Happy Anniversary?!

So yesturday, April 28th was one year since I first heard the words Congenital Diaphragmatic Hernia. And I had just started to grasp how much they would effect our lives. I remember that day so vivoidly, like it was yesturday. I can even remember the outfit I was wearing.

So to make the day a happy one and to celebrate that Madelyn is 8 months old, we had a little three generation shopping trip. Madelyn and I, picked up my Mom and we hit the local stores for the morning. Madelyn slept through most of it, but she was great.

These are some of the thought I had as I rocked her to sleep last night.
1 in 2500 births have CDH.
About 50 % survive.
Madelyn kicked CDH in it's butt!
I can't believe we both survived this last year.
I wish that more babies would survive, because to many parents go home with empty arms.
God has been faithful to us and He has shone His face down upon us.

Guess Who's Sitting!

That right you guessed it, Madelyn!

Well I guess who else would it be. Just in the last four days Madelyn was getting so much better and today she didn't loose her balance everytime she lead over to pick up a toy. I am so happy to see progress because I know the physiotherapist was so concerned that she was now up to her age in the gross motor skill area.

On another note, Madelyn got her first tooth poking through on Friday. It's so cute, and razor sharp. More are on the way, as today was not a good day for her. I actually put her in the car and went for a drive to get her to fall asleep this afternoon. I just didn't know what else to do.

Here's to hoping tomorrow is a better day for my sweetheart.

Cheers!

Progress....

So Madelyn is still not sitting my herself. Most people just tell me that she will etc. Her appointment last week Wednesday at the Newborn Follow-up clinic was eye opening. The physiotherapist saw what was wrong. She told me how to excerise Madelyn core muscles. I have been doing it multiple times a day since. Early this morning I saw some progress. Madelyn actually put down her hand to lean on and steady herself. I was so excited to see all this work was getting somewhere. So maybe, just maybe she will progress to the next level soon. So, here is to hoping for the best!

Cheers!

Just Hanging Out Together

I had a great time with Madelyn today. Every day as she get older, I get to know her personality better. I think she is great! She is funny, giggly, and very thoughtful. After I had put her to bed for the night, I couldn't resist just standing there at her crib. Remembering all the hours we sat in NICU. Now, here she is sleeping peacefully in her crib. It's so hard to believe that it was only a few short months ago that we didn't know if she would live. This feeling of contentment is great, God has been good to us. Praise the Lord!

Newborn Follow-Up Appointment

The New Born Follow-Up program looks at all the babies that had a lengthy stay at the NICU and/or IMCN. Madelyn having been there for 35 days falls into this catagory. Her appointment was on Wednesday morning at 11. Carl contemplated not coming to this appointment since we didn't think it would really be a big deal. But since he has come to all the other appointments I think he was having some "Daddy Guilt" and decided that he might as well go. I was really glad he did. The appointment was long and very involved.

The appointment is well organized and they realize how babies like to work. Only one person is in the room at a time, the others involved in the exam observe from a one way mirror. Madelyn did very well with all her fine motor skills. I let them know from the begining that she still is not sitting on her own. No one else seemed to care in the last week, (public health nurse and Dr. Carson.) But to them it did, and I was so greatful. Madelyn was starting to want to sit at six months, she is now 7.5 months and she is just not progressing further. The physiotherapist showed me a few excersizes I can do with her to help strengthen her core/abdomenal muscles. And then she will referred to the physiotherapist at BTHC to follow up.

Everything was assessed in this appointment from, basic hearing and vision, fine and gross motor skills, plus I got to ask all my silly little questions that I have stuck in the back of my mind. Madelyn will be seen again in a year, or sooner if I have any concerns. I left feeling well taken care of.

Carl and I felt like reminising on old times so we went to the cafeteria for lunch. We had many a lunch, supper, and late night coffee there. Now we get to do it with Madelyn.

After lunch Carl and I stopped by NICU for a happy visit. We met Dr. Wiseman in the hall with his resident physician. He is just an amazing man. Doris the nurse clinician that ran the parent support meetings was there and super excited to see Madelyn doing so well. I chatted with a few nurses that cared for Madelyn while she was in NICU.

On a another note, Doris the nurse clinician, also organizes the grand rounds for the nurses. On May 14th they are focusing on diaphragmatic hernias, and how nurses play a roll. I almost jumped at the chance to showcase Madelyn. We had excellent nurses from fetal assessment until the day Madelyn was discharged.

