Blog Archive

Tuesday, November 22, 2011

home

We're here. Ava's settled in nicely. She's pretty sedated from her meds, which makes easier to keep her sequestered from the germs all over our house right now. We're not comfortable with it for the long term. As nice as it is that she no longer cries all the time when not being held, she needs to wake up and observe and interact with the world around her in order to develop! We're hoping things will level out and she'll adjust to her new med levels and perk up soon, otherwise we might need to make some phone calls.

The rest of the crew is in various stages of illness. So we soldier on with the help of THREE additional people at various times throughout the week and thank God for all the little and big ways He's caring for us right now. More on that in the next post.

Monday, November 21, 2011

Discharge Take Two

If all goes well, we'll be discharged in the next few hours, and get to head home, hoping to stay there at least through Thanksgiving. Ava's pretty drugged from her last boost in her meds, but we hope that will settle out over the next few days, and at the very least buy us some time at home over Thanksgiving, my parent's visit and Ruby's birthday.

It's a bad sign when the hospitalized child is the easier of the four...Matt had the home assignment this weekend and spent the entire weekend covered in or cleaning up bodily fluids, holding coughing or feverish girls in the middle of the night and generally being Super Dad. Let's just say, he was eager to return to work this morning and compartmentalize a bit today!

Along those lines, if you're praying for our family, would you add to that list, Miss M, my parents and anyone else who is planning to help us in any way?! It's all well and good to have a support system in place, but it seems like anyone who enters our orbit these days gets sick too!  And selfishly, we need healthy helpers!

So we head into the eye of the storm at home praying Ava, Miss M, Matt and I are protected from whatever virus is running through our little princesses, praying to stay home and seizure free for a while, and praying for the space to be thankful, to celebrate out sweet Ruby and have joy in our castle each day.

Saturday, November 19, 2011

Holding steady

Ava's been seizure free since yesterday afternoon. We'll likely be here through the weekend. Elizabeth is also maintaining at home. Now Ruby also has a low grade fever, so we know there's a virus mixed up in there somewhere, we just pray it doesn't turn wonkey in Elizabeth. We can't prevent anything at this point, so we just watch and wait.

We're bummed to miss another week of church...Elizabeth's dying to go and wear an outfit she got for her birthday. Hopefully next week everyone will be well.

In fun news, our dear Ruby turns 4 on Friday, and my parents are flying in for a few days! We know better than to make any plans...(ours seem to be derailed on a daily basis!) but we're soooo excited for the visit, even if it means we just have extra company in the hospital and extra hugs for the girls. We might even think about celebrating thanksgiving...we'll just wait and see.

Friday, November 18, 2011

So close

We could almost taste it! This afternoon as we were gathering our things to leave the hospital, Ava had a small seizure. It gave us pause, but we agreed that we would bump up a med and take her home....then 45 minutes later, in the elevator on the way out to the car, she had another seizure. So we pushed the up button and the plan changed. She's had two more, so it's officially a "cluster" and we're back in the hospital for a few more days.

In the mean time, Elizabeth is spiking another fever....we're hoping it's just a virus, but we'd prefer she get well so we don't feel the looming of another hospitalization for her.

One step at a time.

Thursday, November 17, 2011

Yesterday was a good day for Ava.

Ava had a small seizure in the morning, so they went up on one med, and will wait to see if we can avoid a big one...this is precisely why we're here.

She had a repeat hearing test, which she passed with flying colors! Her hearing is basically normal! What a relief.

Some of her morning blood work came back elevated, so they had to re-stick her twice last night. We finally BOTH got some rest when I let the nurses play with her around 2am...and they kept her until 7!

Nothing big on the schedule today, just trying to remain seizure free!

Elizabeth continues to recover from her bug and in the mean time is trying to make friends with her new hearing aides. She's willing to carry them around, and will wear them turned off while she's eating ice cream. So we're making baby steps of progress!

Wednesday, November 16, 2011

Spa Day...kind of

Around here, we take pampering however we can get it. Last week, during our hiatus from the hospital, Ruby "saloned" me which means she, "the Saloner", brushed out my hair and put in every clip she could find. Very relaxing, let me tell you.

Today, Ava and I will go sit in a recliner for a few hours and try to sleep while they stick things in her ears to test her hearing again. She had a busy night (read: didn't sleep so much) so she should be good and tired when I feed her in the little sound booth. This was a prescheduled test, to be done as an outpatient, but we were able to avoid canceling it! She's still seizure free, so we'll watch for a few more days as her med levels settle out, to see if we're still in "the zone" before going home.

