Part 9 - A Year in Holland - The Era of No Sleep

The first night we took Mason home, we didn't sleep. At all. The sleep monitor kept going off because the leads stuck to his chest kept coming off - we couldn't get them to stay on. *I* couldn't sleep because we couldn't get the monitor to work correctly and I was too afraid to close my eyes and leave him unsupervised.

That was the beginning of the period of my life that I shall forever call The No Sleep Era.

Now, every parent of a newborn goes through a period of time when they are barely sleeping. With my first born, he woke up every 2 to 3 hours to nurse in the beginning and I felt like I would die. He gradually got better, though, and within 4 four months, everyone was sleeping. Bliss!

With my second born, we weren't quite as lucky. She woke up every night her entire first year of life! The good thing about Lia was that as long as we brought her into bed with us, she'd go back to sleep. So we had to get up, but after around 8 months or so she stopped eating during the night so all we had to do was get up, get her, and bring her into bed. It wasn't great, but it was manageable. Hell, I would have slept standing on my head in the middle of my front lawn if it meant getting a decent night's sleep.

Being sleep deprived with one kid is difficult. Being sleep deprived with TWO kids is something entirely different. I mean, let's be honest, there's a reason sleep deprivation is used as torture, right?

So, if being sleep deprived with one kid is difficult, and being sleep deprived with two kids is something entirely different, then being sleep deprived with THREE kids, one of whom has special needs, is one step away from the men in the white coats coming to take you away. Something really terribly bad happens to the human brain when it is severely sleep deprived.

For the first 9 weeks of Mason's life, I lived in fear every day that he would choke to death in my arms. He choked any time I put him down, even on his belly. His eyes would roll into the back of his head, he would start to turn bright purple, and he would flail his arms around helplessly as if he were drowning. He essentially was drowning every time he refluxed. You see, because of the cleft in his palate, he had a big hole inside his head. There was nothing blocking his nasal passage so every time he refluxed, his throat and nasal cavity would fill up and he would stop breathing. He was still much too little to help himself and the only way we could help him was to flip him over onto his belly and bang on his back, and if that didn't work we'd have to suction his mouth, throat, and nose. This happened about once an hour nearly all day, every day, for the first nine weeks of his life.

I have never been so scared in my life as I was those nine weeks. I remember saying to Jamie:

"What if he dies, right here, in our arms, in front of Andrew and Lia?"

And Jamie responded:

"We are doing everything we can. You have to have faith and trust that we are doing absolutely everything we can."

I began wearing Mason in a sling every minute of the day. It was the only way I could keep an eye on him and still be a mother to my other children. I cooked with him in my arms, napped with him in my arms, and yes, even used the bathroom with him in my arms. I had to, there was no other option. Putting him down meant choking.

Jamie and I took shifts sleeping. I'd sleep from about 9:00 p.m. to midnight and Jamie would stay up and watch over Mason. He'd come get me so he could get some sleep (he worked all day, I was on maternity leave) and then I'd stay up and watch over Mason.

We ended up buying something called a Tucker Crib Sling and that really helped us. If you don't know what it is, and don't feel like clicking on the link, it's this big, foam, mattress-like slope with a baby onsie sewed in. You strap the baby into it and the baby essentially sleeps almost standing up. It is made for babies with acid reflux disease. I found it when I was doing some research online one night and was desperate enough to try just about anything.

The Tucker Crib Sling did help. Mason could tolerate it for an hour or two at a time, which was amazing. He still had to be hooked up to his sleep monitor and he still had to have someone right next to him at all times because he still choked while strapped into the Tucker Sling, but he was able to tolerate it better than anything else we had tried so we considered it a victory. A small victory, but a victory nonetheless. Of out a 24 hour time period, Mason spent probably 5 to 6 hours in the Tucker Crib sling (heavily supervised) and the other 18 hours of the day in someone's arms. We were, quite literally, in total survival mode.

