Christmas Time Is Here Again

This is our Christmas card this year. It was just a random picture we took on our yard in late October. But since we didn't get snow until December 1st this year I thought it was okay to have green grass on a Christmas picture. Merry Christmas to all of you that I won't see before the Christamas season is over.

I am very excited for this Christmas season. I was just thinking a year ago and how busy it was for us. We had to many get togethers scheduled to close together. I was still pumping breast milk every three to six hours. And Madelyn's feedings were so particular. Inbetween all the wrapping paper and eating of turkey I was pumping, adding formula powder following a special reciepe, making bottles, breast feeding, and trying not to cry every half hour because I was so thankful to God for giving us the best Christmas gift since salvation......Madelyn.

That leads me to the next topic. How life has changed for Carl and I since we have had a child. Holidays are much more enjoyable for me since no one really asks about us having a baby anymore. How that is such an insenstive question to ask anyone. I will always stop and rethink life questions like that.

Back to the present.....or presents. We have bought a few for Madelyn this year. I am stopping myself from buying to many as Madelyn still has two sets of grandparents, and everyone knows how grandparents spoil there granddaughters with way to many toys.

We a very much looking forward to spending the 25th at home this year, just enjoying the day and all that it brings.

Cheers!

Happy Halloween!

Madelyn got a second hand costume in the hand-me down box from her cousins. As she is not really old enough to trick-or-treat I took her to a few houses of people that we know just to show her off and she was as snug as a bug. (Pun intended.)

Good news Update

I have so much to say and so little time. Madelyn will catch me on the computer and insist on pressing a few keys herself. She is busy pushing the car around the floor for the moment.

I just have the say that feeding is going much better than I could have every dreamed. After fighting with not eating and high cal/cc. Madelyn is now on regular formula and eating many different foods and textures. I try to feed something on a spoon at least three times a day and sometime it works and sometimes it doesn't. I have found that my attitude plays a big role. The more uptight I am about the situation the less she wants to eat. So I have learned to be relaxed about the whole process.

The other change that we made in our house this last month is that we are no longer doing night time feedings. It took a few steps but slowly, Madelyn has agreed to sleep though the night. Ah, what a wonderful feeling to sleep for more that four hours at a time.

Home for 1 Year!

Yesturday, together with our families, we celebrated Madelyn's homecoming. Yep, it's been a whole year that Madelyn has been at home. I remember that day like it was yesturday. The feelings still overwhelms me at this moment. I still cry at the thought that God has allowed Carl and I to take home our precious child. And I grieve for those families that are unable to take home their CDH baby.

As we celebrated, the family that I have mentioned in a previous entry. Nathan and Crystal Rahul, are preparing to bury their presious baby boy Mason. Please keep this family in your prayers.

Where is Madelyn?

Can you see Madelyn?

This is where I found Madelyn yesturday afternoon. After checking all the rooms with open doors and not seeing her, I went back to check behind furniture. There she was hiding on the shelf with her toys.

12 Month Recap

Since I haven't been doing my regualar blogging over summer. I am simply recapping what Madelyn does at 12 months for my own records. If you are bored and don't wish to read, I understand. Before Madelyn, I was so bored when people went on and on about what their little child did this time. So here it is:

At 12 Months Madelyn:
Crawls everywhere
walks while holding on to something, ie. furniture, walls, etc.
babbles continuously - she likes to stand up, raise her arm up in the air, and declare all kinds of things that I'm sure are very important to her, it's just I don't understand.
We can hold a toddler converstion, she babbles, I say, yes or sure, and then she continues to babble. It's great to have someone to talk to when you are at home all day!?
Her favorite things to do are look at books, play with a shape sorter, and unload all the kitchen drawers.
Madelyn can crawl up and down stairs on her own-yes, I know, I watch her closely, but she is very independant.
Puzzle the cat and Madelyn have a good understanding about petting, and when petting is done. So cute to see them together looking out the patio window!
Feeding - lots of changes there. After reducing her formula from 1.0cal/ml to .61kcal/ml she is eating a whole lot better. Madelyn's loves fingers foods and has been feeding herself from about 9 months.
Madelyn likes swimming, bike rides, and LOVES to swing!


