Wednesday September 8, 2021

Hallie Kat was feeling sick today. Took a 90-minute nap with me after being awake for only 1 hour, which she never does. She ate a little yogurt, Bambas (peanut butter puff snacks), strawberries, milk, and chugged 4 waters from her Munchkin straw cup. After throwing up 3 separate times in the morning, I took her to Cook Children’s Medical Center in Fort Worth. We were taken back for a first look where her condition was evaluated. We were then sent for X-Rays to make sure there wasn’t anything blocking her airways or ingested. In the waiting area, the nurse gave Hallie some medicine for her stomach to make her feel better. We were surrounded by crying and sick kiddos. One family had a son in a wheelchair who couldn’t see, speak, or walk. He would make moaning sounds every few minutes. I felt sorry for the parents and child as I’m fairly certain these hospital visits were quite common for them. The young child’s conditions were depressing and very real. I felt blessed to have a child who seemed to be just fighting the latest virus off. After waiting for multiple hours, we were finally taken back to a room to see the doctor. An additional hour and a half later, the doctor came in and told us she was probably just fighting off a virus based on some very small white specs from her X-ray that ever so slightly showed up on the x-ray images. Hallie and I spent a total of 5 hours at the hospital and were sent home with a viral infection diagnosis. At the time, the doctor could not explain the vomiting, which I thought was odd that he didn’t mention any possible other diagnoses. Hallie and I went home to Dada, gave her a quick bath as she was over-tired from being at the hospital without napping. We put her to bed after her bath and was asleep by 8:30PM.  She woke up twice in the middle of the night to nurse.

Thursday September 9th, 2021

Hallie was wakened by Cameron at 9:35AM and was still very tired, and not hungry.  She wanted to be held and snuggled. At this point, she had started breathing slightly faster than normal. By 11:30AM, she had to nap again. She napped for 2 hours and 26 minutes. She woke up around 2pm and then napped again on Cameron 45 minutes later for 1 hour and 25 minutes. She was listlessly awake for 2 hours before napping again for 1 hour and 53 minutes until just after 8pm. We tried to get her to eat anything after she awoke, but she simply didn’t want anything. The liquid she did drink would shortly come right back up; however, she was still having wet diapers, which lead me to think that she was still somewhat hydrated. The was no doubting that she was feeling unwell and sad at this point. We had called the pediatrician multiple times earlier that day with the plan to go to the pediatrician in the morning. We were supposed to call at 8AM to ensure we could get an appointment. Due to her worsening condition, Cam and I brought the Pack ‘n Play to our master bedroom that night. We laid Hallie down in her Pack ‘n Play by 10:30PM that night and hoped we could make it until morning before needing to go to the hospital.

Friday September 10th, 2021

As I sit here typing this, almost a whole month later, I still tear up when I think back on what happened over the next couple of days. I will be the first to admit that I really did not want to take Hallie to the ER in the middle of the night thinking that it was just a bad virus. My internal conflict with the chance of being sent home by the doctors again just two days after the last hospital visit was weighing on me. By about 4AM, Cam and I both looked at each other and contemplated visiting the ER again. None of us had slept much, if at all, including Hallie. She had been moaning, breathing heavily, and crying. Her skin was discolored, and she looked miserable. Cam thankfully encouraged me and insisted that we take her to the ER. At this point, I really didn’t know what to think and I was so exhausted that I don’t think I was thinking clearly either. I just told Cam to make the decision and once he said we should go, we mobilized for Mansfield Methodist Hospital.  

We arrived at the hospital just before 6am. It was still dark outside, and the hospital was quiet. The hospital staff was able to immediately check us in and get Hallie into a room to be examined. It wasn’t long before we learned that Hallie was severely dehydrated and needed fluids fast. Her skin was bumpy due to her excessive dehydration. Hallie was stripped down to her diaper by the medical staff and Mom and Dad in the freezing ER room. To get fluids into one year old Hallie, the nurses needed to find a vein that would work for an IV. The staff nurses on call took the first shot at getting an IV into her already small and dehydrated veins. After multiple needles pierced her skin without success, they called the NICU team in to do the job. One of the things that we learned during this brutal waiting period is that, once an IV is tried on a vein, usually the vein is “taken” and disappears from availability for all immediate future attempts at IV insertion at that same site. The NICU nurses used red light technology to try to find the veins, but still failed after multiple needles went in and out of my sweet baby’s body. Hallie squirmed and cried as we all held her down and the staff poked and prodded her. Still, no vein was found and no IV was inserted. This was by far the most difficult parenting moment that Cam and I have ever experienced together. Hallie was braced against my chest on the table. The Mansfield staff told us that she was to be transferred immediately to Fort Worth Cook Children’s Hospital. They requested a transfer team from Cooks, and Hallie and I were to be transported in an ambulance as soon as it arrived. Cam chose to drive separately as only one family member could go in the ambulance. Once the transfer team arrived, the team also tried to get an IV in one of Hallie’s little veins. One of the Mansfield nurses, along with the transfer team, used a live sonogram imaging machine to see her veins and was able to draw some blood for testing; however, sadly the vein that we were able to draw blood from collapsed shortly after. Baby Hallie was not able to get any IV fluids.

