cleaned her out again this morning. They do that to keep the infection from getting out of control. So far, it has not gone into her bloodstream. They changed her dressing. It's not that brown "seran wrap" anymore. They put on a skin graft and some silver antimicrobial thing over top her chest now.

We seem to have entered a new phase. Last week, things were happening almost daily. Now, we are in a slower time. She just has to get fluids off and continue to recover from everything that she has been through. We all have to have patience.

Merry Christmas to everyone. The hospital had carolers come through the PICU. This certainly is a different Christmas for all of us.

Sunday, December 23, 2007

Today was a day of recovery. Abby looked good. Nothing really happened, which is good. It was nice, she only had 1 nurse. They were getting more fluids off her. Jenn heard they were going to do a "clean out" tomorrow morning, so we'll see. Hopefully, that won't be a big deal. Dr. Igabashian said maybe Wednesday or Thursday they would close her up.

We had some very nice visitors come and stop by to see her.

Saturday, December 22, 2007

"The Force Is Strong With This One..."

Today was an amazing day. We got there this morning and the doctor said we would be going off ECMO this afternoon. He said they gave her a ton of blood last night. They were in "uncharted territory." He couldn't believe that she had survived after being given that much blood and blood products. She was still oozing a lot and it had gotten to the point that the ECMO machine wasn't helping her anymore. She needed to get off the machine, so that they could get her off the blood thinners, so she could stop bleeding. The only questions were the lungs and if she would just bleed out when they took the cannulas out.

He said that if it was any other baby, there would be almost no chance of survival, but because of the fact the she has made it this far, she might have actually have a chance.

So, they weened her down off the machine, the surgeons came in and the operation began. Talk about tension. The five of us didn't breath for about 2 hours. The surgeon meet us in the waiting and said everything went fine. She was stable and the bleeding was down to a trickle. Jenn asked him if it was OK to give him a hug, he said yes, and all 5 of us gave him a giant group hug. We think he was kind of surprised. She will recover for a few days and get the extra fluids off of her. On Tuesday or Wednesday they will close her chest. There is still a high risk for infection. They don't like to have the chest open for more than 7 days.

The entire staff at that hospital is unbelievable. They really earned their money this week. We are not out of the woods yet, but this was a major milestone.

To all the many people who have prayed for our baby: THANK YOU!!!! We know she has touched many people. So many people have been so generous. Many people we don't even know. I can't even express the emotions we have all been through. Please continue to pray for our sweet little Abby.

Friday, December 21, 2007

Nice and Easy...

Today was relatively easy. The doctor said that she needed to rest and there would be no procedures today. We completely agreed. They just wanted her to relax today. We also enjoyed the "light" day. They just wanted to concentrate on her "drying out." She was very bloated from yesterday's surgery and needed to drain all those excess fluids. Her lungs are inflated, but are filled with fluids.

They were doing 3 things to get rid of the fluids. She is still peeing, the ECMO is now taking off fluids (which is something they started last night), and peritoneal dialysis.

The doctor stated that she is the strongest baby he has seen in his 10 years of medicine.

Jenn's coworkers came to visit us today. They had a fundraising breakfast this morning. They brought us an enormous early Christmas present!! We are so grateful. We decided that when she comes home, everyone will come over for a party. Then everyone can take turns holding our little Supergirl.

Hopefully, the plan is sometime they will take her off ECMO sometime this weekend. Here is a link from the hospital's website about ECMO treatment:
http://www.legacyhealth.org/body.cfm?id=758

Thursday, December 20, 2007

Abby is still fighting. She is an amazing little baby. Today was nerve racking, but ended up ok. We didn't really lose any ground today.

They went in to clean out her chest, and ended up trying to see if they could get her off ECMO. They kind of did a trial run. They had her "off" the ECMO for over 2 hours. She was still physically connected to the machine, but she was doing all the work. (Once they surgically remove the cannulas from her heart, it's basically a "one shot deal" - there really wouldn't be enough time to get a new machine hooked up.) They decided that she was close, but that her lungs weren't quite ready. We saw her x-rays from 3:00pm today and they looked the best they have been. The plan is to let her recover tonight, then see what her lungs look like tomorrow, and then maybe try and take her off the ECMO. Abby is now on a oscillating ventilator, the vibrating one wasn't quite working for her. This seems to be helping her lungs quite a bit.

She literally has 10-15 doctors, nurses, surgeons, and respiratory techs constantly thinking about her. They do the rounds at 9:30-10:00 every morning and one doctor has to combine and balance all the opinions and ideas. He, Dr. Mark Buchholz, is responsible for writing the orders this week. She has well over 100 years of experience helping her. As one doctor has said, theories are great, but it always comes down to how she reacts to these different things, i.e. different medicines, ventilators, procedures, etc.

Tomorrow is another day, you never know what is going to happen. But we hope and pray she continues to improve. Her lungs are the thing we are concentrating on. If they can heal another day or two, she can come off the ECMO. The heart surgeon has been very pleased with the way her heart has performed.

Wednesday, December 19, 2007

Where's Abby? - See if you can find the baby!

