Saturday, December 25, 2010
Thursday, December 23, 2010
Sunday, December 12, 2010
Pouty Face
I see this pout more than I used to. I realize this will likely change, but right now I think it's so cute.
When something doesn't go her way she certainly lets us know.
Yes, she is about to turn 2, I guess that probably has something to do with the matter.
Monday, December 6, 2010
Wednesday, December 1, 2010
Snug as a Bug ...
... in her winter hat and hoodie, walking around the house with one of her favorite things ... the remote.
Tuesday, November 30, 2010
Little Spud
Can you believe it's just 8 weeks until little spud's estimated arrival? ...just one month after Maryn turns 2!
No, we don't know if it's a boy or girl. Of course we want to know ... we are so excited to find out, but we are waiting.
My younger sister is due with her 2nd in late March. She's having another little boy and we are all so excited. So, I did get a chance to buy a gendered baby gift... for her ... so fun.
I honestly didn't think I could have such a different experience with this pregnancy- but that has certainly been the case.
I was miserable with "all day sickness" for about 6 months when I was pregnant with M. With this one there was a little nausea at the beginning, but it was more of an annoyance than anything -definitely doable. Smells haven't bothered me, I'm not as swollen (knock on wood) which means no carpal tunnel and my shoes still fit, and I've hardly had any headaches.
Complete exhaustion and feeling physically uncomfortable best describe this time around. My back started hurting much earlier, I'm out of breath often, I recently started experiencing heartburn on a regular basis and my skin is much drier and itches with an intensity that I've never experienced.
Of course I've been followed much more closely this time around. With M I only had 2 ultrasounds. The first at 9 weeks and the second around 30 or 32 weeks just to check positioning and estimated size.
Yes, complete ACC is typically visible on an ultrasound (partial ACC could be missed) and would likely have been seen in Maryn's case if the ventricles of the brain had been measured. I can appreciate that there are cases when it's best to know a condition ahead of time. For us ... personally, no, I'm not upset that this wasn't caught before she was born. A number of people that have asked have been shocked by this. I'm actually thankful. The end result would have been the same only we would have been sick with worry for 4 & 1/2 more months. When you feel like you've been to hell you don't want to extend your stay. And having heard many other stories from parents of kids with ACC who did find out earlier, the scared out of your mind level would have likely reached unbelievable proportions. No one pressured me to have an abortion (which happened to a number of parents) or told me my baby might not survive until birth. We didn't spend the last months of my pregnancy wondering if she would be able to breathe on her own, or ever be independent. Instead we spent those months eagerly anticipating her arrival blissfully unaware of the challenges ahead.
None of the plethora of M's genetic tests have suggested an inherited component, but we may never know for sure. That being said it made sense to take a closer look this time around.
This li'l spud has been on camera 4 times so far with at least one more performance scheduled. Twice now spud has been checked for ACC and various other things. And although there can never be any guarantees with this sort of thing, at this point they haven't found anything concerning.
Next week is spud's 5th ultrasound.
and it feels good to say that number 5 ... is just to check positioning and get an estimated size.
Can't wait to meet you little spud!
Tuesday, November 9, 2010
Monday, November 1, 2010
M's First Trick or Treat
Last Sunday was the first time Maryn went door to door on Halloween. She wasn't walking last year and it was very cold so we decided against it.
This year we hadn't put too much thought into a costume. M has a SPIO (looks like a unitard) for physical and occupational therapy and her daycare provider remarked once how she looked a bit like a mime when she wore the pants and shirt together. Perfect, we'll just paint her face and she'll be a mime.
The week of Halloween came and I saw the forecast for Sunday. It looked like it would be sunny, but pretty chilly. I started rethinking the mime. As luck would have it, that Friday I had lunch with a co-worker (at a yummy Thai place I didn't know existed). As we left I noticed the consignment shop a couple stores down had their Halloween costumes 1/2 off. Eeyore for $6 --cheap, easy, and WARM!
We started the day at the Children's Garden and after a late afternoon nap it was time to hit the streets. First we headed down our short street, M pushing her shopping cart with her trick or treat bag inside. Our first few stops were fun. She'd look at the offered bowl of candy, at us, and back to the face of the neighbor. We thought, okay, we'll choose for her and she can put it in her bag. Nope, she'd promptly toss it back into the big bowl of candy. How curious this process must have seemed to her. We'd chat with the neighbor a bit and then head to the next house. She kept looking back over her shoulder at the previous neighbor's house probably wondering why we were leaving so soon.
Once we hit the few houses on our street we drove the mile over to her daycare provider. She had set up a table on her porch with about 8 different selections of full size candy bars, packs of gum, snack packs, dog treats and baby food jars for the little ones. M was so excited to see Ms. Jo and probably felt a bit more comfortable. She reached for a Milky Way and dropped it in her basket. She then proceeded to go right down the row ... the next Milky Way, clump-- into her basket. She definitely has the hang of it now and hopefully next year she'll actually be able to eat some of her loot.
Sunday, October 31, 2010
Saturday, October 30, 2010
Box Play
Cousin O & Aunt Niek were up for a visit last week during their fall break. As usual Maryn followed O around like a little puppy.
He was so sweet to let M borrow his shopping cart. Next to the dump truck it's her favorite thing. And bonus ... it keeps her occupied so mama and dada can get some yard work done.
It was a short visit but they had a lot of fun together and we're so thankful they could make the trip.
We miss you guys!
Wednesday, October 27, 2010
Toddling
Last week was a big one around here. Maryn decided that she is now a walker. The video begins with cart pushing and ends with a little independent toddling.