After almost an hour of trying to find a vein that would work, the transfer team decided to load her up in the ambulance and let the Cook Children’s Pediatric Team get the IV into Hallie when she arrived in Fort Worth. Hallie was put on a stretcher and loaded up into the ambulance. All I could do was cry. In this moment, I felt helpless. The tremendous amount of guilt for not taking Hallie to the ER sooner was building inside my tired body as I watched my baby suffer. I got in the front seat of the ambulance. Parents are not allowed to sit in the back with the rest of the transfer team and Baby Hallie. We started moving and the driver informed me that he was going to start the ambulance siren for our estimated 25-minute trip to Fort Worth. I stared blankly ahead feeling immense guilt, sadness, helplessness, and judgment from those who had seen Hallie’s condition. I felt as if I had failed as a mom. I remember the driver telling me not to be alarmed if they put an oxygen mask on Hallie when we arrived as her breathing was still heavy and labored. I also remember my dad calling me in the ambulance and I was barely able to speak. If I spoke too much, I was going to break down entirely. I needed to hold it together. There was a huge accident on highway 287 so the driver continued to honk at those who didn’t move out of the way fast enough. It was the worst and longest car ride of my life.

When we finally arrived at CCH, Hallie was moved into a room, examined, and the CCH team was finally able to get one of the two IVs needed to draw blood and start fluids in one of her arms using a sonogram. Cam was still in route to the hospital and was stuck in the standstill accident traffic from earlier. Shortly after we got some blood, I was informed that Hallie’s blood glucose levels were extremely high, ranging from 470 into the 600s. As a benchmark, a normal blood glucose level is between 80 and 120. Sometime between 8 and 9AM and before Cameron arrived, the doctor overseeing Hallie told me that she thought Hallie had Type 1 Diabetes (T1D). I started crying again and asked how certain she was. She responded that she was 95% sure that T1D was the diagnosis, which sent me into further hysteria. My heart sank and I was overcome with extreme emotions of guilt, sadness, and defeat. I decided that I would wait to tell Cameron until he had arrived at the hospital as I wanted to physically be with him at that point. The next 20 minutes are a blur. The hospital staff asked me questions about Hallie and needed me to sign various kinds of paperwork. I was able to muster up a few questions about the diagnosis, but what I really wanted to know was if I had somehow caused this diagnosis. Did eat or drink something I wasn’t supposed to during pregnancy? Is there anything I could have done to delay the onset of such a diagnosis? Did I do something to trigger the diagnosis? My head was spinning with questions. If I were to guess, Cameron arrived 20 minutes after the doctor told me the devastating news. When Cameron arrived, I squeaked out Hallie’s prognosis and just cried and hugged him. Cam was so strong for me and for Hallie. He told me how T1D wasn’t the end of the world and that we could manage this. He told me that God had a plan and to have faith in him. Cam was strong at a time when I couldn’t be, and I was and still am so grateful for his strength and faith to pull our family through this incredibly difficult time.

Before moving into the Pediatric Intensive Care Unit or “PICU”, Hallie was sent to get a CAT scan of her brain to make sure there was not any long-term damage already done. To say I was fearful, would be a huge understatement. Praise God, Hallie’s results came back normal.

We were moved to the “PICU” to get the other IV placed and to get Hallie stabilized. The hospital’s anesthesiologist happened to be available, and he came by the PICU to get the second IV inserted. The anesthesiologist had to search for a vein that hadn’t been poked yet. By this time, Cameron was able to sit with Hallie, and I took a break to sit on the couch and try to process everything. If I remember correctly, he was able to insert the IV on the second try using a sonogram into her other arm. From there, the team slowly introduced fluids and insulin to bring her levels back to normal. The medical team insisted that we do this slowly because if insulin was introduced too quickly into her body, her brain and body may go into shock and have further repercussions. Now it was time to wait. If you are familiar with any ICU floor or have given birth, a flurry of doctors and nurses were in and out in intervals of 1, 2, 4, and 8 hours to run tests and draw more blood. We were rarely alone in our curtained off area for more than 30 minutes. We could hear the being machines and all of the cries, moaning, and screaming from other patients through the curtained off rooms in the PICU. We were luckily in the non-COVID section of the hospital since Hallie tested negative.

