Little’s Big Heart 2 – Amazing DRAMA

wood-drama-signWe used to give my daddy a hard time about his penchant for drama. He was a super story-teller and even the simplest of events could turn into dramatic tales. Truth is, my daddy lived a dramatic life and was exposed to dramatic things consistently. I think that his walking with the Lord through amazing things made it easier for him to see the amazing, and potential for amazing, in what I might have called simple items. As I think back, rarely did he wax eloquent about himself; his drama centered more around what God was doing or had done.

My family’s teasing has made me very aware of the stories I tell and very sensitive toward stirring up drama. It has made me a bit gun-shy about sharing the events of our life because, if I’m honest, we happen to live a life that tends toward the dramatic. Whether it’s the effects of Autism on our son’s choices at school, KB’s growing to realize she is the “youngest, but also the oldest” child, or Little’s recent enlarged heart . . . there’s drama. I think there is a challenge here about my walk with the Lord and having spiritual eyes like my daddy; I still don’t always see the amazing or potential for amazing.

The past 24 hours have been dramatic. Little was asleep by 8:00 PM last night and I turned in at 10:30. I was awakened at 3:30 AM by our nurse and a shower of questions about Little’s heart rate during the past visit to the hospital. It seems that for the past two hours the nurse had been watching Little’s rate dip to very low and then shoot up to very high and then spend time dancing all around in between. Within minutes I saw what she was talking about and I have to admit, I finally cried. My mind went to all kinds of places as they wheeled in the EKG machine and got to work.  I just sat there praying and wondering until the doctor came in and said there wasn’t anything to worry about – this chamber and that chamber are working together and that’s good … but they don’t know why it’s jumping around and she’s called another doctor to consult, but there’s no reason to panic. I knew I wasn’t going to go back to sleep and so I decided to shower. There I contemplated what amazing thing the Lord might be up to and considered the other feeling I was experiencing… nausea.

I was able to go back to sleep once I was clean. The new nurse came on duty at 7:00 AM and I woke up to introduce myself AND apologize to her for the onslaught of my norovirus that she was about to be privy to. She gave me a barf bag and a short pep talk about how I could go home knowing that she’s “got this” (pointing at Little). I nodded and called Jeremy; together we came up with a plan that he worked it quite nicely. I ended up sleeping the day away in a room of a poorly located but satisfactorily clean hotel and Jeremy stayed with Lily. Our friend picked the kids up from school and made sure they got fed and to youth group; Jeremy left in time to pick them up afterward.

I only threw up once … the prayers of the teeth brushers availeth much.

So, I’ve decided to take a minute and to relive this day with my daddy’s eyes and see if I can look past the drama to the amazing.

  • They were going to send us home today but are doing a more thorough look at the electrical workings of Little’s big heart. It may take time to know the full extent of amazing on this one.
  • They will now be sending us home with oxygen and a plan for a sleep study since Little has an obvious track record of not being able to breathe well while she is sleeping. I thought it was odd they sent us home without it last week, but the Lord gave them a “do-over” and used norovirus to get our girl the oxygen she needs. His care for her is amazing.
  • My friend, Nancy, has been out-of-town for two weeks and just got back. The personality God gave her and stage of life she is in made it “easy” for her to jump in and help today. I’ve been so concerned for the siblings and time at Mrs. Nancy’s is a treat. Her return and availability at “such a time as this” is not lost on me. . . it’s amazing.
  • I was sitting on the bed/couch this morning and trying to find a hotel with an empty room they would let me have immediately.  I was having a hard time sitting up because it made me want to throw up and I said to myself, “I would love for someone to just do this for me. . . I wish Jeremy was here.” A friend from Colorado Springs texted that minute and asked for an update.  I told her what was up. . . Little needing new tests means not going home, I am sick and was just looking for a hotel to go hold up in with an immediate check-in availability. She texted back a moment later to tell me that she had a place in my price range that was waiting on me to arrive. She did that for me. There should be an entire blog post about the hotel and my time there but the truth is her love for me and servant-hearted response was just plain amazing.
  • We have a friend who recently returned from the mission field. She wrote yesterday and asked about the family and then told me she was going to do something very in line with the culture where she had worked. She asked me to just let her do this cultural thing and that was it.  Then she sent money. I told her I would accept her cultural gift and let her know how God used it as a provision for us. Well, it paid for the hotel room today that was a real life saver for me. Her generosity — His provision — amazing.
  • While I was gone, Little got moved into a private room so that if I were still sick I could puke in the privacy of our own potty. It’s the same room we were in last week. It’s great. I’m just not sick anymore. AMAZING.
  • My friend wrote tonight to tell me that the whole church had prayed for me. Amazing.

