7 years in a nutshell

Seven years ago tonight, I arrived at the hospital to get induced for labor at 36 weeks. It was a fearful night full of unknowns and insecurity. The birth plan was for the baby to be born the next afternoon, so she could be taken to the NICU for care before the shift change for the medical team.

I didn’t know if the next day was going to be the worst day of my life: would we see our newborn and begin the medical care to bring her home soon, or were we going to leave the hospital with news that every parent dreads?

For 16 weeks, our family prepared for the best and the worst. When we first found out that our 20 week fetus had a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), we were terrified from the news and prospect of how we would be able to navigate the future. Doctors sat us down telling us the hardships ahead: surgeries, emergencies, hospitalizations, oxygen saturation, weight and eating issues, feeding tubes, etc. We were lucky to have found out early on, because she could get timely intervention after birth. In some unfortunate cases, the condition is discovered after birth and doctors can lose valuable time to give appropriate care. If no surgical intervention is involved, the condition is fatal.

After the first surgery, the most precarious time would be the first year with survival rates of 20-60%.

Our faces turned white and breathing short. After the doctors explained the diagnosis of this condition, we were counseled with the option to terminate. Feeling like I was in a dream, I had to ask the doctor how much time I had to decide. Chris and I said nothing to each other on the drive home. We picked up lunch, ate at home, and took a nap. Elliot, 1 1/2 year old at the time, was mad that we had the audacity to nap and not give him attention: he came over and bonked us on the head with an empty plastic milk carton. That was his nonverbal cue for ‘I want milk.’

It took us a few days to process the news. We didn’t talk about it, and when we finally discussed it, we both agreed this baby was God’s special gift and he had good plans for us: difficult but good. And the rest is history. It’s been indescribably difficult with lots of unexpected hospital trips, constant nightmares, depression, and a heart held in fear of the worst.

Yet in the storm, God has blessed us so much through her. We call her the ‘game changer,’ because our lives turned upside down when she arrived. What we foresaw for the future stayed in the plan phase. I couldn’t have imagined this kind of life or have wanted it, but now I can’t imagine something different. In difficult times God never lets us down. This is weird to say yet some of my fondest memories are these hospital stays, which made me realize that memorable moments do not only mean happy experiences but hard ones too. We talk about those times with tenderness, disbelief, and humor in recalling what happened. On occasion, Elliot still talks about the day I cried and had to drop him off at our neighbor’s house when I had to drive Ellis to the E.R. He says the chips he had with our neighbor that day was the best ever.

These experiences try our spirits and stretches our faith. We kick and scream, metaphorically, when we think Ellis is getting sick again casting a dark gloom over me. Chris knows that I get super sensitive and start yelling. Don’t ask: I just do because he asks questions, that seem non-common sense about what to do. We know this is my coping mechanism, so he’s aware it’s not a personal attack.

But I love my little girl with her funny laughs, wild hair, and spunkiness. The best is when she hugs me and loves on me at random times. One time I had a nightmare and cried in my sleep. It was late at night but she woke up, turned over, and patted me on my back saying, “Mommy, it’s okay. You’re just tired.” The she fell back asleep. It’s like she was the comforter that night.

We’ve been through a lot together and have seen each other at rock bottom. We’ve cried holding each other for different reasons, but fear was the underlying motivation. But when I feel her warm arms around me, I’m reminded how God has made her stronger and bigger all these years. A miracle.

God had different plans for us; plans we wanted to refuse at first. Still, we don’t know what the future holds but we trust God by looking at how he has brought us through the sudden storms. Moments when my heart drop from terror of the worst outcome, I can do nothing but sigh and give it to God. I don’t do this because I’m super holy or have great faith. The weight of the issue drowns me and it’s so deep that I can only give it to God for keeping my heart safe.

Heart clinic appointment…a long day ahead

I don’t know who’s more anxious: me or Ellis. It’s a super early appointment that lasts hours seeing different specialists. And why I’m still not sleeping is just nuts.

Brings back awful memories for our family. Condition has stabilized so much but it triggers a bunch of stuff and my nightmares get worse days before these visits.

I packed a barf bag and baby wipes just in case.

Throughout the day, she’s been reminding me that she’s scared of shots. Me too. We’re both exhausted at the end for different reasons and we come home to Elliot eager to play and talk about all that’s happened. My goodness, all I can do by then is change into jammies and conk out.

He also wants to know if Ellis got a post- clinic prize and if he got one too. It’s a strange tradition we started since she was a baby. I didn’t want Elliot to resent his sister for all the times I’d be with her running to and fro appointments, so I’d get prizes for both Ellis and Elliot from the hospital gift shop. When she got older, she’d pick his prize.

It’s saved us a lot of grief so I can’t complain. But this means we have a bunch of random toys.

Anyways, we’ve come a long way in a positive direction thanks to God and the medical doctors caring for Ellis. I always feel funky the night before these appointments, which only exacerbates my insomnia.

Thanks for reading…needed to share before falling asleep.

The appointment where brother tagged along

Ellis’ update: Heart is well! Instead, it’s abdominal migraine.

