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!

The Saga Continues

As the months of pregnancy counted down, we went to many more Fetal Assessment appointments. The baby was growing well. The heart showed signs of compression, but the blood flow was still in the right direction and the four chambers where all working. We knew our baby would have a strong heart to fight for survival after birth.

We had many good signs that our Madelyn would have a fighting chance. The lung-head ratio (LHR) at 26 weeks was 1.3. This measures the volume of the right lung and is then divided by the circumference of the head. Studies show that babies with a LHR of over 1.0 usually survive, and babies with a LHR over 1.4 always survive. The OB told me not to count on that, but I wanted to hang on to every good fact I could find.

I had a Fetal MRI done on July 2nd. The results got sent to my family doctor (whom I worked for) and I got to see them before the Fetal Assessment team could tell me. We had been praying and asking others to pray that it would show no liver in the chest cavity. As the liver is a denser organ it would compress even more lung tissue, and the chances of survival is even graver. The MRI showed the chest was completely filled with bowel (intestine) loops, and the stomach. The liver was below the diaphragm,(praise the Lord) and the spleen was expected to be in the chest cavity as well, since it could not be identified anywhere else. Our regular appointment gave us the opportunity to see our baby on a regular basis; we always came away with great pictures that I loved to show off to anyone who asked about my baby.

Carl and I held on to a piece of scripture from Psalm 139.
“ For you created my innermost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made: Your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.”

As the weeks ticked by I focused on enjoying my pregnancy. We met the paediatric surgeon that would be doing surgery. Dr. Wiseman (truly a wise-man) was very good at answering all of our questions. The Children’s Hospital in Winnipeg does not have ECMO (a heart-lung by-pass machine) very commonly used in the US for CDH babies. He simply stated that it was not really helpful and that the respiratory team at HSC were top notch. Dr. Shesa, the Neonatologist that met with us during one of our appointments said that we could be referred to Edmonton if we would like to have ECMO for standby. Carl and I discussed and prayed about it and felt that having our baby here in Winnipeg was going to be fine, and whatever happened, happened, and would be God’s will.

First of many appointments at Fetal Assessment.

We had to wait a week for our Fetal Assessment appointment at the Women’s Hospital in Winnipeg. I was anxious for the appointment. I was hoping and praying that perhaps the ultrasound had been wrong, or that God and healed my baby. But this was not the case. After meeting with the Geneticist about this deformity we were told that it wasn’t anything that Carl and I did, or that we carried a gene to cause the defect. We of course were offered to terminate the pregnancy, and try for another healthy baby. The chance of having another CDH baby was only 2%. Terminating, of course was not an option for me. (Termination of a pregnancy is another story and I choose not to discuss at this time.) I had the amazing support of my husband, and if there was even a 1% chance my baby would survive I had to give it that chance.

The Fetal Assessment Unit at the Women’s hospital is amazing. They are very busy, yet always professional, with a feeling of caring. Now the waiting room at the Women’s Hospital is another story all together. Now you have to understand that in the province of Manitoba where we have universal healthcare for all, all are treated as equal. So everyone and I mean everyone that has any risk in their pregnancy is sent to this unit. This includes every woman with possible complications affecting the baby. For example, gestational diabetes, over the age of 35 years, high blood pressure, and as in our case a question about development, it also includes mothers addicted to drugs and alcohol and the lifestyle that brings with them. So needless to say, sitting in the waiting room opens my very secluded world of small town living.

Our nurse stenographer was the best, her name was Marie. She let us see our baby in 3D for the first time. She explained everything to us. Dr. Mytopher was the first OB that I saw and it was her duty to explain to us that the hernia was severe and that many babies do survive, but there are many that don’t. After we expressed again that we would go forward with the pregnancy she stressed that it would be a long journey.

I asked for more information on CDH since the only real information that I had was from reading other blogs and finding medical journals on the internet. Marie was kind enough to photocopy a chapter out of a medical textbook. This information was very black and white and gave the mortality rate at about 50%. The Children’s Hospital in Winnipeg has about a 70 % survival rate for CDH babies. The problem is that there is no way for medical professionals to tell you where your baby will fall. We would continue to be seen at Fetal Assessment and they would monitor the growth of our baby. We were promised that they would be up front about anything they found. Marie also gave me her direct phone number at the unit and told me to call anytime I had any questions. She also told me that is was important that I stay positive, because right now, while my baby was still in utero, it was fine.

With this new information, Carl and I went home. My parents came over the talk about the appointment and just to be supportive. I confided in my mother that I felt defeated and had no desire to fight for this baby. We prayed together and she told me to not despair, to keep my chin up and gave me a bible verse. “Those who wait on the Lord shall renew their strength.” Isaiah 40:31 She reminded me that God had sent this baby to us.

God has a plan for you...

My first blog to the world about our adventure with CHD. Carl and I had been trying for many years to have a baby. In the midst of our sadness and despair, I found out I was pregnant on January 7, 2008. I had my first ultrasound at the Heartland Fertility Clinic in Winnipeg on January 29, 2008 because I was impatient and very nervous about this pregnancy. I had waited so long to be pregnant and now that I was, I could not shake this feeling of nervousness, I was so afraid of miscarriage. Dr. K, had really good advice for me. He told me to allow myself to feel the feelings that are required at the moment. In other words, it was okay for me to allow myself to be happy and excited. If something was going to go wrong, feel sad at that time. On that very cold winter morning Carl and I ventured to Winnipeg to see our baby for the first time. And there was the baby on the black and white screen. I almost cried right there on the exam table. The baby’s heart was beating; I could see the pixel on the screen flashing back and forth. At that moment it became real to me that we would have a baby and become parents!

We waited to tell family and friends until the usual "safe" period. I was 14 weeks. Everyone was so happy and excited for us. I really enjoyed telling people that we would soon have a family of our own.

On April 28th I was scheduled for a routine ultrasound at Boundary Trails Health Centre. I was really excited to see my baby again. I was 20 weeks along and starting to show my pregnancy belly. I had a fleeting thought that morning in the shower that there might be something wrong with our baby, but I sent up a silent prayer to God to give me peace and I also thought that we had already had our battle with infertility how could something else go wrong. Besides, I had already been feeling the baby move since 15 weeks, all had to safe and sound. I continued to get ready for work and just as I was walking out the door, it was as if God stopped me right there, and spoke directly to me. All that He said was, "God has a plan."

A few hours later that day, the radiologist Dr. Mary Jacob, said three words that will never leave our lives. Our baby had a congenital diaphragmatic hernia. I was going to be sent to the Fetal Assessment Unit in Winnipeg and they would assess further.

I work as a billing clerk at the clinic where my family doctor works. So, Carl, and I in our daze and bewilderment rush back to see what she had to say. As we walked in the door, her nurse saw us coming down the hall and ushered us into an exam room immediately. There Dr. H, explained to us that I would be delivering our baby at the Women’s Hospital High Risk Delivery ward. The baby had a hernia on the left side, allowing the stomach up into the chest cavity; pushing the heart to the right side and preventing the lungs from developing. Dr. H had never had a patient with this defect before and could not really offer advice on survival rates. I just sat there with Carl, his arm around me and my world came crashing down.