Feeding story:
Most of you already know that Madelyn has a feeding aversion. Since the NICU powder formula was added to the breast milk for her to gain back some of the weight she lost due to surgery. Madelyn was never able to comsume a high enough volume to gain weight without the added calories. Over the first month at home we slowly climbed the later to more and more added calories to her breast milk. Then after the breast milk ran out after seven months, she was on strat formula at 1.1cal/ml. This was working well until she plateaued on her curve at about five months. Dr. C. suggested that I could start her on rice cereal if I wanted to. So, I did and Madelyn ate it very well. She was like a birdie opening her month for the next spoonfull. I thought that this was great; she won't have any problems moving to solid foods. But I was wrong, oh, so very wrong. As soon as I started with veggies and fruit, Madelyn, the little independant child she is decided that she would feed herself. I did "hand over hand" feeding so that the food would get into her mouth, very messy, but it worked. Then one Saturday lunchtime she decided that it was okay for me to spoon feed her again. Once again I thought okay this is great, we have concurred the feeding aversion. And again I was wrong. That only lasted about a month until she decided she would like to eat nothing on a spoon. Only finger foods and very few of them. Nothing mushy, and no pasta, no meat. But Madelyn was gaining weight so I was reassured by Dr. C. and Dr. H. and the Public Health nurse that it was okay.

Just after seeing Dr. C, Madelyn had her first appointment with the OT - Nancy. She asked me what I thought the problem was, and I guess I told the heartfelt truth. Madelyn can eat if she wants to. I really think the continued added calories where now holding her back. Now don't get me wrong, I don't want you to think I don't think added calories to a diet are important, they very much are! But I was feeling that Madelyn was never hungry because she never had to be with the formula mixture at 1.1cal/ml. I had seen a slight increase in diet when I moved her to 1.0cal/ml. So, Nancy encouraged me to try giving water at night time feeding so Madelyn would eat during the day. I did this and it didn't work. What I did instead was changed the formula to a regular mixture that any other baby would drink. And WHOLA! Madelyn now eats four to five small meals a day! I can starting over with the cereals and slowly she is now consuming up to a tablespoon twice a day. Yogurt is a hit, and fruit is okay sometimes too.

As a mother, I have to say that my mood is directly related to how Madelyn feeds in a day. Let's just say it's much happier in our house this last month! Now my prayer is that Madelyn doesn't loose weight, because if she does, up go the kcals/ml again.

Back to School?!

So last week the day arrived for all the kiddos to go back to school here in Manitoba. There is no one in my house that is going to school, but the "poggie" ran out and so I went back to work the same day most kids went back to school. The night before as I was lying in bed trying to go to sleep, I couldn't help but feel like a kid again. You know, the anticipation of a new school/work year. The near future use of new office supplies (I love new paper, pens, etc.). And then of course the thought of office politics came and smashed me in the face. Kapow!



I'm sorry but I will rant just a little here. I know this is a blog for CDH and Madelyn, but it does relate a little bit. Now first of all I work at a great job, with great empolyers, and great co-workers, for ten years. I am the first one to admit that I am guilty of this. Why does office politics have to exist, and why do I allow myself to get sucked into it? This last year I was really not missing that part going to work. And after being pregnant with a CDH baby, that has only a 50/50 chance at survival, and after seeing your only child struggle to breath, struggle to live, and fight to over come this huge birth defect, and then when you actually get to take the precious gift that God has given us home. And now that she is a year old and looking back on all the things that she has had to over come and think about all the things that she has yet to over come. Are any of the issues of any significance really in the grand scheme of things; just think about it a little. I know, I will be trying.





There now that my rant is over with I can continue.....I had a great day at work. It was only for a few hours to get to know what my section of billing will be. Although I have to admit that there were a few moments that I was wondering if I could do this again. Reading words that had more than four syllables , and have an intelligent conversation that lasted more than two minutes without a baby crying. But it worked out just fine and then my time was up and I got to pick up Madelyn. She did great being away from me, I was a little worried as I don't have a regular babysitter. Now the real challange will be for me to stay disaplined enough to actually work when Madelyn is sleeping. Which reminds me, I should be getting back to work.......:)

Remember When......