It’s been a few days since I’ve been able to update even though Ellis got discharged Saturday night. I had little time to sit down and actually write something that made sense. I was running on fumes and any quiet moment still kept my adrenaline running. Once our family got home, all the tiredness and a dash of crankiness swept over me.

While in the hospital, I had to answer lots of questions and repeat explaining her symptoms to various specialists. Typical questions: What brought her in for the last 2 hospitalizations?; What tests did they do?; Did she throw up again?; How many times?; Does her stomach hurt?; Where does it hurt?; Did she pee?; How many times?; How much?; How much did she drink?; and, What did she eat?

Even though the nurses asked Ellis these questions, she refused to answer or give eye contact. She clammed up immediately pretending that they weren’t there. In the first and second hospitalizations she was reluctantly cooperative, but the multiple lab draws, check-ups, EKG’s, ultrasounds, and x-rays drove her to the limit. She had little control of the situation and felt vulnerable.

Drama went down when asked to change into a hospital gown before her heart catherization. She was used to wearing her own pj’s in the hospital, but for a procedure she needed to change. This brought on a flood of tears and downright refusal to change. She stiffened her body and wouldn’t let me take off her clothes or even put on the gown. Thank you nurses for your patience, kindness, and smiles!!

The first day we went to the emergency room I had my first meal at 5:30 p.m. We stayed in one of the back rooms with Ellis dry heaving and squirming with stomach pains. She was getting intravenous fluids for her dehydration, but the doctors felt uncomfortable managing a healthy amount of fluids in her body: I learned that it’s a fine balance of how much fluid she can retain in relation to her output. All of this can negatively affect her heart function.

The emergency room doctor informed us that Ellis’ “significant and complex medical history” exceeds their hospital capacity. Best care for her requires a transfer to our familiar hospital, Lucile Packard Children’s Hospital via ambulance. At first the diagnosis was UTI, which was getting treated with intravenous antibiotics, so I didn’t know why we had to transfer. I just received a bill from last month’s ride, so naturally I was hesitant at first. I was told UTI was not the main factor and something else could be contributing to her sickness. l was advised that it’s best to rule out the heart as causing her stomach pains.

Back at LCPH and saw familiar faces again. First 2 nights pushed my physical and mental capacity farther than I thought I could handle. Her symptoms remained a big mystery and these symptoms got us readmitted 3 times. Everyone was trying to figure it out: Is it heart related or gastrointestinal? To get to the final diagnosis they had to rule out other causes. This required a heart catheterization, which is an invasive exam that requires anesthesia. She overheard the conversation and after they left the room, she said “Tell me what are they going to do. I’m scared.”

On the third day, her condition started to slowly improve. This was evident with her smiling, talking, going to the bathroom, and saying she’s hungry. Like I mentioned before, she refused to answer questions or look at anyone who came into the room. It was hard to see her this lethargic: I missed her funny laugh, cute talking mannerisms, her running around, raspy voice, and the healthy Ellis I know.

Sleeping on the daybed with mommy instead of the hospital bed. Don’t care about the crazy bedhead. 🙂

Thankfully, all of these tests showed that her heart is working well! The previous sicknesses too were not related to the heart. This is a huge relief, because her single ventricle circulation is precious and must stay healthy as long as possible before more interventions are necessary.

What made me sad at goodbyes at night was Elliot tearing up and wiping his eyes. His lingering hugs almost made me cry. It’s a matter of who needs me more. I shared this with a close friend who has walked this journey with me many times, and she reassured me that Elliot is stronger than I think. Yes, he is. This is part of growing up and, hopefully, building resilience. But any mom will have pangs in her heart to feel the warm embrace of your child who doesn’t want to let go.

Through our five days in the hospital, I was holding up. I didn’t fall apart. I didn’t get sick. I didn’t have high expectations for my condition. But thankfully God gave me grace. He blessed me through friends’ acts of encouragement and generosity, phone calls from family, and Chris and Elliot who visited every night. The latter one gave us a sense of normalcy for our family and a chance for the kids to play together.

Thank you everyone for your encouraging comments, support, and love!! These experiences show me how much goodness exists in the world even when the situation seems bleak.

I know there was much more thoughts I had, but my mind hasn’t processed it yet. And if you’ve read this far, thank you.

After all the tests, final prognosis: Abdominal Migraine. Children, from ages 5-9, get this unexpectedly that can last from several hours to 3 days. It’s not a head migraine but a migraine in the stomach. We are resuming an old medication, seeing gi soon, and figuring out its triggers. It may be stress related. I think this may contribute to my stress too!! Next time it happens we will have to go back to the Emergency Department for treatment. This is life for us: a strange norm.

In the e.r. again with stomach issues

Today was Ellis’ third trip to the e.r. in one month. Speechless. Familiar frantic drive, packing overnight hospital bag, phone call to Chris to hurry home to babysit Elliot.

I hope this time they find the root cause of the severe stomach cramps and dry heaving. She shakes while her body is hunched over her throw-up bag. No answers. The symptoms come fast and severe: they immobilize our family into basket cases.

Waiting for test and imaging results in the e.r. Looks like another hospital stay.