It's funny, so many people said to me during that time: "I don't know how you are still functioning" "you must be so tired" "how can you even walk upright?!" And to be honest, looking back, I don't really know how I did it. At the time, Mason's survival trumped all else. I knew I was sleep deprived past the point that is healthy for a human being but my brain must have tapped into some kind of sleep reserves because I could NOT not function. It wasn't an option, those cards weren't on the table. I had to be on high alert every minute of every hour of every day. Mason had to be protected and I am his mother. Nature and biology dictate that I, above all else, had to protect him. And so with lots of help from Jamie, my niece Kelsey, and my sister Sharon and her family, that is exactly what I did.

Now, while all of this was going on, I was making weekly calls to doctors and nurses asking, begging, pleading, for someone to help. One afternoon I made a phone call to Boston Children's Hospital and somehow got connected to a neonatal nurse who heard the absolute desperation in my voice and finally, FINALLY, we were put on a path that would end this horrific period in our lives.

We were referred to a G.I. doctor at one of Children's Hospital floating centers in Waltham, MA. They did a barium scope and looked at Mason's anatomy to see if there was any abnormality there, besides the cleft, that could be causing these episodes. After determining that everything looked normal, we talked about our options.

I explained that he was held in someone's arms 18 hours a day, that he couldn't be left unsupervised for even 45 seconds, car rides were awful and he couldn't ride in a car without someone sitting in the back seat with him. When he wasn't in someone's arms, he was sleeping on an incline so steep he was practically standing. He was on reflux medicine. There was nothing left to try. The doctor mentioned a drug that she wanted to reserve as an absolute last resort. It was known to have neurological side effects but she said with Mason, the risks of those side effects may outweigh the risk of doing nothing. But before that, she wanted us to try thickening his formula - putting rice in his bottle.

Now, in my 7 years of being a parent, I had done entirely too much research on absolutely everything related to parenting. And what I didn't research, my other Mommy friends did and shared with me. For 7 years I had it drilled into my head that putting rice cereal into a 2 month old baby's bottle is just about one of the worst things you can do. I realize that most of us 30-somethings grew up with our parents giving us rice cereal in our bottles to make us sleep longer but this was 2009, we were smarter than that now! We knew better! Why was this doctor - this Boston Children's Hospital doctor no less - instructing me to do this? Is she crazy?

I battled with myself for about a day and finally, with the help and support of a very smart and insidious friend, I decided to give it a try. I added 1 TBSP of rice cereal per every 2 ounces of formula to his bottle and hoped for the best.

Mason's life changed that day. For the first day of his life, he didn't choke once. HE DIDN'T CHOKE. It was a miracle! He had the most comfortable and peaceful day of his life up to that point and Jamie and I exhaled for the first time in 9 weeks. We were, hopefully, closing the worst chapter of our lives.

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.

Part 6 - A Year in Holland - He's Finally Here!

On June 3, 2009, between the hours of 8:00 p.m. and 11:00 p.m., at a restaurant called Masa, I was wearing two of the only remaining articles of clothing that still fit. I was 37 weeks pregnant and feeling every minute of it. As I hobbled back to the table, I could feel people staring at me. My belly was just so enormous that people had started to stare at me when I went out in public.

I sat down across from my oldest and dearest friend, Colleen, when a woman and her daughter walked up to me and said:

"Excuse me, I'm sorry, but when are you DUE? You look like you are about to give birth any second!"

I laughed because I had just told Colleen a few minutes earlier that strangers had been coming up to me in public, staring at me, and making comments. She didn't believe me.

Colleen and my other friend, Aly, joked that the restaurant was closer to the hospital than my house so if I went into labor, they would call Jamie and have him meet us there. What they didn't realize, then, was just how close we were to that exact scenario. At 4:00 a.m. the following morning, I felt a pop and woke suddenly after a short and restless sleep. My water broke a mere 4.5 hours after I left the restaurant.

It was time.

Jamie ran around like a crazy person getting the kids ready, throwing last-minute items into the hospital bag, frantic, rushing me out of the house. I reminded him that babies aren't born like we see in movies. Labors are usually long and, well, laborious, hence the term. I was in labor with Andrew 24 hours, about 9 hours with Lia, we had plenty of time!

Or, not.

By the time we got to my sister's house a half hour later to drop off Andrew and Lia, I was in full-blown labor. My contractions were about 2 to 3 minutes apart and we felt like we'd never get to the hospital! Despite the early hour, we still got stuck behind a few cars. It was Jamie's job to focus on traffic, it was my job to focus on my breathing.

