Matthew's Team: The Story of Matthew (4th and final installment!)

Welcome to Holland
Part 1
Part 2
Part 3

Matthew ended up staying in the hospital for 18 days after his birth. Some premature babies, the doctors explained, arrive acting like full term babies, until the reality of life outside the womb catches up with them. So it was with Matthew. He needed time to adjust. His only medical issue was that he was not gaining weight quickly enough. Nursing him required so much of his energy that he was expending more calories than he was taking in, which made him very sleepy. The frustration of feeling like I was not able to nourish my baby was a familiar one, as was the stress of having to vary his methods of feeding. Within the first few days, Matthew went from being nursed exclusively, to alternating between nursing and bottle feeding, to having to be gavage fed (milk was pushed through a tube that went up through his nose and down into his stomach). I often felt that the length or our stay at the hospital would ultimately be determined by my ability to feed Matthew, but the wonderful doctors and nurses reminded me otherwise. It was all about his readiness to face the world.

Looking back (now 6 months later!) I am still in awe at what a gift it truly was to have that time in the hospital with Matthew. It was often grueling and difficult to be away from home, especially from Isabella, who had been my constant companion for the previous 3 and half years. The bonding time with Matthew, however, was invaluable. The first 18 days of his life were slow, quiet, and had few distractions.

Although I was discharged 3 days after having Matthew, I was allowed to stay on hospitality for the entire time. I lived my life in 3 hour cycles: I would feed Matthew (which could take up to an hour), run to the cafeteria to grab some food, make a few phone calls to coordinate schedules and future doctors appointments for Matthew, and then it was back to the nursery to feed again. Mark and Isabella or Isabella and my mom would come almost daily to visit and share a meal.

In addition to his work of eating and sleeping, Matthew was kept busy with visits from various doctors to monitor his progress. A physical therapist came daily to massage his legs and feet, and to do various exercises with him to improve his muscle tone. A team of podiatrists came to examine his feet, and he had to have an ultrasound done of his kidneys. A pediatric cardiologist lugged a huge machine across the hospital and into the nursery to do an echocaridogram of his heart. And then there was his social schedule. I would often walk into the nursery for a feeding and a nurse would be holding Matthew. I would ask if he’d been fussy. "Oh no," she would tell me. "I just couldn’t resist picking him up." A baby can get used to that kind of attention.

Although fairly monotonous in routine, life in the hospital was far from uneventful. A few days after Matthew was born, a water main broke in a construction mishap, flooding the maternity floor and disabling the security system. Our wing was filled with construction workers, security officers, and hospital administration, who stopped by several times to apologize for the inconvenience. On another night, while I was in my room eating dinner and watching bad TV, a small earthquake jolted our side of the hospital. And then there was the incident where the nurse assigned to Matthew forgot to disable his security tag when moving him from one area of the hospital to another, causing a "Code Green" alert. All exits were blocked by security and the floor was closed down until the situation was resolved. (At the time I was eating lunch in my room and overheard the code being called over the PA system. Hmmm... I thought to myself, as I munched on my salad. Haven’t heard that one called before. Hope everything’s ok... )

One of the more enjoyable parts of my experience in the hospital was interacting with the team of professionals who took care of Matthew. The doctors met with me daily and provided advice and reassurance. It was the nurses, though, who kept me sane. There is a kind of sisterhood that exists among them (especially the night crew) and I got to be a part of that to some degree, simply because I was always around. They slipped me the code to the nurses’ kitchen, and when the halls were empty, (because I checked) I would briskly punch in the numbers on the keypad and enter unseen to refill my water pitcher or get some Saltines. In exchange, I became a bit of an informant, keeping track of their whereabouts and reporting back any findings: “You looking for Chris? Oh yeah, she left for the CPR training about a half an hour ago and was going to look for you there. She couldn’t find you so she went home.”

The nurses also taught me how to be self sufficient in the nursery so I could come and go with little interruption. I would unhook Matthew from his monitors, take his temperature, report his diaper, (they measure everything in and everything out) warm his milk, and feed him. I would then report the ounces he took in, hook him back up to his monitors, re-swaddle him, and check out. The nurses generously took over some of the night feedings so I could get some sleep and even granted me a few nights off to go home and be with the rest of my family. While I know they are trained to do what they do in their profession, I also know that it must take a special kind of person to care for others, especially babies. The nurses were kind, supportive, and thorough, and their concern was genuine.