If you look closely you'll see her favorite toy, a dump truck, in the cart. She does have a cute baby doll, but refuses to let the baby sit in the cart. Anytime I put the baby in the seat M promptly tosses her to the floor.
.
Wednesday, October 20, 2010
PostBirth Story - part II
The morning after the MRI results Mike and I walked into the NICU for her second morning feeding to find Dr. B, the Pediatric Geneticist. She was glad to see us as she had some questions about our family/medical histories. She measured our heads, the distance between our pupils, and generally looked for possible genetic clues in our physical traits. Sensing the mix of exhaustion and despair in the air she asked plainly, “Has anyone explained the huge range of outcomes with this diagnosis to you two?”
“Range? What?”
She proceeded to tell us that while some with this condition have severe and profound mental and physical handicaps, others go on to live normal lives. She explained how occasionally an older adult may have an MRI (perhaps to check their brain after a fall/ accident) only to find they’ve had this condition their entire life and no one knew. She also explained that per her evaluation and our family histories, she didn’t see any indication not to be hopeful. Although Maryn had already had her chromosomes checked and the results were normal, Dr. B explained the original panel was more generic and she wanted to run some additional checks.
The pediatric neurologist stopped by later that morning. He echoed Dr. B’s sentiment. While Maryn would most likely be delayed in meeting her milestones it didn’t mean she couldn’t eventually catch up. However, a diagnosis of ACC did put her at a much greater risk of developing seizures. He explaned that an infant MRI is not as clear as one of an older child so there was detail we weren't seeing that could give us clues about what her future holds. Additional brain anomalies would be an indication that she would likely have more severe challenges. But, we couldn’t see this now and it was too early for a prognosis. Only time would tell.
After a nice long talk with the new neonatologist that day we were starting to feel some hope. Maybe her prognosis wouldn’t be all doom and gloom like we were initially led to believe (in all fairness by people who just didn’t know much about the condition or at least the range of outcomes). This crazy rollercoaster ride had certainly changed pace again, but what we didn’t realize then was that it was just a short lull before the next big drop off.
Mama discharge day came and it was bittersweet. I was excited by the thought of leaving the hospital environment, getting into my own clothes and taking a shower at home, but it was so sad that she wasn’t coming with us. Thankfully it wasn’t far from our house, so we continued to be there for most morning, afternoon, and evening feedings. The inevitable routine of daily life slowly crept back in. We started referring to the NICU as her apartment. The joking helped relieve some of the emotional tension and anxiety that was always lurking around us. “Hey, what do you say we head over to the baby’s place for dinner tonight?” “Yeah, what should we bring?”
Most evenings we braved the freezing cold to visit her for her late evening feeding. As usual, this particular night, Mike dropped me off at the door and went to park the car in the garage. He actually beat me to the NICU, though, as I had stopped to get some water. When I arrived he was standing in the waiting area. Normally he would have washed his hands and after a quick call been buzzed right in. “What’s up?” I asked. “They asked that we wait out here until her nurse gets a chance to come out to chat.” That’s strange, I thought, but it didn’t occur to me at that point that something could be wrong. Nurse A came out a few minutes later.
“Your daughter woke up earlier than normal and appeared hungry so I started feeding her. While drinking her eyes begun to rhythmically blink and then her arms and legs matched the rhythm in sharp jerks. She had had a seizure.” We both immediately sat down, fear taking over once more. “She is resting comfortably and is receiving medication that should prevent her from having another episode. -How is it we were back in this state, again, so quickly?- The medication will also likely cause her to be sleepy, so she probably won’t wake up while you are here tonight.” But we were just starting to feel a little hope.
“Do we think this is related to her ACC?”
“Yes.”
Devastation. The neurologist had given indications that seizure activity could be a sign of more problems. Were we now headed in a different direction from what we were hoping for? We walked into the NICU. Maryn was asleep on the other side of the room in a different bed hooked up to tubes and monitors with a huge dose of Phenobarbital coursing through her veins.
Her neurologist was on vacation and would be unavailable for a couple of weeks.
The bloodwork normally run after a seizure came back quickly and we heard the news early the next morning. They weren’t expecting any of her levels to be out of the ordinary because they had checked them not too long before, but they were wrong. Her calcium levels were dangerously low.
The next day when I arrived alone (Mike had to work that morning), Maryn's head nurse asked me if I had been taking my pre-natal vitamins and getting enough sun near the end of my pregnancy. This floored me. How this seasoned nurse could look in the face of a tired, scared first time mom and conclude it was okay to ask that question was unfathomable. This wasn't the first time she had directed a loaded comment my way, but it wasn't until then that I realized she was either totally clueless or without compassion. Ultimately, she was blaming me for my baby's seziure and she lost my respect in that moment.
Later, the neonatologist told us they sometimes see seizures in otherwise healthy infants who have difficulty transitioning from the womb. Levels may be off as the infant’s body struggles to take over where the mother’s left off. However, this type of problem usually presents closer to birth and since we were currently over a week out, he thought this was unlikely to be the culprit. He also assured us that conditions like Epilepsy typically don’t present until a child is 3 or 4 years of age, so this was also highly unlikely to be the cause. Months later an endocrinologist out of a children’s hospital would tell us the seizure happened as a result of the low calcium which was inversely affected by the potassium in the formula she was given right after birth. I’m not sure how this could have been avoided, as far as I understand formula is warranted in blood sugar issues to avoid seizures, although the endocrinologist mentioned formulas w/o potassium (or lower potassium) can be used to reduce the likelihood of this.