We got to the hospital at 5:30 a.m. and Jamie ran through the labor and delivery ward, even more frantic than before, exclaiming "She needs a bed, she needs a bed!"

One of the labor and delivery nurses questioned me, "First time Dad?" She thought he was overreacting.

I answered insurance and admittance questions between contractions and I ordered my epidural right away. I had an epidural with both of my other two children and I was looking forward to the serenity and peace an epidural provides during a difficult labor.

40 minutes later I was still waiting - I was in agony! Everything started happening so fast, I didn't have time to worry about the baby or answer any more questions. The only thing I was capable of, in that moment, was focusing on what my body was doing. The contractions came one on top of the other and finally the anesthesiologist came into the room. Serenity now!

I have friends and family who've had natural births tell me when it's time to push, you can't not push. I had never experienced that feeling myself but as I was being prepped for my epidural, I got to experience it for the first time.

"He's COMING!" I shouted to everyone in the room.

"There's no time for the epi, GO GET DAD" was the response I heard come from the fog which surrounded me.

"Wait, NO! I need the epi, I can't do this, I can't do this!" I replied.

"Yes, you can. He's right there. One push and he'll be out, come on, you can do this!"

Jamie rushed back into the room and ran to my side. I pushed once and Mason James was born!

He was born but I didn't hear a cry. He wasn't crying, what was wrong? Why wasn't he crying?

They sucked fluid out of his mouth and throat and finally he began to cry! There is nothing more pure, more beautiful, to human ears than a newborn baby's first cry, the first breath of life.

They laid him in my arms and when I first gazed into his sweet little face, I swear I didn't see a cleft. I didn't see a birth defect. I just didn't see it. I kissed him and all I saw was perfect beauty. All those months of worry, fear, and self-doubt, all washed away in an instant.

"You're finally here" were my first words to my new son.

Welcome to Holland.

Day 2 of Summer Vacation

Ahem.

CanIhaveasnackCanIhaveaplaydateWhocancomeoverHehitmeShehitmefirst!CanIplayWiiCanIplayDSCanIplayMarioCanIwatchSpongebobPleasecanIhaveasnackCanIhavegumCanwegotothepoolCanwestayuplateCanIhavechocolateAndrewinterruptedmeLiainterruptedmefirst!DoIhavetomakemybedWhycan'tIplayoutsideinmypajamasCanIhaveasnackCanwecallsomeoneIdon'twanttoplaywithmysisterIt'snotfairAndrewalwaysgetstousethecomputerfirstIt'shotoutsideIt'sfreezinginhereCanIhaveapopsicleWhycan'tyoubuypopsiclesatthestoreWillyouplaywithusCanIhaveasnackCanIplayMarioGalaxy?

Thank you and good night.

Part 5 - A Year in Holland - Waiting for Mason

After our 11 hour day in Boston, there wasn't much else to do but wait. I am, by nature, a fixer so you can imagine how helpless I felt after being told there was nothing left for me to do but rest, take care of myself and enjoy the rest of my pregnancy.

When we made the decision to have a third child, I remember thinking how much easier it would be now that I was a veteran parent. I wouldn't dwell on, or overreact to, all the little things I did with my first two children. Breastfeeding was going to be a piece of cake. If I had a summer baby, my three wonderful children and I would spend our summer going to the beach, playing in the park, going for bike rides and walks along the bike path. My trip to Italy was completely planned and I was already living it inside my head.

But with the tests completed, diagnosis confirmed, and nothing but time on my hands, I started to think about Holland. I tried to remember that Holland had tulips and windmills. But I still grieved for Italy.

I joined a cleft message board and started reading other families' experiences. I looked at hundreds and hundreds of before and after pictures. I tried to imagine what my baby would look like. When I was honest with myself, I admitted I was terrified that I wouldn't find him beautiful like I did his brother and sister and I cried at the thought. I started telling close friends and family that Mason would be born with a cleft and I knew that their reactions would mimic my own so any time I told someone new, I made sure to sound optimistic and positive, even when I didn't always feel it.

