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!