She had a stable day today. She is now on a vibrating ventilator which they hope will expand her left lung. Her right lung is pretty good now.

They might take her off ECMO tomorrow, or maybe Friday. That would be huge. It could be rocky though. So hopefully everything will be good.

There is so much information to absorb. We have to be prepared for anything. Abigail is so strong, we have to be strong for her. I can't believe this whole thing.

Tuesday, December 18, 2007

Today was not good. A lot happened. I'll try to keep it all straight.

They had to switch the ECMO circuit. That in itself went fine. About an hour afterwards, there was an emergency where the pump was stopping. She had to basically be "on her own" for a little bit. They had to bag her, which means manually blow air into her lungs. Her heart never stopped. She recovered and they said that, for some reason, the pump was sensing pressure against it. It was pumping blood into her heart and was getting pressure against it, so it turns off to prevent "an explosion." The good news was that when they were bagging her, her stats went up, which means that air was in her lungs. So, her lungs are inflated now, at least a little bit.

Then she had another surgery to clean out her chest. That in itself went well. They took one of her retractors out. Afterwards, her blood pressure dropped and the pump got clogged. This was another emergency. They had to clamp the pump off, and again she was on her own. She didn't do as well as before. They had to give her adrenaline. She does have an infection in the middle of her chest. They think that when they cleaned her out, they disturbed the bacteria (which grows on the plastic tubes in her chest) and showered her body with toxins. They also think that she might not be liking one of her 4 antibiotics too well. Again, she stabilized. They said she might just be getting used to the new ECMO circuit.

There are about 10 million variables that they have to think about and find the right balance for. She is so small, there is not a lot of room for error. This is an indescribable experience, it is a nightmare. I pray that she makes it through the night.

Monday, December 17, 2007

Abby had another "good" day. We spoke with the doctor this morning. He said the goal this week is to close her chest. They would like to be able to close her chest, switch the ECMO to her neck, and switch the entire circuit all at the same time. That would be ideal. I know that may not make much sense to people, but don't worry. It is very complicated and unless you are living it, there is no reason to know about this stuff.

She is peeing, which is awesome. They are very excited about her pee production. It means her kidneys are still working and she is able to pee out excess fluids.

We asked the doctor about her chances for survival. He said it was 50-50. I never thought I would be happy for my baby when her chances for survival goes up to 50%. That is what we are dealing with. We know she is a fighter, she has been fighting since the day she was born. I can't wait until she gets off the ECMO. That will be a major milestone.

Many thanks to everyone who has stopped by, sent cards, and left notes. We really are so overwhelmed by every one's generosity. We don't know how we can ever pay people back.

Sunday, December 16, 2007

Abigail was better than she was yesterday, so that is good. If Friday she was on the edge, now she is 2 feet away from the edge. Her color looked better and her puffiness went down a little. The oozing has stopped, which is great news. She is peeing too, so that means her kidneys are doing good. She can hear, so we continue to read her stories. They shifted the position of her head a little bit.

I am hopeful. I am thankful for every day.

There are so many things that can go wrong. She gets a ultrasound of her head every day. If there is blood in her brain, it is fatal because they would have to turn off the ECMO. They will have to switch out the ECMO machine sometime this week. This is a big deal because there will be about 45 seconds when she will have to "hold her breath" while they "plug in" the new machine. They have to switch the machine because there are clots in the lines. There is an arterial line in her right arm that is causing concern because it is affecting the circulation in her right hand. There is always a high risk for infection.

Saturday, December 15, 2007


Abby is in very critical condition. She is hour by hour, day to day. It is very complicated. She is receiving ECMO treatment. We can only hope that every day she gets a little bit better.

We really appreciate everyone who is praying. Please continue to do so.

I will not be able to update the blog everyday as I have done in the past.

Thursday, December 13, 2007

It was the night before surgery...


Here we go again. Hopefully this time everything goes as planned. They already switched her bed to the one that she will be in the PICU. We'll be heading to hospital early again. The first report of how she is doing is supposedly coming around 9:30.

Wednesday, December 12, 2007

Surgery delayed

Abby's surgery is delayed again until Friday. There are transporting another baby from Alaska that also has serious heart problems and has not received the quality of care that Abby has received. Even though we would like to get this over with, we completely understand. Good news is that Abby's stomach tube was taken out today and Dr. Baxter stopped her antibiotics, she was extremely fiesty and was looking around for a good hour. She had an eye doctor's appointment, everything looks good with the exception of a hemorage at the back of her left eye. The doctor stated that this is a normal occurance in premies and not to worry - they will check back in 2 weeks.

Tuesday, December 11, 2007

Abby is doing well!

Abby and I had a great day today, she seems to be back to her fiesty self. She did pull out her breathing tube this morning, but the awesome staff were able to stabilize her and get the tube back in. She also has an infection in her right eye, but no worries - it's pretty common with premies and she is on antibotics that will take care of it. Surgery is on for Thursday - we have not had confirmation of the time but I beleive it will be first thing in the morning.
Tomorrow we will have a special performance by a harpist for Abby. They are really big on musical therapy and it will be a great way to relax before the big day. Until tomorrow's update - have a great day!

