Little Moments to Remember

September 2-8, 2013
Monday was Labor Day so Allen got to stay home with us. We went on a run and stopped at the new, nearby gas station for Icees after playing at the park.

Caleb's first Icee/Slurpee.

Tuesday we had Leila's follow-up pediatrician appointment, which consisted of updating her on what happened in the hospital. That was about it... oh and my kids picked up pink eye too. It showed up on Wednesday, which made me sad because Bethany Warr was in town and I was planning on going to see her Thursday morning. We didn't want her kids to get sick as they were driving back to Utah the next day so we didn't get to visit her. :(

Such a calm, easy-going happy baby despite everything!

We're trying to get strong enough to sit up!

A definite plus to our hospital stay is that I discovered that Leila has problems tolerating soy, in addition to dairy that we already figured out. So now begins our dairy-free and soy-free lifestyle. (Sometime in September or October we discovered Leila couldn't handle egg either, so we had to cut that out too. If anyone is breastfeeding a child with one of those sensitivities, I can point you in the right direction for food/recipe options!)

Highlight of our Walmart trip: looking at the fish! 

Caleb's favorite part of watching Thomas, is when it shows real people instead of the animation.

Caleb loves jumping in puddles!

Moments to not forget that I wrote late at night on my iPod touch:

Caleb staying awake, reading books by nightlight 

Watching her big brother with a look that encompasses emotions ranging from awe and admiration to love to "ow! that hurt" and back to love again

Doing shadow puppets on Caleb's bedroom wall

Nursing Leila at night

Jumping in puddles

Stop signs and looking for cars on our walks

Leila pulling her tube out, broken pump

Shower baths with bubbles

Wrestling with dad

Squeals and giggles from ticklish kids (and Mom)

Green light means go and our backseat driver asking to go faster

Caleb asking to sing faster and slower when singing the popcorn song

Playing the piano on the bench

Learning how to hug

Playing with trains endlessly

Kissing noises

Recovery from hospital: back to happy, smiley, active baby 

Saying please

Following neighborhood kids around, helping them sell cookie dough

Toothless smiles

Not able to go to bed without sharing pretend cake from Go Dog Go with Dad

Recognizing when we're near sonic and asking for fries. (Their fries aren't great but we always get coupons for a free route 44 drink with any food purchase and he loves fries! So we went there about once a week in the summer.)

Patience from both kids about the number and frequency of doctor's office visits. 

Breaking away from nursing to smile and talk to me before diving back in for more. 

Walks to the mailbox in the cool evenings (only 88 with a breeze most nights this week!) after the kids are in bed. 

Playing in Mom and Dad's bed

Both kids in the swings 

Long walks to and from the park... Running, jumping, spinning, smelling flowers, throwing sticks in the water, watching birds and squirrels, waving at every car and truck that passes and twisting hands with excitement at the school busses we missed watching all summer. 

Relief to find out Leila doesn't have spinal muscular atrophy

Wearing church shoes everywhere, wearing one black church shoe and one red Nike everywhere 

Watching the fish at Walmart

I love her sleepy, cuddly moments after she finishes nursing.

Here's an excerpt from my journal on September 4th:
"Life is a rollercoaster: a couple of weeks ago I had a recentering, where I set daily goals for myself (study scriptures 10-15 minutes, play piano 5 minutes, replace time on facebook with reading/writing, at least the 7 minute workout when I don't do any other exercise, run once a week and lift once a week, 3+ servings of fruits and veggies, 8+ glasses of water, visit teach). I was feeling great and was consistently meeting my goals every day! And then on Friday Aug 23 Leila was admitted to the hospital and I was there with her until Thursday Aug 29. Nothing has been the same since then but today Leila has started acting back to normal. I am working to overcome frustration with doctors about the whole ordeal and am skeptical about tube-feeding."

In hindsight, those couple weeks of reaching albeit simple goals, helped prepare me for the upcoming week of hospitalization and the waiting period of up to 6 weeks to wait for Leila's genetic results to come back.

Sept 5th:
"Great news today from the geneticists' office: Leila does not have spinal muscular atrophy! Over the past couple of days I've had a definite peace about Leila... that everything would be okay. When I heard the news, I was relieved and grateful but not surprised."

This is a letter that I wrote to my friends whose baby died from SMA. They had asked people who had been touched by the story of their son Mathis to send letters. I want to include it here because it summarizes thoughts and feelings I had at the time, not written almost a year and a half later, like this blog post!

My daughter Leila was born March 16, 2013. She was born full-term and everything seemed normal until her second night in the hospital when she began choking on mucus. To keep our long story short, she was admitted to the NICU and kept there for a week and we left with no answers. 