Thanks for your continued prayers! The girls are doing well at home with Miss M and a few friendly visits from familiar faces. And one day at a time, we're making it!

Tuesday, November 15, 2011

Thankful for friends

Friends who bring coffee, even when their baby is in the hospital too!

Friends who love on our girls, take them to the park, sit with them in the hospital, send or bring them treats and help them have calm hearts even when our world is upside down.

Friends to hold Ava when our arms are tired...day or night.

Friends who make meals, organize our meal calendar, send starbucks cards or grocery money, who try to share our load every day.

Friends who are friendly faces among Ava's and Elizabeth's doctors. Our guardian angels here who pop in in the middle of their day to check on us, and who work to make our stay as painless as possible.

Friends who call, email, text, comment, post and generally make sure we know we're loved, thought of and supported.

Friends who show up to pray, cry, listen, make us laugh (and bring coffee!) and hang on for the ride, even when the ride is bumpy for a long, long, time.

Monday, November 14, 2011

Yaaaaaay!

We're outta here! One down one to go!

Family Vacation....of sorts

This morning both girls got the call to go down for ultrasound at 8am, so we rubbed the cobwebs from our eyes and took a family vacation down to radiology! They looked at Elizabeth's kidney and Ava's ventricles. Both got good reports! So far E's cultures are still negative, so since her kidneys look good, she gets to go home today! Ava will stay probably through the end of the week so we can make sure we're not going to bounce back again. One day at a time...

Sunday, November 13, 2011

Double Trouble

Would you believe me if I told you two of our angels were camping out together in the hospital tonight?? It's still surreal. This morning, Ava started seizing as we were getting ready for church. After 10 minutes, the ambulance took her and Matt to the ER. When Elizabeth woke up, she was obviously not well, and a call to her Dr. won us a trip to the ER to rule out a kidney infection.

Praise God:
*Since Ava's last admission we've gotten a letter from her Neurologist to expedite things in the ER.
*Ms. Marcia came over and cared for Hannah Mae and Ruby so the rest of us could be in the hospital.
*Miss M comes back tonight and will stay with us all week, so that significantly reduces out childcare stress...at least for the ones at home.
*a friend is here tonight while Matt runs home for supplies.
*We have a shared room! Big Sis and Little Sis each have their own nurse, but will get to sleep a few feet from each other.

Matt's home now, taking the "middles" out for an ice cream treat. They could both use some Daddy Time. We'll just take it one moment, one breath at a time. I cannot wrap my mind around our reality. It just seems impossible! Yet we know God specializes in the impossible. So here we go...

Thursday, November 10, 2011

Wednesday, November 9, 2011

New digs!

Ava had a busy morning! She slept through much of it, but managed to get a head ultrasound, an X-ray, and an EEG, all of which left her too tired to do much entertaining when the GI stopped by to talk about her vomiting, and Speech Therapist stopped on to troubleshoot her feeding issues. She did give me a talking to after I had the audacity to wash the goo from her head and give her a much needed sponge bath. What nerve! Then this evening, we found out one of Ava's NICU buddies was also here in the hospital. We got a visit from her mom, and that was a treat, though we agreed we'd rather not meet under such circumstances.

So far, we're still looking at a discharge once the team is happy with the level of Ava's medications for seizure control. She had a short one after dinner, so we'll see what that means for tomorrow. The best moment of our day was getting wheeled out do the tiny shared room, and into a spacious private "suite" around the corner. Whoever was responsible for that upgrade gets a raise! We'll definitely sleep better without a roommate. Speaking of, Ava's asleep, so I should try to join her before they come to check her vitals at midnight. Thanks for all the prayers, texts, voicemails and help with meals! We're so grateful!!

Scary night, Sleepy morning

After a few days of throwing up a lot at home but slowly seeming to recover some from her shunt surgery, Ava had two small seizures on Monday night. We were told to watch her and see if her brain "cooled off" over the next few days. Last night, Matt and I took a few hours to go to dinner in between Ava's feeds...our first date without her! Praise God for Miss M!

At 12:21am, Ava finished a bottle and started seizing. After 20 minutes, we called an ambulance and it was another 50 minutes before she was given medications to stop her longest seizure to date. We've been able to rule out a shunt malfunction and recurrent hydrocephalus, so most likely we just need to increase her medications and address her vomiting so she can keep down the medications she's getting!

Here's our little Bean resting comfortably under the watchful eye of a new little lion friend. I thought he looked strong and brave, just like Ava is. They're perfect for each other.

Saturday, November 5, 2011

Recooperating

Discharged

We headed home this afternoon...thank you for your prayers. Ava's stable and we all just need time to heal. We're looking forward to managing our circus while all under one roof.