On one hand, today has been just another day at the hospital – another day in this journey. On the other hand, the God of the universe saw fit today to protect our daughter, show love to me, and provide for our family … again. Maybe I should adjust my view? And maybe we shouldn’t have given daddy such a hard time.

Lily Hatch

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Little’s Big Heart 2

So, here I sit in our local hospital waiting on the ambulance to transport Little back down to Children’s. This will be our second ambulance ride in as many weeks and I find myself dreaming of winning the lottery just so I can buy our county another emergency vehicle.

Little is sleeping and has been for four+ hours, save the brief moments where she wakes up long enough to be sick. That’s why we’re here. She was having abdominal pain and threw up and the discharge papers said, “Call this number if she blah, blah, blah, complains of abdominal pain, blah, or throws up.” She did so I did. They wanted us to drive all the way to Children’s right away but Little just wouldn’t stop throwing up and so they sent us here. While the amount of time we have spent here may feel ridiculous, she has received needed/timely care.

(Side note: Just learned that they can only have one ambulance out of the city at a time! They are contracted to have a certain number in city limits at all times and the kiddo in the room beside us left around 10:30. That kiddo needed a helicopter but the winds are too strong and no copters are flying tonight.)

Our Little doesn’t need a helicopter. Turns out all tests came back showing her heart looks exactly the same as last week. BUT with all her body is losing, they are worried about her dehydrating. Because of the trouble her heart is having pumping fluids, the use of an IV is tricky and has to be closely monitored and so we are being transferred to where they monitor hearts best; “Number 7 in the nation” best.

I’ll keep blogging and asking folks to pray. There’s nothing like knowing people are joining together to cover those you love. This time I ask that people pray for our son: there is so much going on with that kiddo too right now and I am very aware how little mamma he is getting at the moment. There’s prayer for KB: it is spirit week and she has a huge presentation and no mamma there to help her dress. (So many costumes.) And for my Honey – patience, perseverance, and a 6th sense…the mamma sense. Then there’s Little’s healing and my feeling overwhelmed. What if everyone just prayed for a Kicklighter every time they brushed their teeth?

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Little’s Big Heart – HOME

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Little had a hard time falling asleep last night and I am embarrassed by how long it took me to realize that it was because she was excited about going home. She woke up at 4 AM but I made her go back to sleep but at 5:30 it was all hands on deck to pack and get her out of there. We were discharged around 10 AM but didn’t actually leave the hospital until 11:00. We drove away and I could see her physically relax. She was asleep before we got to the north side of the city.

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While she slept I reflected on our time in lock down *wink*. She was very focused during our stay; very intense.  I mentioned it to the nurses more than once because i chalked it up to her big heart and it’s effect on her energy level BUT looking back I now wonder how much of the intensity was her coping with the stressful factors at play: away from home, away from family, being poked and prodded, talk about her heart, tubes and needles… no wonder she collapsed and slept as soon as she was confident she was on her way home.

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And since we have been here it has been business as usual with somany bursts of news and showers of affection for her siblings. “Bubba, look at the hole in my arm from where they had my IV.”  “KB, look at the coloring book my teacher sent to me while I was in the hospital.” “I have a big heart but yours is still small.” “I love you and I missed you SO MUCH!”

Funny how her anxiety dissipated the further we got from Childrens  and mine intensified every minute post being discharged. Right now she is in bed. She is coughing and I am sitting on the couch full on tension from head to toe. My energy is all going toward fighting “what-ifs” and to recalling Truth.

What is your favorite “go-to” encouragement? Would you mind leaving it in the comments so that I can have a ready-made list when I find the worry becoming too intense to recall on my own?

Thanks! And keep praying.

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Little’s Big Heart – Heading Home

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Word on the third floor is that we are going home tomorrow! If you just yelled, “WHAT?!?” then you did exactly what I did. Apparently Little is doing “extremely well” and everything they are doing here is now stuff I can do at home, so home it is.

