Part 8 - A Year in Holland - Mason's Homecoming

While in the NICU, Mason had a few more turning blue episodes, he started refluxing and choking, and had to remain prone (i.e., on his belly) at all times. Any time he was laid flat on his back, he would choke and stop breathing. It was absolutely terrifying to see my baby struggle to breath like that. I felt so helpless. There was nothing I could do.

Sometimes a cleft can be indicative of other abnormalities. He passed all of his screenings with flying colors, but they heard a heart murmur on Day 3 and wanted to make sure it wasn't anything to be concerned about so they ordered an echocardiogram. I have a history of heart problems in my family so I didn't mind being extra careful in this department.

It's funny, when the man came up to the NICU with the EKG machine, I looked at him chuckled a little. He looked like a football player. His hands were the size of my head. I said to him:

"YOU do EKGs for all these little tiny babies? But you are so BIG!"

He didn't mind my comment and he just smiled and said:

"Yes, I do. I love my job."

We laid Mason on the table and the football player's hand covered his entire torso. I held Mason's hands, trying to keep him calm and still while they looked at his beautiful little heart, and the football player said:

"There is nothing like Mom to keep a newborn calm. It's really quite amazing."

Suddenly I felt less helpless. I was doing something after all. After months and days of feeling totally and completely helpless, I was grateful for his kind words.

The EKG went great and it was determined that Mason's heart murmur was nothing to be concerned about. I cried when they told me, relieved that we had dodged one more bullet.

Mason had to meet several conditions before he was allowed to come home: 1) he had to be eating well 2) he had to go 48 hours without a de-saturation/breathing episode and 3) he had to pass the car seat test.

Passing the car seat test meant he had to be able to sit in his car seat for two full hours and keep his oxygen level above 90. His eating was coming along and he had not had any breathing episodes since Day 2 so we were positive he was going to pass the car seat test - we were so close to taking him home! So, we put my little 6 pound 9 ounce guy into the huge car seat and began the test. I sat with him the entire time, cheering him on, and with only about 20 minutes to go, his oxygen level dipped.

He failed. I was devastated.

That bought us two more days in the hospital.

Andrew and Lia were really upset. They missed me, their routine was completely interrupted, and they wanted their baby brother to come home. They wanted our whole family under one roof. It was really hard to have to tell them we had to stay two more days.

But, stay we did. And in retrospect, I think the extra days really helped Jamie and me feel that much more comfortable caring for Mason. We got extra practice feeding him, we got to know him better, learned how he needed to be held, how he needed to be changed, all while under the supervision of some of the most fantastic doctors and nurses in the state. They also had me watch an infant CPR instructional video and gave me a doll on which to practice. I had taken infant CPR 6 years before but I was grateful for the refresher.

At 7 days old, Mason took the car seat test again and passed! He could come home! We were excited, scared, nervous, and elated, all at the same time. They gave us a sleep monitor and told us any time he wasn't in someone's arms, he should be hooked up to the monitor. The monitor measured oxygen level and heart rate. If he stopped breathing, the alarm would go off.

So we packed up all of his stuff - his special needs nursing bottles, all of his paperwork, diapers and blankets, his sleep monitor and the sticky leads that plugged into the monitor and onto his chest - and headed home. After months and months of anticipation and waiting, we were bringing our third child home at last.

I won't lie, I cried the entire ride home. As eager as I was to bring him home, I was also completely and utterly terrified to take him away from trained nurses and doctors. What if he wouldn't eat for us at home? What if he started choking? What if he turned blue? Would we be able to care for him? Will Andrew and Lia be scared if they see their brother choking? Of course, all of these questions lead to the same, horrible, place in my head, the thought I couldn't say out loud: what if he died? I couldn't, WOULDN'T, let myself say it.

Part 7 - A Year in Holland - The NICU

"You're finally here." Jamie and I kissed him over and over again. His little hands and little feet, his full head of hair - he was just too precious. He was a gift, a miracle. The last piece of our family, finally here with us.