Lori was my favorite instructor. She never seemed too busy to sit with me and help me with nursing techniques.
Nancy was from the Midwest (I could tell by her accent) and wore Grey's Anatomy scrubs, which I thought was funny-a real nurse outfitted in scrubs from a TV show about fake doctors. She said they were the most comfortable of all of them, so I guess the fake doctors know something useful. Nancy was so kind, always smiling, and set me up to give Matthew his first bath.

Peggy was my biggest advocate. She loved to talk and what she said made an impact. After two weeks of changing feeding plans for Matthew, Peggy made the sensible declaration that it was time to exclusively bottle feed him and let go of nursing for a while, something not easily surrendered by nurses. For me, it came as a welcomed relief. Matthew had had some success with a special bottle known as a Haberman bottle, designed for babies with cleft palates. Although his sucking reflex was strong, the bottle allowed Matthew to get more in him with less effort. It was also Peggy, who reminded me in my moments of stress, that there was no such thing as a bad day for Matthew, given the potential medical problems he could have faced. While some feedings were a real struggle, this particular complication was not a serious one in the scheme of things. Agreed.

My favorite shift was the night crew, a group of nurses mostly made up of women from the Philippines. All of them had grown children, which is probably why they could work the night shift. I endured the middle of the night feedings largely because of them. The nursery was quiet, the lights were dimmed, and these women would cheerfully go about their work taking care of the babies, all the while smiling and laughing--even at 3 am. Zeny (holding Matthew) had such a calmness with him. I would watch her as she was able to get Matthew to stay awake to feed him from his bottle, something I was initially not able to do. He responded to her and I felt it was because she was so soothing. Vinda (to the the left of Zeny) has some history with our family. She was one of the nurses who cared for Isabella. She is one of the reasons we settled on the name Isabella, because it is her granddaughter's name. Vinda was one of the nurses praying for Matthew on the night of his birth. One day I arrived at the nursery to see a beautiful little plaque inscribed with a prayer and a picture of a guardian angel sitting in M's bassinet. Vinda had bought it, and probably dozens more like it for all the babies she cares for, somewhere near the Vatican. I thought it was so sweet that Matthew received one. I noticed a couple days later that Matthew was gazing at that guardian angel. It is one of the most fascinating things to see a newborn begin to figure out the world around them. The smallest things are remarkable--like focusing on an image--and that was the image I saw Matthew notice for the first time.
Maria gladly took over night time feedings on occasion or watched over Matthew so I could take a break or get some food. It's so nice to be taken care of, too.

Our first family pictures: Big sis, Isabella.


When you have a baby at Kaiser hospital in Vallejo, CA, you get a big dinner of your choice brought in on a table with a white table cloth, battery operated luminaries, and a small bottle of Martinelli's . Mark thinks this is why our health insurance costs are so high. I thought it was one of the best dinners I'd ever eaten. (I was on a liquids-only diet for over 24 hours prior to having Matthew, so everything I ate after that tasted pretty darn good.)
My babies.
Isabella thinks hospitals are pretty awesome. Each time she visited, we'd go into the nurses' kitchen to get her her own pitcher of ice water (with a straw!) and some graham crackers. Then it was back to the room for drawing time or cartoons on TV. The beds came equipped with many buttons and dials, all of which fascinated and delighted her to no end. Baby? What baby? Luckily for Isabella, the world still revolved around--well, her.

Matthew will have something to say about that one day.
On B-Day + 17, Matthew was finally released from the hospital. He left weighing 6 pounds,  9 oz. and was eating from the Haberman bottle like a champ! He had a weight check done a week after arriving home and was steadily gaining almost an ounce a day. A new chapter of our family's life was finally beginning at home. HOME!!

**Post Script (and this one's important):
When I began writing these posts about Matthew, I consulted with Mark about how to go about writing them. Should it be from our perspective? Or should it come from my experiences as a mother, etc. ? Since this blog has always been my baby, he agreed that it should come from me. In doing so, however, I have not given Mark his due credit in how he has handled this experience. Maybe one day he'll write it down, but for now I have one last story to share that is a testament to Mark's character as a husband and father.

