Big Decision, mostly made

I have been wrestling with myself daily for about a year now regarding a procedure for Elena.  I decided (well, made a surgery date) for E to undergo Selective Dorsal Rhizotomy early 2009.  I'll comment more about it before and after the procedure.  If anyone has done this--or decided not to, I would welcome your comments.

Eye Surgery #3

Elena had her third eye surgery with Dr. P on October 29th, 2008.  She is definitely getting smarter when it comes to her appointments...she knew she was going to have an operation.  She waited until the day before she and Jason left for Northern Virginia to ask me The Question:  "Will this hurt?"  I told her a little, and then her eyes will feel a little scratchy...and after her nap she'll be fine. 

Overall her attitude was great--until she was carried into the OR and the doors closed.  Then Jason could hear her crying.  She was pretty good when she woke up, though.

The results were quite good--but that was true last surgery, too.  I have seen her on two occasions "drift" since the procedure.  One eye (at a time?) seems to drift "upward" these two times.  This happened before and it resolved itself.  I can only hope that the third time's the charm, and eventually her eyes resolve to stay together.  

(Specialized) Equipment

There are lots of neat toys and equipment that babies seem to enjoy...but that our therapists have warned us are not appropriate for someone with issues like Elena.

Early Development--Sitting, Standing

The "bad" toys are the ones where Elena was encouraged to be on her toes, such as:

Door-jam jumper/"jumperoo" type harnesses. E didn't "jump"--but it encourages being on her toes
Exersaucers. Encourages being on toes--we'd use it if we wanted her upright and needed our two hands for something else, but never for long periods of playtime


Ideal toys for Elena were ones that would keep her attention while we would try to do sorts of "therapy-play":

Duplo legos she could pull apart. Uses both hands to pull, develops strength and coordination
Containers of all types. Put/grab items across body to use different hands, develop core strength
Box with latches and locks. Great for keeping attention while working on standing/balance
Exercise ball. For stretching, working on protective responses--side, forward, back--while sitting on the ball. If able to stand, can push ball back and forth
Kitchen utensiles (not sharp ones, obviously). Shiny, tactile, attention-grabbing objects that have some weight to them and can be LOUD.
Giant plastic storage box filled with dry beans. This has been one of our BEST investments. Before E could sit independently she could be propped up inside the box and play with the beans using her hands, working on fine motor skills. We have 4 types of dry beans of different colors and sizes to encourage sorting and counting. Two years later, we still have the same box and beans--but she plays in and out of the box. All her friends LOVE IT. Easy to pick up, cats keep out of it, and so far, hasn't needed replacing.

Other: Straw cups instead of sippy cups. Elena never took to a sippy cup b/c she didn't lean her head back well to drink from it (weak core). The straw made it easier to drink, while working on her mouth muscles for speech development ("oooo" sound was particularly late; using a straw can help)

Later Development--Standing, Stepping

Bad
Dolly stroller, flimsy-type. Moves WAY to fast, E kept falling on her face.

Good
Pottery Barn Mini-Zooper Stroller. Has a large wheel base so it can be pushed over different surfaces, including wood floor/molding/carpet/grass/small gravel without wheels getting messed up. We put canned goods in the bottom portion of the stroller to make it harder to turn to work her core muscles. Unfortunately this stroller costs about 3x what a flimsy stroller does.
Walker. Elena uses a forward walker--it took months for her to take to it, and we've nearly outgrown it's use (she runs with it when she can, which means she's on her toes too much and pops out of her AFOs). Great for more rugged terrain, where she can't run.
Loftstrand (wrist) braces. We are currently learnign how to use these. She can stand taller than ever with them when she walks, which is great.
Pediatric treadmill. I am currently having side supports constructed so we can use this, ideally daily.
AFOs. Elena cannot walk or stand upright without them. They allow her feet to stand flat(ter) and provide a good foundation for balance. She wears them any time she is not sleeping.
Feeding chair. We had a highchair, but it took up SO much kitchen space and was too large/unsupportive for Elena's core we had to find an alternative. I like the Fisher-price travel highchair--it straps to a regular chair, is adjustable height, and has a smaller seat base so she can't slouch side-to-side as easily. We also put a stool under her feet to help her posture. It's also WAY cheaper than a traditional highchair.
Play chairs. Finding a chair where Elena could sit in a 90-90-90 position (flat feet, knees at 90 degrees, back straight) was a REAL challenge. Elena needed a chair of the right height that had a back and side support. I bought a Chairrie off Ebay that I had measured to fit her. She's a little big for it now, but it was a good investment. I also bought a chair off the classifieds from a mother of a special-needs child with the same issues...they had found a chair they liked and cut off the legs to be the right height. Now that she is stronger in her core and taller, more chairs are appropriate and she can use benches without backs to them.
Play table. We needed something that she could sit/stand upright and NOT lean on for support. This was difficult at first, as many toys she took to were too short for her to stand up and play with WHILE standing on flat feet. She has a craft table in her playroom and also likes to play at the coffee table. This has been less of a problem now that she stands up well.
Kettler Trike. This tricycle is a great size for small children, room to grow, has a seat belt and a push bar. Make sure to buy one that has a non-coasting front wheel. I had to call the company to get one and switch it out (not cheap). We strap E's shoes to the pedals with velcro ties, and she gets her legs pumping while we push. She now tries to turn the wheel herself.
Mini beanbags. Good for catching and throwing while doing standing drills. If balance is pretty good, can work on putting a beanbag on different parts of the body. Now we can use balls, but beanbags were a great start to this drill, b/c they wouldn't move when she'd try to pick them up.