After a few short minutes in my arms, the doctors and nurses took Mason from me and began more suctioning. They described him as "floppy" and told me they had to take him to the special care NICU. I looked at Jamie and said "Go! Stay with him, don't leave him!" and they all left the room.

I wanted more than anything to be with my baby but I was still dealing with after-birth. After about an hour, I begged to go see him and they wouldn't let me - they didn't want me to get out of bed. They didn't think I should walk! The thing is, I felt better, physically, than I had in about 4 months. I could move, finally! I wanted to get up!

Jamie walked back into the room a little while later and he looked 10 years older than when he left. He was pale, and I swear his hair looked gray. I was not totally prepared for what came next. He said:

"Mason is okay. But he stopped breathing and turned blue a few times. They had to put a big suction down his throat to get a bunch of fluid out. Kim, it was the most awful thing I have ever seen, I felt so helpless. I'm so glad you didn't see it. I will never be able to erase that image from my memory. They want to keep him in special care."

Well, that was it. I was getting up whether they liked it or not. I called the nurse and told her I was going to see my baby. She made me sit in a wheelchair and wheeled me down to the special care nursery.

When I got there, I located Mason right away. First, he was a lot bigger than most of the babies in the infant NICU. Second, he had so much hair! He was lying on a table with wires all over him. He was surrounded by beeping machines that measured his heart rate, breathing, and oxygen levels. There were doctors all around him. He looked.... beautiful, peaceful. I wanted to hold him but had to ask a nurse to help me pick him up because there were too many wires for me to maneuver. They explained that he had a lot of amniotic fluid that he couldn't swallow properly in utero because of the cleft in his palate. That is what caused him to stop breathing and turn blue. They wanted to keep him for 4 days instead of the normal 2.

And I know this sounds crazy after everything we had already been through, but my heart sank. I did not want to leave that hospital without my baby. I didn't want him to be in the NICU all alone without me. My other two kids stayed with me in my room the entire time after they were born. I was devastated that Mason couldn't stay with me and wasn't going to be able to come home in two days. It was like someone punched me in the stomach. Reality had punched me in the stomach.

Mason had a very difficult first couple of days. He didn't know how to suck because of the cleft in his palate. He did have a rooting reflex but he couldn't do anything with it because he couldn't put his lips together and he couldn't suck. Not for the last time, I sort of marvelled at my little miracle having to learn what was instinct for other babies. He wasn't even a day old and he was already learning how to overcome his first obstacle.

One of the special care nurses worked with him to learn how to feed him using the Haberman nipple. I remember asking her how to do it, eager to learn so I could feed my baby myself. And I'll never forget her answer:

"Well, first he has to teach me how he wants to be fed, and then I can teach you."

For that first week, it took Mason an hour or more to eat an ounce of food. I sat with the nurse and watched her feed him, looked at every angle, asked questions, watched how she held him, how she held his face, his chin, how she angled the nipple. They kept telling me I should go back to my room and rest but I couldn't. I needed to learn how to take care of Mason.

He was my third child and I needed to learn, all over again, how to take care of my baby. Everything I knew was wrong. My experience with my other two kids meant nothing. Mason was unique, with special needs, and I needed to be trained on how to care for him. I couldn't get by on motherly instinct alone - no, not with Mason. I was starting over. We were starting over. Our life was forever changed. We were humbled, we were scared, and we were in love. Nothing mattered more than learning how to take care of that child.

And so, we learned.

We spent hours and days with the doctors and nurses in the NICU. We stumbled and cried because we thought we'd never get it. Part of me wanted Mason to remain in the NICU because I knew they could take care of him better than I could.

And honestly, that is a hard thing for a mother to admit - that someone else is better equipped to care for her child than she is. It was one of the hardest weeks of my life. But we made it, eventually.