Monday, December 10, 2007

Abby seemed to getting back to her old self tonight, which is a good thing. The rumor is that Thursday morning is the new day for the surgery. Nothing confirmed yet. We are all super tired.

The roller coaster continues...

The operation was postponed this morning. They found some blood in Abby's poop last night. This may be a sign of an infection in her gut. They are watching her closely, doing tests, and giving antibiotics. We have to wait and see how this evolves. It could be a fluke, in which case they could do the surgery in 2-3 days, or they could have to wait 10-14 days. If the infection is serious, one of the possibilities is that they would have to operate on her gut. It's called necrotizing enterocolitis. Read all about it: http://www.kidshealth.org/parent/medical/digestive/nec.html

I'd like to get off this ride now, please...

Sunday, December 9, 2007

The power of Grand Dad!


Tomorrow is the operation. She is the first operation of the morning. I think that everything is about as good as it can be. Dad and Heather held her today, and again, Heather gets the Poop Award.
We will be going to the hospital very early tomorrow morning, around 5:30. That way we can hold her, then walk her down to the operating room. Of course, we will let people know how things go.

Saturday, December 8, 2007



Abigail weighed 2490. She is sedated. When she gets agitated, her oxygen goes down and takes a long time to come back. Her oxygen needs go up and down, sometime its up to 50, 60, 70%, other times it's down to 20-30%.

We brought her the stocking that Nana made her. We also brought in a CD player with some kiddie music CDs. Dad and Heather put together her toy box and shelfing thing.

Friday, December 7, 2007

Be-Bop and Auntie!


Both Heather and Dad used their magical powers to soothe Abby today. When they held her, she relaxed, increased her oxygen, and lowered her heart rate. Heather got the Poop Award tonight.

Thursday, December 6, 2007

Abigail was pretty good tonight. She weighed 2420. Nothing major happened - she is just in a holding pattern until the surgery. She will probably get another blood transfusion tonight, so she will be nice and rosy for Pop-Pop and Aunt Heather tomorrow.

Wednesday, December 5, 2007

6 Weeks Old


We met the surgeon today, Dr. John Igabashain. He is everything you would want in a pediatric surgeon: soft spoken, deliberate, and confident. The surgery is 7:30am Monday morning, although it is possible it could be sooner, but not likely. It will take 5-6 hours. There will be a team of 10-12 people. We will have a nurse come out to us to give us hourly updates.

It seems that she is ready for the surgery. You can tell she really needs it. She is retaining more fluids. Her lungs have lots of secretions and she is more agitated.

I feel terrified. I mean, my baby girl is having open heart surgery. What more can you say? It's amazing to think that if she would have been born even just 25-30 years ago, she probably wouldn't have made it this far. And I know that if she doesn't have the surgery, she won't make it too much further either. But we can't get worked up about things we can't control. We will remain positive. She has done so well up to this point, there is no reason to think that things won't turn out just fine. This time next year, we will be taking her to the mall to get her picture taken with Santa.

Tuesday, December 4, 2007

We heard a rumor this morning that Abigail's surgery would be Monday 12/10. This seemed to be confirmed tonight by the staff. We got a tour of the PICU (Pediatric Intensive Care Unit), which is where she will spend at least 2 weeks (could be more) recovering from her surgery. Then she will be moved back down to the NICU to learn how to breast and bottle feed. In the PICU, there are 12 rooms. They are pretty nice.

The nurse tonight made a collage with pictures she had taken. She also gave us a book to read about heart surgery.

Last night, Abby excabated herself again. Hopefully, that will be the last time she does that. She got a bigger tube put in, so that should help.

Monday, December 3, 2007

We didn't hear anything from the surgeon today. We both got some kangaroo time today. Abby was very alert.
Jenn had a co worker meet us at the hospital. Iris brought us a really super home made chicken dinner with mac and cheese, green beans, and brownies for dessert. Iris also brought some people from her prayer group who said a nice prayer with us.

Sunday, December 2, 2007

Abby Cadabby


We had a really nice afternoon with Abby today. We got her a Abby Cadabby doll to put in her little bed. For those of you that don't know, Abby Cadabby is the newest character on Sesame Street and she is a three year old fairy that uses her magic for good.
Abby is starting to open her eyes for longer periods of time and looking around and focusing - especially on us, which is pretty awesome.
We also bought our first christmas tree yesterday - we will include a picture of it in the blog as soon as we get it set-up.

Happy Holidays!

Saturday, December 1, 2007

Dr. King did another echo this morning. The doctor told us that her ASD (atrial septal defect) closed up. Those are the upper 2 chambers. Now there is less mixing of the blood, which in Abby's case is not good. It's not a dire situation or anything, but it may cause her surgery to be pushed up sooner. Dr. King is going to talk to the surgeon, Dr. Ishabashin, on Monday to check his schedule.

But she is doing good. We read her Dr. Seuss books. She seems to like them . She really looks comfortable when we can hold her.