She had already been their pincushion, but this upped the ante. My sweet baby had prick marks all over her tiny body from the tips of her toes to her forehead and scalp. She had multiple IVs (they kept blowing out veins and would need to move to another area) and multiple blood draws each day. The calcium riders (large doses given by IV) were hard on her veins so they decided to bring in the PICC team to insert a PICC line and asked that we wait outside while this was inserted. A flexible tube that’s fed into a larger central vein through smaller peripheral veins, this can be left in place for a prolonged period of time, isn’t as damaging to the veins and got medication to her more quickly in an emergency.
Bottle feeding was put on hold as she could choke if she were to have another seizure while eating. An NG tube was inserted through her nostril. We were still there for feedings but now instead of feeding her the bottle we held her and sang to her as the milk was pushed through the tube into her stomach.
The PICC line didn’t last long as she started to develop signs of an infection in her thigh.
...
“Range? What?”
She proceeded to tell us that while some with this condition have severe and profound mental and physical handicaps, others go on to live normal lives. She explained how occasionally an older adult may have an MRI (perhaps to check their brain after a fall/ accident) only to find they’ve had this condition their entire life and no one knew. She also explained that per her evaluation and our family histories, she didn’t see any indication not to be hopeful. Although Maryn had already had her chromosomes checked and the results were normal, Dr. B explained the original panel was more generic and she wanted to run some additional checks.
The pediatric neurologist stopped by later that morning. He echoed Dr. B’s sentiment. While Maryn would most likely be delayed in meeting her milestones it didn’t mean she couldn’t eventually catch up. However, a diagnosis of ACC did put her at a much greater risk of developing seizures. He explaned that an infant MRI is not as clear as one of an older child so there was detail we weren't seeing that could give us clues about what her future holds. Additional brain anomalies would be an indication that she would likely have more severe challenges. But, we couldn’t see this now and it was too early for a prognosis. Only time would tell.
After a nice long talk with the new neonatologist that day we were starting to feel some hope. Maybe her prognosis wouldn’t be all doom and gloom like we were initially led to believe (in all fairness by people who just didn’t know much about the condition or at least the range of outcomes). This crazy rollercoaster ride had certainly changed pace again, but what we didn’t realize then was that it was just a short lull before the next big drop off.
Mama discharge day came and it was bittersweet. I was excited by the thought of leaving the hospital environment, getting into my own clothes and taking a shower at home, but it was so sad that she wasn’t coming with us. Thankfully it wasn’t far from our house, so we continued to be there for most morning, afternoon, and evening feedings. The inevitable routine of daily life slowly crept back in. We started referring to the NICU as her apartment. The joking helped relieve some of the emotional tension and anxiety that was always lurking around us. “Hey, what do you say we head over to the baby’s place for dinner tonight?” “Yeah, what should we bring?”
Most evenings we braved the freezing cold to visit her for her late evening feeding. As usual, this particular night, Mike dropped me off at the door and went to park the car in the garage. He actually beat me to the NICU, though, as I had stopped to get some water. When I arrived he was standing in the waiting area. Normally he would have washed his hands and after a quick call been buzzed right in. “What’s up?” I asked. “They asked that we wait out here until her nurse gets a chance to come out to chat.” That’s strange, I thought, but it didn’t occur to me at that point that something could be wrong. Nurse A came out a few minutes later.
“Your daughter woke up earlier than normal and appeared hungry so I started feeding her. While drinking her eyes begun to rhythmically blink and then her arms and legs matched the rhythm in sharp jerks. She had had a seizure.” We both immediately sat down, fear taking over once more. “She is resting comfortably and is receiving medication that should prevent her from having another episode. -How is it we were back in this state, again, so quickly?- The medication will also likely cause her to be sleepy, so she probably won’t wake up while you are here tonight.” But we were just starting to feel a little hope.
“Do we think this is related to her ACC?”
“Yes.”
Devastation. The neurologist had given indications that seizure activity could be a sign of more problems. Were we now headed in a different direction from what we were hoping for? We walked into the NICU. Maryn was asleep on the other side of the room in a different bed hooked up to tubes and monitors with a huge dose of Phenobarbital coursing through her veins.
Her neurologist was on vacation and would be unavailable for a couple of weeks.
The bloodwork normally run after a seizure came back quickly and we heard the news early the next morning. They weren’t expecting any of her levels to be out of the ordinary because they had checked them not too long before, but they were wrong. Her calcium levels were dangerously low.
The next day when I arrived alone (Mike had to work that morning), Maryn's head nurse asked me if I had been taking my pre-natal vitamins and getting enough sun near the end of my pregnancy. This floored me. How this seasoned nurse could look in the face of a tired, scared first time mom and conclude it was okay to ask that question was unfathomable. This wasn't the first time she had directed a loaded comment my way, but it wasn't until then that I realized she was either totally clueless or without compassion. Ultimately, she was blaming me for my baby's seziure and she lost my respect in that moment.
Later, the neonatologist told us they sometimes see seizures in otherwise healthy infants who have difficulty transitioning from the womb. Levels may be off as the infant’s body struggles to take over where the mother’s left off. However, this type of problem usually presents closer to birth and since we were currently over a week out, he thought this was unlikely to be the culprit. He also assured us that conditions like Epilepsy typically don’t present until a child is 3 or 4 years of age, so this was also highly unlikely to be the cause. Months later an endocrinologist out of a children’s hospital would tell us the seizure happened as a result of the low calcium which was inversely affected by the potassium in the formula she was given right after birth. I’m not sure how this could have been avoided, as far as I understand formula is warranted in blood sugar issues to avoid seizures, although the endocrinologist mentioned formulas w/o potassium (or lower potassium) can be used to reduce the likelihood of this.