Care providers for Elena

This is a short/ongoing list of providers for Elena. Different places have different names for some of the programs or positions, but these are the ones we have:

Dr. Josh—delivered E.

NICU Nurses—Kitty, Nicole, Paula, Esther, Joe (to name a few favorites)

Anne Peery—lactation consultant

Brenda XXX—my mental health counselor

Dr. Ashby Robert Trundle—pediatrician

Dr. Blackman—developmental pediatrician at KCRC

Dr. Houlihan—E’s developmental pediatrician at KCRC (post-CP diagnosis)

Dr. Mark Abel—E’s pediatric orthopaedic doctor

Theresa McCullough—main PT (EI, private)

Teresa Andrews—sub PT (EI, private)

Jen XXX—sub PT (private)

Sarah James—main speech T (EI, private)

Elayne Fitzgerald—Horses As Healers, therapeutic horseback riding

Cecily, Fun Brian—Little Gym teachers

Bryan Fuller—orthotist

Edward Parelhoff—pediatric ophthamologist

Jeff Elias—neurosurgeon

Sherry Lord—Public School PT

Maureen Tilley—Public School SpT

Judy Spellman—Public School OT (currently not in use, but will be)

IEP coordinator (used to be Neil) Cathy Wojik

Delores Alt (now Cassandra)—Care Advantage Plus rep (Medicaid provider)

Kelly Peters—EI coordinator (lost after we left EI)

Dave Carmines—gait analysis engineer

Patty Payne—PT at KCRC (gait analysis center)

Duane Bickers—dentist

Geisha Goodman—Bright Stars teacher (public school program)

Ruth XX—Bright Stars assistant

Ariel—PE Teacher (public school)

Beth—PE assistant (public school)

Annette--nanny (of course)

Susan XXX—RN, case worker for Southern Health (my/E's primary insurance)

EI to Public School, private therapy

Early Intervention ends when children reach 3 years of age. This doesn’t mean that once your child is three all therapy options cease-but they do change abruptly. I was prepared months in advance for this change. Our case coordinator said that when Early Intervention stops, the Public School System takes over—but that’s not exactly true. Elena was assessed by several therapists that work for the PSS in order to see if she qualified for services. Having a disability is not enough to qualify—since the PSS works on an educational model, the deficit has to be causing an impediment to education.
Elena’s first assessment was with the Speech Therapist in December 2007. At this time, she was using words, but she could only use one word per breath. She knew her colors, and could answer yes or no questions, and could point to the answer to a very involved scenerio, like this: There are three pictures involving groups of different colored kittens. One group is playing with string, one group is playing with a ball, and one group is playing in and around a box. There are kittens playing, sleeping, eating, jumping in the different pictures. The therapist would ask “Where is the black kitten in the box?” and Elena would find it, even though there were black kittens in each picture. “Where is the grey kitten sleeping with a ball?”—she’d get those questions correct every time. So even though she couldn’t say “black cat”, she could convey she understood the situation. A speech delay, if it is major, is considered an impediment to learning as it is difficult to communicate in an educational group setting—so that was an automatic qualifier.
Occupational therapy was next. In essence, this is assessment was of Elena’s fine motor skills and “skills for living”. Most of this is normally done sitting down in a play area—but Elena does not sit down well on the floor, so she was allowed to sit or stand at a table. This wasn’t optimal, either, as the chair was too larger for her, and had no side support, and the table was too tall for her to be able to lean on while standing up. Still, she showed no massive problems related to fine motor skills—she could put beans into a pill bottle (and screw and unscrew it), string beads, draw lines (straight and circular), stack blocks, and fold paper, to name a few of the tasks. She did not qualify for OT services.
PT was next—the assessment of her gross motor skills. This is her obvious deficit—but just b/c a 2 year old couldn’t walk didn’t mean she couldn’t be a smart student. This was my biggest fear—her largest need not being met b/c of the educational model. I argued that children learn social skills and education at this age through things like pretend play or group play, and Elena’s gross motor issues prevented her from engaging in those activities. The therapists and teachers agreed with me, but wasn’t sure if that explanation would be good enough for the State.
Since we had the speech delay as a qualifier, she was accepted. I’m not sure if she’ll qualify for therapy services in the future, as her speech progresses. I have been told that once you’re in, it’s easier to stay in the program, so I’m hoping that is true. I also think that she’ll end up qualifying for OT services in the future, as being potty trained in the classroom would be important—we are close to being potty trained, but she can’t get her clothes on and off by herself, and won’t be able to for a long time, as her balance is terrible. OT and PT to improve balance could be available to us, depending on the spin factor. I’ve also heard of parents toting the ‘safety line’, using various therapies as a way to keep their child safe while they are at school (improved balance while being jostled in the hallways, being able to carry something while walking, etc). Apparently the word ‘safety’ tends to evoke a strong response when nothing else works, as schools care about liability.
Elena’s EI program was to end May 1, and school ended June 6th. I didn’t like the idea of having her therapists switch up for a month and then have a large summertime gap. I opted out of EI earlier than her 3rd birthday, mainly b/c I got to “double up” on her therapies—she got Speech T and PT at school, and she still saw her EI therapist, only not in the home (I drove her to the therapy center).