Friday, November 30, 2007

Abigail weighed 2350 tonight. That is over 5 pounds!!! Wowzers! She got another blood transfusion today, so that number could go down a little bit the next couple of days.
I also used my incredible powers of "relaxation" as I held her tonight so she could poop. She also is on room air.

Last night Abby was having a lot of secretions in her chest. The new ventilator hook up got loose as she was wiggling around and she basically extabated herself. Which means her ventilator tube came out. The nurses were quickly able to intabate her and nothing bad really happened. So she is back to the old way they had the ventilator hooked up.

We will soon have the exact day of the surgery, which will be in about 2 weeks.

Thursday, November 29, 2007

Before and After

Abby had a great day today. She weighed in at 2240 grams. Even though she is still on the ventilator - she had the taping on her mouth changed today from the full aparatus around her lips (first picture) to having the ventilator taped in between her nose and her mouth which will help with oral care and hopefully she will be able to use a pacifier. The tube coming out of her nose is her feeding tube. I also included a video that shows the production it takes for Greg and I to hold her -totally worth it. Her eye appointment went well - she has a follow up on December 12th. Still no definite date on the surgery. Hope everyone is well.



video

Wednesday, November 28, 2007

Last night - I got to do some kangaroo care, which was very relaxing. Tonight, I am not feeling well, so decided to stay home just to be on the safe side.

Also last night, Abby had the biggest most continuous poop ever. Three diapers full!!! Oh, and the smell was god awful. Its all the medicine and extra stuff they put in the breast milk. It was pretty awesome!

I had a person from my insurance company call me today. Everything is fine with the insurance stuff, so don't worry about that. She told me that the cost Abigail's care had reached over $214,000!!!! That's for 35 days in the NICU. Pretty unbelievable.

Tuesday, November 27, 2007

Abby in Yellow - Nana's favorite color!



Abby had a very good day today. We did Kangaroo Care (skin to skin) for 2 hours and we both fell asleep. She had an extra dose of laciks (sp?)yesterday since she was retaining quite a bit of fluid - with the ventilator even though it helps her breath and takes stress off her heart -it creates quite a bit of mucus and secretion which needs to be manually cleaned. The laciks helped her get rid of a lot of the fluid in her lungs which is a very good thing. She did weigh in at 2190 but Dr. Baxter wants to see how things play out at the end of the week with the blood transfusion and the extra dose of medicine before we call an accurate weight. Tomorrow she has her first eye exam. Hope everyone is well.

Monday, November 26, 2007

Jenn got to hold Abby tonight. She did really good. This morning, Abby's breathing wasn't too great, but stabilized nicely by the time we got there tonight.

We got the special medal from the Latchfords' and said the prayer. We appreciate all the help.

Sunday, November 25, 2007

A Note from Mom

Hi all! Abby had a good day today, she now weighs in at a hefty 2160 - however she did have a blood transfusion this morning so the weight may go down tomorrow. Greg held her this evening and I read her some Dr. Seuss books and her favorite, The Princess Bride. When I come in the morning, the nurses joke that 12:00 is story time and enjoy listening to us read to her.
Even though this has been the hardest experience - I can't say enough how blessed Greg and I feel for everyones' support, thought and love. Please continue the positive vibes. Love you all, Jenn.

Saturday, November 24, 2007

So Big!

Abigail is 1 month old today. She weighed 2020!!! She is really changing almost every day.
There was a harpist playing in the NICU today for some of the babies, so that was very soothing.

Friday, November 23, 2007

Abby had a much better day today. She seemed to be recovered from all the action yesterday. Jenn and I both got to hold her for an hour today. She pooped a big one while I held her, so that is always awesome. She just gets so relaxed!

We spoke with Dr. Nuemann. She stated that Dr. King is shooting for having the entire corrective operation in 3 weeks, around the middle of December. Abby could have the operation sooner if something unexpected comes up. She will probably have another blood transfusion soon. She doesn't have any infections, which is important. She still weighed 1910. Her pH levels were a little different than before, nothing major though. Dr. Nuemann said that if everything goes well, then January is not out of the question as a time for Abigail to come home.

Thursday, November 22, 2007

HAPPY THANKSGIVING!


Abby had to be put back on the ventilator. They expect her to be on the ventilator until her surgery. Sounds like her surgery will be sooner, rather than later.
We had a great time at Tim and Pams' for dinner. A lot of people are all organizing a fund raiser for Abigail. It was really overwhelming. We were shocked by their generosity.
Today didn't start good, but ended awesome.
I am leaving stuff out, much too emotional...

Wednesday, November 21, 2007

4 Weeks old!

Abigail had a good night. She weighed 1910. She didn't poop, so there will probably be a big blowout tonight and she will lose a little bit of the weight. They give her iron to help her red blood count, but we confirmed with the nurse that a side effect was constipation.
We dressed her in her froggy outfit. It's a little big, but supercute.
We went to a group meeting called Precious Beginnings at the hospital tonight. They served pizza. The group leader was a guy from England. (He also happened to go to the University of Exeter) He brought his son who was now 12. His son was born at the hospital at 24 weeks, 1 lb. 6 ounces. It was cool. The only other people there were the ones who have the little girl Kira, right next to Abigail. They are very nice and we had a nice talk with them.

