Thursday, October 30, 2014

One Year

Oh, my dear sweet Aleah. Lee Lee is what we call you after your Grandma Holmes started calling you that. Sometimes it feels stranger to have a one year old instead of a newborn. Being a mom isn't just second nature to me; for the past year it's the only nature I seem to know. It hasn't been easy. I have loved almost every minute of it.

There have been more tears on yours and mine parts than we could have imagined. More time spent in hospitals and doctors and car rides than anyone would want. Time spent at home with occupational and physical therapists; hours spent on the phone with health insurance or waiting to get a hold of a doctor's office.

Almost 6 months ago you had a seizure in dad's arms. Before that you were such a sad, fussy baby. You wanted to be held constantly. I walked with you for hours. You wanted to eat every other hour. I nursed or pumped more than I realized was normal. You couldn't stay awake, needing to sleep for 20 minutes each hour. My precious girl, you must have been so miserable. We knew something wasn't normal, but we never knew to check your blood sugar. Sometimes the guilt I feel is so immense that I dread finding out results of the genetic testing currently progressing. What if our genes passed on, unknowingly, this unpredictable hyperinsulinism? I will take you any way I can have you, but I hope you never remember the misery your first 6 months brought you.

To be honest, Lee bug, the first 6 months of your life are somewhat of a dark blur. I remember lots of crying, lots of loneliness on my part, lots of dark days wondering what I was doing wrong. I had pressure to stop breastfeeding, to try something different, to let you cry it out, to not keep you in bed with me. I slept when you slept. I cried in the shower the few minutes I had that dad could take you, all while waiting to hear you scream. To this day a baby crying triggers something scary in me. But guess what? It got better.

With some almost magical (and expensive) medicine you're a completely different kid. Your dad and I realized you must have had low blood sugar your whole life because within a few hours of you having an IV feeding continuous dextrose you were happy, giggly, eager to move and explore. Suddenly you were interested in your surroundings! You had energy to kick, to observe. That first and second night in the hospital? You stayed up for HOURS. This energy was so unfamiliar to your us; a good unfamiliar but exhausting. You didn't want to sleep every half an hour. You didn't want to eat. I suddenly had an oversupply of milk and didn't know when to feed you (I pumped 40 EXTRA ounces in 3 days at the hospital!) I was so used to offering to nurse that I felt like I had to get to know my baby all over again.

After half a week in the hospital we were home. At first it was scary; we needed to find your stable point. We kept a close eye on your blood sugar. We started reading more about this disease and realized how serious it is and how fortunate you were to have a mild case. You explored the house with new bright eyes. Within the next week you were sitting up by yourself! You started talking to me, sleeping longer than 2 hours at a time, and wanted to learn and interact. We read books, we played with toys, we went on walks, we dare take unnecessary car rides to see dad at work or go to the store for fun. We got out of the house! You let dad hold you! I didn't have to take 5 minute showers. You played on the floor while I got stuff done. You smiled. Oh, your smile. I begged for it before you were diagnosed. Every day, every morning you wake up with it, I cherish it. It's the most beautiful thing in the world to me.

We realized you weren't quite up to other 6 month olds, though. You weren't rolling. You couldn't eat any solids without gagging. Around 7 months you were acting like a 3 month old, minus the sitting up. Your fine motor skills were good, but we knew we wanted you to catch up as soon as possible. We got you enrolled in an early intervention program. Several times a month physical and occupational therapists have come to our home to give me ideas, observe you, and assist with exercises.

One night your dad and I had laid you on your back and both turned around to get something. When we looked back you were on your stomach. We looked at each other, both asking the other if we had flipped you over. We hadn't! We were so excited we called both sets of grandparents to brag. You started to figure it out. I learned that if I let you play on your back in the crib you'd eventually flip to your stomach. Finally, around 9 months, you were rolling pretty confidently both ways. You had more upper body and back strength, pushing up and occasionally getting on your hands and knees.

Around 10 months you developed an army crawl. Your physical therapist taught us to push your foot down against the floor when you were on your stomach and your knees were bent, so that you pushed off. You learned to scoot around and suddenly I couldn't leave you alone or stuff on the floor. Every once in a while you'd take a couple of "steps" while on your hands and knees. One evening we were out pulling weeds. We'd set you down a few feet from us but you wanted to get to the bark. You crawled 5 steps to dig your hands in (you really like to get dirty, which is awesome, but kind of drives my OCD nuts—don't worry, I'm learning to deal). Before you were crawling you were trying to pull up on stuff, like the couch and and tub.