Eye Surgery #2

After my “falling out” with our local pediatric opthamologist, I went on a mad search for another doctor. I saw 4 other specialists, half of which I was not impressed with—and I felt like I was running out of time for Elena to have a chance at normal vision. I got a recommendation for a doctor in Northern Virginia, with a very busy practice and an extremely long waiting list (9 months). I managed to be seen earlier b/c Elena’s pediatrician happened to have treated the woman in the new appointments office. I met with Edward Parelhoff in XXX, and he knew Elena needed another surgery as soon as possible. He said Elena suffers from something called Infant Esotropia Syndrome, which basically means her brain doesn’t communicate well with her eyes—he’d expect that once he got her eyes straight on one plane (from cross-eyed to straight-forward) she would most likely have them drift on a different plane (up and down, or to opposite corners). Basically, he warned me not to be surprised if the next surgery—or the next—didn’t take. He and his entire staff are incredibly patient, respectful of parents, comforting to children, and above all practice sound medicine. He worked his Thanskgiving holiday by performing surgery on my daughter.
After the surgery, she seemed to be straight right away. We were stunned! We also think this had a lot to do with her increase in signs and vocalizations. CHECK TIMING OF THIS. She did start to drift upwards “into the outside corner” of her eyes, but that seemed to resolve itself. Unfortunately she has started to drift outwards (wall-eyed) in the past 3 months or so (starting around 3 years, 1 month). Dr. P was a little surprised—but not shocked—he had hoped her brain had “locked on” to a binocular image. She’s scheduled for another surgery before the end of the year. He says eventually her vision will level off, but they won’t give up on getting her eyes straight (at least—he’s not sure if she’ll use her eyes together, at the same time or not). The good news is Elena has (and always has) 2 eyes that are healthy, but unfortunately do not (yet) work together.

Speech (finally!)

Elena used the words “Mommy” and “Daddy” and a sound for “more” when she was about 28 months old. CHECK WORDLOG. By Christmas that year (33 months), her vocabulary had grown amazingly, but her breath support was poor. She had multi-word sentences, but needed to take a breath after each word to put the spoken phrase together. I remember this distinctly, b/c she had an evaluation with the public school system in December 2007 and this was a main concern. By the end of January 2008, she was stringing words along with hardly any difficulty. The speech therapist was shocked! At 3 years 4 months, she still has major difficulty with certain sounds (/w/, /u/, /h/, /j/, /l/, /r/, /ch/, /th/) but she is understandable even by most strangers. She has great understanding of verb conjugation, the possessive, plurality and past/present/future tense. Overall, she speaks like a 3-yr old, with some speech impediments—still, really amazing considering what a late vocal start she had.

Botox

Botox is a DEFINITION HERE. It has been used clinically for the treatment of spastic cerebral palsy for X years, although it has never been FDA approved for this purpose. There are dangers (see attached note from doctor). At the time of Elena’s first injections, I knew passively about the dangers related to Botox injections but I did not seriously consider them as a threat. She was given her first shots in the calf and soleus of each leg at X years of age. I have heard from older patients that the shot is very painful—the needle gauge is large, and the actual Botox preparation stings, in addition to the liquid displacement within the muscle (the pain we all feel with shots). Overall the process is quick, and she was not sedated. After her nap on the same day, for the first time in her life, her naked feet were flat on the ground. It was like a miracle! I knew it wouldn’t last, but having Botox treatment I believe greatly facilitates the use of AFOs, and allows the tendons and ligaments to grow more properly to avoid (or postpone) orthopaedic intervention. I would highly recommend it. The shots ARE EXPENSIVE. In general, at the time of this posting, it costs about $1000.00 per vial (her first injection was one vial, split between four muscles). Medicaid covered what my insurance did not.
She got her second round of injections 6 months after. Normal duration of Botox spastic muscle relief is around 3-6 months. elena was injected in the same muscles as before. Again, it lasted around 6 months, but her needs had changed—with increased weight-bearing, her right knee constantly “caved in” (due to the pulling action of her right adductor muscles) and she had a very hard time standing up straight (over-strong hamstrings). Her third round of injections was the first time they targeted multiple muscle groups—the adductors (inner thighs), hamstrings (back of the upper legs), calf, and soleus. She was sedated for these shots, as she had become bigger, stronger, and more vocal by this time. The Botox effect wasn’t as extreme this time around, as we still have to wrestle with flexing her right foot—don’t get me wrong, it is MUCH easier than before her injections. I can tell, though, that Botox treatment won’t be a viable option for us much longer. I imagine that within a 2-year period, there won’t be much benefit with further shots.
One observation that is worth noting: just b/c Elena had an easier time moving did not mean her balance improved. I guess being less “tight” gives her the opportunity to find a different way to balance her body, but any progress in the balance department is extremely slow. Botox has definitely given her the flexibility to work on protective responses, such as hands-in-front to catch herself when she falls, or bending her legs when she falls.