Tuesday, November 20, 2007

I got to hold Abby tonight which was good. She weighed 1850! She was sucking on her pacifier for a little bit while i held her. Her little nails are growing long. They don't recommend cutting them because of the risk of infection. She will probably have to wear little mittens soon.
Jenn said that she had some spells during the day and previous night. The nurses said that she hadn't pooped in a while, so they gave her a suppository. She had a huge blowout, and that seemed to help her breathing. They think that her straining was affecting her oxygen levels. They said they will give her another suppository tonight.
We got the first bill from the doctors. It was only about $14,000. The doctors that treat Abigail are not hospital employees, but work for a physicians group. We haven't gotten the hospital or the cardiologist bill yet.

Monday, November 19, 2007

Abby weighed 1800 grams. That is almost 4 pounds. She will get another chest x ray today, I think. The nurse said she had a little "spell" this morning, but nothing major. She is on 30% oxygen. Overall, she is doing fine.

We put together the crib last night, which looks awesome. As well as our new bench for our entrance way, a new coffee and end table, and our new recliner. Lots of boxes.

We are looking forward to the shortened work week.

Saturday, November 17, 2007


We were there this afternoon when Dr. King did the echo. He said everything pretty much looked the same. He said as long as she keeps gaining weight without any complications we can expect something to happen when she weighs between 2000 and 2500 grams. If something does happen, then surgery could be sooner.
Abby is so funny. She really likes to stretch and "ruch" around.
Grandma flys back tonight. We aren't going to the hospital tonight. We decided to take Saturday nights off.

Friday, November 16, 2007


Abby weighed 1770 grams. She is doing a very good job. I got to hold her tonight! She is still on the cpap and doing pretty good. Jenn said the doctor was pleased with her overall condition right now.

Dr. King is going to do an another echo cardiogram sometime this weekend.

Grandma goes back home tomorrow, so Abby will miss her very much.

Thursday, November 15, 2007

Abby weighed 1730 grams. She looked really good. We didn't get to hold her. She is still on cpap.

Wednesday, November 14, 2007

3 Weeks Old!


Abigail was taken off the ventilator today. She is back on the cpap. (which is great progress.) We'll see how she does tonight. If she has any problems, they will put her back on the ventilator.

She really does look beautiful when you can see her without all those things in her nose and her mouth. The pictures don't do her justice at all.

She was sucking on her pacifier a little bit tonight too. It was so funny, she was smacking her lips together.

We weren't able to hold her today, since she had quite a busy day, so hopefully tomorrow.

Tuesday, November 13, 2007

Abigail's Room

The border was put up by Grandma and Jenn. Great Job!

Monday, November 12, 2007

I was feeling sick and exhausted, so I stayed home today.

Jenn said that Abby is doing well. She sucked her thumb for a little bit today. They are going to give her a blood transfusion in order to increase her red blood cell count. She continues to gain weight, up to 1650 grams last night.

Jenn said that Abigail's facial features are developing and she is looking more and more like a baby. She definitely has Jenn's nose.

Sunday, November 11, 2007

Three Generations!


Grandma held Abby for over an hour today. Both did really well!!!

Abigail weighed 1610 grams last night, so that is good. Things are progressing nicely. Not much is going on right now with her health. She just needs to continue to gain weight and get big!!!

Saturday, November 10, 2007

We met with Dr. King last night. It's always interesting speaking with him. He gives a lot of information. There are many options. Each has their advantages and disadvantages. Basically, right now they are going to wait and hope she continues to grow without any major setbacks. He wants her to grow about half an ounce a day. When she is about 2000 grams - or 4.5 pounds - they feel comfortable doing the entire corrective surgery. That could happen in about 33 days. Depending on a wide range of issues that could come up - she still might have to have the pulmonary band, but now they are leaning away from that, as that has a host of possible complications. He didn't know how long the recovery time would be.

We had the chaplain come by last night and give Abby a blessing, so that was nice.

Nana is going back home today and Grandma is flying in. Nana has done a terrific job helping out this week. She has cooked us a ton of food and painted Abigail's room- which looks great by the way!

Friday, November 9, 2007

Abby had a relaxing night. We didn't get to hold her because they wanted her to continue to rest. I read her some stories and held her hand.

Dr. King will speak with us today. He has a conference with the surgeons every Thursday where they discuss all their cases.

She is still on the ventilator, but the nurse said they didn't expect her to be on that for a long time, so we will see.

Wednesday, November 7, 2007

Abigail was not consistently taking breaths tonight. So they had to intabate her. That means she is now on a ventilator. There is a tube down her trachea. The machine was not providing any extra oxygen, just doing all the work of physically breathing. We were there when they had to do it. They said that parents shouldn't watch their child get intabated, so we didn't see it happen.