Since I had never heard of CDH until the day of my ultra sound on April 28/08, I have found a passion about telling people Madelyn's story to spread more awareness for this birth defect. This is a great opportunity for me to follow through on that passion.

Some Bunny Loves You

Happy Easter! Okay, I know it's a bit late but better late than never. I had a little "Easter Bunny" visit me. I had some trouble getting a good picture. Here are few of my attempts.

The action shot in the Exersaucer.

Leather chairs are slippery when you wear fur on your entire body.

Some Bunny Loves you! Okay, not the best picture but Madelyn always has that quizical look when trying to take a picture.

So before you get on your "soap box" and start to think that bunnies are not what Easter is all about, I have not forgotten the real meaning of Easter and how God sent His Son to die on the cross for all of us. A gift for everyone who wants to believe.

I can't but help to think of two parallels in the Easter story this year. The first is that Manitoba residents have universal healthcare. (Madeln's hospital fees would have reached well over half a million dollars.) Free to all who register themselves with the Manitoba Health and Healthly Living office in Winnipeg. Yet some people just won't take that simple step to register themselves. They have this assumption that if they live here they should automatically receive free health care because they pay their taxes. (Just ask anyone that works in medical billing.)

We all need to have our name registered in the book of "lambs" to get the free gift of eternal life! Just living a good life doesn't give you a free pass to eternity in heaven.

The second parallel I think of is Barabbas. Now if you are familiar with the Easter story, you will know that Pilot gave the Jews a choice between crusifing Barabbas or Jesus. Barabbas was set free, I wonder how he felt. His life was spared so that Jesus could save all of us. So Barabbas could be saved by Jesus in his earthly life, and if he choose too, he could have been saved by Jesus in his spiritual life.

God saved Madelyn from dying in those first few days, and weeks of her life. He gave her the strength to fight and survive CDH. Now she too, if she chooses to believe, be saved and live with Jesus forever in heaven.

Deep thoughts by Karen; I know.

Mischief.....A sign of what is yet to come.

After nap time the other day. This is what I found. I can't help but wonder if this is what I have in store from her. I find myself wondering what kind of personality she will have. Some days I think she will be a little firecracker, stubborn and slightly demanding. Other days, she is so quiet, thoughtful and content. She is obviously a fighter, a survivour of CDH, and a zest for life.

What Changes In A Day?

So, I really don't know what happened from one day to the next but Madelyn is doing great! On Wednesday we went to see Dr. Carson and she is doing well. (See last post.) On Thursday Madelyn had her six month immunization shots (we are one month behind due to a 35 day hospital stay.) And she was just bigger all around. Her weight was up to 15 pds. And her hieght is 28 inches. I am going to have to get a different car seat in three inches. I can't believe this. She is now in the 95th percentile in height! Now if you saw Carl and I, we are both short people. The only place there is any hieght is from my Dad at six feet tall.

Here are the two of them together. Grandpa is like her best friend. She is always happy to see him. I no longer have any grandparents and love the fact that she has such a great relationship with him already.

Check Up No. 12563? Okay, maybe not that many...

Today we packed up Madelyn and made the hour and a half trip into Winnipeg to see Dr. Carson ....again. I don't mean to say we didn't want to go see Dr. Carson. He is the best Paediatrician around. Everyone in the medical field loves him. All the NICU nurses thought he was the best and so does my family doctor. The thing is that we have been seeing Dr. Carson so often. First it was every two weeks, then every four weeks, now we hadn't seen him for over eight weeks. I liked not having to make the trip in to see yet another doctor, This is just life with a CDH baby. I packed up Madelyn and we picked up Carl at work at 9:30. Highway 75 was closed due to potential flooding from the Red River so there was a huge amount of extra truck traffic on highway 3. But we still made it on time.

I expressed my concerns that I thought Madelyn was developing Pectus. Pectus happens in CDH babies sometimes because the chest at birth is barrel shaped, or larger that usuall due to all the added organs in the chest cavity. After surgery the stomach, intestines, and spleen are moved back to the abdomen and the sternum can fall, or sink inward. Dr. Carson agreed that her chest was slightly cupped, but not yet a Pectus. He stated that Pectus can form at anytime and there are various degrees to it, and can become larger as she grows. I'm not sure what to make of this. My anxieties are not yet settled on that subject. I pray that it won't get any worse. It really is only a cosmetic problem, and does hurt or cause breathing issues. But doesn't every woman already have body image issues, and I want her to love herself and her body.