AFOs

As soon as Elena started bearing any weight on her feet, it was obvious something wasn’t right. Besides her legs being incredibly stiff, her feet pronated badly. Her right foot was particularly bad—she stood nearly on the inside of the ankle and not the bottom of her foot. She got her first pair of AFOs before she really started any sort of independent standing, mainly to try to develop an arch in her feet, as she had none. The instep of her AFOs were gradually built up. At first, she wore her braces without shoes. Since she was so quiet, there really was no fighting with her braces. By the time she was communicating, wearing braces had become normal, and she’d use the sign for “hurt” if her braces or shoes had any problems.
Our first problem with AFOs came up when Elena needed shoes (about 13? months old). The shoes fit the AFO, not the foot, so normally they are at least a size too big. This is a lot of weight, not to mention an awkward size, for a child who has issues lifting her feet off the ground. AFOs also don’t breathe, and sandals typically get caught in the hinges of the brace, so Elena’s feet get very hot and sweaty. Elena’s feet are always trying to point, and her legs are always trying to straighten, so keeping her in her braces was a real struggle, she’d always be popping out, and then getting her little heels pinched in the back hinge. In order to get her back in the brace, we’d literally strongarm her foot into a flexed position and stuff it in the brace. Over time, this became easier, but never “easy”. Still, the payoff is fantastic. She can now stand with flat feet, and her feet are not as pronated—the right is still worse than the left, but not by much. The wearing of AFOs is greatly facilitated by Botox treatment, which we have had for a year and a half at this posting.

Walker

Elena was introduced to a forward walker when she was XX months old. She had been standing up and cruising a little using furniture. Her balance was nonexistent, and when she fell, it was like a tree—forward, sideways, backwards. She also did not know how to bend her legs to absorb a fall or to come down slowly. At first, she did not like the walker at all, but it didn’t take long for her to figure out how to push it. She fell a lot, which was rough, since she’d get tangled in the metal. Turns were very difficult, so we started on short flat distances, which mainly meant we’d bring her to the hospital when I’d work on the weekend and she’d walk part of the hallway. After XX months of use, Elena became pretty adept at using her walker on a flat surface. She still could not do any sort of terrain (grass, gravel) or any kind of incline/decline. Our current issue with her walker is she doesn’t like to walk with it—she tends to break into a run. This might seem good, or funny, but given the fact that she always wants to be on her toes, running with a walker is counterproductive—she leans into it for balance while she runs on her toes. For easy (smooth, flat) terrain, we now use her dolly stroller, as she can’t run with it (she’ll fall on her face if she does).

Diagnosis

We had the sinking feeling that something was wrong after Elena was a year old. Still not talking or sitting up by herself—while her peers were nearly walking and feeding themselves. Our pediatrician referred us to Kluge Children’s Rehabilition Center (KCRC) the their head developmental pediatrician. By this time, he had warned us that the eye problems probably indicated something neurologically wrong, and told us in advance that we might hear the doctors at Kluge say cerebral palsy. I was very thankful for the warning, as this was the first time anyone had used those terms. We visited with Dr. Blackman at KCRC when Elena was 14 months old, and the diagnosis was pretty immediate: she had spastic diplegic cerebral palsy, and it was really too early to tell if she was mentally impaired. Physically she seemed “not too bad”, and he said that if children are sitting up (even with assistance to get there) by age 4, chances were extremely good that they would be ambulatory in some fashion.
During the appointment, Jason and I basically just nodded our heads, logically taking it all in. Jason asked a couple questions related to intelligence, or certain expectations, to which the doctor basically said there was no way to know. When we left, I was absolutely devastated. The realization that the hope of Elena having a temporary problem, but actually being like a normal child had completely evaporated. In an instant I became the parent of a special needs child—a position I never wanted or expected to be in. I thought, how is this fair? There are women out there who wreck their bodies, who are so irresponsible with their pregnancies, who have healthy babies—why ME? Why US? I couldn’t stop my mind from reeling—would my child know I loved her? Would she be able to tell her parents she loved them? Could she ever feed herself? Would she ever sing a song? Would she ever know what it was like to climb a tree? Pick up a penny? Walk on grass? Walk on anything? Ride a bike? Play on a soccer team? Swim in the ocean? There were so many things about my childhood experience I felt like had been struck off the table. I tried to positive around Elena for the rest of the day, but I was miserable. Jason took me aside, and said “Amy—look at her. She is the same beautiful baby girl she was yesterday. Think about that.”
The next step was her MRI. CP is a clinical diagnosis, so an MRI isn’t necessary to qualify her condition. It can confirm a CP diagnosis. The doctors hinted that the scan gives information about the extent of the damage, and they may try to extrapolate future symptoms or expectations. Elena was very functional, so we expected the scan to show a nearly normal brain. We were wrong.
Elena’s scan was horrible. The active (oxygenated) portions of the brain in an MRI scan are white—her scan was basically a black hole where the white matter should be. Again, I was completely devastated, and had crying fits for the majority of the day. We had a PT appointment later that day—that therapist had ‘seen it all’, including tons of MRIs, and she really made my day better. She said she’d seen scans of brains that looked normal, but the children were wheelchair-bound…and she’d seen scans where the brain looked completely black, but the children just walked funny. She said the brain is a funny thing, and you never know how it’s going to wire itself to work. “A picture is just a picture.”
I decided that all the news I’d get from doctors, for the next year, would probably be bad. I expected it to shape up after that. Turns out, I was right.