Today was one year ago that Madelyn had her organs placed into her abdomen and her diaphragm was repaired. I have to say, I LOVE DR. WISEMAN! I think he is the greatest physician alive. I know I am putting him on a pedastel that he would say was for nothing at all. But when a man is able to do a surgery that will save your child's life in only an hour and a half; I just feel so greatful, and I always will.

So to celebrate this day I made jam, jam, and more jam. The cherries where ready and so I needed to get them out of the pails and into some jars. Grandpa came to do some babysitting while I was busy. Thanks Grandpa!

Later after supper Carl and I took Madelyn for a bike ride. She is really enjoying the bike trailer. It was great to get out as a little family.

Quick Update

We have had the most crazy few weeks. August is always nuts at our house now this year we get to celebrate Madelyn's first birthday. So since Carl and I come from very small immediate families I thought that I would open up Madelyn's first birthday to a bigger crowd. There are many people out there that have been praying for Madelyn and she has done so well, I am still in awe when I think back a year ago.

I started by planning a BBQ supper and making a list of people that might like to come to a little girls birthday party on the last friday in August. I was so pleasently surprise on how many people wanted to come, they even postponed camping trips.

We have been very busy getting the yard in better shape to show off to the crowd. Thanks Dad!

Carl I celebrated our 9th wedding anniversary! I can't believe it's been that long. We have had an amazing time. We even got to go on a two dates. One was out for supper a great local resturant. The other we went in to Winnipeg for some home decor shopping and fast food. It's amazing how quickly you can spend money in just a few hours, but our home is more homey because of it. Thanks to Ang, and grandma and grandpa for looking after Madelyn.

We also took in the local festivals that always makes a weekend fly by and you wonder where your lazy Sunday afternoon went.

This last week we went to see Dr. C for Madelyn's one year check up and then on the same day I booked an appointment with Dr. W, Madelyn's surgeon, just because I have many questions about Madelyn's Pectus and development of it.

The appointment with Dr. C went great. Madelyn is now 19pds and 8oz. That puts her into the 25th percentile. Woot, woot! We have been hoping for getting back into the 20th percentile since birth. I am so pumped, but she is still on formula at 1.0 cal/ml. That is down from 1.1 ca/ml. I had high hopes of moving to whole milk.

I did find out that Madelyn will have to see an opthomologist, because her daddy had a lazy eye, or inturning eye. I don't know the medical term for it. This can be a genetic problem and if caught early is easy to treat. I'm not at all worried.

After a little bit of Costco's great buys, and an hour lunch at a playland McDonald's it was time to see Dr. W. Now I made this appointment on my own because I have noticed that Madelyn is developing a pectus. I know that nothing will be done until she is a teenager but I wanted some real answers to the questions that I had.

Dr. W was gracious with me and answered every question over Madelyn's crying and fussing. Yes, she has a pectus. On a scale of 1 to 10, its about a 1. Yes is can get worse, but there is nothing to do right now. What can be done in the future we that all depends on medicine in the next ten years. Bracing the torso does work, but can be long and uncomfortable. If it is very severe Dr. W. right now fixes the problem, but there is a verticale scar on the chest. He does not do the "Nuss" procedure yet. Manitoba does not offer it as of yet, since it is still now widely practised. Can that change in 10 years when Madelyn might (and I say might, because we don't know yet.) need to have this done. Well yes, because we always know alot more in ten years. Just look at her and the results of CDH. Ten years ago, I would have delivered her in a rural hospital and she probably would not have survived. Praise God for technology!

So that pretty much sums up the month of August for us. I'm sorry for the ramblings. I promise to get more organized and have better more frequent posts.

What is up for September? Mommy is going back to work, so it time to figure out how to fit that in.

On another note, I had the privilage of meeting an expectant mom with a baby of CDH and an ompheocele. Here is her blog: http://crystalandnathanrachul.blogspot.com/ As Madelyn is doing so well, I was forgetting all the worries and heartache we had only a year ago. As Crystal was talking, I was just finding myself fighting back tears. My heart goes out to this couple. Please pray for them as they will need all the prayers and support in the next few months.