Hallie was still extremely thirsty and dehydrated. Due to doctor’s orders, she was not allowed to eat or drink anything. Such precautions were taken because if Hallie had water go down the wrong pipe to her lungs, they didn’t want any risk of aspiration causing any other complications. She had also been extremely nauseous and could not keep any food and drink down earlier and still may have issues. The only thing I was allowed to do to help with her dry mouth was dip a sponge the size of a marble into 1-2 tablespoons worth of water and let her suck the sponge dry. She liked this and never failed to reach her hand out to ask for more. I was only able to give her the sponge occasionally, doctor or nurse permitting. Watching Hallie suck the sponge dry was painful to me. I wanted to nurse her or give her favorite munchkin cup to her so that she could satisfy her craving, but I also didn’t want to place her in any potential further danger.

Hallie was finally able to get some much-needed sleep around 2pm. She had been awake since the early morning. I had been ignoring my physical hunger pangs until I knew that Hallie was in a settled and stable condition. No food is allowed in the PICU room, so I took the elevator down to the 1st floor and meandered around the cafeteria trying to find something that sounded somewhat appealing. After circling the food vendors a couple of times, I snagged a Chick-fil-A grilled chicken sandwich and a water and ate in there by myself. Overcome with grief, I cried softly while I ate, hardly tasting my food.

When I returned, Cam left to the cafeteria as well and got himself some food – Chick-fil-A. When Cam came back from the cafeteria, the nurses brought me some supplies to use the hospital breast pump since I was unable to nurse Hallie. They took me to a small windowless room with a sink, rocking chair, and Medela pump. Maybe it was my mental state impacting my emotions, but this room was straight up depressing to me. I stayed in there for maybe 15 minutes and decided that whatever milk I was able to pump would do for now.

At some point that afternoon, some balloons and a gift bag arrived for Hallie from my brother Tommy, his wife Kerry and my niece Olivia. The small token of support meant so much to me and instantly brightened my day. More than anything, I just needed love and support from my family and friends. In the gift bag was a cheerful, pastel colored sloth stuff-animal that brightened up the dull room immediately.

That evening, both my mom and dad as well as my in-laws, Linda and Mike, who had driven up from Houston, visited with us as Hallie rested. My mom and dad brought us clothes, toiletries, food, pillows, blankets, and several other items from home since we were told to expect to stay at the hospital for at least 2 nights. Visitors were supposed to be met at the entrance of the hospital or right outside of the hospital doors due to COVID-19 restrictions. My parents were able to get inside the hospital by following another staff member inside without realizing they were doing something wrong. They came equipped with several suitcases and bags filled with pillows and blankets. Conveniently, they had entered only a hallway or two away from the secured PICU doors when I found them. I noticed a cop had already been eyeing them. I didn’t want him to turn them away immediately. Naturally, I gave them a big hug and started to cry…. Again. The officer was polite and allowed me to have a moment with my parents. When I left to return the items they had brought to me, the officer kindly asked them how they got into the hospital and nicely let them know that they needed to visit with us at the entrance of the hospital. I came back for my second load of belongings and told my parents that I would meet them down in the lobby so that we could visit longer. Cam and I met both set of parents just outside the hospital entrance and were able to talk and hug each other. Linda and Mike brought us Sushi Axiom for dinner that night. Cam and I ate together in the PICU kitchen/waiting area appreciating our loving families but overwhelmed with the uncertainty of what laid ahead for us and our poor baby girl. Later we took turns showering and brushing our teeth in the community bathroom right outside of the PICU’s secured doors a few steps down the hall on the right. Once ready for bed, we both snuggled up with each other on the convertible couch in Hallie’s “room” and tried to get some sleep.

Saturday September 11th, 2021

Around 2AM or 3AM, the nurses informed me that Hallie had stabilized to a point where they thought it was okay to give her 3oz of Mama milk that I had pumped earlier. At home, Hallie hadn’t taken a bottle for months. Even with her extreme thirst, she fought taking the bottle for about a minute before she caved and devoured the entire bottle and motioned for more. Sadly, that was all the doctor was comfortable giving her since he wanted to make sure that she didn’t just throw it all back up again. A couple of hours later, I was informed that I was able to nurse Hallie as her condition was getting better. I was so happy to do something for my daughter that not only satisfied her craving, but also was soothing for her. Her time at the hospital up until then had been anything but soothing. I had never been so eager to embrace her in a hug and nurse her to satisfaction.