They are going to check for infections, check her blood gas levels, and took another chest xray. That's all we know right now.
This website has a lot of good information:

http://www.aboutkidshealth.ca/PrematureBabies/About-Premature-Babies.aspx?articleID=7887&categoryID=PI-nh1

Emotions

Life in the NICU is often one of intense and conflicting emotions. The combination of stress, fear of the unknown, worry for your baby, and many other considerations can be overwhelming at times. Parents often liken it to an emotional roller coaster ride, with some days being exhilarating and others despairing.
The progress of your baby plays the central part. Some days, your baby will be growing and progressing and just when you think everything is finally all right, she may have a setback. Conversely, some babies may suddenly turn around for the better when the expectation was poor. These types of events frequently trigger emotional highs and lows that change from day to day.
Even with the prospect of a happy and healthy outcome, parents often feel a sense of loss during the first days in the NICU. Though the baby might be doing fine, her mother and father must come to terms with the fact that however they imagined the birth and the arrival of a new baby, something else entirely has happened. Family and friends often don’t know how to react either, which reinforces parents’ sense of loss. For example, it may be many weeks before someone says “congratulations” even though you’ve just had a baby.

Guilt

Many parents, especially mothers, feel a sense of guilt; they imagine that they have done something to create this situation. The reality is parents have little control over the events that lead them to the NICU. In general, guilt is not a particularly useful emotion and often becomes a barrier to positive behaviours and thoughts. Do whatever you need to do to shed the guilt. If there is some connection between a parents behaviour and the outcome of their baby, dwelling on it will not change what has happened nor help the baby recover.
Sometimes, parents are reluctant to bond with their baby in the NICU; they fear getting close to their child who may not live. With the intense emotions and dashed expectations, the thought of bonding emotionally to their child with the possibility that the bond will be taken away can be fearful for parents, especially at first. Parents usually get over this fear, perhaps with encouragement, but then have to get over the guilt of not immediately investing emotionally in their child.
Fathers often feel guilty about their feelings of weakness and fear because, as culture dictates, they are supposed to be strong and be a pillar of strength for the rest of the family. In the NICU, with a sick baby, a wife who has just gone through labour and may be ill herself, family responsibilities to uphold, and financial pressures, many men have difficulties in fulfilling all these roles on behalf of everyone all the time. Experiencing this may cause guilt.

Practical matters

While parents and babies settle into life in the NICU, life goes on in the outside world and a balancing game begins: how much time can we afford to spend with our child? While parents are encouraged to spend as much time as they can with their baby, this should not be done by neglecting the rest of the family or their own peace of mind. Even though you naturally want to stay in the NICU as much as possible, you should get out at least occasionally going for a walk, getting some air, and clearing your head. Finding a balance between commitments in and outside the NICU can be difficult. Parents should speak with the staff and seek help when they need it.
These types of issues can be compounded when the NICU is far from the family home, perhaps even in another city. Parents find themselves torn, with one parent always at the NICU and the other running around trying to maintain an income and keep the rest of the family going, all the time worrying about what is going on with their child and their spouse.

Coping

In the NICU, the over-riding concern for parents is their baby’s condition. As they become more familiar with the routines and setting of the NICU, parents often feel a desire to “do something” to help.
While much of what goes on in the NICU is out of their hands, parents can focus on several things. They can learn about their child’s condition and the treatments and procedures that apply to the best of their ability. Health care professionals can help in this regard as well. Becoming informed is a positive development which can increase the communication between a parent and the team in the NICU. Having a better idea of what is going on can improve your peace of mind and reduce the sense of helplessness that parents often feel in the NICU.
At the same time, focussing entirely on the details and the numbers does not necessarily contribute to an improved understanding of what is going on. Some parents begin to pay attention to the incredible amount of detailed information that the various machines are giving and may become fixated with the numbers. Interpreting numbers is not as simple as it may seem. Indicators can fluctuate naturally from day to day or even minute to minute. Most of these fluctuations are not an indication that something has suddenly and dramatically improved or become worse. Parents should focus as much as possible on the longer view and soak up the positive aspects of what is going on as much as possible.
Additionally, parents should do what they can to make their baby as comfortable and welcome as possible. This can mean many things; parents can whisper to or gently touch their baby. At some point “kangaroo care,” which is a skin-to-skin holding of the baby, will be possible, as will breastfeeding.
Beyond the baby, parents should also make efforts to remain connected with other members of the family.

Tuesday, November 6, 2007

I had an ok night with Abby. I just want to take her home and hold her without all the tubes and wires and nurses and alarms and breathing bags and bubbling machines.

She gained more weight. She is up to 1520 grams. The nurse this morning said that the goal is to get her to 2500 grams, which is about 5.5 lbs. Then she can have her operation.

They didn't try to take her off the cpap today, they said maybe tomorrow.

Watch out for Bigfoot!


Monday, November 5, 2007

I went back to work today.

Today Jenn said that Abby pulled out her feeding tube! She is so strong! The nurses said that she was trying to share with her stuffed animals. That got her a bath and all new bedding.

She has a little crack on her butt (no pun intended) that was bleeding a little bit. So they are going to continue to air dry her bottom.