She had already been their pincushion, but this upped the ante. My sweet baby had prick marks all over her tiny body from the tips of her toes to her forehead and scalp. She had multiple IVs (they kept blowing out veins and would need to move to another area) and multiple blood draws each day. The calcium riders (large doses given by IV) were hard on her veins so they decided to bring in the PICC team to insert a PICC line and asked that we wait outside while this was inserted. A flexible tube that’s fed into a larger central vein through smaller peripheral veins, this can be left in place for a prolonged period of time, isn’t as damaging to the veins and got medication to her more quickly in an emergency.
Bottle feeding was put on hold as she could choke if she were to have another seizure while eating. An NG tube was inserted through her nostril. We were still there for feedings but now instead of feeding her the bottle we held her and sang to her as the milk was pushed through the tube into her stomach.
The PICC line didn’t last long as she started to develop signs of an infection in her thigh.
...
Tuesday, October 12, 2010
M's PostBirth Story -part 1
Many chose to document their infants’ birth stories in a blog, journal or baby book. This never really appealed to me. I can understand the reasons one might chose to do this, but if you asked me 2 years ago if I planned to detail the experience in writing, my answer would have been no. And honestly, after the fact, I didn’t give the actual birthing process a single thought until months later, and this was only because someone asked about it. All of the energy and attention required of me by the “after-birth” experience made the 24 hours leading up to her birth a distant, practically insignificant, foggy memory. Then, after some time passed, I wondered if it might be worthwhile, but I was still too close. I needed time. You see, and I know this will sound awful, but that was to date the worst time in my life.
Of course many of the best things in my life, as well as some good old perspective, came from that time. For one, Maryn, who is the strongest most delightfully spirited girl I’ve ever known. I am truly humbled and honored to be her parent. Second, I came to realize the depth and strength of my relationship with her father. Thirdly, I learned what an amazing support system we have around us. And finally, I learned that Christmas time is not a good time to have a baby in a hospital, especially if said child ends up in the NICU.
So, this “birth story” will be a bit of a departure from others in that it’s mostly about what happened after the big event. Disclaimer: I’m not a medical professional; I am writing about our experience- what we heard, lived, and felt. Even when it was happening it was difficult to remember the precise timeline of events, but I think this is pretty darn close. Also, you have fair warning; it’s a long story so it will likely be several posts.
inhale .... exhale .... okay, here we go ...
The first clue came around my 32nd week of pregnancy. My obstetrician, Dr. M, performed the ultrasound that week and noted that the baby’s head was large. At that time it wasn’t significant and this ultrasound was just to check for size and position. My pregnancy was uneventful and both Mike and I were large babies (both 9 pounds plus) with large heads, so, we figured little spud was going to be big. Due to the baby’s size, my Dr told me that she wouldn’t let me go beyond my due date.
By my appointment on Friday, December 19th, I was still only about a centimeter dilated. If nothing happened over the weekend I would come in early that next week. We walked into the hospital Monday night and I distinctly remember we almost got lost. Fortunately I had been paying closer attention than Mike during the tour given as part of the birthing class a month before. At that time I had no idea we’d soon know the ins and outs of this hospital better than most.
It turned out that I had been having Braxton Hicks contractions but didn’t realize this until they hooked me up to the monitor. They started the petocin a few hours later and I did a fairly good job of sleeping through the night. Dr. M. broke my water about 10 hours later and I quickly began to have much more painful contractions. I labored for 5-6 more hours before I decided on the epidural. I had hoped to delay this decision until I made it to 5 or 6 centimeters, and if I hadn’t been confined to my bed (I hadn’t expected to be) I know I could have fared better. I’ve since learned that one intervention typically opens the floodgates for more and this was definitely true in my case. The epidural went great. I hardly felt the needle and I was much more comfortable.
I was checked regularly throughout the day but the baby wasn’t progressing and neither was the dilation process. Dr. M and I had a talk, weighed the pros and cons and decided to proceed with a C-section. I hadn’t been married to the idea of natural birth and knowing what I know now, this really was the best course of action at the time. Preparations began within 20 minutes and I was in the operating room in no time.
There must have been 10 people in that room. It was surreal. Before the procedure began a flurry of small talk was exchanged about holiday plans and the weather. Everyone was excited about the upcoming festivities … I had forgotten that Christmas Eve was the next day.
Time stood still. I felt nervous, excited, and worried all at once and recognized the presence of the same on Mike’s face. Later, after lots of tugging I remember hearing Dr. M say, “Look at his head! It’s huge!” Various others chimed in with similar sentiments. “There is no way this baby would have made its way out any other way!” “Is it a boy?” I asked. No one heard me. “Is it a boy?” I said a little louder in Mike’s direction. He wasn’t sure. Then, about a minute later “It’s a girl!” A bit confused by the use of the male pronoun earlier, I asked “Are there two?“ “No, it’s a girl!”
December 23rd , 6:40pm SHE was here! I couldn’t believe it. I saw a quick peak of a little crying face over the sheet and then didn’t see her again for probably 30 minutes or so. Mike disappeared to the other side of the room, watching them take prints, clean her up, documenting it all with pictures. Apgars of 9 and 10 were reported --she was doing great! A single tear fell down the side of my face and then there was something in my eye… an eyelash perhaps, but I couldn’t wipe it as my arms were strapped down and no one was there to help.
I promptly got sick after being wheeled into the recovery room. I tried to warn the nurse but she was conversing with some other folk (Christmas plans AGAIN) and didn’t hear me until…well, you know. The anesthesiologist injected some medicine and my nausea quickly subsided. Eventually, after 20 minutes or so, most people left and the recovery room quieted down.