And So It Goes....

Just wanting to let everyone know that we are still here. We have been have an action packed summer. I think we are making up for lost time from last summer and all of the worries and anticipation of the arrival of a CDH baby.

So just to do a quick recap (I will do some back posting later):

We went to Rock Lake for the weekend
Spent the July long weekend at the cabin
Packed in a few day trips
Madelyn had "Duck" swimming lessons
We went on vacation to the cabin at Riding Mountain National Park
Took in the local fair
Prodouce is coming in from the garden
Madelyn cut more teeth
Madelyn is now able to crawl into everything and is able to reach almost everything

All of the above are my reasons for being so behind in posting.
But I will give you a few pictures just so you don't forget how beautiful those big blue eyes are.

Father's Day

Madelyn has been progressing very nicely. She is now crawling and getting into everything. I love watching her discover her new world and all the things in it.

For Father's Day I ordered a special t-shirt online that says "I Love My Daddy". Here she is sporting it and very happy. She likes to clap her hands when she is happy.

Madelyn had a special card for Daddy. It was exciting to watch Carl have his first Father's Day.

Here is my brother, also a father to two fabulous girls.

And of course my dad. I don't have a picture of my father-in-law, we did see him this weekend, i guess the camera wasn't out. Happy Father's Day to all you Dads out there!

Back on the Curve

I took Madelyn to the public health nurse office to have her weighed. And drum roll please........Madelyn is now 17pds! I was so excited, I was jumping up and down. No one there really knows what kind of an accievment that is for her. Madelyn is now back on track with her birth wieght in the 20th centile curve. Hopefully she can continue to gain weight since she is so active now she is burning alot of calories. And of course not eating anything on a spoon.

Physiotherapy

Last week I finally got a phone call from the BTHC physio dept. Madelyn was referred via her newborn follow up appointment in April. At that appointment I was shown how to do a few exercises to help Madelyn to learn to sit. She was sitting a few weeks later. But I was still anxiously awaiting the appointment with the physitherapist here to see what else we should be doing. So when they called last week Tuesday and asked if we could come the next morning I said we would be there.

Madelyn was is good spirits considering it was her nap time. The physiotherapist,Carla, was very friendly and Madelyn took to her nicely. We played on the floor and Carla assessed her well. I got a few more excersises to do with Madelyn that will help her crawl. She actually started crawling at the appointment. She had never done that yet, so I was very happy.

Since then, Madelyn is all over the place. She is not doing the proper technic of crawling on all fours, it is more like an army crawl with her tummy down on the floor. But we will continue to work on her core muscles, and help strengthen her shoulder gertal. Now I sound like a physiotherapist.

All in all, Madelyn is progressing nicely. Her muscle tone is weaker, but still in the normal range. And I am also happy about the fact that we also talked about her oral aversion, and next time I will get to talk to a OT, if Madelyn is still not eating with a spoon.

Cute Pics

Since I don't have anything big to update you all on, I thought I would show off a few pictures from the last few weeks.


Here Madelyn is modeling a summer outfit. Note that it's in the livingroom since it is still to cold to wear it outside. Well I guess Sunday was nice, and the rest of this week has potential.

Madelyn and Carl in "Big Red". Carl sold the truck so we took a few pictures for memories. It was the first car/truck that Carl and I bought together after we got married. Many a camping trip in that thing. Oh, the memories. Madelyn liked the rumble of the motor.

Here she is just looking plan old cute.

This is another summer outfit. Madelyn wore this to our first official wiener roast in our backyard on Sunday. Sorry, no pictures of that, I was kept hopping with running back and forth because I forgot so much stuff inside. But note the dress was purchased as a baby gift for Madelyn by Alison Wolfe. Great taste Alison, Maddy and I both love it!

Slow And Steady....

I took Madelyn to the Public Health office today since I no longer have a baby scale at home. She has gained nine ounces in two weeks! Woot, woot! High fives all around. Madelyn had not been eating for almost a month. So two weeks ago, I took her in to get a weight she was 16pds and 1oz. I noticed yesturday that she seemed heavy as I was putting her to bed. Today her weight is 16pds 10oz. I don't really know how she is gaining the weight. She refusses to eat anything off of a spoon. Oral Aversion has reared it's ugly head yet again. Just when you think it's gone, or that Madelyn has gotten over it, it's there again.

