AYIH: Part 11: Surgery

I haven't posted in a while-- Life, you know.. The last entry ended an hour before Mason's first surgery on October 27, 2009.


We got Mason dressed in his teeny, tiny hospital johnny and walked him around the pre-op area to keep him distracted. He hadn't eaten in about 12 hours but he was allowed his binky, thank goodness. At about 7:30 a.m., the surgical team came in scrubbed and ready, and the nurse held out her hands, waiting for me to hand her Mason.

I did, it wasn't dramatic on the outside but I was plotting plans of escape on the inside. If I grabbed him and ran, would it do more harm than good? Sigh.. yes.

So I did what I had been mentally preparing myself to do for weeks: I handed my 4 month old baby to a nurse and watched her and the team walk away into the operating room. They escorted Jamie and I to the waiting area and I cried the whole way there.

In the waiting area, the nurses told us they would come out every 90 minutes and give us an update on how Mason was doing. Thank God because even if they weren't, I was going to ask anyway. Jamie and I spent the next few hours talking, playing cards, eating lunch. I was aware of every minute that passed.

About halfway through the surgery, the pastor of our church, Pastor John Zachery, came to visit with us and to pray for Mason. He asked beforehand if it would be alright and I told him it absolutely would be. He stayed with us for 3 hours, talking about our families, talking about golf. Jamie got so into one of his golf stories that he dropped the F-bomb - in front of Pastor John! Jamie was horrified and Pastor John LAUGHED. He said his goal in visiting us was to help us pass the time and to try and relax. He said Jamie's slippage of the F-bomb was good because it meant Jamie was feeling relaxed - mission accomplished!

Pastor John stayed with us until the surgery was over and waited for the surgeon to come out and tell us everything was okay. I thought about that after the fact, what it meant, that he waited. I didn't love that particular revelation, but I was grateful all the same.

Dr. Mulliken, the amazing and wonderful surgeon and artist, came out after a little over 5 hours and gave us the news on Mason. He was pleased, extremely pleased. He is one of the best cleft surgeons in the world. People come from all over the world to have Dr. Mulliken perform their children's craniofacial surgeries. He takes amazing pride in his work and I could tell he was proud of how things turned out. He gave us all the technical details of the stitching and how he brought the lip together and re-formed the nose. That is when I realized Oh! my baby had a nose job! I always knew fixing the nose was part of the process but it never really occurred to me in those terms before.

He told us Mason had over 100 stitches! He gave us a quick run-down of how we were supposed to clean the lip every day and apply the steri strip and about how long the Logan's Bow would have to stay on. I admit I was half listening because all I wanted was to see and hold my baby boy. And I knew Nurse Dottie (also amazing) would review it with us again before we left.

Finally, he started walking towards the post-op area - we were going to see our son's new face. We were so nervous, was he awake? Was he in a lot of pain? Is he looking for us? Does he still look like Mason?

We walked into the post-op area, turned the corner and there was Mason: all swaddled, hooked up to all kinds of wires, the Logan's Bow across his face, the breathing tube pointed towards him - different, but still Mason. I was relieved, he looked beautiful! I just stared at him, amazed and stunned at the transformation. But he was whimpering. His eyes were closed, but he was whimpering the saddest sound I've ever heard. Every part of me reacted to that sound and I had to hold him.

They allowed me to hold him and they helped get him into my arms, maneuvering all the equipment so none of the wires fell out. He was still whimpering but I started talking to him. I started singing to him and kissed his forehead. And I just stared at his face.

Since I found out about his cleft at my 18 week ultrasound, I had anticipated and wondered about this moment. And now it was here. One obstacle overcome.

AYIH: Part 10: The Face I Fell in Love With

Mason's first surgery, his lip surgery, was scheduled for October 27, 2009, when he would be about 4.5 months old. After getting the choking episodes under control, our main goal in life was to keep him healthy so we wouldn't have to reschedule his surgery. Keeping a little baby with two older siblings who are in school healthy during flu season - this was going to be interesting.

We didn't do much or go many places during those months leading up to his first surgery. We spent time a lot of time at home, together, as a family; we bonded with our baby, the kids bonded with their brother. We memorized every inch of his sweet little face because we knew it was going to change and we'd lose it forever.

For this blog entry, I really think pictures will tell a better story than I could ever write.

June 4, 2009


Love at first site








A good shot of the cleft in his palate


1 month old - those eyes..



2 months old


Look at that gorgeous smile!




4 months old




This last picture was taken at Boston Children's Hospital about one hour before surgery. I was so sad to take it, knowing it would be the last one where he looked like this. It was truly bittersweet.

We fell in love with this face, all of us. As we got closer and closer to the surgery date, it became harder and harder to accept that this face was going to change. In the days leading up to Mason's surgery, Andrew, who had just turned 7, came to me very upset. He said:

"Mom, I don't want Mason to have his surgery. I love the way he looks, I don't want him to look different."

I explained to him that Mason wasn't having his surgery because of the way he looked, but so he could learn to talk and eat the way we do. He seemed satisfied with that answer but I admit, I shared his sadness. I didn't want him to look different either. He truly was perfect in our eyes.

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

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.

A Year in Holland - Part 8: 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.

A Year in Holland - Part 7

"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.

A Year in Holland - Part 6

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.