And then, around 11 months, something clicked and you were cruising all over. It was amazing. I lost you behind the couch, under the table, you'd suddenly be behind me when I went to go do the dishes. For the first time ever, I couldn't leave you alone on the bed for longer than a few seconds. I started putting pillows around you while you slept like the Great Wall of China, since you still only fall asleep with me on the bed. You fell off the bed for the first time ever, onto pillows, but it scared you silly. Usually you cry for me when you wake up. Now I have the monitor every time I let you sleep by yourself, and I start sprinting whenever I hear start to wake up.

One of your favorite things is to hang over the side of the couch, bed, chair, high chair, or whatever and drop stuff—usually your binky. You love if I hide behind the edge of the bed on the floor and you crawl over, screeching and giggling, to wait for me to pop up and scare you. You tease me by trying to go over to the dog bowls and I chase you, which causes you stop and giggle uncontrollably.

One day you surprised us by climbing up the stairs—all the way—having only played on them once.
Now, you are crawling anywhere, pulling yourself up on every surface you can get reach, sitting on the dishwasher door while I try to load dishes, and climbing into the fridge. It's only been three months since you started rolling, Lee love, and suddenly I'm chasing you everywhere. I'm so proud of you.

I'm so proud of how far you've come. I had your medical records printed out from your birth and ER admission. Your glucose levels were in the 30s THREE TIMES that were tested while you were there. That's not even normal within the newborn range. The pediatrician who has dedicated his life to researching your disease believes that brain damage occurs as high as the 60s.  I'm mad at that hospital. You should have had an IV put in; you should have been transferred then to Primary Children's. It's okay though. You're okay. You're our precious, beautiful, curly haired girl. You're catching up so dang fast. And in about 24 hours from right now as I write this (22:06 on October 31st) you'll be one year old. I can barely believe it.

I don't know what this next year is going to bring but hopefully it will consist of much more laughter than tears. No matter what comes we will cherish every second of it, Aleah. You are the most beautiful blessing we have ever had. Despite the hardships we've had I know I would do it all over again in a heartbeat. Thank you for coming into our lives and sharing your special personality with us.

*These amazing photos were taken by Makaela Herran.

Wednesday, July 16, 2014

Our Last Day at PCMC

It was finally Tuesday, hopefully our last day at the hospital. The night before Aleah slept in a crib for the first time by herself, with many interruptions and me soothing her back to sleep or nursing after her sugar was checked. Casey slept on a thin mattress on the floor next to me while I was on the couch. Our morning started out by an Asian accent telling Casey he couldn't sleep on the floor because of fire hazards. Another doctor not helping us out. She was the attending that day, I think, but I'm not really sure of what she said or what she was doing. We never saw her again.

I stayed asleep with Aleah while Casey showered and got us breakfast. Dr. Clements came in and quietly spoke to us while Aleah slept some more. (Poor girl was exhausted.) He told us that the diazoxide seemed to be working well and that after a few more blood tests, assuming they came back normal, we should be able to get home. We questioned him and he answered us patiently, taking an hour or so with us. He also said the diabetic specialist nurse would come in to explain the glucagon shot and blood glucose monitor.

I was dreading the blood tests, the idea of Aleah being pricked again. Luckily it turned out to be just a heel prick! While we waited for the results a nurse came in to explain the glucagon shot, an emergency shot that we could give to Aleah in case she had another seizure or her blood sugar dropped dangerously low. The results came back and her triglycerides came back way high, at 421 where a normal high would be 110. This instantly worried us because this could be a sign of a liver issue, which is associated with metabolic disorders (often go along with CHI). The test was ordered again and we anxiously waited, afraid we might not go home after all. Other family was planning on visiting but we felt like we were in limbo.

We were trained on the glucose monitor and then left alone to wonder. Our awesome nurse was on lunch so I couldn't bug her to check to see if the numbers were back. She came walking back and said, "Are you ready to go home?" I wasn't sure if I heard her right so I asked about the triglyceride levels. She said, "Let's check." She logged in and they were normal! She already had the discharge papers waiting for her when she got back. Too bad the doctors didn't stop by to let us know as I paced the halls wondering. My parents and Emilie came back to see us off, except at this point Aleah fell asleep so we decided she needed to rest while we got packed up. Casey took stuff down to the truck and I tried to let it sink in that we were finally going home.