Maryn had her blood tested and her sugar levels were a bit off so she would need formula fairly soon. I held my sweet girl for the first time, we tried breastfeeding (no luck) and then I noticed a strange sound. While Mike was making phone calls letting everyone know we were doing well, I asked the nurse about her breathing. She thought it might be a little residual fluid and tried suctioning her a bit more. Afterwards she made a call and they decided to take her to the NICU to watch her overnight. “It’s probably nothing; we just want to make sure.” It was late so Mike and I retired to my room after the required 3 hours and fell asleep.
I woke up early like a kid at Christmas. My sweet little girl was across the hall and I couldn’t wait to see her. Maryn's first diagnosis came that morning after a consult with an ear, nose & throat doctor ... Laryngomalacia. Essentially the muscle tone around her voice box is weaker than normal which causes some noise, stridor, when she inhales. This condition could lead to complications if she were to acquire RSV or something similar, but generally is not a huge issue. While most cases of laryngomalacia clear up by 18 months of age or earlier as muscle tone improves, others require surgery, we’d just have to wait and see. She was immediately put on Reglan and Prevacid as a preventative measure for reflux (which typically occurs with this diagnosis). We later learned she did indeed have severe silent reflux which would also complicate the feeding process.
Due to the tone issue a Physical Therapist conducted a complete evaluation in the NICU and found that, yes, Maryn had low tone (hypotonia). Months later Maryn’s EI PT explained that everyone is born with muscle tone that falls somewhere on a spectrum. Mike is towards the higher tone side of average and I fall towards the lower tone side of average, but Maryn’s muscle tone is below this normal range. And while growth and physical activity can help, this only goes so far. These two conditions, however, would not by themselves have kept her in the NICU, but of course we found the rumors to be true… easy to get in, tough to get out.
Things quickly became foggy and frustrating. During the non-holiday season a Neonatologist (the Dr that ultimately decides when your child is ready to leave the NICU) would typically be in there for a week at a time, but now, with the holiday schedule, they rotated in and out every day or two. It quickly began to seem as though no one would give us definite discharge criteria, because they didn’t want to step on the toes of the Dr that would be there the next day.
Once it became obvious that she wasn’t eating like a champ right away, they wanted to keep her around. They needed to be sure she would be able to eat so that she would gain weight. I met with the lactation consultant and continued pumping every three hours. Even with the added formula and an initial weight of 9 pounds 4 ounces, she started to lose and her trouble negotiating the suck/swallow/breathe rhythm also had them concerned. It was thought this may be related to the low tone and that she should be seen by a speech language pathologist who specializes in feeding. The SLP thought her tone was likely impacting her feeding and that she might just need some time to get it together. She and/or her partner would continue to monitor her progress.
Due to her tone, large head and a small dimple under her nose (and one near the base of her spine) the neonatologist on duty that day pushed for an MRI. “You both have large heads so it’s not unusual that your baby has a large head, but head size in combination with the midline features could indicate other complications. It’s probably nothing.” There was that phrase again. Okay, no reason to get too alarmed, right? The MRI was scheduled for the day after Christmas. I was planning to accompany her, but they ended up leaving early so I missed them. Although I was still in the hospital, right across the hall from the NICU, but no one bothered to get me. GRR! Apparently they didn’t need to sedate her; she slept though the whole thing.
The next morning I knew we were in trouble when the hospital support person showed up at my door with the neonatologist of the day. They wanted to take us down to the radiologist’s office (on another floor of the hospital) because we could see a better picture of the MRI on his computer. Since I had just had major abdominal surgery a few days before they asked, “Would you like us to get you a wheel chair?” “Um, no, I’m fine (really, what was I thinking?).”
He didn’t have his own office; it was a cubicle. The 6 of us were crammed into a 6x6 space within a larger room made up of many cubicles each with their own large monitors but no people in front of them. The lone radiologist that day, he was seated at his monitors (yes, multiple) and we all stood behind him. He then proceeded to show us an MRI image of what he called a “typically formed infant brain” pointing out some of the structures.
Can you imagine the bottomless pit of terror I felt brewing deep in my gut at that moment? The anticipation of the horror that was sure to come after he finished detailing this “normal” image. Typing now, just shy of 2 years later, even after all that we’ve been through, and learned, even now, as a very different person, the echo of that pain can still be felt in my stomach.
“Now, this (he toggles to another window), is your daughter’s brain. She has complete Agenesis of the Corpus Collosum. It’s the main structure that allows the right and left hemispheres of the brain to talk to each other. It’s absent. It didn’t develop. She doesn’t have one and it won’t develop later.”
Now I know I’m going to faint, why did I not accept the wheelchair? But somehow I’m still standing.
In retrospect it makes me sad to think about the way we were told this news. Not that how it’s told can make it okay or less scary, but perhaps it could have felt less impersonal, distant and cold. No eye contact, just the back of his head and the back of the Dr and support person’s heads. They chose to bring us down to this cubicle ghost town under the auspice of a better monitor or a clearer scan, but I wonder now, was that really for our benefit?