While I was in the hospital, Isabella became sick with croup, a virus she well-acquainted with. This particular time was more severe than in the past; her cough being so forceful that she was having some trouble breathing. Mark had set her up in our bedroom, keeping an eye on her through the night, giving her water every time she woke up coughing. At one point, in the middle of the night, he got dressed in warm clothes, wrapped Isabella in a blanket, and took her out onto the porch. They sat out there snuggled up in a chair, allowing the cold air to help ease her breathing--and they looked at the stars. The following night I left Matthew in the care of the nurses so I could come home. Mark slept on the couch so I could sleep close to Isabella. Mark had carefully laid out his warm clothes and told me to wake him up at any hour if her cough worsened. When Isabella noticed his preparations, she excitedly asked him if he could take her out again that night to look at the stars. I love that she'll probably never remember how sick she was, but that she will remember the night her Daddy took her out on the porch, in the middle of the night, to look at the stars. And I love Mark.

I am one lucky girl.

Luck o' the Irish

The Leprechauns came...

to make us breakfast.
A shamrock pancake for Isa
and some Lucky Charms. She quickly learned just how magically delicious they are--at least the marshmallow part.

After cleaning up the mess the leprechauns left, we went off to explore some puddles that were (finally!) created from all the rain.

And stopped in to visit the cow, of course.
Our own bit of Ireland...
with Canadian geese tourists.
St. Patty's Dinner at the Michie's.
Ally-BFF
Doing an Irish jig, which ended in collapsing on the floor, as I'm sure all Irish jigs do.
Good times.

May you always have walls for the winds,

a roof for the rain, tea beside the fire,
laughter to cheer you, those you love near you,
and all your heart might desire.

- Irish Blessing

But the winner for the best Irish quote of the night goes to...

When we drink, we get drunk.
When we get drunk, we fall asleep.
When we fall asleep, we commit no sin.
When we commit no sin, we go to Heaven.
So, let's all get drunk and go to Heaven.

Absolute Perfection: The Story of Matthew (Part 3)

When I was 34 weeks pregnant with Matthew, one last potential complication had to be addressed. Earlier in my pregnancy I’d had a Level 2 ultrasound done that revealed that Matthew had club feet and that his right kidney was located in his pelvis. It also indicated that there may be a problem with his umbilical cord. The doctors found a dilated vein in the cord, a possible life threatening issue for Matthew, in the later stages of my pregnancy. A blood clot can form in the dilated vein causing the sudden death of the baby. Because this news had been lumped in with everything else, and because it was an issue that wouldn’t even be addressed until the end of my pregnancy, it honestly didn’t phase me. Too many other things could go wrong long before the vein would be a problem, if it was to be a problem at all. As the weeks progressed in my pregnancy, however, my body was holding up amazingly well, and Matthew was thriving. Babies with Down syndrome are typically smaller in size, and Matthew was consistently 2 weeks behind the average baby until he suddenly had a little growth spurt and caught up by a week. He was also a very active baby, starting his day around 4 or 5 in the morning. I felt confident that I could take him to a full 40 weeks and I was pretty determined to do so. Experience with Isabella had opened my eyes to messing with nature.

Although I technically carried Isabella to term, my labor was induced when I was 38 weeks pregnant due to low amniotic fluid. When she was born, she didn’t cry because she wasn’t breathing. They laid her on my belly for a matter of seconds before whisking her away to resuscitate her. The nurses and doctor worked on her for 13 minutes. Her Apgar scores, the assessment the doctors use in the first few minutes of life to determine responsiveness, breathing, muscle activity, etc. were very low: 1‘s and 2‘s (on a scale of 1-10). She developed a hole in the sac of air around her heart, mostly likely due to the resuscitation, and had to be put on oxygen to help her breathe until the hole healed. The tubes and wires helping her breathe made nursing and bonding with her very difficult. She also developed jaundice. Isabella was in the hospital for 8 days, but for all intents and purposes, she was a healthy baby. As a newborn she was colicky and hard to settle. She developed acid reflux and had to be put on horrible medicine. She was a slow weight gainer, which caused an enormous amount of emotional stress for me. (There is nothing more fundamentally frustrating than feeling like you are unable to nourish your own baby.) Once as an infant and then again as a toddler, Isabella suffered febrile seizures due to fevers that spiked too high, too fast. Her pediatrician attributed the seizures to an immature nervous system. Although I will never know for sure, I have always wondered, had I been able to carry her even a week or two longer, could some of her early difficulties been minimized or even prevented?