The mood was lighter, relieved, happier. I finally felt like we could relax just a little, even though I knew our hyperinsulinism journey was far from over. Aleah woke up after a brief nap and we were finally ready to go after getting her dressed. We stopped at the pharmacy on the first floor to get her medication and walked out to the parking garage where we said goodbye to my parents and Emilie.

We haven't had any major blood sugar scares, but Aleah is definitely playing catch up for basically missing the first 6 months of her life. She's 8.5 months as I write this; it's been 2.5 months since we've come home. She's a different baby. Sometimes the first year of her life just seems like a distant nightmare, except for the fact that any time she starts to cry or I hear a baby cry I flinch and stress, thinking something is horribly wrong. I'll continue to try to update more on Aleah, but for now, know we're in a very good place.

Primary Children's-Day 2

7 hours of interrupted, yet amazing sleep. It's incredible how much one's perspective can change with sleep. We woke up somewhat refreshed to the new attending team telling us once again how horrible we were for co-sleeping. It was getting old. Either way, Aleah was doing better and we were feeling somewhat optimistic now that we had more of a diagnosis.

Dr. Clements, another pediatric endocrinologist, came in to talk to us about hyperinsulinism and the possible causes. There are dozens, some of which are known. Because of her lab work he didn't think it was related to the pituitary gland, the pancreas, or liver nor a metabolic disorder. He discussed diazoxide, the medicine they wanted to try with Aleah, and the possible side effects as well as other concerns. Basically, Aleah has gotten hairy. Aesthetic side effects are much better than other possibilities. We just call her our little chipmunk or some other equally chubby and hairy and adorable creature. Adults can retain water with diazoxide but it's not common with children unless they have heart problems.

Both he and Dr. Murray agreed that this was a more mild case, one that Aleah will most likely adapt to, whether it be as a toddler or a teenager. Once again he wanted to wean Aleah off of the drip—for good—and start her on the diazoxide. He was consulting with the Genetics Department regarding Aleah's case, as they thought it was most likely a gene mutation, and said they'd be in later that afternoon. He also wanted us to receive some education regarding a glucagon shot and monitoring her blood sugar, as well as follow ups with him, assuming the diazoxide would work as predicted. He was very friendly and sociable, willing to answer lots of questions and discuss all of our concerns.

Devan, Casey's dad, was on his way to a conference in St. George so he and Wendi stopped by for a few hours and also got us lunch. (Side story: to give you an idea of how tired I was the day before, Wendi had mentioned Devan going to a "water conference," which for some reason I found HILARIOUS. Devan works in waste-water treatment but the idea of a water conference, in St. George—a desert, was very amusing when combined with no sleep.)

Anyways, they went to get us lunch and genetics stopped by. A nurse practitioner and fellow from Portugal consisted of this team. Aleah was asleep on the bed so we moved to the other side of the room to tell them about family history, health conditions, her background, as well as ancestry. Casey's parents came back in towards the end and were there to watch them do a physical exam on Aleah. The team was looking for observable characteristics (phenotype) that would suggest a specific set of genes (genotype).

For instance, Beckwith-Wiedermann syndrome presents with abnormally large body parts, usually asymmetric, large tongue, umbilical hernia, and so on. These are phenotypes. Abnormal regulation of the genes on a particular region of chromosome 11 lead to mutations of the CDKN1CH19IGF2, and KCNQ1OT1 genes. These are the genotypes. After examining Aleah the genetics team did not think she had this syndrome, nor any other obvious syndrome that would explain her hyperinsulinism through apparent phenotypes.

Right now there are 7 genes identified that cause or associate with hyperinsulinism. We're currently trying to work with genetics to have them get preauthorization from our insurance to do this genetic testing. Even with testing we'd only have about a 50% chance of identifying the cause of her hyperinsulinism. However, genetics canceled our follow-up appointment because they said she was doing so well. After networking with other parents of CHI kids I realize now it's important to get the testing done if possible, in order to get an idea of her future and possible future children.

Genetics finished and Casey's parents left after bringing us lunch. Aleah was off the drip at this point so we could walk around. We waited for my brother, Matt, to come visit and chatted with staff while enjoying our time out of the cramped room. Matt brought us some treats (very appreciated) and talked for a while, then my sister Emilie arrived. We were so grateful for any interaction at this point, even though our 7 hours had quickly worn off. Matt left and Aleah fell stayed with Casey while Emilie and I went downstairs to get something to eat. I knew I was only two floors away but it was difficult to relax; I didn't know if I should eat downstairs or hurry back up. I brought Casey some dinner and Emilie left.