They did another echocardiogram today and the doctor said that to her naked eye she couldn’t tell that Little’s heart was much better but she could tell it definitely wasn’t worse. . . so there’s that. They have her medication worked out to a good place … so there’s that. There is still no ’cause that we are aware of, no promise that it will heal, and no reason we should expect it to get worse.  This would be the place to make a joke about  doctors not knowing much, BUT the truth is that these doctors have helped our little girl tremendously over the past four days and that’s because of  what they DO KNOW . . . so there’s that.

We may not know why and how but that’s nothing new when it comes to Little. With Little we have learned the importance of living in what we do know: we do know to pray because He hears and acts. We do know to trust because He knows the whole picture. We do know to watch for His hand at work because He does amazing things around in through our Little.

Our firstborn is special and I have always asked God to use her wherever she is as a light for Him; that lives would be different because they met her. We have seen that in our short stay here and pray that it will continue over the months of outpatient follow-up visits we will have. Some of things we have heard said are:
“I am going to do an echocardiogram, Little and you will be able to see your heart on this screen.” . . . . “God made my heart. I am going to see what it looks like.”

“I love coming to your room to see you, Little. I just love talking to you.”

“I am so glad I got to be your nurse, Little.”

“I see on your chart that your middle name is Joy – that is just the perfect name for you Little.  You seem full of joy.” (Her reply was, “I AM.”)

As we go home we ask you to continue to pray that Little’s heart will return to its original size and strength. Please ask the Father to give Becky patience, wisdom, discernment and faith during the transition and the ability to retain information we new skills must be learned and a new layer of care much be applied. Please lift up Jeremy for those same things and ask the Lord that these new changes would grow the siblings into more loving, caring, and empathetic people instead of bitter, angry, and selfish.

 

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Little’s Big Heart – Day 3

It has been a busy and fun day for sure! Little turned 14 today and woke up at 5:30 AM to tell me it was her birthday and ask about opening presents. Funny how circumstances play into the way we deal with things: she did the EXACT same thing last year and I was ticked off for being woken up. This year it was a welcome action because it was something normal in this season of strange and new.

When I finally gave in and turned the lights on to acknowledge the beginning of the day and we were greeted by this:IMG-0757

We were her only patient so our sweet night nurse made these letters and snuck in during the night to hang them up. (Multiple signs of a great nurse here: thoughtful and quiet!!! I never heard her and she had even told me she was going to do it! Three cheers for Nurse Claire.) From this moment on it was an onslaught of birthday cheer. Room service showed up with a special placemat and a stuffed animal on her tray. Everyone employed here who came by at any time said SOMETHING about her birthday. Balloons were delivered. Gifts were opened. The hospital sent a cake, ice cream, and a gift (a Hatchimal – long time desire of her heart) to our room! She talked on the phone to her Daddy and siblings, her grandparents and cousins, and an Aunt! She is exhausted.

For about an hour it felt like my birthday. . . my friend Erika came up from Colorado Springs and brought her four month old chunk of happiness.  It was such a joy to spend time with her, catch up on her life a touch, and talk about what’s happening here; it was heaven to hold that little man and kiss his face. (His expression here does not reflect his attitude during the rest of the visit.)IMG-0766

Oooh – and I got to go to Target. And they moved us to a private room with our own bathroom.

It was a good day. I almost forgot why we were here. Almost.

Our nurse today was sweetness personified. Just before she left for the night Littles feet turned the horrible shade of gray purple that I have become accustomed to seeing. Ellis’ laughing eyes turned very serious as she began massaging Little’s feet, checking other extremities, and elevating her legs. This change of intensity continued with a conversation about just how big Little’s heart is and how hard it is having to work to get blood to her feet. By the time the conversation was over a new heaviness had settled into my spirit. The last two hours have been filled with more anxiousness than the days before. Please pray for me to trust our Maker and His perfect plan for our daughter and family. Please pray that the peace that passes all understand would guard my heart and mind in Christ Jesus.

And sweet Jeremy is home with two sick siblings. It seems no one got sleep last night but instead chose to take turns throwing up. My husband is a jewel and cleaned the carpet. . . his deep appreciation for the carpet cleaner has caused him to make strong statements about future wedding presents we give. Hmmm. Please pray for rest for my husband; healing for the siblings; wisdom as Jeremy manages the house and his work.

Changes in Little: She was down 10lb. this morning and they have decreased the diuretic she is taking. Apparently there was concern about her kidneys yesterday but those are gone after the labs came back today. She didn’t wear an oxygen mask at all today and kept her strong coloring, but even now as she is falling asleep in front of me I see that her oxygenation level is dipping.  I expect to see the night nurse in the near future.