Overnight, most of Hallie’s levels returned to normal and the nurse visits decreased as testing wasn’t required once she reached “normal” levels for each test.  I can’t recollect exactly what happened in the morning before moving to the side of the hospital in which patients are deemed “stable”. Most routine testing had come to an end except for her blood glucose – this test is to be monitored day in and day out the rest of her life. I recall I had been routinely asking the hospital staff when at least one of the IVs could be removed. Both arms had cannulas in them, and one arm was kept straight at the elbow with a splint-like brace to keep her from cutting off the flow of liquids and ensure that the IV stayed in place. Not only did it look uncomfortable, but it also kept her from sucking her thumb and soothing herself in a time when self-soothing would be extremely helpful. Finally on Saturday morning in the PICU, they removed the IV that had the splint holding it in place. Once removed, you could see the black and blue bruising all over arm from the tremendous amount of arm jabs she had been through just a day before. Hallie seemed to be somewhat relieved to have her arm and thumb back!

During the morning, I remember looking at Yogi’s online menu to order breakfast and then trying to figure out how to communicate everything that had happened over the last 24 hours to friends and family. I resorted to text because I thought it would be the most efficient and easiest for me to do. I thought that there was no way I could call each person I wanted to tell and not get super emotional each time. Just before being transferred to the other part of the hospital, Cam went downstairs to get the Yogi’s breakfast that his parents graciously picked up and brought over to the hospital for us.

It was now time to move from the PICU to the regular hospital side for our second night at Cooks. The nurse sent for a cart so that we could move our gigantic pile of belongings we had accumulated. We packed everything up together and rolled out. I took Hallie out of her crib while the nurse managed her IV stand. We shuffled slowly down the halls and into the elevator taking care not to stretch the IV cords attached to Hallie while the nurse pushed the pole that administered her meds and watched her health levels. Once we settled into our new room, Cam and I ate breakfast (we were allowed to eat in our new room) and Hallie took a nap. In fact, Hallie slept most of the day Saturday. Her little body was still exhausted. When it came to mealtimes, I browsed the hospital’s in-room dining menu and ordered Hallie a large variety of different options with no regard to the carb or sugar counts, even though nutritional breakdowns were listed. No matter what we placed in front of her, she had no interest in eating normal food. She would only drink Mama milk direct from the source. Sometime Saturday morning, we received a bouquet of flowers from Cameron’s immediate family. They smelled amazing and gave the room another joyful lift. Around 1:30pmTommy and Kerry came to the hospital for a visit. Hallie had awakened from her nap, and I asked the nurse if we could bring her just outside the lobby for a visit. After we were granted permission to bring Hallie, Cam, Hallie, and I went to see Tommy and Kerry. They brought us fresh towels (the hospital towels were available, but were quite small), a brush (I forgot to ask my parents to bring me one), snacks including homemade cookies that didn’t last, some extra comfy shorts, and toys/books for Hallie. We all exchanged hugs and Cam and I explained the situation in further detail. The visit was great for all three of us to get out of the hospital, see family, and get some much-needed sunshine. With heartened spirits, we said our goodbyes.

When we returned to our room, Hallie went down for another nap, Cameron relaxed in the recliner, and I finally opened the Type 1 Diabetes binder that the hospital had given us the day before to fill-out and read up on to become knowledgeable about the disease. Theoretically, since Hallie’s condition was stable, we could leave the hospital at any point; however, since Type 1 Diabetes is a bit tricky to manage, our time in this new room was primarily for Cam and me to get educated on the disease and how to manage it. While I read up on the disease, I ordered Hallie another meal from the cafeteria with hopes that she might eat some normal food. At the same time the food arrived, the diabetes educator stopped by our room to review the binder materials and answer any questions we had. While we tried to get Hallie to eat something, we reviewed the materials. Understandably, Hallie still had no interest in eating. On the bright side, Cam and I felt pretty good about the diabetes review session and even felt like we had a leg-up on others who had been newly diagnosed since we were accustomed to tracking our macronutrients in preparation for a bodybuilding show that we competed in back in 2018. Up until Hallie’s diagnosis, I still had tracked a significant portion of my food intake for fun. The difference for Hallie was that we would primarily be tracking her carb intake and the consequences were much more serious.

At some point that evening or afternoon, Hallie and I nursed since she wouldn’t eat anything else. Since she ate, we had to give her insulin through a syringe. The nurse walked us through how to measure the insulin, where to insert the needle, how to insert the needle, as well as the timeline about the effects of the insulin on the body. I was determined to learn how to best care for Hallie and offered to do the jab. Cam would poke her after the next meal. It was horrible and Hallie cried, but there was no other alternative.