Signing

Despite her normal hearing, Elena was still essentially “mute” for nearly the first 2 years of her life. Our speech therapist suggested we start using sign language. We bought a DVD, and was AMAZED at how easily the parents in the video could communicate with their babies—even very young babies. We also didn’t think it would be that simple, but since Elena was barely crying to communicate, we’d try anything. We started with the signs for “milk” and “more”, and later introduced “water”, “hi”, and “eat” on a regular basis. Around X months after we starting signing, Elena waived to me in the car. Or, I thought she waived, anyway. She definitely was trying to tell me something. Then she did the sign for “milk”, and waived, staring at me—I realized she had been signing “milk” and “water”, b/c she was thirsty! From there, she learned signs at an alarming rate—she signed over 60 words before beginning to speak. I would recommend sign language to EVERYONE. Elena started talking well when she was 20 months old, and shortly after that the signs dropped off as the spoken language progressed. I still occasionally sign to her, and she understands it, but replies vocally.

Therapy (EI)

At Elena’s XX month checkup, her pediatrician referred me to Step By Step, a community program that works to help babies-at-risk. They referred me to the Early Intervention program, which is a national program that provides therapeutic services, in the home, for children under the age of 3. At this time, Elena could roll over, but could not sit up by herself or stay in a sitting position if placed there. We received speech therapy services once every two weeks, and physical therapy once a week. It was very difficult for me, in the beginning, to figure out how to “trick” Elena into doing PT during playtime. After about 5 weeks, I figured it out. We would never be where we are today without EI. Elena could sit up (if you helped her into that position) by her first birthday.

Medicaid

My husband and I both work, and we live relatively comfortably. After paying the nanny and Elena’s bills, though, I started to seriously question if it was worth me keeping my job. We seemed to be “hemorrhaging money”, and Elena’s next eye surgery was looming, and the doctor was out of network so we were on the hook for a couple thousand dollars. My insurance only covered 30 hours of physical therapy per year, and our bills were piling up. I started asking if there was some other kind of medical coverage available to us, as parents of a disabled child. Our Early Intervention Case Coordinator mentioned two main types, Social Security Benefits and Medicaid. Social Security can issue checks per month—a diagnosis of cerebral palsy is an automatic qualifier, as long as the household income is below a certain level. Medicaid is also income-based. My husband and I make too much money to qualify for either of these programs. Our coordinator mentioned there were 2 “loopholes” we should go for, which might get us into a program where Medicaid income qualification was based on the child’s income, not ours. One was the Mental Retardation Waiver (MR) and the other was the Elderly Care and Disabled Care Waiver (ECDC). We could try the MR waiver b/c Elena was obviously behind in her milestones, and for at least a couple of years, could not be proven to not have mental retardation b/c they don’t really cognatively test babies and toddlers. She knew 2 families that had been waiting on this, one had been waiting for SEVEN YEARS. The ECDC waiver pays in-home caregivers (not parents), a certain amount of hours per week based on need. Normally this is given to the elderly, who cannot cook, walk, bathe, etc. themselves—but infants have many of the same needs. Since we already had an in-home caregiver (the nanny), and Elena needed total care, I decided to go for this one. Once in on either of these waivers, complete Medicaid coverage (as Elena’s secondary insurance) would follow. Our coordinator had never had a parent try for the ECDC waiver, so she didn’t know how long it would take for me to get an answer. I happen to be very nice, but persistant, on the phone—and demand to talk to an individual instead of a machine or automated menu whenever possible. This really worked out for me. We had our first visit from the Managed Care office at our home in XXX weeks. We made it through on the waiver and got complete Medicaid coverage. The entire process, from my first phonecall to the green light, took XX weeks. This secondary coverage has been a lifesaver!!