The rest of my pregnancy wasn't easy. On top of the all the normal things women experience during the second half of pregnancy, I carried the added weight of apprehension, fear, and dread. I was scared. I still wasn't sure I was strong enough. I knew the first year of his life was going to be the hardest year of mine. Some say that babies choose their parents. What if he chose wrong?

Every time I asked my husband that question, he pointed to our bedroom wall. On our wall hangs a piece of paper, one of Lia's preschool projects, dated January 22, 2009. She wasn't yet 4 years old and on the day before our first ultrasound her preschool teacher posed the question to her students: When I Grow Up I Want to Be _____________.

Lia's answer, in beautiful, shaky preschool handwriting was: "MOMMY"

(Part 6 coming soon..)

Part 4 - A Year in Holland - Boston Children's Hospital

A brief recap of where we are in the story: I'm 35 years old, with two young kids, and 23 weeks pregnant with a baby boy who is going to be born with a craniofacial birth defect.

After getting the results of our MRI, it was time to head over to Children's Hospital to meet our surgical team. The funny thing was, everyone at Beth Israel hospital acted like meeting a surgical team at Children's was a very normal part of pregnancy. It was all very matter-of-fact for them, meanwhile, Jamie and I felt like we were living someone else's life. What were we doing here? How did we get here?

Up to this point, the only surgery I had any experience with was having my wisdom teeth out when I was 17. My baby wasn't even here yet and I was meeting with a surgical team? Unthinkable, yet, there we were.

If you've ever been to Children's Hospital, you know what a completely humbling experience it is just walking through the front door. There are all these children, these adorable, gorgeous, little miracles, everywhere you look and they are all going through something out of the ordinary else they wouldn't be there. Many of them are dealing with things none of us have ever dealt with, or will ever deal with, in our lifetime. Yet, they are still children. Smiling, playing, laughing, looking at the fish tank, holding a balloon... My heart and my eyes fill up every time I go there, still, and I've been there more times than I can count now.

While we sat in the waiting area of the Plastics division of the hospital, waiting our turn to meet Dr. Mulliken, I wondered what people were thinking when they looked at me with my big pregnant belly. Were they blaming me? Were they pitying me? I know, now, they were thinking none of those things but that wasn't the first or last time I had those thoughts during my pregnancy.

We sat in the waiting room for TWO hours waiting to see Dr. Mulliken. Jamie was stressed about the kids and traffic, I was tired and hungry and just wanted to go home, when this cute little Hispanic girl came in with her Dad and big brother. She looked to be about a year old. She was tiny! She had two little piggy tails on top of her head and she had on the absolute smallest Reebok sneakers I have ever seen! She was sitting in a stroller and as I was looking at her, I noticed the tiniest scar on her lip. This was one of Dr. Mulliken's patients! This beautiful little girl was born with a cleft and here she is, repaired and gorgeous! I couldn't help but smile at her and I couldn't take my eyes off her.

Finally they called us into a room. They gave us some reading material and then had us watch a 20 minute video about cleft lip and cleft palate, featuring cleft-affected children and families - patients of Dr. Mulliken. Jamie and I watched the video in silence. When it was over, Dottie, Dr. Mulliken's head nurse, and Dr. Mulliken himself came into the room. They asked us what we thought of the video. We looked at each other, kind of shrugged, and said something very benign like "it was fine."

They said, "Well, weren't you moved?" The correct answer, of course, was Yes.

"Um, not really." I told you hormones are a bitch, right?

After making a sparkling first impression with our future surgeon, we then began to talk about what our future holds. Dr. Mulliken went into lots of technical detail, giving us a timeline of what would happen when, after the baby was born. It was like drinking from a fire hose, we couldn't really process it all. Then he shook our hands and told us he'd see us after the baby was born. Nurse Dottie stayed behind and talked with us more and asked us if we had any questions. We talked about feeding and she showed us the Medela special needs bottle nipple that was designed for cleft-affected children, while explaining all the different scenarios and obstacles we might face trying to feed our son. Again, we were overwhelmed.

We left Children's Hospital with a bunch of paperwork, a $20 Medela bottle nipple, instructions to call Dottie when the baby is born, and an entirely new perspective on raising children, parenting, and life.

(part 5 coming soon..)