Madelyn's wieght is up. She is now 14pds and 15ozs. She gained about two pounds since our last visit. This was great news for me. I would really like to stop mixing her formula at 1.1 cal/ml. But apparently that won't happen. Madelyn started life at the 20th percentile and she now is somewhere between the 10th and 20th percentile. The hope is that she will return to her 20th percentile curve. Maybe at her one year check up in August.

Madelyn's other measurements are:
Head - 15th percentile
Length - 75th percentile (very odd since Carl and I are both short)
Weight - 15th percentile

The good news is that Madelyn is doing so well, that she will probably not qualify for RSV shots next winter! RSV season is almost over and I am waiting to go out and enjoy taking Madelyn with me.

Lunch Time

Feeding Madelyn has always been a problem. Being a CDH baby I was told to expect this. While I was still pregnant I had a consultation with her surgeon Dr. Wiseman, he told me that really his part of doing the surgery was not that big a deal, the real problem with CDH babies is their feeds. And wow, was he ever right.
Madelyn has been on a mix of formula mixed with breast milk since NICU. Plain breast milk and formula is the same at .61 kcal/cc. She started off at .81kcal/cc to gain some weight back that she had lost due to surgery and being very sick. As the weeks went by she consumed less and less and the calorie intake had to be increased. She went from .81kcal/cc to .91 to 1.0 and now for the last four months at 1.1 kcal/cc. I felt like a chemisit when preparing bottles for the day. First I would express my breastmilk, freezing some and using fresh for feeding. I would then measure and add formula accordingly. And all of Madelyn's intake had to be journaled to monitor her daily calorie intake.
The problem also was that being on a ventilator from the moment you are born takes away the desire to suck and the enjoyment of having your food orally. When we got Madelyn home I was desparate to leave the bad feelings of having a sick baby behind. I was not really prepared to have a baby that didn't want to eat. For many years of my life I have struggled with weight and watching what I ate. Now I have a child that doesn't want to eat. This is a complete foreign concept to me.
I expressed my frustration one day to my Public Health Nurse. She told me to hang in there and that eventually her stomach would grow. So in the mean time I have been trying everything to get food into her.
I was given these interesting mess bags with a handle. You put food inside and your baby can enjoy whole foods without the risk of choking. Well they worked great for Madelyn. She doesn't have to put anything to far in her mouth, yet she still gets the banana. They make an awful mess, but when your baby only wants to eat bananas and in this form, I will wash 100 loads of laundry for her to take in the extra calories. Here she is below.


I also was told to make meal time a fun time. So I strip Madelyn down to her diaper for every meal and let her play with her food and her spoon. All in the hopes that some would land up in her mouth. This too was a lot of work, but it has paid off. Just these past two days. Madelyn has allowed me to feed her! I have been so happy. Not everyone knows the joy of having a baby go from not eating to wanting to eat. I actually look forward to meal time!
Feeding has been going so well that when she is in her excersaucer I put puffed wheat in her snack tray and she puts it in her mouth! I get so excitied and dance around the kitchen, she is so proud of herself.

Everyday Life

Madelyn is seven months now and I really want it to be spring. So we had a little photo shoot in our livingroom.

The lighting is off in this picture, but I thought it was sweet.

Madelyn is trying to crawl, the cat as you can see is getting nervous about the whole thing.

My little princess is just having a great time with all her toys.

Madelyn has been sucking on her toes now for about a month and a half. I think it's hillarious!

What's New?

I haven't posted in a long time. Baby dedication was on Feb 22. I was terrified that Madelyn would freak out and cry or spit up on Pastor Loren. But she was a doll. She chewed her teething ring happily and was as cute as a button. I have the best baby ever!

Here is a better picture of my eternally happy baby. She is always ready to flash me a smile, and show off her big blue eyes.



On another note. March 31st was Congenital Diaphragmatic Hernia Awareness Day in the US. Breath of Hope has done alot of work to raise awareness for the birth defect and yesturday the Children's Hospital in St. Louis announced they are doing more research. Check out this link.
http://www.ksdk.com/news/local/story.aspx?storyid=171206&catid=3
P.S. Thanks Sofie's Mom for being on all the up and up.