Eye surgery #1

Elena had her first strabismus surgery when she was XX months old. Basically, they move muscles on the eyeball “forward or backward” to give her eyes a more straightforward appearance, and hope 1) this allow the visual cortex to process images with both eyes, with depth perception, 2) and that the brain locks on to this as the proper way to see. It’s an outpatient process. I was a complete wreck, worried about such a little baby going into surgery… Jason wasn’t really nervous—or else, he didn’t show it. The doctor was the only pediatric opthamologist in my city, and he came well-recommended. After the surgery, Elena’s eyes were a little puffy, but within a day or two her eyes did look better (but not much). She got checkups a month after, and Jason and I didn’t think the surgery really “took”. The doctor was adamant that she was fine. I actively (and initially, calmly) disagreed with him. The general rule with strabismus and infants is they’d like to “fix” their vision, if possible, by two years of age. I went to my last visit with my local doctor YY months post-op, where he insisted she was fine. I spend the next 6 months visiting 4 more pediatric opthamologists, all of whom said she was NOT fine, and needed more intervention. BREAK Some of these doctors were terrible. The last one I went to was recommended to me by my mother’s neighbor—her son unfortunately passed away due to brain cancer—she knows EVERY doctor and specialist around. The doctor she recommended is terrific—respectful to parents, open to questions, gentle and reassuring with children, as are his entire staff.

Annette

We didn’t know the first thing about hiring a nanny. We looked online to see what they made, which is variable—but the bottom line seemed to be it was at least twice the cost of daycare per week. That stung, but we were convinced that Elena needed to be home during her first winter. I wanted someone who loved kids, who had experience with preemies, who was college-educated, and who knew infant first aid/CPR—basically, I wanted me as a nanny (but who was willing to work for much much less). Ideally, we did not want a live-in caretaker, but we were trying to keep an open mind. We also decided we would not hire an illegal worker, as we would be paying them in accordance with the tax laws. I thought I found a good candidate, but she wanted 20$/hr, and this was her first job—and she was only planning on working for a season! We had an excellent reference from my husband’s coworker. This woman did not meet all the expectations on my list—but she had 7 years experience, loved children (but had none of her own, which I considered an advantage). We met with her, and it was hard to gauge whether or not it was a good fit, but we were out of time. Her asking salary was actually below our agreed weekly minimum. We decided to hire her for a “month trial” basis, where either of us could pull out with no hard feelings. We had been paying the daycare “on retainer” until we were happy with the home care situation. At the end of that trial period, we bumped up her pay, and everyone was happy—she was happy with her job and extra happy with her pay, and we were satisfied we weren’t taking advantage of her services. It turns out our nanny not only loves kids and has great experience, but she also had a foster sister with CP and she was a preemie herself. By my request (and I paid for her time), she got infant CPR/first aid certified, and she accompanies us to nearly all Elena’s therapy appointments. When Elena was an infant, she wrote down what she ate and what kind of diapers she made, and any changes in her behavior. As Elena gets older, she does PT at home with Elena while we are at work, reads to her, and tries to teach her new skills. Elena calls me at work every day after her lunch. Sometimes I wonder if my daughter has a closer relationship with our nanny than she does with me…but maybe all parents wonder that. I bought a clunker car as my work commute car, so the nanny could take Elena out to Storytime or lunch, or whatever (she has a great driving record) in our nice safe Forester. Hiring Annette was one of the best things we ever did.

Daycare

Elena started daycare at 6 months of age. She was very small, very quiet, and her cross-eyedness was pretty obvious by then. The caretakers were very nice, very loving, and we were happy with the environment. When I would come to pick her up, I would see the caretakers on the floor with a fussy baby, trying to calm them by holding/bouncing them in one hand while tapping a bouncy seat to calm another fussy baby. The quiet/well behaved babies would be around them, in other bouncy chairs or on the floor. I realized that most likely, Elena was in a bouncy seat, probably largely being ignored, during times like those. It made me a little sad, but the reality is, “the squeaky wheel gets the grease”. I know they cared for my little girl, but the differences between she and the other babies grew on me each day. As winter approached, I learned about RSV season, and it scared me to death. I took Elena to daycare every morning, thinking, “am I risking my daughter’s life for my job?!”. I started thinking about home care. The nanny search started in earnest right before Elena’s first strabismus operation. I had my parents come to help care for her after Thanksgiving, and we decided to hire a nanny. It turned out to be the best decision ever—RSV ran through the daycare 2 weeks after I pulled Elena out. One of the babies, a term girl, was hospitalized and never came back.