Matthew’s diagnosis of Down syndrome automatically put him at risk for many serious medical problems at birth. 50-60% of babies born with Down syndrome have major heart defects, some requiring open heart surgery. Other birth defects involving the gastrointestinal tract can cause problems with eating and digesting food. They are more prone to epilepsy, sleep apnea, infections, and blood problems. Eyesight and hearing impairment are quite common. We knew only a few things about Matthew’s health during my pregnancy. An echo cardiogram showed that he had a good, strong heart (an absolutely bright spot of news!). His misplaced kidney seemed to be functioning. Once he was born, his feet would require several weeks of casting to correct their position, but seemed to be an easy fix. Many famous athletes, we learned, were born with club feet. No other structural defects were visible on the many ultrasounds I had. Although this was reassuring, there was still a lot of concern; many of the difficulties wouldn’t be known until after he was born.

Prematurity, on top of Down syndrome, is what really scared me. And if anyone was at risk of arriving prematurely, it was Matthew, because of me. Needless to say, I was doing everything the doctors advised me to do to prevent preterm labor. In addition to my check ups I was receiving weekly shots of progesterone in my hip. I was also called once a week by an RN who monitored any signs of early labor. And of course, I was modifying all my physical activities. So it came as a bit of a jolt when the perinatologist, the specialist who began monitoring the dilated vein in my 34th week, recommended that my labor needed to be induced right at term- 37 weeks- one week earlier than I had been induced with Isabella. The comfortable, confident place I’d settled into was once again turned on its head.

The dilated vein had grown considerably during the weeks of my pregnancy, but there was absolutely no evidence of a blood clot. From my 34th week on, I had to have one ultrasound and 2 NST’s (non-stress tests) each week to determine how Matthew was doing. Although I struggled with trusting my gut feelings throughout my pregnancy, I felt at this particular time, that Matthew was doing just fine. In fact, I really grappled with the medical advice we’d been given. Any and all medical intervention was ultimately up to us. We could do nothing, and risk Matthew’s life, or we could do something fairly aggressive, and risk his life, or the quality of it. What do we do? What was right? I dared myself to question the doctors’ decision, even though in the end, Mark and I both felt that we ought to trust their expertise. It was Matthew, however, who really made the decision for us.

During an NST in my 36th week, the RN monitoring Matthew picked up on a deceleration (“decel”), a dip in his heart rate during a contraction. Decels are not worrisome unless the heart rate dips too low. After observing a second deep decel during another strong contraction my doctor told me I’d earned a trip to the hospital. The decels were not necessarily connected with the dilated vein; it was more likely that Matthew had just rolled over on his umbilical cord, causing a temporary interruption of blood flow. My prediction was that I would go to the hospital, be observed for a few hours, Matthew would change positions, and I would be sent home. I didn’t even bother to pack my bag. Shortly after I arrived at the hospital, a third decel occurred, and suddenly my bedside was flooded with nurses ready to turn me over to force Matthew into a different position. It was then that I realized that my plans for Matthew’s arrival were irrelevant. I had to prepare myself. Although the third decel turned out to be the last one, the doctors agreed that given all the circumstances, Matthew’s Down syndrome, the dilated vein, and the occurrence of decels, it was time to induce my labor. I was 36 weeks and 3 days pregnant.

Hours later, and well into the middle of the night, that same night, Matthew’s heart rate remained stable, and he was showing absolutely no signs of stress. Once again, the questions about how much we should be intervening crept in. Could going home to give Matthew a few more weeks be an option? The doctor on call that night, Dr. Oliver, came to my room at 1 in the morning and talked with Mark and I at length about our concerns. It was an unexpectedly profound conversation and we felt afterward that he and the other doctors had made a very careful decision regarding Matthew’s well-being. Still, he conferred once again with 5 other doctors later that morning and returned to tell us that all felt that the decided course of action was the right one. We were so appreciative of the attention they were giving our situation. Mark and I finally felt peace of mind. I prayed one last prayer as a mother-to-be: that any deficiencies that Matthew might experience due to his early arrival might somehow be made up.