Tomorrow they are going to take her off the cpap. It's kind of a test, they want to see how well she does. She is pulling at the tubes, so they don't want her expending energy grabbing at the thing. But, on the other side, she has to be able to maintain her oxygen levels. So we will see what happens.

Sunday, November 4, 2007

Cute Little Butt


Abby did a great job this morning. She spent over an hour with Jenn holding her without any drops in her oxygen levels. She really likes to stretch and kick her legs. She could be a pretty good swimmer. (Wonder who she got that from?)

She has a little diaper rash on her butt, but that is clearing up. The doctor decided to not prick her to take any blood today to give her a rest. Tomorrow they will do a bunch of blood work. She is pooping a lot, so that is always good. Her weight is on an upward trend too.

Saturday, November 3, 2007

Friday, November 2, 2007

Abby is back up to her birth weight - 3 lbs 3 ounces. So that is good.

She has to go back under the lights for a little bit.

I have to go back to work on Monday so we will see how that goes.

Abby is very excited that her Nana is coming out to visit tomorrow.

Thursday, November 1, 2007

"You need to have a thick skin"

We spoke with Dr. Nuemann (neonatologist) and Dr. King this morning. Abby is doing well. The C-Pap is helping her. It actually helps her because now she doesn't have to burn extra calories trying to breath. The doctor said that in the long run, this is relatively minor, and that the road ahead will be more difficult.

First some good news: she is off the "tanning" lights and they don't think she has any infections.

The following may seem confusing, because none of us are cardiologists.

When babies are born, the blood pressure in the lungs is very high, due to the fact that, in utero, we get oxygen from the Mom. After birth, the blood pressure slowly lowers in all babies. This is happening to Abigail. Except in her case, this "normal" occurrence is having negative consequences due to her unique anatomy.

Due to 1 part of her heart defects, (double outlet of the right ventricle) too much blood is going to her lungs. This causes her lungs to fill with fluids and prevents breathing. Most likely, Abby will need to get a band put around her pulmonary artery. That is the artery that sends blood to the lungs. The band would constrict the flow to her lungs. The doctor said there is a good chance her breathing will continue to deteriorate, and eventually she would need a ventilator. At that point, she would have the band put on the artery. From a cardiac surgeon's perspective, putting a band on is a piece of cake.

All of this is a big question mark at this point. If she continues to do OK and to gain weight on the C-pap, then the band won't be needed. She may need to increase the C-pap and have supplemental oxygen. We just have to wait and see. We really don't know when any of this will happen.

Wednesday, October 31, 2007

Just got a call from Dr. Baxter. She is one of the doctors in the NICU.

They had to put Abby back on the C-PAP (at least for 2 days). Apparently, her breathing took a little dip this afternoon. She was getting the "apnea" a little bit more.

They also took a blood culture to check Abby's white blood cell count. They want to check for any bacterial infections. They started her on antibiotics, just in case.

Hopefully, this will be no big deal. They tend to overdo treatments at first, then pull back from things that she doesn't need.

Happy Halloween!


One week old!!

We all had a good morning. We each had over an hour of kangaroo time. That's what the skin to skin contact is called. While I was holding her today, she peed on me!! So that was the first time for that one! It was pretty awesome!!

Today is Abby's one week birthday. We gave her little pink Air Jordan socks.

The chest x rays looked almost the same as the ones they took before, so that is good. The doctor said she is thinking they can take out the picc thing in her leg. That would be good too. They don't think she will need that medicine to keep that PDA open.

Just out of curiosity, we asked the doctor how much a day in the NICU costs. Just for the bed time (which is 24/7 emergency nursing care) its a "couple of grand." I've heard it's more like $3000. But, if you break that down, it's only $125.00 per hour. That actually doesn't seem too bad, considering the amount of care she actually receives. Plus, add on top of all that the cardiology stuff that Abby gets. I'm glad I have insurance. And yes, all the doctors have been confirmed to be covered by my insurance.

Tuesday, October 30, 2007

She Blinks!

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Abigail is doing ok. She has some bouts of rapid breathing and her oxygen "sats" (saturation levels) are sightly lower. They were in the mid 90's, today they were in the upper 80's. Its a slight dip that everyone is monitoring. It's not a big deal right now. She will be given a diuretic to help lower her fluid levels. That will ease any undue strain on her heart and lungs. Tomorrow she will get a chest xray to check the size of her heart and to see how her lungs look. She is doing so good. You can tell she is really trying hard to get better. She has to work a little harder to compensate for all the "mixing" going on in her heart. Her heart has many holes and some major plumbing issues, so she has to try harder to get oxygenated blood around her body.

Last night was rough. It really is a roller coaster. I notice there is a constant feeling of fatigue, stress, anxiety, etc. in the background. It's like an undercurrent. You can build a wall to keep it out, but it just builds up, then it just hits you. Holding Abby and remembering that she will come home one day helps a lot.

I realized this is the first week I haven't been on the road in over 6 weeks. I don't really ever want to go back on road. I will have to travel a little bit. So that will be hard.

Jenn has been a pumping machine!! So that is going very well. She has been great through out all this.