Delays

While we didn’t know much about babies, we figured Elena was a little different, but we weren’t sure if that was just “a preemie thing”, or if she was just late, or if she was fine but different, or if she actually wasn’t fine. Here’s the short list:
Volume. Elena barely made sound—didn’t babble, didn’t coo, didn’t cry—hardly ever, and certainly wasn’t anything remotely close to colicky. People who would come to visit would say “oh, wow, she’s such a good baby”, which we’d wonder why she was so incredibly quiet. I refer to these months as her Mute Period. She did turn when I made sound—or, I thought she did, but I couldn’t be sure. She was tested for deafness when she was XX months old. She has one tone missing in one ear—which means she hears as well as you or I. For whatever reason, she just didn’t make sound, really.
Vision. Elena’s eyes were always “off”. At first, I wasn’t sure if this was a big deal, but as she got older week by week, it was obvious she was cross-eyed. They call this congenital (born with) strabismus (crossed eyes). It was pretty bad, her eyes looked “pegged in”. Her pediatrician immediately noticed—but didn’t tell us, at first, that congenital strabismus is a hallmark of neurological problems. He waited to see how she was progressing in other areas—which was fine, b/c I probably wasn’t ready for more bad news, and in any case specialists would have waited a couple more months, too.
Eating. Elena was NEVER a good eater. Her best bottle-fed moments were maybe 6-8 ounces of breast milk at a time. She has never, even now, voraciously eaten any type of food. She also rarely spit up. In retrospect, maybe I wasn’t vigorous enough in getting her to eat. Her doctors thought she was growing okay, she wasn’t “failing to thrive” or anything, but she was definitely not gaining weight like other babies. Appetite/size was sort of chalked up to “well, you’re small, and your husband is small, so maybe she’s just small” type of thing.
Movement. I now know that babies, even tiny ones, do a certain amount of “writhing”. Elena never did this. She wasn’t necessarily a “noodle”, or a stiff board, but in general she’d just sit there in her bouncy seat. She didn’t move her arms a ton, but she did move them, and she definitely moved her hands more than her feet. She did kick her feet, but not much, and she tended to do them together, symmetrically. She certainly didn’t bring her legs to her stomach much (like a reverse crunch), or twist her midsection. She rolled over early, due to the strength of her “back arch”—we learned (much much later) that back arching, like she would do, is common with spastic CP.
Constipation. Elena was constipated from day 1. Even on a diet of breast milk, she had very irregular bowel movements. At one time (still, only on breast milk) she had gone 5 days without one. The nurse was not concerned—she said it was normal for babies to “have bowel movements from 4x/day to once every 8 days”. I was appauled—what kind of range was THAT?! I tried mixing juice, prune juice, and corn syrup in her breast milk, and nothing worked. She’d eventually have what we called “a blowout”. I knew we’d have to do something about this, but figured Breast Milk Is Best, so we were doing the right thing. See Breastfeeding a Preemie.
Anemia. At E’s pediatrician (I forgot which month checkup), they did a routine iron test. Elena tested so low they thought there was no way it could be correct. She was severely anemic—which could have accounted for her lack of energy/hunger/movement. She was immediately put on an iron supplement—and even though iron uptake is normally very fast, checkups week after week still had her testing very low. We started suspecting a problem with her chelating iron/heme in her blood. The test results proved normal, despite the low numbers. She was on the iron supplement for nearly a year. Needless to say, taking iron tends to lead to constipation—a problem we already had.

Home

Having Elena home was mostly great. The first night home was our first night without monitors, and I was so nervous she’d stop breathing Jason and I took shifts to watch her (Jason, for the record, was not nervous, but we did stay up to give me peace of mind). During feedings she tended to be “sleepy” and I had to pinch her a couple of times to make sure she was okay. I asked her pediatrician if I was overreacting, and he said ABSOLUTELY NOT. We thought Elena was a good baby, as she hardly ever cried. She was so tiny in her big huge crib, and her preemie clothes—it was hard to imagine she would ever grow out of anything.
The worst thing about her coming home was I only had a week left of my maternity leave. I fought hard for extra time, and they gave me 2 more weeks. I was pretty angry about it. Since she had come early, we hadn’t gotten daycare figured out, and she was on my insurance, and I had planned on keeping my job. We got The Grandparents to fill in after I went back to work, and eventually we got a spot in a daycare we liked.

TRANS

During her 4th hospital week, she was transferred to the Transitional Nursery—still technically part of the NICU, but basically a place for babies to bulk up and get ready to come home. We learned to give Elena a bath, and started her bottle feeding, with little success. Elena did not have much strength to suck. This did improve, and eventually she could breastfeed, but poorly. Putting weight on seemed to take forever, and she’d still have apnea and bradycardias. We had to wait 9 days without any As and Bs before we could go home, and she had to weigh close to 5 lbs.
2 days before she was ready to come home, she had an “episode”. I can’t really remember if it was an A or B, but I definitely remember the nurse not thinking it was anything, and me thinking “PLEASE don’t send her home if she’s not ready!”. I was extremely nervous about the homecoming. Jason was ecstatic.