Aleah had started the diazoxide that afternoon. We anxiously monitored Aleah's blood sugar, waiting for signs that the diazoxide wouldn't work. At first they checked her sugar every hour, then every 2, and finally, that night, every three. It was working.

Sunday, May 4, 2014

Primary Children's-Day 1

So after 3 hours of sleep for me and 1 for Casey, the doctors started flooding in. Since Primary's is a teaching hospital there are interns, residents, chief residents, fellows, attendings, medical students, and specialists.

***At this point I want to say how grateful I am that we are within a 100 mile vicinity of a world renown pediatric hospital. Primary's covers 5 states, yet we were within an hour drive of hundreds of pediatric specialists. Except for an occasional irritating "your child might die if you co-sleep with her" comment the staff in all three hospitals were incredible and amazing at what they did.

Anyways, a young resident (seriously, so young we thought she was a tech or something) came in to introduce herself and give us an idea for the day. She got our history, said she'd report to her attending, who'd report to the endocrinologist, and briefly checked Aleah while I clutched her and covered her ears to let her try to sleep. The team covering her came in and got more information, once again saying I shouldn't sleep with her. I was so frustrated at this point I was ready to throw things. Luckily the attending recognized my anger and backed off, getting to the medical issues. He said Dr. Murray, the pediatric endocrinologist on call that weekend, would look at her labs and charts and then visit with us. Meanwhile, Aleah would be kept on the D10 solution and they'd try to let the poor girl sleep after they finished a quick physical exam. We hung out in a daze while waiting for Dr. Murray, who spent quite a while out at the desk looking over Aleah's stuff thoroughly. I stayed in bed holding Aleah, afraid to move so she wouldn't wake up.

Dr. Murray came in, grabbed a stool, and started discussing the situation with us quietly so to not wake our poor, sleep deprived kid. She pointed out the obvious things we'd figured out. Aleah wasn't maintaining her blood glucose on her own; hence the IV drip. The night before they had let her drop in order to obtain labs during a hypoglycemic episode, which involved that horrible head prick consisting of them digging around with a needle trying to get past a valve... Anyways, Dr. Murray was leaning towards hyperinsulinism, but wanted to try a test in order to help confirm it.

The test administered is the glucagon stimulation test. Glucagon is a peptide hormone produced by the pancreas that, in effect, is the opposite of insulin. As where insulin is released to lower blood sugar glucagon helps raise it. (There are other hormones that help with raising blood sugar, but insulin is the only hormone that drops it.) Instead of giving Aleah insulin and then glucagon to see if her BS was raised appropriately, Dr. Murray wanted to wean her off of the glucose drip and wait for her levels to fall while maintaining her normal diet, administer the intravenous glucogon, then measure her blood glucose levels at 10 minutes, 20, and 30. Then the poor girl could eat and get back on the glucose. It was expected that a glycemic response of great than 30 mg/dL would be observed. Dr. Murray said that with most cases it goes way up with the glucagon. (Aleah's ultimately did, but only by 36 points. However, that fit the textbook diagnosis, so Dr. Murray called it a mild case.)

While we waited for Aleah's BS to fall, my sister Katie came to visit and brought us lunch. Aleah was up for some of the time, angry whenever her BS had to be checked but generally her usual self—just tired. We sent Casey off to the Ronald McDonald Room to get some sleep (they have "nap" beds) and after Katie left I walked around with Aleah, since she was disconnected from the IV at this point. She was content to just hang out in my arms, most likely grateful to get a change of scenery. Together we figured out the maze of the 3rd flood and looked at the different murals, artwork, and people we passed by. Casey was kicked out of his bed around 5 (rather rudely, apparently—he's still resentful about this) and we walked back to the room since his mom, Wendi, had kindly come out from Vernal to visit.