Shortly after she came home I began following your blog as I was up at night feeding her. I was in the Athletic Training program at BYU with Dujuan and was saddened to hear about Mathis' diagnosis. As the days and weeks passed with many night awakenings and little sleep, your blog helped me grateful for each moment I was able to hold her, even multiple times a night. 

Leila continued to have frequent choking episodes that lasted anywhere from a few minutes to an hour, when I would have to suction her over and over to get her to breathe. This was unlike anything I had to do with my son and I wondered what was wrong and why it was happening. 

During this same time, I read about Dujuan having to suction Mathis and prayed for your family, feeling like I had only a small glimpse into everything you were dealing with. I marveled at the strength you showed and the weaknesses/trials you shared as well. I prayed and hoped that Leila did not have SMA, but knew something was not right. I thought, I am not as strong and Dujuan and his family, I cannot go through all of the things they are going through. 

Leila was admitted into the hospital again when she was 3 months old and the doctors did lots of tests. We left a few days later without any answers and the doctors still puzzled. Fast forward to 5 1/2 months old (the end of August)... admitted to the hospital again and put on a feeding tube. This time the geneticists (among other specialists) were called in. They asked if anyone had told us she had low muscle tone and proceeded to tell us they were going to run genetic tests for SMA, Prader-Willi and a general microarray deletion test. 

When the geneticists left the hospital room, I cried. I drew strength from your family. Leila and I spent a week in the hospital this time... we left without answers again, but knowing we'd have to wait a couple of months to hear back about the genetic tests. I wasn't sure how I would handle things in the upcoming weeks, waiting and wondering. I knew that if the test came back positive for SMA, I wanted to follow your example and do a hope list. I woke up at night crying, after dreaming that I would have to tell my (almost) two year-old that his sister was in heaven and he wouldn't see her for a long, long time. At this point Mathis had already passed away but you hadn't written your blog about it yet and I cried for your family and what you must be going through trying to explain to your boys about their baby brother.

On Fast Sunday in September, just a few days after being released from the hospital, my family and close friends fasted for Leila. I did not expect much to come from the fast, because she either had a genetic disorder or she didn't... the fast wouldn't change anything. But it changed me, and I didn't even fast (breastfeeding). From that day forward, I was comforted. 

I had bad days and good days. Frustrations with her feeding tube, frustrations with lots of doctors' appointments, frustrations with not being able to fix anything and feeling inadequate as a mother. There were times I would break down and cry at the park because Caleb wanted Leila to sit in the swing but she couldn't hold herself up enough to sit in it, even at 6 months old, and I wondered if she would ever be able to do what other kids can do. There were moments of jealousy as I watched my friends' babies that were about the same age begin to do things that she was nowhere close to doing. But there was a sense of peace that came, when I allowed it. The Spirit helped me know that everything would be alright, even if it meant that Leila might return Home sooner than we wanted her to leave her earthly home. I knew in my heart (and not just my head) that whatever happened was in the Lord's hands. 

I read and re-read about Mathis and your adventures. I thought of all the things you did as a family, regardless of the difficulties and setbacks. I cried and laughed and smiled as I read and looked at your pictures. I could feel your family's love for Mathis. I continued to draw strength from your family. 

With help from occupational/physical therapy, Leila began to improve. I was pretty sure that if she had SMA, it was not type one, like Mathis. Toward the end of September I got a phone call from the geneticist. Leila did not have SMA. I felt relief. I felt guilty that your family had to endure all that SMA entailed and I didn't have to. 

On October 3 we found out Leila has a genetic disorder called 22q11.2 deletion syndrome/DiGeorge/VCFS. When compared with SMA, it was a relief to hear this diagnosis. While she will most likely be delayed developmentally (cognitive, motor skills, communication, etc) and will continue to have medical problems that require frequent meeting with specialists, she will be our little angel forever, just like Mathis is yours forever. 

Mathis, your family and your story continue to inspire me. He truly is a miracle that touched lives in just a few short months because you were willing to help him make the most of his time on this earth and willing to share those personal and precious experiences. Because of your examples, I have strength to do all that I need to... even when I feel like I can't spend one more hour in a doctor's office or hospital. Because of Mathis, I am more patient with my children and I hug them a little tighter. Because I have been blessed by reading your story, I have been sharing his story with many others too. I know your struggles as a family are far from over as you miss him every day. My prayers continue to be with you. Thank you for sharing Mathis with us.

"Hospital, oh hospital, I hate you, you stink. I wish I could wash you away in the sink." -Jack Prelutzsky*

*The word hospital was changed from the original word homework.