The NICU

Prior to our first visit with our daughter, a nurse met with me. She asked “do you know what it means to be premature?” I told her yes—it meant that she was tiny, and underdeveloped, and that she wasn’t strong and able like other babies. She looked relieved.
Nothing prepared me for my first visit to the NICU. It is a stark place—sterile, cold, busy, methodical, beeping…nothing like the warm, loving environment one envisions when seeing their new baby for the first time. We passed other parents at their babies’ bedsides, no one meeting our stare—and no one happy. Our daughter was in the fetal position, looking like a tiny little bug, with a little hat on and a preemie diaper that swallowed her, in a bright plastic enclosure. She was covered in tubes. My heart sank. I thought there was no way she was going to make it. I was afraid to name her. She was Handy, Girl for 2 days. She weighed 3 lbs, 5 oz, and if I had cupped my hand over her back, it would have covered her.
Those next two days were devastating. Every time you enter the NICU, you feel like it could be the worst moment of your life. Everyone can care for your baby but you. It is hopelessly depressing, especially in the beginning. Jason was very encouraging. He would stay close to me, smile at me, smile at our baby. I felt like the only way I could help her was to use my breast pump—which I did—but she wasn’t able to use the milk. I felt extremely useless, and blamed myself for my baby’s condition.
Lucky for me, I snapped out of it after those 2 days. We started Kangaroo Care, where you hold your baby against your skin, and that made me feel important. I decided that while I may not be a nurse or doctor, I am her ONLY mother—and that my job was to love her like a mother should, and no one else could do that. It gave me a sense of purpose, a source of strength, and a renewed sense of energy. We named her Elena Renee.
Elena remained in the NICU proper for 2 weeks. I stayed at the hospital during the day (I work in another wing, so I’d walk around between NICU visits and pumping), and my husband would come visit after he got off work. We learned how to change her diaper, monitor her progress, how to hold her and change her dressings. We learned how to watch her instead of the monitors when the alarms went off. When she started receiving nutrition (through a nasal tube), we’d follow how much she ate. She had 2 rounds of indomethicin to close her PDA, and had light therapy for jaundice. Overall she seemed to be doing well.

Pregnancy and Premature Delivery

My first pregnancy wasn’t exactly planned. Let me rephrase that—it wasn’t unplanned, either—basically we had decided that we were ready to start a family, and so whenever that happened, it would happen. It took about a year.
I was never sick. I was extremely active—I played out the rest of my co-ed soccer season (playing at about 60% capacity), and kept teaching aerobics until I was 5 months pregnant. I walked to and from work, or rode my kick-scooter, about a mile each way. My husband and I traveled, including a trip to Paris when I was 5 months pregnant. There were no obvious defects in any of my doctors visits or ultrasounds—the baby was measuring slightly small, but both my husband and I are small, so there were no worries all around.
We went to Puerto Rico when I was 32 weeks pregnant. I had checked with the doctors beforehand, they said everything would be fine. I didn’t eat or drink anything I wasn’t supposed to. I don’t think this has anything to do with my early delivery, but since it was close, I figured I’d mention it.
A week later, we were at a bar for a friend’s birthday party. I went to the bathroom, feeling “not quite right”, and my underwear was wet, but not much. Still, since I felt kind of nervous, we left and I called my doctor. He said to call if anything changed.
I watched reruns of Law and Order for 3 hours. I had decided I was worrying about nothing, and decided to go to bed. I went to the bathroom one last time, and the wetness was slightly pink. I called the doctor.

“GET IN HERE.”

I wasn’t exactly scared, b/c we figured, with anything pregnancy-related, things take time. So we just got our shoes on and got in the car. I figured they’d take a sample, send us home, and we’d wait for a couple days before they told us it was nothing. Well, at the bottom of the hill of our housing development, my water broke all over the (new) car. (Forget the “gush or trickle” business the birth class people tell you—if you were like me at 33 weeks, think more “gallons and gallons”.)
I arrived at the ER, having been diagnosed with a “gross hemmorage” of my bag of waters. They placed me in a hospital bed and put monitors on me to decide if I was going to go into labor. They said if I didn’t have contractions, they’d keep me right there and let me make more amniotic fluid, and keep the baby in as long as possible.
My contractions were 5 minutes apart. They strapped me to an ambulance gurney and said I’d be going to another hospital—the one I was in didn’t have a NICU, and I was going to need it.

I was transferred to the University of Virginia hospital. Coincidentally, this is also where I work. It’s a teaching hospital, which has its benefits, but not when you’re giving birth. I spent the normal 12 hours or so laboring, and much to my dismay, drug-free (I was given Stadol once at approx. 3 am to try to help me sleep. I didn’t.) I wanted an epidural, but they refused to give me one as they kept losing my baby’s heart rate and needed me to contort around so they could find it again. I did this a lot, especially nearing the actual delivery. At one time, they lost my baby’s heartbeat for 6 minutes (I didn’t realize this until a year after the delivery). It’s possible she suffered brain damage at this point, but it’s more likely that she was small and in the wrong place for the monitor to pick it up. I owe my strength at delivery time to my husband Jason, who screamed at me the whole time during the birth—and I say that graciously, as everyone was yelling in that room, but he was the only one I was listening to. I gave birth to my baby girl, amid maybe 20 people (mostly students), on April 30th 2005 around noon. The doctor showed her to us, for a couple of seconds—she was all wrapped up, and looked like a little just-born baby to my husband and I. We were so proud! Then, they whisked her away. We didn’t feel that strange about it, b/c we didn’t know that wasn’t the normal way of things, as this was our first birth experience. They finally gave me some drugs, and I slept for a couple of hours.