I waited anxiously for Aleah's BS to drop. Meanwhile, Casey went with his mom to get some food and bring stuff back to me. By this point I was exhausted and felt like a zombie. Aleah was somewhat sleepy but we kept getting interrupted as her sugar needed to be check and more staff came to argue about co-sleeping. A social worker figured out to not argue with me and kindly suggested I get some rest to help with the stress (I wasn't about to leave my baby with a stranger though so I wasn't sure how that was going to happen...). Finally, an attending who was a visiting associate or something came to talk to me. Aleah had barely fallen asleep again and I had just curled up with her tucked against me. I braced myself, expecting another "we don't let parents sleep with their children" speech. I closed my eyes in relief when she said, "Between you and me, I co-slept with my first child. Sometimes it's just the only option." She said she'd see about getting us a bigger bed where we'd be more comfortable and Aleah not so close to the edge (honestly, I wake up with her slightest move—she'd never roll off). I started crying in relief. She chatted some more and said she'd talk to the rest of the staff there that evening.

Finally able to relax, I slept for about 5 blissful minutes before Casey and Wendi got back. I think it was around 6 now. I managed to force myself to eat, beyond exhausted, while Aleah slept. At this point my lips were killing me, as my tears and runny nose from crying, along with dehydration, had created chapped monsters that leered at everyone with every word I spoke. I vaguely remember the spicy salad burning them but just didn't care. Wendi stayed for another few hours and Aleah's levels still hadn't dropped appropriately.

After Wendi left Casey suggested I get in the guest shower, which made me start crying because it sounded so good and meant I could get a few minutes to myself. The shower was right next to our room, so about halfway through rinsing my hair I heard a familiar cry. I rushed through, threw on clothes that got stuck on my wet limbs, and rushed into the room to see Aleah distressed about the blood pressure cuff. Again. I was so mad that they'd interrupted her sleep that I snapped at the aide to stop the cuff since Aleah's arm was turning red. She then tried to explain to me that it wasn't red because it hurt, but because she was moving around. I snapped back that I was once a tech for Intermountain and that of course a 6 month old is wiggling. She replied that she wouldn't try to explain anything else to me, all sassy-like, and said she'd try later. I told her we could do it when she was asleep, which I knew she would be soon since she hadn't had uninterrupted sleep for 48 hours now.

The phlebotomist came in again to prick her poor heel around 9 PM. Her BS was finally at a 41, low enough to administer the glucagon test. The nurses ordered the glucagon from the pharmacy while we tried to keep Aleah entertained. We got another BS, the glucagon was administered, and then Aleah's levels were checked for the next 45 minutes or so. They didn't skyrocket, like mentioned above, but came up high enough that Dr. Murray was willing to call it hyperinsulinism. They just didn't know what was causing it. That was what tomorrow was for.

Aleah was hooked back up to the glucose drip, ate, and we waited for her to go to sleep. Once she had that sugar in her she decided it was time to play. We realized she must not be used to having normal blood sugar, because while she acted pretty normal with low blood sugar—which suggested she was used to having a low base line, she was positively hyper on the glucose drip that kept her in the low 100s. I lost Casey to oblivion around 1AM, played with Aleah while sitting on the bed half out of it, and she finally went to sleep around 2AM. Besides an occasional IV or vitals check, we slept for an amazing 7 hours.

The pictures below are selfies we took while waiting for her to fall asleep.

Friday, May 2, 2014

Hyperinsulinism-Saturday night/Sunday morning

Aleah's blood sugar was checked at UVMC at 3 AM, about 30 minutes after I'd fallen asleep (holding Aleah and curled up in the giant crib with her), and was at a 43. A recheck brought it up to a whopping 47. Not critical, but considering she'd had 18 mL of glucose shot into her IV and was on 30 mL of continuous D10 (a dextrose solution) the pediatrician was nervous. I drifted off while the nurse went to report to the doctor. Dr. Sekona (the awesome hospitalist pediatrician) came in and said she was going to call PICU (Primary Children's Pediatric Intensive Care Unit) to see if they could take Aleah. She said she had planned on waiting until tomorrow but that Aleah had had too many ups and downs that evening, even on the drip, that she wanted her to be with the specialists. She also ordered some more labs drawn before we left.

I called Casey, who had gotten home, done some laundry, and been in bed for about 10 minutes, to tell him they wanted to transfer her. He replied he'd be on his way and the nurses came in to draw some more blood from poor Aleah's head. It was argued that there are fewer nerves on the scalp and that they could see the veins better, but I think it was a much more horrible experience for her. (PCMC drew from her arm and had a way easier time.) Dr. Sekona came in to say PICU was sending the helicopter since it was faster. At this point Aleah was being prepped to have blood drawn and she knew what was happening and lost it again. While Aleah was screaming, I was bawling, and the nurses were scooping blood off of her head so as to not have to poke her again. One of the nurses came back in and said the helicopter was 20 minutes out. I got Aleah settled down as much as possible and called Casey, asking where he was at. He said he was close and I urged him to hurry, explaining that they were sending a helicopter instead. I also called my mom, who asked if she should come up to Primary's (only 15 minutes away). I didn't know how long it would take Casey to get there and knew I didn't want to be alone, so I said yes.