Abigail is so beautiful. We love her very much.

PS - Abby passed her first hearing test.

Monday, October 29, 2007

Stretching Out

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Boring is Good!

This is going to be a long process. In the world of the NICU: no news, is good news. Abby was still under the lights. We held her for a long time today (I think over an hour).

Our friend from college, Dawn and her family, came to visit yesterday. They have a 2 1/2 year old daughter named Gabby. So that will be cool!

Abby weighs 3 pounds now.

Sunday, October 28, 2007

Abby's "Maggie from the Simpson's" Impression

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Sleeping Beauty



This pictures shows Abby sleeping with her little bow in her hair and her sunglasses. The nurse during the day put that on her. It's not really that dark around her, it's just that her "tanning" light is so bright around her. That brown and pink blanket is the hospital's.

There are over 100 nurses on staff in the NICU, so every time so far, the nurse has been different. Which is cool because they all have their own styles, experiences, and personalities. They all tell you a little different bit of information. Tonight the nurse, Janna, told us she used to work in pediatrics and saw lots of kids with heart problems. She was amazed with how strong Abby was. She said for all the problems her heart has, that her little body has compensated these for these defects and is doing fine. Hopefully, she'll be off the lights tomorrow. The nurse had also taken a tour of Lancaster county and loved the Amish! She said she would be on for the next few nights, so we will see her again.

I think I heard that the nurses can pick what pair of kids they get. It's always 1 nurse for 2 kids. They pair up one kid that is easy, with one that has more "needs." Abby is the "easy" one in her pair.

Abby "drinks" 180ml a day of milk. Jenn made over 360ml today. (Hey, remember, she's a Lancaster county girl!)

As soon as I walked in, the first thing the nurse said was that Abby looked like her Daddy.
Abby got her cannula taken out last night. So she is completely breathing on her own. This is great news!! The doctors are really happy with her progression.

She's been pooping too! We were in the middle of changing her when she let one loose. It's still that black tar stuff.

Jenn and I both got some "skin" time today, so that is always a treat. She is still under the lights, but that is getting better too. She probably won't have to be under the lights for much longer.

Abigail's course of action is: gain weight, then have her heart operation, then come home. We don't really know when exactly all that will happen. It looks like it will be sometime early next year before she'll be able to finally come home.

The nurse said that once babies start the weight gain process, they put on 1-2 ounces a day on average.

Dr. King (our pediatric cardiologist) said that her PDA hasn't closed all the way yet, so he still didn't know if she will need the medicine, PGE, to keep it open.

We go to her morning changing at 8, then stay for the 12. In between, we get coffee in the Atrium at the Heartbeat Cafe. It's our new favorite hangout. Yesterday, the hospital held a New Home Buying Fair for the public in the Atrium. Then we come home, and either relax or do chores and run errands. After dinner, we go back to say goodnight at her 8pm changing.

Eyes Wide Open


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Saturday, October 27, 2007

We had a good visit this morning. I got to hold her for about an hour. It was so relaxing. We really took a nice nap together. She is so cute! Jenn thinks she looks like me.

She has light blond hair. They gave us a little comb and brush so we brushed her hair today.

Medically, she is doing fine. They are weening her off the oxygen slowly by reducing the flow that she gets by a little bit each day. She gets echo cardiograms every other day. The doctors say things are progressing fine.

They put the picc thing in her leg. That is like a permanent IV. She gets constant food now. Jenn is "pumping it up," so that is great for Abby.

Last night was rough, (I only called twice to check on her) but seeing her this morning really helped. The hospital is super nice. The people and facilities are top notch. We couldn't be happier with the level of care. The nurses are very supportive, always explain things, and answer all our questions.

First Skin to Skin Contact for Dad


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This is the first time I really got to hold her.

Friday, October 26, 2007

She looks a lot better than she did yesterday. She got off that C Pap thing. She doesn't have that blue and white tube thing. Or that thing on her nose any more. She just has a nasal cannula. She breathes on her own. Room level oxygen.

Her incubator costs about $40,000. It regulates her temperature automatically and weighs her. She likes to lay on her back. She lays back and gets a tan with her little "sunglasses."

We can go in to see her anytime. Usually we go every 3 hours. 8, 11, 2, 5, 8, etc.

The NICU closes between 7-8am and 7-8pm for the shift change. Only 3 visitors allowed at one time and you can't be showing any symptoms of being sick!

We change her diaper and take her temp. She doesn't like the thermometer so much. She poops and pees.

I think she has my mouth and she definitely has Jenn's feet. We got her footprint certificate. It was funny to see her one little toe.

She gets Jenn's milk from a tube to through her mouth down to her tummy. So she still gets the good stuff.

She really just has to grow big and strong. Then she can have her heart operation.

Coming Home without Abigail

Tonight was kind of weird.
It is sinking in that we have a daughter who doesn't live with us. And wont be living here for at least a little while.
Hello - we leave the hospital today. Abby tried to suck her thumb today. She couldn't quite do it yet though. Jenn got to hold her against her chest for some skin to skin contact for about an hour. I get to do it tomorrow.