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.

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


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:


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.


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.


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.