August 26-September 1, 2013

When being admitted last week, we were told that we would probably be released Monday. But with all of her vomiting over the weekend, she lost weight instead of gaining it and they were wanting to send in an occupation therapist and a geneticist. 

Thankfully Grammy was at home with Caleb so Allen could go back to work Monday. Since he works downtown, he rode the train over to have lunch with me in the hospital room. I liked having him visit.

They gave Leila a stuffed Memorial Hermann giraffe, that's almost as big as she is.

Leila and I get woken up every couple of hours at night to force Nutramigen down her tube, check her vitals (completely unnecessary for her since she isn't sick--I eventually got a couple of nurses who let us avoid vitals during the night), 4 am heel prick for a test they had done the day before, and I also had to pump because she wasn't eating and I wanted to be able to nurse so she wouldn't be dependent on the tube-feeds. That, in combination with LifeFlight helicopters coming and going throughout the night and general hospital noise from other patients and the hall, we weren't very well-rested, which added to my frustration.

Grammy bought Caleb some underwear, with the idea to do some potty training while she was here with him. That didn't really happen but he likes the underwear.

On Tuesday or Wednesday Caleb, Allen and my mom came to visit at the same time. My mom packed a picnic for us to take to the park while she stayed with Leila. Leaving the 8th or 9th floor of the hospital (or whatever floor it was... the floor directly below the LifeFlight helicopter landing pad) for the first time in a few days lifted my spirits. It was fun to be outside playing with Caleb.

They had a movie night and bingo night on our hospital floor. Caleb mostly just liked to stick the bingo marker things in his mouth, but we played until he won some toy cars.

The geneticist asked a bunch of questions and then told us they would test for Spinal Muscular Atrophy (my friend's son had just died from this at about 8 months old), Prader-Willi Syndrome, Cystic Fibrosis and then a general genetic screening test. The disorders they told me they were testing for weren't particularly comforting, but I knew something was not normal with Leila and was eager to find out what was wrong so we could know what to do to help her.

The OT was unsuccessful at all of her attempts to get Leila to take a bottle or baby food and recommended we get help after leaving.

When you don't expect to be admitted to the hospital, you don't bring anything with you (ie clothes). And then when your baby vomits all over the few changes of clothes your husband brought you within the first 24 hours of admittance, there isn't much variety in the clothes you have to wear... which is why I'm wearing the same clothes in all of these pictures.

Grammy and Caleb were such troopers: driving all the way downtown to so I could play with Caleb for a couple of hours.

I sure missed being with this cutie all day! When he and Grammy would come, he and I would go play in the play room and run laps around a "track" in the open area. When the nurses saw him, it helped them be nicer to me too. There seems to be a stigma against mothers of babies who fail to thrive... they assume you're just not feeding your child or taking care of them and are negligent. After they saw him and he'd do his cute, shy wave and smile, they were much nicer to Leila and I.

On Thursday morning, they told me we were finally going to be discharged! I got excited and packed up, only to realize that it was still going to be several more hours... it was a joke. It took soo long to be discharged because we couldn't leave until we had blood work done, but they couldn't get insurance approval to do the blood work done because they had submitted discharge papers.

Eventually the genetics clinic stepped in and we were able to be released and walk over to the genetics office to get the blood work done. It was way better to go there because Leila is so hard to draw blood from. While in the hospital the nurses couldn't ever get a good blood draw. They would eventually just prick her heel and attempt to squeeze out enough blood that way. The phlebotomist at the genetics office was amazing and it wasn't a traumatic experience.

Getting ready to go home. The nurses had me practice taping her tube in place to make sure I'd be able to do it at home. Thanks to Athletic Training, I was a taping pro and the nurse was impressed. 

Thursday afternoon, after almost a full week in the hospital, Leila and I got to come home! She still has to be tube-fed, in addition to breastfeeding. We have a nurse who is supposed to come to the house weekly. We have prescriptions/referrals for OT, PT and ST that we need to schedule appointments for. And we are supposed to follow-up with our pediatrician as well. For now, we'll just enjoy being home!

They really love playing together! We do have to remind Caleb not to pull on her tube.

Leila acts uncomfortable every time we tube feed her because they're giving her so much! She still likes to breastfeed, even if she doesn't nurse for very long. I still am pumping to keep up my milk supply though and our freezing is getting stocked up!

Leila pulls her tube out almost every day, which is good because it gave the rashes on her cheeks (from the tape) a little bit of a chance to heal. But it means that I have to shove the tube back down her nose and throat while holding her down on the bed, which I hate.