Overnight

Ava had a stable night, will most likely be transferred out of the PICU, and could possibly go home if we're comfortable with her pain management. She didn't have any more seizures or apnea overnight, but she also didn't sleep much. Praise God for our friend, Jenny, who sat and held Ava most of the night so I could try to rest. She's comfortable and resting now. As far as I know there was no puking in the Harms House last night. We'll see what the day holds, and pray for grace sufficient.

Friday, November 4, 2011

Too Much

Two weeks ago, Ava was admitted to the hospital with seizures.

One week ago, she was home, not seizing, but still pretty sedated, and throwing up many of her feedings. Her vomiting was blamed on reflux and her sleepiness attributed to her seizure meds. She was expected to perk up after a week or so. Elizabeth was down with a nasty cold and a UTI that would thankfully remain out of her bloodstream.

Two days ago, Ava's feedings suddenly dropped off and she started sleeping a bit more and eating about half of her previous volumes. Ruby was up Much of the night coughing and miserable.

Yesterday, I looked at Ava and thought her head looked just a bit big and felt her fontanel (soft spot) and thought it felt full. (the soft spot bulges when the brain fills with fluid) Our helper, Miss M was sick with some sort of food poisoning. Hannah and Ruby were both up coughing and puking in the middle of the night.

Today? While Matt was a having a prescheduled outpatient surgery across town, a head ultrasound was ordered to put our hearts at rest. Only it didn't make us feel better. Ava's hydrocephalus was back. Her shunt was malfunctioning and would need to be "revised". Surgically. Today.

So we flexed. Miss M could stay an extra night. A friend took Elizabeth and Ruby to the Fall Festival at school. A friend came to sit with me while Matt recovered at home.

Initially the results of Ava's surgery were glowing. The surgery worked to fix the blocked valve and reduce the fluid pressure. She'd be transferred to a room for observation and we'd be discharged in the morning. But shortly after surgery, Ava began having seizures and having apnea episodes, where she would stop breathing and start to turn blue. It was horrifying. So instead we went to the Pediatric ICU for closer monitoring. Since arriving, she hasn't had any episodes of apnea or seizures, but when the rest of the anesthesia wore off, she clearly became uncomfortable and after trying all sorts of ways to comfort and hold her, she's now resting for a moment in a friends arms, getting morphine in her IV.

We need rest for our sweet one, and ourselves.

Tuesday, November 1, 2011

Operation: Live-In

On Sunday night, we welcomed a wonderful young woman into our home and into our lives. Through a number of twists and turns, we believe God lead us to each other and are carefully pursuing the possibility that she will live with us at least through December to help our family through whatever is ahead. Some of you have been so generous to contribute to a help-fund for us, and many of you have been praying desperately for God to help us for some time now. "Miss M" is uniquely qualified having grown up in a large family herself, and I feel so I feel entirely thrilled that she's been able to jump in so quickly. But beyond her qualifications, her presence has been an immediate blessing...and as a bonus, she doesn't mind being puked on! (a prerequisite to join our family!)

To give you a little peak:
*Sunday night, we still didn't know if Elizabeth would need to be admitted, but had so much more peace as we went to sleep, knowing we had an extra set of hands if E spiked in the middle of the night and we had to take her in.

*Monday night, Elizabeth had insomnia and would sob every time I tried to leave her room, so I just brought up my pillows and slept on the floor, soon to be joined by a coughing Ruby. Both girls took turns needing me throughout the night, and it was so wonderful to be available to them, knowing that if Matt needed back-up downstairs with Ava, Miss M was available. I was able to mother them and nurture them without trying to juggle every single crisis in the house at that moment. I honestly didn't even mind that I wasn't sleeping! THAT is a miracle. :)

*This afternoon, I remembered at the last minute that I had a hospital appointment for Ava and had to rush out the door. Miss M was completely available, already engaged with the girls and able to carry on the day without the girls even blinking. In fact, I don't think they even realized I'd left!

*This evening, with Miss M.'s help to keep our "wanderers" from wandering off, we were able to bake together, enjoying mixing, stirring, pouring and tasting...what a blessing.

Are you breathing a huge sigh of relief with me?? I told Matt last night, "Honey, I feel like we might just be able to live a little!"

So thank you for helping make her presence in our lives a reality, through your gifts, your prayers and for your encouragement and validation every time I expressed the feeling that hiring help felt like a luxury. I feel like I'm getting a glimmer of what it will be like to enjoy my children, and not just manage them in and around crisis 100% of the time.