Casey walked in with the Life Flight crew, which consisted of two amazing nurses and a pilot. I'd barely gotten Aleah quieted when they started on her vitals. Meanwhile, they were trying to ask us more about her history and what had happened. We were almost yelling over her cries while one of the hospital nurses helped Casey start to pack. The male nurse (Rob?) asked if I was going with them and I firmly replied "yes." He then mentioned he should probably ask the pilot, Scott, who said I could come. (Dr. Sekona had told me earlier that I would most likely be able to go since Aleah didn't need a respiratory therapist, therefore clearing up a seat/weight for me.)

They buckled Aleah down onto the huge stretcher, bundling her in blankets and sitting her up at a slight incline. I remember feeling overwhelmed seeing her tiny body lying on a stretcher meant for adults, only able to stroke her head. Fortunately she thought this was interesting and quieted down once they started moving, looking around with her big blue eyes while giving little gasps to get her breath back. I tried to be right next to her, cutting off other staff, but didn't really care. I just needed her to know I would not leave her.

We raced through halls, pushed through doorways, rode elevators, and rushed outside to climb a ramp. It was cold but I noticed Casey was shaking rather violently. I had the thought that it wasn't THAT cold but didn't realize until later that it was his emotions and adrenaline affecting him. We went past one helicopter which confused me until I noticed another one. They lifted her in and showed me where I was to sit (in front). I gave Casey a quick hug and climbed in, upset that I couldn't sit by her but glad I could be there at all. The pilot showed me how to buckle in, how to unbuckle, and how to open the door in case I needed to. We sat on the landing for about 5 minutes while the helicopter started up, lists being checked off, all that. I heard Aleah cry once, which I later realized was them checking her sugar again, and had to crane my neck around in order to see her. She quickly fell asleep and we were airborne.

I had been given some headphones but quickly understood I wasn't to be included in the conversation so I tried to relax during the terrifying experience of having my sick daughter Life Flighted. The roar of the chopper quickly escalated my headache to a near migraine and the lack of sleep, food, and water created a mild nausea (not so mild on the way down). In between identifying areas in the dark (like Lowe's in Orem and the state prison), I tried to interpret what the screen meant and frequently craned my head around like an owl to peak at my daughter. She was peacefully asleep with a blanket over her ears and her vitals normal.

We were in the air for about 20-25 minutes at which point I was more than ready to be done. I think I could have enjoyed the helicopter ride had it been in the right circumstances but... it wasn't. We landed with much vibrating and a crew came to meet us. I followed the rest of the crew's example and unbuckled myself, opened the door, and tried to check on Aleah. One of the ground crew member's pulled me back and received a frustrated glare from me. Aleah had woken up at this point and was still interested in her surroundings.

 I don't even remember going from the roof into the building; I just knew there was no way I could find my own way through the maze of halls. At first we were told we'd be on the 4th floor but then went to the 3rd. I had on old high school sweats Casey had grabbed for me earlier and one of the crew members remarked on them. Turns out her kid goes to Bountiful, so naturally we're mortal enemies and I almost felt embarrassed until I realized my KID HAD JUST BEEN LIFE FLIGHTED. I followed the stretcher through the halls, trying to be as close as possible to my baby, until we arrived in a horribly small room with a small crib and couch/bed. I had the distant thought that I'd make Casey switch the position of the bed and crib because I was going to have to sleep with my baby. They unstrapped Aleah and I quickly grabbed her while they tried to get more vitals (she really hates blood pressure cuffs at this point). I quickly got annoyed with the tech who was trying to explain stuff to me that I already knew. I'm not a very gracious person with a headache and exhaustion. I tried to call Casey but couldn't get a signal and didn't have time to connect to WiFi yet, so I was grateful when they showed my mom in. She hugged me and tried to help me comfort Aleah. They realized her IV was bad as it was leaking and they couldn't flush it. She hated it being touched, but it was next to a valve so that's understandable.