Space becomes hazy and shaky as the neonatologist and the radiologist exchange dialog about the images. I’m hearing their words but very little registers. “Here you see the enlarged ventricles …blah blah blah... these can become larger in the absence of the CC.” Then Mike’s mom (who happened to be there when they came to get us so we invited her along) asked, “Does she have hydrocephalus?” “No” again more words floating in the room like obnoxious background noise. I don’t care about the medical terms, or the technical jargon. I’m wondering why they are talking so nonchalantly as if they’re discussing the strange weather we’re having. Are you serious? Don’t you feel it? Just now …the entire world is closing in. No one says anything about a prognosis. I immediately wonder what will this mean for our child? It must be bad if they aren’t even addressing it. Am I strong enough to hear it? I don’t ask. I’m thinking about this sweet little person upstairs that I just met, that I love, and I’m offended by the clarifying questions the Dr. has for the radiologist. She finds this interesting and I’m angry because this is not a seminar on brain structures and conditions, this is Maryn’s brain that they’re examining and her life that’s in the balance and they don’t have any business being a part of it.
The Dr and support person walk us back to my room. They give us hugs, say they are so sorry, this is such a rare condition and that it didn’t happen because of anything that I did or didn’t do. They say they can tell we’re good parents already, and they are so sorry. They tell us we can find information about her condition on the Internet. They will forward information about a listserv at the University of Maine that will be helpful. And then they leave. Trish decides to go see Maryn in the NICU to give us some time. Mike jumps online and what he finds isn’t encouraging. We went to see Maryn, but no more than two people were permitted to visit at once so we switched off. I remember holding her, choking back tears, trying to focus on the love I felt instead of the fear and grief.
My OB came to see me a little later. She sat and talked with Mike and me in my hospital room. She was calming, sweet, and thoughtful with her words. She said that all parents are saddled with fear and worry at some point in the parenting journey, but that it usually comes much later and that it’s unfair that it’s our introduction to the role.
I don’t really remember much about the rest of the day. I know we largely stopped making phone calls. Having to continually relay scary information that we didn’t yet fully understand and that seemed to be constantly compounding was exhausting. My sister and Mike’s mother took on those roles while we continued to plug through.
Feeding issues continued to be a problem. Mike and I did our best to be there for each and every feeding (although we missed a couple of the overnight sessions). We would read to her and hold her and rock her. Honestly it was more difficult to get her to breastfeed (vs bottle feeding) at the beginning. She would fatigue quickly and because we knew she must gain weight to leave, we opted for the bottle of breast milk. Again, it’s sad to think we felt pushed into that decision, but our priority was getting her home. We planned to continue trying breastfeeding once we were in a more comfortable less stressful environment.
After that it was like a revolving door of specialists. We didn’t know who was coming to see her and when, they would just show up -Cardiologist, Gastroenterologist, Urologist, Endocrinologist, Neurologist, Neurosurgeon, Geneticist. Some we met, some we didn’t. And the therapists were still coming too. They were now checking anything and everything. ACC can happen in isolation, but often additional issues accompany it including some syndromes. Due to the way the body and organs form in utero this missing midline structure of the brain calls the health of all other midline organs of the body into question. A plethora of tests were ordered including an EKG, EEG, ultrasounds, bloodwork to check chromosomes, bloodwork to check thyroid function, X-rays, and a spinal MRI.
....to be continued
Of course many of the best things in my life, as well as some good old perspective, came from that time. For one, Maryn, who is the strongest most delightfully spirited girl I’ve ever known. I am truly humbled and honored to be her parent. Second, I came to realize the depth and strength of my relationship with her father. Thirdly, I learned what an amazing support system we have around us. And finally, I learned that Christmas time is not a good time to have a baby in a hospital, especially if said child ends up in the NICU.
So, this “birth story” will be a bit of a departure from others in that it’s mostly about what happened after the big event. Disclaimer: I’m not a medical professional; I am writing about our experience- what we heard, lived, and felt. Even when it was happening it was difficult to remember the precise timeline of events, but I think this is pretty darn close. Also, you have fair warning; it’s a long story so it will likely be several posts.
inhale .... exhale .... okay, here we go ...
The first clue came around my 32nd week of pregnancy. My obstetrician, Dr. M, performed the ultrasound that week and noted that the baby’s head was large. At that time it wasn’t significant and this ultrasound was just to check for size and position. My pregnancy was uneventful and both Mike and I were large babies (both 9 pounds plus) with large heads, so, we figured little spud was going to be big. Due to the baby’s size, my Dr told me that she wouldn’t let me go beyond my due date.
By my appointment on Friday, December 19th, I was still only about a centimeter dilated. If nothing happened over the weekend I would come in early that next week. We walked into the hospital Monday night and I distinctly remember we almost got lost. Fortunately I had been paying closer attention than Mike during the tour given as part of the birthing class a month before. At that time I had no idea we’d soon know the ins and outs of this hospital better than most.
It turned out that I had been having Braxton Hicks contractions but didn’t realize this until they hooked me up to the monitor. They started the petocin a few hours later and I did a fairly good job of sleeping through the night. Dr. M. broke my water about 10 hours later and I quickly began to have much more painful contractions. I labored for 5-6 more hours before I decided on the epidural. I had hoped to delay this decision until I made it to 5 or 6 centimeters, and if I hadn’t been confined to my bed (I hadn’t expected to be) I know I could have fared better. I’ve since learned that one intervention typically opens the floodgates for more and this was definitely true in my case. The epidural went great. I hardly felt the needle and I was much more comfortable.
I was checked regularly throughout the day but the baby wasn’t progressing and neither was the dilation process. Dr. M and I had a talk, weighed the pros and cons and decided to proceed with a C-section. I hadn’t been married to the idea of natural birth and knowing what I know now, this really was the best course of action at the time. Preparations began within 20 minutes and I was in the operating room in no time.
There must have been 10 people in that room. It was surreal. Before the procedure began a flurry of small talk was exchanged about holiday plans and the weather. Everyone was excited about the upcoming festivities … I had forgotten that Christmas Eve was the next day.
