Hearing Test

Madelyn had her hearing tested today at the local hospital. She did amazingly well. She was quiet, sat still when needed, and co-operated with the technician. Plus her hearing is well within the normal range. We will continue with annual hearing tests to make sure she doesn't have any gradual hearing loss. All babies that have spent many weeks in the NICU, plus on very strong antibiotics need to have their hearing checked. Plus CDH babies have a higher risk of loosing their hearing as they grow older. I was not really concerned at this time because Madelyn is always asking be about sounds around the house or when we are out and about. She will say, "What's that sound Mommy?" I have to stop and think because I can't hear anything, but usually it's a car coming down the road, or the cat purring on the chair, or even the fridge motor running in the kitchen. We continue to pray that her hearing stays sharp.

Remember When.....

Madelyn had a visit with Dr. S. the opthemologist at the Children's Hospital yesturday. All is well with her eye sight which is great news. While we waited for the eye drops to dialate the pupils we had some time to waste. I decided to take the elevator up a few floors to visit the NICU. I dropped of an update letter and picture for the bulletin board, and Madelyn got to be cute as a button to the NICU nurse that was part of the transport team from Women's to Children's. It was fun to show her off and say that all was well with her development and that she was so fun. We also go to see the Respiratory Therapist, John, whom I greatly respect for all his knowledge and understanding about CDH and the Jet Ventilator. Together they gave Madelyn great care and I think of them as my heros.

Ready, Set, Go .... And we are off to the races.

Madelyn started walking a few steps at a time in mid November. But she really took off on December 14th. She had an appointment with the physiotherapist and she was just evaluating her on a chart, and stated that as she was stepping, but not yet walking. Madelyn was about 5 -

6 weeks behind. (no kidding, maybe five weeks in hospital and having major surgery does hold you back.) Madelyn must have not liked what she heard, because as we left she grabbed my hand and walked out of the office and hasn't stopped walking.

For the first weeks she was always walking with her hands up in the air. I think she was trying to be prepared for any falls, either that or she was being carismatic, and praising God for the ability to walk. Hmmm, maybe both.

Needless to say my life has become even more busy. Some days I wonder how I will get anything done. But then I think back to this,

and then I just sit back and ponder all the joy that she has brought to our lives and how much more we have yet to see.

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.

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.

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.

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 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.

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.

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!