I pray that I don’t fall apart. I’m holding up, but this is a lot of mental, emotional, and physical strain to take: 3rd e.r. visit in one month. If we stay, 3rd hospitalization.

You know it’s weird when lab people and nurses recognize you. I just saw the front desk lady from Standord heart center in the e.r. this afternoon: her son was sick. Small world.

My heart goes out for Elliot. He’s just doing his thing and he gets thrown into these overwhelming days: mommy crying, running around packing overnight bag, Ellis throwing up, me calling people for help.

He’s familiar with the emergency drill but today we couldn’t follow through with our afternoon plans and picking up Chik fil A. With tears in his eyes he said, “Ellis is getting kind of annoying.” But just yesterday he held her blankie while she was throwing up. Complex relationship. We’re figuring it out.

Thanks Chris for holding down the fort at home! Doctor is calling the children’s floor to get us admitted.

Today is one wild december day.

Ninja pose this morning

In the er this afternoon

No definite reason for dry heaving

Busy month with hospitals

Btw, it has come to my attention that those who follow me via email received an earlier edit of this post. Something is going on with my phone and WP, so please ignore the untitled one.
Read this one instead. Thanks!

Quick note: This post was written in between breaks with Ellis sitting on my lap at the hospital lobby. To keep myself from exploding at the unreasonable wait time, I blogged instead. November 28, 2018

What a week it’s been. Ellis got discharged ftom the hospital last Wednesday and the rest of the Thanksgiving weekend went smoothly, like really well. Today is next Wednesday and we were back at the pediatrician’s office. And we just finished getting an ultrasound at the hospital. Ellis screaming in pain intermittently over her stomach spasms. No explanation.

I’m not a runner by no means, but today I ran. I parked my car in the red zone because the valet parking line was so long. I figure the valet person would understand and take my keys. Whatever!! If she didn’t take my keys, then I would have just left my keys on the counter or risk getting towed. I ran holding her in my arms with her brown bear blanket draped over my shoulders.

My demeanor screamed “get out of my way!” You wouldn’t want to mess with a crying mother with her purse dangling from her neck holding a sick kid barfing into a grocery bag. Amazing how things don’t matter when you’re in an emergency and when your child is crying in pain. You don’t care. You don’t see. You just aim for the front doors and for immediate help.

I won’t get into the details of registration hell.

Tentative prognosis: inflamed pancreas. We’re admitted again to the same hospital. What a day. Pain med has kicked in. She’s not so angry with me now. It’s going to be a long couple of days.

New update: not pancreas issue. It’s probably residual virus from last week. This requires a blood draw. But white blood cell count is normal; probably not a virus or infection. Another blood draw: maybe toxicity from one of her heart medications. Nope, not that either. She held onto her blue throw up bag all day.

Every late autumn to early winter since her birth, she’s had some kind of sickness that landed us in the hospital or pediatrician’s office.
  1. 1st year: hospitalization for rsv.
  2. 2nd year: hospitalization for norovirus.
  3. 3rd year: bad cold…recuperated at home. Awful coughs that made her blue and gaggy. Tearful experience for me.
  4. 4th year: emergency room visit and frantic meeting with cardiologist over head contusion from falling out of carseat, not good with her Coumadin medication. Then, she caught Chris’ stomach bug on top of that.
  5. 5th year: 2nd hospitalization for stomach bug or whatever it is in 1 week. Whew, I’m pooped. But I’m thankful her pain is managed. I was helpless at home.

Not knowing the cause, we got transferred to Lucile Packard Children’s Hospital 10:30 p.m. They are familiar with Ellis’ history, so our adventure continued with an ambulance ride.

No explainable cause from them either. Her stomach pain was still severe and she couldn’t lay down. I could do nothing but rub her back. I was running on fumes and all the new nurses and doctors in a bright room took me out of my comfort zone.

A few hours later, she fell asleep without pain medication. Her condition started to improve. Sigh of relief.

Elliot was managing well at home too. It makes me sad that he misses out on lots of things, but I trust God will fill in the gaps. His maturity astonishes me; although he’s been calling me every hour asking when we’re coming home.

What a month. I had no idea November would bring all these ordeals. But I am thankful that I have Chris & Elliot, family, and friends who encouraged me when I felt overwhelmed. Elliot was a super trooper; he reminded Chris of all the things I asked him to bring to the hospital and ran a bunch of errands with daddy without complaining.

On our last night at the hospital, we hugged goodbye outside the hospital room. Then he said that he wished he could spend the night at the hospital with us. Everyone giggled at his  comment, including the nurse.

Pretty big room with a pull-out sofa for parent. The room size convinced Elliot that there was plenty of room for a sleepover.

Have a healthy, blessed, and joyful holiday! Praying for peace and happiness.
In these moments of being away from homeand feeling vulnerable, I kept praying to myself that I won’t fall apart or get sick. It seems selfish to think about me, but to caretake someone else I need to be well.

Somehow in my desperate moments God pulls me through these challenges and gives me strength that I did not have. There’s no other explanation from it; the effects of coffee can only keep me running on auto pilot. God whispers comfort when things are spiraling out of control. He is a good God.