Time stood still. I felt nervous, excited, and worried all at once and recognized the presence of the same on Mike’s face. Later, after lots of tugging I remember hearing Dr. M say, “Look at his head! It’s huge!” Various others chimed in with similar sentiments. “There is no way this baby would have made its way out any other way!” “Is it a boy?” I asked. No one heard me. “Is it a boy?” I said a little louder in Mike’s direction. He wasn’t sure. Then, about a minute later “It’s a girl!” A bit confused by the use of the male pronoun earlier, I asked “Are there two?“ “No, it’s a girl!”
December 23rd , 6:40pm SHE was here! I couldn’t believe it. I saw a quick peak of a little crying face over the sheet and then didn’t see her again for probably 30 minutes or so. Mike disappeared to the other side of the room, watching them take prints, clean her up, documenting it all with pictures. Apgars of 9 and 10 were reported --she was doing great! A single tear fell down the side of my face and then there was something in my eye… an eyelash perhaps, but I couldn’t wipe it as my arms were strapped down and no one was there to help.
I promptly got sick after being wheeled into the recovery room. I tried to warn the nurse but she was conversing with some other folk (Christmas plans AGAIN) and didn’t hear me until…well, you know. The anesthesiologist injected some medicine and my nausea quickly subsided. Eventually, after 20 minutes or so, most people left and the recovery room quieted down.
Maryn had her blood tested and her sugar levels were a bit off so she would need formula fairly soon. I held my sweet girl for the first time, we tried breastfeeding (no luck) and then I noticed a strange sound. While Mike was making phone calls letting everyone know we were doing well, I asked the nurse about her breathing. She thought it might be a little residual fluid and tried suctioning her a bit more. Afterwards she made a call and they decided to take her to the NICU to watch her overnight. “It’s probably nothing; we just want to make sure.” It was late so Mike and I retired to my room after the required 3 hours and fell asleep.
I woke up early like a kid at Christmas. My sweet little girl was across the hall and I couldn’t wait to see her. Maryn's first diagnosis came that morning after a consult with an ear, nose & throat doctor ... Laryngomalacia. Essentially the muscle tone around her voice box is weaker than normal which causes some noise, stridor, when she inhales. This condition could lead to complications if she were to acquire RSV or something similar, but generally is not a huge issue. While most cases of laryngomalacia clear up by 18 months of age or earlier as muscle tone improves, others require surgery, we’d just have to wait and see. She was immediately put on Reglan and Prevacid as a preventative measure for reflux (which typically occurs with this diagnosis). We later learned she did indeed have severe silent reflux which would also complicate the feeding process.
Due to the tone issue a Physical Therapist conducted a complete evaluation in the NICU and found that, yes, Maryn had low tone (hypotonia). Months later Maryn’s EI PT explained that everyone is born with muscle tone that falls somewhere on a spectrum. Mike is towards the higher tone side of average and I fall towards the lower tone side of average, but Maryn’s muscle tone is below this normal range. And while growth and physical activity can help, this only goes so far. These two conditions, however, would not by themselves have kept her in the NICU, but of course we found the rumors to be true… easy to get in, tough to get out.
Things quickly became foggy and frustrating. During the non-holiday season a Neonatologist (the Dr that ultimately decides when your child is ready to leave the NICU) would typically be in there for a week at a time, but now, with the holiday schedule, they rotated in and out every day or two. It quickly began to seem as though no one would give us definite discharge criteria, because they didn’t want to step on the toes of the Dr that would be there the next day.
Once it became obvious that she wasn’t eating like a champ right away, they wanted to keep her around. They needed to be sure she would be able to eat so that she would gain weight. I met with the lactation consultant and continued pumping every three hours. Even with the added formula and an initial weight of 9 pounds 4 ounces, she started to lose and her trouble negotiating the suck/swallow/breathe rhythm also had them concerned. It was thought this may be related to the low tone and that she should be seen by a speech language pathologist who specializes in feeding. The SLP thought her tone was likely impacting her feeding and that she might just need some time to get it together. She and/or her partner would continue to monitor her progress.
Due to her tone, large head and a small dimple under her nose (and one near the base of her spine) the neonatologist on duty that day pushed for an MRI. “You both have large heads so it’s not unusual that your baby has a large head, but head size in combination with the midline features could indicate other complications. It’s probably nothing.” There was that phrase again. Okay, no reason to get too alarmed, right? The MRI was scheduled for the day after Christmas. I was planning to accompany her, but they ended up leaving early so I missed them. Although I was still in the hospital, right across the hall from the NICU, but no one bothered to get me. GRR! Apparently they didn’t need to sedate her; she slept though the whole thing.
The next morning I knew we were in trouble when the hospital support person showed up at my door with the neonatologist of the day. They wanted to take us down to the radiologist’s office (on another floor of the hospital) because we could see a better picture of the MRI on his computer. Since I had just had major abdominal surgery a few days before they asked, “Would you like us to get you a wheel chair?” “Um, no, I’m fine (really, what was I thinking?).”
He didn’t have his own office; it was a cubicle. The 6 of us were crammed into a 6x6 space within a larger room made up of many cubicles each with their own large monitors but no people in front of them. The lone radiologist that day, he was seated at his monitors (yes, multiple) and we all stood behind him. He then proceeded to show us an MRI image of what he called a “typically formed infant brain” pointing out some of the structures.
Can you imagine the bottomless pit of terror I felt brewing deep in my gut at that moment? The anticipation of the horror that was sure to come after he finished detailing this “normal” image. Typing now, just shy of 2 years later, even after all that we’ve been through, and learned, even now, as a very different person, the echo of that pain can still be felt in my stomach.