So this is a typical meal time for her. I give her anything soft and bite sized, bread, cheese, cut up fruit, veggies, etc. She is really good at picking it up, just not getting it in her mouth. When she is done most of the food is in the pocket of her bib or on the chair. But it's important to make mealtime fun, so I don't force anything. Her caloric intake is still mostly super high concentrated formula, 1.1 cal/cc. And tonight her last feeding she took 6oz. Not bad since she has never taken more than 5 oz. before.

Most average babies take an 8oz bottle at about six to eight weeks. Madelyn is not eight months old. Hmmmm, slow and steady wins the race!?

Grand Rounds at HSC, Nurses Week

During a visit back to the NICU after Madelyn's newborn follow-up appointment, I ran into Doris Sawatsky-Dickson, the nurse clinician for the NICU. She was organizing a Grand Rounds for the nurses during nursing week on May 14th. The focus was Congential Diaphragmatic Hernia and how nurses are invovled from fetal assessment to discharge and follow-up. I agreed to bring Madelyn as a model baby.

Back at NICU, John, is the award winning, Respiratory Therapist Specialist. He was part of the transfer team for Madelyn. He remembered Madelyn and confirmed the fact that she was the first transfer on the Jet ventilator. They have done a few more since then.

Marie Hadfield, Nurse Stonogropher. She was from fetal assessment. She did all of my ultrasounds and gave be great information and so much support. She was the first presenter of the meeting. I just love her she is so great!

The whole hour was based on Madelyn's case. Here was a summary of her tests. I new there had been many, but not that many. If you look closely you can see that she had 53 blood gases. I found it interesting, yet it brought back many of those uncertain feelings about the survival of your baby.

I am glad that Madelyn's case can be used for more education and hopefully help with the care of future CDH cases at HSC. It was also nice to see all the nursing staff that we got to know and to get back to see them, and I was allowed to formally thank them for all the help, support and encouragment they were to Madelyn and us as parents. Madelyn was a little restless during the talk, and then feel asleep when it was my turn to talk, but she awoke just as I was done and so I brought her up to give a little wave. She was great, and loved all the attention she was getting.

Happy Mommy's Day!

Happy Mother's Day Mom!

Celebrating Mother's Day can be alot of fun!

Especially when you get flowers and beatuiful cards.

For years I never thought I would celebrate Mother's Day. Then when I got pregnant I was looking forward to holidays like today. But last year at this time we had already received the news of CDH and so we agreed to ignore the day just like all the other years. I always liked to focus on my Mom and Carl's Mom. And other "mom's" that I know. My anxiety level was very high, and I had many worries. Now my worries are very different. What a difference a year can make!

Making An Entrance

Attempt no.1 at trying to get the tooth on camera.

This is the best that I could get for now. But here it is, after months of druel and chewing the first tooth made an entrance on April 28th.

Big Mac Anyone?

In all this want for CDH awareness, I talk about Madelyn all the time. Today I want everyone to know the generosity of the Ronald McDonald House of Winnipeg. Carl and I moved into the RMDH on September 6, 2008 and lived there until October 1, 2008. We only had to pay $10 a night. This is such an awesome charity. I truly don't know what I would have done without it. The house is located only two blocks away from the Children's Hospital. This gave me the freedom to see Madelyn anytime I wanted to, and it made me feel better knowing that I could be at her bedside in just ten minutes.

I know that your doctor has probably told you to cut back on your saturated fats, cholesterol, etc. But on Wednesday May 6th, I am asking that everyone buy a BigMac, EggMcMuffin, or a Happy Meal. Please help support families like ours. A little really goes a long way.

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.

Does it ever end?

Now that I have more or less told you all the whole story of Madelyn's hospital stay, I would like to share more recent happenings in our house.