I got to enjoy a couple of days at home with my mom before she left. We went to the park, went swimming, built forts and just played.

He loves to look upside down on the swing.

Jumping in to Dad!

The Doctor Visit from Hell.

August 19-25, 2013

Based on some of the pictures, it looks like this was a pretty good week but I remember none of it because it was all overshadowed by Friday's doctor visit. I had to wait for over a year to write this post because every time I sat down to write it, I got frustrated again. I tried to write true to my feelings at the time but now have the benefit of hindsight and perspective. 

Caleb pulled the bathtub out from the cupboard and pretended to bathe himself for a while.

Caleb likes to wear his beads from Grandma and Grandpa everywhere. 

One thing I do remember, was that I was really sentimental around this time. About the time Leila came home from the NICU, I began following a blog about Mighty Mathis (my friend's son) who had Spinal Muscular Atrophy, Type I. He had been diagnosed when he was about eight months old and passed away in the beginning of August, just a few months after his diagnosis (I can't remember details of his timeline and they made their blog private so I can't double-check). 

With everything we'd been going through with Leila, there were similarities to Mathis' experience, and I knew things weren't normal with her. As I would read about their family's experiences (often while holding Leila after one of her many choking episodes), I would forget about the inconvenience of not getting much sleep or the fear I felt each time I held my daughter with her blue lips and repeatedly suctioned her nose and mouth to allow her to breathe again (it was usually a weekly occurrence). I was able focus on how blessed I was to have Leila and how blessed I was to be her mother. So, after reading of Mathis' passing, I went to get Leila from her nap and just wanted pictures of her to remember her at this age. 

Laying in her crib after her nap.

Her tiny little hand.

Gnawing on my hand with her gums

Sitting in the chair that she and I spent many hours in together. 

Okay, end of nostalgia.

My hooded boys

I love that my kids love to cuddle with one another. We prop Leila up and he cuddles with her until she tips over.

Already asking to read on the potty!

Beginning of the worst doctor visit of my life. Leila's appointment was downtown at 9 am and Allen was kind enough to accompany the kids and I. I don't know how early we left to get there on time, it was our first downtown doctor's appointment. Our pediatrician strongly recommended we see a GI specialist for Leila because she was gaining weight so slowly and was still labeled with failure to thrive at her three month appointment. We had been unable to get her to take a bottle, which the pediatrician had had us try to add extra calories to. It took us two months to actually get to see the doctor so I assumed it was not that big of a deal. If it was an emergency, they'd get us in as soon as possible. . . so we went. I was thinking we'd see a doctor, he'd say, "she's small but healthy" and we'd be on our way. 

Waiting . . .

If we ever got a fishtank at home, there would be nothing magical about fishtanks when we go to doctors offices or Walmart.

Waiting patiently for her turn to see the doctor.

We got called back, they got her measurements, we talked to the doctor. We gave a brief history. He asked some questions. He talked to his supervisor. They both came in and said, "She needs to be directly admitted to the hospital." WHAT?!!? I was shocked and frustrated. They even said, "She doesn't look like she's failing to thrive but she has lost weight and isn't even on the weight chart." They told us they were going to keep her there for a couple of days to see if they could get her to gain weight through tube-feeding her. Awesome... I called my mom and asked if there was any way she could fly down as soon as possible. She was on the next flight and got here by 5 pm.

While waiting to be admitted, we ate in Memorial Hermann's cafeteria. The GI specialist told me that going off of dairy had no effect on Leila, so I decided that I would go ahead and eat pizza and ice cream. I hadn't had dairy in months! I was skeptical of his advice, but since she was going to be in the hospital anyway, I figured I'd let them see how she responded to my breastmilk when I ate dairy.

After a couple of months without eating any dairy, eating a BlueBell ice cream sandwich never tasted so good! I ate it just how I used to as a kid. 

We were finally admitted, we got to the room, they weighed her and she had not lost weight. They checked another scale, the scales in the GI office were not calibrated. She had gained weight. I was mad! We should not even be here! We're here because their scale was broken. Let me take my baby and go home. Allen left with Caleb because he was so tired.

They told me I could breastfeed her before they began tube feeding, just to see how much milk she was getting. Then before letting me feed her, they shoved a tube down her nose. She was so mad, she wouldn't eat. She kept trying to get it out of her nose and kept gagging. Eventually she cried herself to sleep and I called Allen, frustrated and crying. I started pumping and they gave her breastmilk (tainted with dairy) through the tube. About an hour later, she vomited it everywhere. They weren't sure what was going on. My eating dairy wasn't supposed to affect her . . . so they gave her dairy formula through the tube. Within 45 minutes, she projectile vomited it and started choking on mucousy stuff. They tried again later, with a new nurse because it was after 7 pm shift change. By this time Allen had picked my mom up from the airport, dropped her off with Caleb and came to bring me clothes, toothbrush, computer, etc and stay with me for a couple of hours.