For some background, one way in which a lot of type 1 diabetics manage their diabetes is by tracking their carbohydrates – I still don’t really understand how some diabetics can manage it without tracking your carbs to be honest. Nevertheless, a lot of different factors can impact the way that your blood sugar rises and falls besides just the number of carbs consumed. Just to name a few, hormones, type and quantity of carbohydrates, protein and fat eaten in combination, stress, exercise, among many other factors can affect your blood sugar. From a tracking standpoint, carbohydrates tend to have the greatest impact on your blood glucose levels, hence why tracking carbohydrates at every meal is very important. The other part of the equation is determining how much insulin to dose given the carbs consumed and other list of factors. Most people use an insulin to carb ratio which measures how much insulin should be given based on the carbs consumed. This ratio neglects the fact that different carbs digest at different rates as well as the other factors that shift blood glucose, yet it serves as one of the most simple and easy ways to try to manage type 1 diabetes.

When the educator left, Cam and I quickly gathered ourselves as well as Hallie to go meet my parents and Cameron’s parents who had been waiting for us to come out and visit. Once again right outside of the lobby doors, we took turns hugging and chatting almost all of which concerned Hallie’s diagnosis. Cam’s parents left to pick us up dinner, Cane Rosso, and we continued to visit with my parents. By the time Mike and Linda returned with our food, we were saying our goodbyes to my mom and dad.  

We returned to our room, Hallie took another nap, and Cam and I ate our food in the room’s dim lighting. Later that night, we saw Hallie perk up to more of her usual behavior around 10pm. I had been drowning in my sorrows moments before. When I saw Hallie was awake, I grabbed a blanket and laid it on the floor with some of her new toys and books, and we happily played for a little while. When it came to bedtime, I took a shower in the bathroom that was attached to our room, brushed my teeth and got into the couch bed that Cam and I had made up earlier. We tried to get Halie to sleep in her own crib, but she was not having it. She stood at the gate of the crib and cried until we came and got her. That night, all three of us snuggled up on the small couch bed and slept.

Sunday morning was quiet. Mike and Linda dropped off a lovely breakfast from Cast Iron which we ate in our rooms – Hallie refused everything we ordered for her, again. The educator and the doctor stopped by Sunday afternoon to answer any questions and review more materials. The doctor told us we could probably go home that evening but would also be open to us staying another night. With Hallie not eating, none of us getting great sleep, and the depressing environment, we opted to get out of there as soon as possible. The doctor wanted us to stay for a few more hours, so we said our goodbyes to Mike and Linda who needed to get home to Houston. They picked up a bunch of our luggage and leftover food and dropped it off at our house on their way back.

Later Hallie’s blood glucose dropped into the 50s (anything below 70 is considered low). Thankfully, we got Hallie to eat some Oreos, Bamba peanut butter puffs, and teddy grahams to bring it back up, but the doctors and nurses were on edge after that. They recommended staying another night, but Cam and I felt confident about managing her and we all wanted to go home – so we did. We thought she would start eating more, that we all would sleep better, and that Hallie would be thrilled to return home. We were discharged from the hospital at 5:15pm on Sunday and drove straight home. My parents were picking up all of Hallie’s diabetic items at the pharmacy for us since it closed at 6. At the pharmacy, they met Beth, our pharmacist, who offered not only her number but also her best friends number whose child (now in his 20s) was diagnosed with T1D at 10 months old. Afterward, they picked up Thai food and Joe’s Pizza for dinner and brought it to our house for dinner. At this point, we were still using finger pricks only and syringes to monitor and manage Hallie’s blood glucose. We counted Hallie’s carbs and dosed her based on the doctor’s insulin to carb ratio recommendation. That night, we kept the pack n’ play in our bedroom and put Hallie to bed in it for the night. The next day, we were going to tackle setting up her Dexcom (continuous glucose monitoring device) so that we didn’t have to prick her every time we wanted to get a blood glucose reading. The Dexcom is a small device attached to her skin that provides updates on her blood glucose every 5 minutes. The other high priority item on my list was to talk to our insurance provider, our doctor, and others to figure out how to get an insulin pump for Hallie that could dose in small increments without using a syringe each time. The past month has been emotionally exhausting. I know managing the disease will get easier with time, and I will continue to do the best I can for Hallie and my family. Until a cure is found for this disease, I am committed to doing everything in my power to help my daughter and give her a better life.