Madelyn is very closely monitored by her pediatritian, Dr. Carson. He is a great man, I really like him and he specializes in CDH cases. We take Madelyn to see him all the time. As she has gotten older and established a good growth curve we go less often. By that I mean it will be now eight weeks since our last appointment. From working in a medical clinic, I don't like being on the other side of the desk. But such is the life of a CDH baby. There is always something to be on the look out for.

Last week Madelyn had her follow up appointment at the Variety Heart Centre. I have to admit that I was very nervous about this appointment. I was afraid they would find something wrong with her heart.

The appointment was only a short echocardiogram (heart ultrasound). Madelyn had fun lying on the crinklely paper and chewing on the cord. The tech was great, she explained to me that it was all routine and the results would be sent to Dr. Carson. I am assuming that if something would have been drasticly wrong she would have let us know right away.

I of course now worry that there is still something wrong and that Dr. Carson will have bad news for us on our appointment next week. You would think by now I would be used to this. I guess mothers always worry.

Going Home

We got to go home on Oct 1, 2008. Madelyn was now 35 days old. I had left our little house on Aug 27th and had not been back since. I was yerning to see my livingroom curtins that I sewed the day before I left for Winnipeg. (I needed to keep my mind busy.) When I left I remember praying that God would allow me the privilage to take a baby home. On days when I thought we would never leave the hospital, I would imagine Carl and I leaving the hospital with a baby in the backseat. Now it was going to happen!

After cleaning our room at the RMDH, Carl went to get the car. I signed the discharge papers. It was an odd feeling to walk out of the ward with Madelyn in a carrier. The ride down the elevator, I kept looking to see if she was still breathing. But she was fast asleep.

I came out of the front door of the Children's hospital and Carl had parked right in front. He helped me put the car seat in place and I got in back for the hour ride home. As Carl pulled away, I started to cry. Well, weeped, would better discribe it. I had this feeling of great relief. Madelyn had survived! I was taking home this presious bundle that God had given us. Now I had this intense feeling of responsibility. God expected us to care for a baby that was well enough to take home, but still was very sick. We would have to make sure she was eating enough, gaining weight, and watch for any side effects of CDH. (Reherniating, deafness, sortness of breath, laboured breathing, pectus, scoliosis, etc.)

Carl fought the rush hour traffic and we got home at 6:30pm. My mom had made us supper and it was waiting on the stove. My sister-in-law got all the little baby things out and ready to use. And my dad set up the crib. It was amazing, our house was now ready for a baby. I had feared the worst and refused to buy baby furniture and clothing. I had only a few things that would be used in the hospital, a "going home" outfit and blankets.

Just being at home was a relief. I was now running down the hall to see how Madelyn was doing in the middle of the night, but I was at home. I have no words to discribe the feeling of being a first time mom at home with at baby. It is a mixture of joy, and anxiety in one.

God had been good to us. He had answered our prayers, and the hundreds of prayers of so many others. I was so thankful. My heart was full and we felt very blessed!

Moving on...

Time for another post. I have to get everyone up to date so I can talk about more recent happenings. So before Madelyn get to leave the NICU she needs to be off 02. On a Wednesday morning at rounds the docs talked about weining her off, but the night before they had tried but Madelyn needed to stay at 30%. Just after the 9 am feeding the nasal prongs got pulled out with Madelyn's fist. Her sats did not go down. The nurse suggested we leave it off and see how long it would take. By lunch she was off the 02 altogether. So Madelyn actually took herself off 02!

Now lets move on out of the NICU. After 26 days Madelyn was moved to the Intermetiate Care Nursery or IMCN or more commonly known as the T1 nursery, located back at the women's hospital. Now I have to say that I was warned by all the other mom's at the Ronald McDonald House that I would be shocked by the difference in care and that I won't like it. And boy, oh boy, was that the case.

Now it's not to say that the nurses don't work hard but they are so short staffed they don't have time to even read the chart, not even the bedside notes. This was the problem on Madelyn's second night there. Her feeding schedule was every three hours 3,6,9, and 12; alternating a bottle, with breastfeeding and a gavage (feeding tube). This is done so she can get her strength up to take all her feedings orally for 48 hours and then we can go home. Oh, how I wanted to take my baby home. The nurse on the second night couldn't figure out why Madelyn was even at the IMCN because most nurses don't know what CDH is. She feed her bottle feeds all night long until the charge nurse noticed this problem in the morning. I was so frustered, because now we had to start all over again. Madelyn was so exhausted from all the hard work she slept for hours on end.