Knowing they had to do another IV and more labs I tried to get her as settled as possible. The IV team came in and couldn't get it to stay. They poked each of her hands and one on her foot. My mom pushed for another team whom they called. They got it on the first try, in her other foot. I remember holding Aleah down, feeling like there wasn't any more in me to cry, when I realized she'd stopped struggling and was just sobbing. That scared me more than anything, watching her lie there limp and wailing. My mom had to leave when the new IV team came, as she was sobbing with her. It wasn't until they got the IV in that I started crying again, so relieved that she could be done for a bit. I wrapped her up and tried to quiet her. We were both so exhausted. Casey came in right as they were getting the IV.

Casey switched the bed and crib while the staff was out of the room. I laid down with Aleah, holding her while she sniffled and collapsed into exhaustion, ready to bite the head off of anyone who made the slightest noise that might wake her up. At this point my headache was a migraine and I could barely see. And now I apologize to my mom (again) for snapping at her. My mom asked the staff for an ice pack, that turned out to be a worthless cool pack, and we decided my mom should go home to sleep in case I needed her to come back that afternoon or evening. The new tech (we got there just before shift change) came in to see if I needed anything and noticed our rearrangement. I explained she wouldn't sleep without me and he wisely left it alone, just reported it to the nurse, which turned out to be another big deal. I tried to drift off with my headache while Casey sat in a horrible rocking chair thing.

Eventually a nurse came in to say that it was against policy to let parents sleep with their infants under a year, or something like that. I explained that 1) She won't sleep in a crib or without someone, 2) She's completely exhausted and needs to sleep, which means I will hold her so she can sleep, 3) She nurses every 1-2 hours (which only made sense later since we know her blood sugar couldn't be maintained, 4) She's been through too much trauma right now to even try a crib, 5) Yes, I know the SIDS risks and I do take them seriously, and 6) Basically, you're not going to win this argument right now so bug off. The nurse knew she was in over her head so she reported to her charge nurse, who reported to doctors, who also got the same reply, who later sent in a social worker (I was not very gracious at that point), and that continued pretty much our entire stay until Monday night which I'll tell about later.

Anyways, at some point an old friend, Lindsey, stopped in after her shift from around the corner to say hi and inquire on what was going on (she had seen a post on FB or something). I vaguely remember talking to her and explaining what I could from an awkward horrizontal position, hoping she wouldn't judge me silently for my condition after not seeing me for about 3 years. Aleah and I got about three blissful hours of sleep. Aleah at some point earlier was hooked up to the glucose again. Around 9ish a resident came in to give me the SIDS talk, got shut down, came back with an attending who ultimately said they weren't the parents and I got to make the decision, agreeing with my statement that sleep is vital to live as well. Eventually I realized the residents and interns were way more concerned about the co-sleeping than the attendings, which made it easier to dismiss in my mind. I stayed annoyed, though, and still am.

At this point I realized I was probably done getting sleep but knew Casey needed to get some so sent him out to the truck to try. He got about an hour. Around 10 the day started getting hellish again.

Tuesday, April 29, 2014

Hyperinsulinism-First 24 Hours

Friday evening (3 days ago) Casey was playing with Aleah when we noticed she looked very tired, lying down and staring off. She then twitched her arms oddly and we tried to get her attention by calling her name and tickling her. Casey picked her up and she was completely limp with her head rolling around, but eyes open (glassy) and respirations normal. Casey handed her to me and we knew something was wrong. At first we planned on an ambulance but realized we could get to Mountain View hospital's ER faster so Casey quickly buckled the carseat base in (had been moved earlier), and I grabbed the diaper bag and milk.

We jumped in the truck and I buckled her in as Casey drove off. By this time she was alert and crying but sleepy. Not knowing what exactly had happened—we suspected a seizure of some sort—I tried to keep her awake by talking to her. I had called 911 so they knew we were coming and quickly took Casey and Aleah back while I gave some quick information. I soon heard Aleah screaming and anxiously went back to find she hated the blood pressure cuff. That was the beginning of her misery. We described what had happened to the staff while they finished getting vitals; normal except for a slight fever. They quickly inserted a catheter to get a clean urine catch, which looked great, and then moved to the IV insertion. By this time I was bawling as was Aleah and we kept trying to give medical history, etc. to the crew. They got the IV inserted on the first try, drew blood, and then I worked on quieting Aleah down while we waited for information. We got her to eat some and she quickly fell asleep.