My labor progressed and I asked to have an epidural. By the time I was ready to push a few hours later, however, I can tell you with certainty that the medication had all but worn off. I felt the full extent of pain with each contraction-something I did not experience with Isabella. Oddly enough, I couldn’t feel myself push, so apparently the epidural was working in some capacity. The only push I felt was the very last one as Matthew finally left my body. The relief of pain was instantaneous and the feeling of accomplishment was exhilarating. But it was the sound of Matthew’s hearty cry, that filled me with an indescribable emotion. It was the sound I’d hoped to hear from Isabella at her birth, but didn’t. It was a sound, I was later told, that is not necessarily typical of a baby born with Down syndrome. Matthew Alexander Holsten was born on October 8, 2011 at 8:08 p.m.

I fell in love with Matthew the moment the doctor placed him on my belly. The bond I’d prayed for my whole pregnancy, and worried I might not be able to feel, came effortlessly. He was mine. I was able to hold and cuddle him for at least 20 minutes before the nurses took him to finish cleaning him up and take his measurements. Matthew’s Apgar scores had been 8‘s and 9‘s. He weighed 6 pds. 4 oz., and he was 18 inches in length. His club feet were minimal in severity at best.** He was plump, pink, and perfect. Absolute perfection.

A few nights later, as I visited the nursery to feed Matthew, Vinda, one of the nurses confided in me some things about the night Matthew was born that I hadn’t known. She said that all the specialized equipment had been warmed up and ready to go and that there was even extra staff on hand to assist with any complications. She told me that many of the nurses were praying for Matthew and said how relieved they felt when they learned that none of it, the equipment nor the extra hands, were needed. Once again, my heart was overcome- I mean, I thought it might just burst. Despite having Down syndrome and being premature, Matthew required no special medical attention-not even oxygen to help him breathe. (Did I mention that he was perfect?) But more importantly, he was valued. Matthew’s life was important. He had only been in the world a few days, and he already meant something wonderful to so many people.

{**Spoiler Alert: During our stay at the hospital Matthew was visited daily by a physical therapist who would stretch his foot muscles and who taught me how to make a soft brace out of velcro strips for him to wear to keep his foot muscles flexible. He was also visited by a team of 3 (young) podiatrists who diagnosed him as having a classic case of club feet. Soon after we left the hospital, however, he was seen by a pediatric podiatrist, who in less than 2 minutes of examination, determined that the curvature of his feet was due to positioning in my body, not an actual deformity. Matthew did not have club feet and therefore required no medical treatment.}

Our Big Backyard

How Do I Love You...

Let Me Count the Ways...

I love how you're so busy, even when when you watch TV. You find treasures in my closet to look just like me.
I love it when you read yourself to sleep at night. You fool me into thinking you're awake when I come in to turn off the light.

I love to see the surprises that pop up during play. A head of garlic on your train table...
trains "napping" in the cupboard when I start my day.
I love that you have found your "spot" and do it your own way; 'cuz going potty in the great outdoors, is totally okay.

2011 End of the Year Festivities

The first time I did this post, it got messed up. Here's my second attempt. Dad's B'day: Cute grandkids, galette, and a disappointing Cal bowl game. (I'm sure, like every year, he wished for Cal to make it to the Rose Bowl-next year- before he blew out his candles).
Blueberry-Blackberry Galette. It's too bad Dad's favorite dessert is made with summer berries. A Kumquat galette would be far more economical.
It took everything to keep Matthew awake to take this photo. For the record, his eyes are open. Poor little guy.
New Year's Eve 2011: Isabella decorates the table for our Fondue party.
Everyone gets an almond on their plate. You'll have to ask Isabella why.
This was Isa's first fondue. She dipped the bread, lost the bread in the melted cheese, and then dipped another piece of bread and lost that one too. She never actually tasted the fondue--even when we rescued her bread pieces for her.

Dancing with Papa until we went home and went to bed--at 10 pm. We know how to do New Year's right.
Isa's first day of Primary, January 1, 2012 (Sunday school class for almost four year olds). A beaming Sunbeam.