I needed to get Madelyn out of IMCN. I found it difficult to be there, I was impatient and didn't like to leave Madelyn over night. At the NICU she had more personal care, and had won over so many hearts that if she cried or fussed, someone would try to give her special attention. IMCN was just understaffed and they even admitted it.

The answer to my prayers came on Friday, only three days later. During rounds, I asked if it would be faster to get Madelyn home, if I would stop breastfeeding. All the lactation consultants were horrified, that I would consider this. They asked me if I would like Madelyn to be discharged to the ward at the Children's Hospital. I could then room in with her, and continue breastfeeding. This ment that I for the first time could spend 24 hours with my baby. Of course the answer was yes. YES, I could hardly contain my excitement. I had to call Carl at work immediately. I was so happy.

First Madelyn had to have an MRI. It is procedure that all infants from NICU on ventilators get an MRI and a hearing test before discharge. The hearing test was done the morning she went to IMCN. The MRI was more difficult to get a time slot. Thankfully Madelyn slept through the whole thing and was not sedated. She had been off all medications for almost two weeks and I didn't like her being poked anymore.

At about 5:45pm I helped the nurse Lindsay pack up all of Madelyn's belongings and Madelyn into a stroller. I got to take off her SAT probe, and her monitor chest stickers. And off we went to the fifth floor of the Children's hospital. Madelyn was now a cordless baby!

Madelyn was placed in a room all by herself. She had a bassenett and I had a hospital bed. I felt so happy and afraid at the same time. For the first time I was left alone in a room by myself with my baby. There was no monitor to look at to see if her breathing was okay, or if her heart rate was to high. I had alot of anxiety to get over.

Carl and I had the best weekend together with Madelyn. I was allowed to stay with her and Carl would go sleep at the RMDH, and be back by breakfast. We felt like a real family. We did all the feeding. The nurses were nearby if I had any questions or concerns. Dr. Carson would come by every morning to see Madelyn, and I got to ask him any questions I had as well. I felt like we were in paradise. Yet I still had the urgent feeling to get home. Every mom wants to take her baby home.

Oxygen and Feeding Tubes

Madelyn had a low grade fever and so the isolette was open and the heat turned off. She was given a ten day course of very strong antibiotics. When her chest tube bandage site was changed there was a smelly discharge that sent up a warning of infection. Dr. Chelsea Ruth the Medical Officer for the NICU stated that with so much plastic in her body it was almost a given that she would get some type of infection. Once again Madelyn fought back.

CPAP was removed on a Friday morning. For about a hour she was breathing without any help. But her oxygen level was falling and she couldn't keep up on her own. Nasal prongs were used to help give her extra oxygen.

Madelyn still had to many wires, so no clothing yet. It's hard to comfort a baby that is agitated by CPAP and a feeding tube. The purple blanket was the best I could do. It is very heard to see your baby uncomfortable and there is nothing you can do to help ease the situation.

The gastric tube was changed to a feeding tube and she was started on tube feedings. After having your intestinal track in your chest cavity and then moved to the right place you have to wonder if there won't be any kinks or blockages, but she handled the breast milk just fine.

The ventilator came off after eight days. Continuous Positive Airway Pressure (CPAP) was given for six more days. Madelyn was trooper. She never disapointed anyone when she was challenged for less assistance. Even the doctors were amazed at how smoothly she recovered.

Notice all the pumps on the stand behind the nurse? There where two more on the counter behind her isolette. The Jet ventilator is the machine at the foot of the bed.

The NICU has great nursing staff. They always answered any questions thay we had.