The first labs came back indicating a possible urinary tract infection and low blood sugar (BS). The doctor explained an infection could lead to low blood sugar as the body is working harder, which could lead to the seizure he also thought she'd had from our description. At this point she ate quite a bit (5 ounces) so they decided to recheck her glucose levels. They were critically low, at 28 mg/dL, so we thought it had to be a mistake. Retest showed 32. They quickly started her on a glucose drip with an 18 mL bolus and suggested more labs and admitting. We got some more labs sent off and found that our insurance wouldn't cover a hospitalization in Payson so we needed to go up to Utah Valley Medical Center in Provo. They waited for the antibiotics to finish and rechecked her BS. It was 91 so they decided we'd be good for the 20 minute drive to Provo. Casey had earlier run to the house to get supplies while the IV was going.

We quickly got to the pediatric ward and they got vitals and then her BS. It was in the low 30s. Assuming it was a mistake they rechecked it to find just a few points difference. Another glucose bolus was administered and the hospitalist pediatrician on call came to talk to us. He suggested she might be producing too much insulin after getting a history but wasn't sure. He said at this point they just needed to keep her BS high enough and keep her stable. She got the glucose in her system and decided that felt great so she kept us up until 2 AM.

 The next morning the new hospitalist pediatrician came in to talk to us about some labs that had been drawn and some more needed. She started consulting with endocrinologists and decided we needed to draw labs when her blood sugar was low. That meant weaning her off the glucose and waiting for her BS to drop. That took most of the day. My parents came down saw how miserable it was for her to get labs drawn (from her head). They started her back on the glucose and was pretty chipper. She appeared stable and responsive to the glucose so I sent Casey home to get some sleep and let the dogs in the house. Once again she stayed up late and I had barely gotten her to sleep when they needed to check the glucose again.

Wednesday, November 13, 2013

Aleah Rose

I went and had a baby this Halloween. (We also bought a house—two houses, in fact, since I last posted—and moved halfway across the state due to a job promotion stemming from me freaking out about having this baby, but that's another story.) Obviously it's a bit more complicated than that. A lot, actually. I couldn't sleep because of the urge I have to try to write out my emotions involving our daughter. (I write our because she's not just mine. One only has to see her with her dad to know that.) I know I'll want to write our birth story and about our pregnancy experience, but for now perhaps I'll just introduce her.

Aleah was early and didn't want to come out so easily. Once she was out, the doctor put her on my stomach but she wasn't moving much. Her eyes were open yet there was little response to stimulus. A respiratory therapist team grabbed her and took her over to the incubator where they encouraged her to expand those lungs, which she was having trouble with. 

I told Casey to go over there while I was taken care of. The photo above is when they started working on her. We had decided earlier that if she needed to go to the nursery or NICU then Casey needed to go with her. Below is a photo from in the nursery, where she's looking much better. While walking down Casey called my mom and sister Emilie, who had been waiting at our house about 5 minutes away, to come be with me in case Aleah was in the nursery for a while. The marks on her head are from the forceps used to get her out quickly due to her fetal distress. I had decided to try the forceps before going straight to a c-section, which was the next step. 

It was only about 20-30 minutes (it's difficult to remember the exact time—the situation was tense and emotional) before Casey walked back into the room holding her. I think Mom and Emilie had been there for about 10 minutes...? I lost it when I finally got to hold her again. 

Knowing she was well enough to be back with me, after only a brief time, meant she was doing okay. I knew that without Casey or someone else telling me that. I immediately put her against me, craving her skin against mine. It was more instinct than want. She had just been inside me. I wasn't ready for her to be so far away.

We stared at her for a while and then some more. My family counted fingers and toes (I didn't even think of that at that point... I was just glad to have her safe with me) and admired her long limbs. Seriously, you should see her toes. She was 6 lbs 10 oz and 19.5 inches. Long and skinny, probably from being 3.5 weeks early.

I ate a sandwich while my mom, Emilie, and Casey held her. I'd thrown up anything I'd eaten in the last 24 hours. At one point I remember thinking I was more hungry than tired and wanted raspberries and cantaloup due to a tempting TV commercial. 

To be honest, very little turned out like we planned or wanted, which I know is normal with many births. I'm okay with that for the most part, but that's something I'll get into later. After the scare we had with her I quickly became appreciative of the fact that she and I were alive and well.

The above photo is when we brought her home at 3 days old. Below is from Tuesday, when she was 12 days old. Sometimes I think I could stare at her all day long. Right now I'm just listening to her squeaks wondering how long I can resist pulling her into bed with me. We weren't planning on having her here yet, but I don't think we regret a single thing.