“Now, this (he toggles to another window), is your daughter’s brain. She has complete Agenesis of the Corpus Collosum. It’s the main structure that allows the right and left hemispheres of the brain to talk to each other. It’s absent. It didn’t develop. She doesn’t have one and it won’t develop later.”
Now I know I’m going to faint, why did I not accept the wheelchair? But somehow I’m still standing.
In retrospect it makes me sad to think about the way we were told this news. Not that how it’s told can make it okay or less scary, but perhaps it could have felt less impersonal, distant and cold. No eye contact, just the back of his head and the back of the Dr and support person’s heads. They chose to bring us down to this cubicle ghost town under the auspice of a better monitor or a clearer scan, but I wonder now, was that really for our benefit?
Space becomes hazy and shaky as the neonatologist and the radiologist exchange dialog about the images. I’m hearing their words but very little registers. “Here you see the enlarged ventricles …blah blah blah... these can become larger in the absence of the CC.” Then Mike’s mom (who happened to be there when they came to get us so we invited her along) asked, “Does she have hydrocephalus?” “No” again more words floating in the room like obnoxious background noise. I don’t care about the medical terms, or the technical jargon. I’m wondering why they are talking so nonchalantly as if they’re discussing the strange weather we’re having. Are you serious? Don’t you feel it? Just now …the entire world is closing in. No one says anything about a prognosis. I immediately wonder what will this mean for our child? It must be bad if they aren’t even addressing it. Am I strong enough to hear it? I don’t ask. I’m thinking about this sweet little person upstairs that I just met, that I love, and I’m offended by the clarifying questions the Dr. has for the radiologist. She finds this interesting and I’m angry because this is not a seminar on brain structures and conditions, this is Maryn’s brain that they’re examining and her life that’s in the balance and they don’t have any business being a part of it.
The Dr and support person walk us back to my room. They give us hugs, say they are so sorry, this is such a rare condition and that it didn’t happen because of anything that I did or didn’t do. They say they can tell we’re good parents already, and they are so sorry. They tell us we can find information about her condition on the Internet. They will forward information about a listserv at the University of Maine that will be helpful. And then they leave. Trish decides to go see Maryn in the NICU to give us some time. Mike jumps online and what he finds isn’t encouraging. We went to see Maryn, but no more than two people were permitted to visit at once so we switched off. I remember holding her, choking back tears, trying to focus on the love I felt instead of the fear and grief.
My OB came to see me a little later. She sat and talked with Mike and me in my hospital room. She was calming, sweet, and thoughtful with her words. She said that all parents are saddled with fear and worry at some point in the parenting journey, but that it usually comes much later and that it’s unfair that it’s our introduction to the role.
I don’t really remember much about the rest of the day. I know we largely stopped making phone calls. Having to continually relay scary information that we didn’t yet fully understand and that seemed to be constantly compounding was exhausting. My sister and Mike’s mother took on those roles while we continued to plug through.
Feeding issues continued to be a problem. Mike and I did our best to be there for each and every feeding (although we missed a couple of the overnight sessions). We would read to her and hold her and rock her. Honestly it was more difficult to get her to breastfeed (vs bottle feeding) at the beginning. She would fatigue quickly and because we knew she must gain weight to leave, we opted for the bottle of breast milk. Again, it’s sad to think we felt pushed into that decision, but our priority was getting her home. We planned to continue trying breastfeeding once we were in a more comfortable less stressful environment.
After that it was like a revolving door of specialists. We didn’t know who was coming to see her and when, they would just show up -Cardiologist, Gastroenterologist, Urologist, Endocrinologist, Neurologist, Neurosurgeon, Geneticist. Some we met, some we didn’t. And the therapists were still coming too. They were now checking anything and everything. ACC can happen in isolation, but often additional issues accompany it including some syndromes. Due to the way the body and organs form in utero this missing midline structure of the brain calls the health of all other midline organs of the body into question. A plethora of tests were ordered including an EKG, EEG, ultrasounds, bloodwork to check chromosomes, bloodwork to check thyroid function, X-rays, and a spinal MRI.
....to be continued
Monday, October 11, 2010
Thursday, October 7, 2010
Cousins & Growth Update
These shots were taken a couple of months back
when some of M's cousins came for a visit. At that time the youngest who is about a year younger than M weighed about the same as she did.
when some of M's cousins came for a visit. At that time the youngest who is about a year younger than M weighed about the same as she did. Maryn had a fantastic follow up with her neurologist today and we were able to update our numbers.
M is now between the 25th and 50th% in both height and weight! Wow, I remember the stressful times when we were anxiously weighing her every week with fears of a G-Tube in her future. And it wasn't too far back that her height seemed stable, but her weight still struggled to catch up.
What a relief. Perhaps it was a little competitive spirit ... she saw that cutie sitting next to her and thought, "I'm not going to let this baby pass me up!"
Wednesday, September 15, 2010
Park Time
The public park a few blocks from our home has been under construction for quite some time.
A joint Village/Park District project meant to combat pesky storm water issues, the previous space was completely torn up so they could build a water detention system underneath the land.
The layout, landscaping, and equipment were all upgraded and it's quite beautiful. The soccer and baseball fields are not quite finished yet, and there are a few minor details to wrap up, but it's been open to the public since Labor day weekend.
Yes, there is a fountain and a covered picnic area. How fun!
Check out her dark stip of hair in the back. See how it's still dark at the roots?There are two playground spaces, one designated for older kids and the younger playspace is on the opposite side of the square.
She looks so small on the equipment.
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