After helping me suction Leila to get her to breathe a couple of times, the nurse called the doctor and got permission to try giving her soy formula at the next feeding. Apparently this was an even worse idea than the dairy. She kept it down for a minute or two before projectile vomiting it everywhere and then got a rash all over her body. The nurse had us try soy for one more feeding. Bad idea.

By the time the doctors made their rounds the next morning, they had no idea what was going on. When you're admitted with a five month old for failure to thrive, most people assume you're an idiot who doesn't feed her child and you're treated that way. So in a way, it was nice for me to see the doctors and nurses be as confused by my daughter as I was. But mostly I was furious. I still felt like my daughter was not failing to thrive, she was just a lightweight. I felt like they put her in the hospital to help her gain weight and all she did was lose weight for 24 hours. I wasn't at home with my sone. They woke me and my daughter up all night to get vitals and make her vomit. And worst of all, it was because their scale was broken!

They had me start breastfeeding her again while they decided what to do. I still had dairy in my system, so she still threw up but not as much as with the formula they were giving her.

My poor baby . . .

The nurses got sick of changing her bedding with each vomiting episode, so they put a couple of blankets down and as each got vomited on, they'd get rid of them.

After my mom brought Caleb to visit on Saturday, the nurses and doctors saw that I was not an incompetent mom and that there must be something wrong with Leila. Instead of just focusing on her weight gain (or lack thereof), they decided to send in a geneticist and occupational therapist after the weekend.

They continued to tube-feed her but changed her formula to Nutramigen. She kept it down no problem. She started gaining weight quickly and they upped the amount of formula, both in concentration and in amount.

One of the hardest parts of being in the hospital was not getting to see Caleb all day! I'd never been away from him for so long. My mom and Allen brought him to visit on Saturday, so I could play with him.

On a seesaw in one of the play areas in the hospital. 

Sunday my mom came to visit me while Allen and Caleb went to church. We talked about how to paint my play room upstairs and the Primary program I needed to write. Mostly, she was just there to keep me from feeling lonely and frustrated.

A bubbly Caleb is the picture I got sent that night at the hospital. I only cried more, missing Caleb, feeling badly for Leila and wishing I was at home with Allen.

Grateful for Grammy

That's the end of this week. Hospital post to be continued . . .

From my letter to Lizzi:
Hey family,

Just wanted to give you a quick update on Leila rather than having you hear through the grapevine... our pediatrician has been concerned about Leila's slow weight gain. She went from 30th percentile to 8th% to 5th% to below 1% without any explicable reason. She referred us to a pediatric GI specialist. The concern is not so much that she is skinny (because she actually looks kind of chunky, for her) but that if she is malnourished while her brain is developing so rapidly is that it can cause irreversible developmental setbacks.

That appointment was on Friday and I haven't been home since... we got directly admitted to the Memorial Hermann Children's Hospital downtown for observation and testing. The diagnosis is "failure to thrive" and things have gone downhill since we've been here. The goal was weight gain and she has lost weight.

They tried tube-feeding her expressed breast milk (since she refuses the bottle) to quantify how much she is actually eating and supplemented formula as well. She threw up everything they gave her for 14 hours (dairy and soy) before they decided to let me breastfeed her during the day and tonight will try a constant drip-feed of a hypoallergenic, dairy-free, soy-free formula through her tube all night.

Problems of vomiting, diarrhea, skin rashes, mucous and choking that we haven't had since she was in the hospital in May have returned... thanks to doctors not believing that she is adversely affected by dairy. Now they are believers even if the blood tests don't confirm she's allergic.

As soon as we heard they were admitting us to the hospital we called Mom and Dad got her on a flight a couple of hours later. She has been here since Friday night taking care of Caleb while Allen juggles time between home and being with Leila and I at the hospital.

We will be here through Monday, maybe longer, depending on tests and stuff. We have been receiving good care and have had the head doctors of pediatrics and pediatric GI for Memorial Hermann checking in on Leila. She has them all stumped. They thought if they gave her more calories she would gain weight. They didn't count on all of these set-backs and are now looking for an explanation, although they did admit what we kind of suspect... she may just be a petite girl. Supposedly we'll be meeting with a nutritionist, occupational therapist and geneticist while we're here. Even if we don't get answers, hopefully we'll at least get enough results to be released soon!