Surgery

Madelyn had surgery on September 1st. She was four days old. This is a common day for CDH babies to have their diaphram repaired. Dr. Wiseman did the surgery in 1 hour and 20 minutes. It was amazing. I was originally told that sugery could take up to six hours. The surgical team moved into NICU. All the visitors for the other patients were told to leave and I stood by the window watching them work. Dr. Wiseman came out to tell us that she was a very stong girl and her lungs didn't look to beat up. The Jet ventilator worked wonders for the transfer. He was even surprised to see that there was quite a bit of left lung tissue. Now we had to see if the lungs would expand for her to breath on her own. Madelyn had her stomach, all her transverse intestine and slpeen in her chest cavity, but no liver! The MRI had been correct.

Now was the time for more waiting. CDH babies have a honeymoon period of 24 hours after surgery where they do very well and the next week is usually very rocky. We prepared ourselves for the worst.

Out of the way, there's a baby coming through!

Madelyn had to be transfered from the Women's Hospital to the NICU at Children's through the tunnel system. She made history by being the first baby to be transfered on the Jet ventilator! The nitric oxide was discontinued for transport because it wasn't really helping her at the time and they couldn't fit both the Jet and the nitric machines in the elevator. These pictures are courtousy of Ang, my sister-in-law. She got the job of going ahead of the transfer team and got to tell people to get out of the way because there was a baby coming through. The transfer took about an hour.

Timing Is Everything.

Now is the time…

There was much debate about how I would deliver. It started off that we would wait for a spontaneous vaginal delivery. As the push through the birth canal is good for a CDH baby and there is no benefit from a c-section, unless obstetrically needed. I really liked this option because it made me feel like I was having a regular pregnancy.

On our August 12th appointment Dr. Menticoglou (a genius in my book) stated that the neonatology team would like to do a c-section at the Children’s Hospital because they feel it would give the best chance for the baby not to have to travel through the tunnel system for a ¼ mile. And this c-section would be on August 27th. My original due date was for September 9th, after the long weekend. They were afraid that I would go into labour on the long weekend and not have enough staff was available for this type of high risk case.

So I went home and made a list of why this was the best route to take. We prayed about it and God gave me peace. I gave my notice at work that I would be leaving sooner. I had planned to work as long as possible. Work had been my therapy, and a good distraction. I loved my job and everyone was so very supportive.

Just as I was comfortable with the c-section idea, the next week they changed their minds. Carl and I were speechless. Dr. Shesa and Dr. Menticoglou went to lunch and discussed my case with all the other neonatologists, and respiratory therapists. Now I would be induced on August 27th hoping that the baby would arrive early on the 28th. I was advised that this was the best plan for me and future pregnancies, and that it would have no barring on the survival of my baby.

On Wednesday, August 27th Carl and I left Winkler at 5:30am. I had to be at the Women’s Hospital by 8:00am. We did not know when we would return home, or whether or not it would be with a baby.

By 4:00pm my labour had started. By 7:00pm I needed drugs, and lots of them. I laboured all night long. Various OBs came by to check my progression. It seemed to be working out fine, and I was 8cm by 7:30am. Dr. Menticoglou came back on shift at 8:00am and stated that, they had been wrong, I was only 6 cm dilated. He offered a c-section, his words were; “this isn’t a marathon.” I told him I was fine as long as the baby was fine, and I could have more drugs.

The reason I mention this part of the labour in my story is because God was starting to show me how He works. My experience is that God is always on time. He is never early, nor late. I continued to labour though the day on the 28th and the nurses started prepping me for c-section. At 3:30 pm an OB came to check my progression and found that I was 9 cm. Dr. Menticoglou came in to assess and stated that I was ready to push. At 3:59 pm our precious Madelyn Jodene came into this world. She was whisked away by the respiratory therapist to another room where they intubated and ventilated her.
The timing was so important, and God knew what he was doing. The staff had just changed over at 3:00pm. Everyone was fresh, ready and waiting in that room for our Madelyn. The best of the best, respiratory therapists, three primo neonatologists, and numerous highly trained NICU nurses, all in one room just for our baby. The labour and delivery nurses couldn’t believe all the people that had come to work on Madelyn. Dr. G, one of the neonatologists, described it best on the day Madelyn left NICU. He said if there was ever a team of neonatologists going to the Olympics; that would have been the team. They had been the gold mental winners; the “A-Team”. Never had there been so much brain power in one room, working so smoothly to save a life of a newborn. That is my God at work!