Thank you again for waiting and praying with us. Wanted to leave you with the precious prayer our friends’ almost-four year old prayed for Little:

“Dear God pweese make Yillee’s heart stay vewy big for all your wuv she shares. Pweese make it small for all da blood. Amen.”

Amen.

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Little’s Big Heart – Day 2

LIlyWe are wrapping up day 2 at Children’s Hospital and I have received more than one message asking me for an update on Little’s Big Heart.  On one hand it is such a blessing to realize the love of the Body and the joy of prayers on your behalf.  On the other hand it is so hard when so much has remained unchanged since yesterday.  SO, I am going to try to turn “we sat in the hospital and waited for Little to dispel fluids” into something fun and exciting to read; the important stuff is bolded.

* We both slept last night which is a true blessing * I finally got to take a shower this morning and it changed my view on life * I was given the responsibility of calling in Little’s breakfast choices and I spent the rest of the day mastering the art of strategic ordering. . . maximizing her one entrée, three sides, and a beverage to feed the both of us three times today * Blood was drawn by two Sarahs who now have my devotion because they didn’t make my daughter cry * Little has had to wear an oxygen mask through last night and today because her lungs just haven’t had the room to inflate. She hated the little prongs that go into your nose and so they switched her to the mask and that’s worked much better * The day nurse showed up in Texas Longhorn scrubs and I had an emotional reaction (Jen Allen) * Multiple doctors came by to listen through a stethoscope and press on Little’s tummy— Said doctors conferred and came to the conclusion that little had changed with Little and we would continue with the previously prescribed plan * Friends showed up for a visit. They brought my van so we now have a way home when they let us go.— We prayed together for Little’s healing—After praying we talked and laughed — We (I) got in trouble with the neighbor nurse for being too loud * Little was transferred from the CICU to the CPCU (Cardiac Progressive Care Unit) for the duration of our stay (NOT because I was loud! This transfer was already planned before my transgression.) * Our new room is across the hall from the shower * After being pale and barely speaking all day, Little got color in her cheeks and began asking every nurse their age— she’s back, folks * The new room has an Xbox and you can check out games downstairs, there are movies to check out, and a library— Little thinks being in the hospital rocks * We got to FaceTime with Daddy and the sibs * Little didn’t throw up all day — She wasn’t super hungry but she did eat which is a switch from the last few days. * KB did throw up today * Our previous nurse is 38 and our present nurse, Claire, is 25. *

Previously Prescribed Plan — The doctors are giving Little a diuretic to help flush all the fluid from her body cavity. It’s working – she had already lost 4-5 lbs. this morning when they weighed her. They have also begun giving her a medicine to lower her blood pressure so that it is easier for her heart to get good strong pumps. The heart is large because of the fluid and blood that it’s been unable to dispel because it is weak. The hope is that as the fluid is removed from around the outside of the heart there will be more room for the heart to fully relax between “squeezes” and with the help of the lower blood pressure the hearts strength will return allowing the blood and fluid to be pushed out of the heart.

There are no obvious causes that are evident at this point and no clear picture of how this will play out. And so we wait.

If you were to come see Little right now she would look like she normally does on the outside but the inside is still sick.  We continue to pray for our Little’s Big Heart.

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Starting the New Year Right (?)

Happy New Year 2018 HD WhatsApp Status Images & Text Status

My favorite thing about a new year is the idea of a clean slate.  I love making a plan, setting new goals, and breathing in the possibility of success. Even though the only difference between today and yesterday is 24 hours, I feel like there is the promise of new things … starting over … a clean slate.

As I have gotten older I now approach the new year with an undercurrent of realism.  The dream of  “starting anew” is tempered by the deep understanding that I WILL fail. I might have the plan to spend time with God every day, journal my deep and life-changing thoughts daily, and spend less time online but the truth is that I will NOT do that all 365 days of 2018. It’s a truth that I hate but must come to grips with.

And so, to demonstrate my maturity and depth of self-awareness I began 2018 by doing NONE of the things I have laid out in my goals for the new year. I did a puzzle with my family. I watched a few episodes of Psych. I cooked a turkey. I guess we could say that I failed early.

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You know how people like to pick words for the year ahead— a word that summarizes what they want their year to be about and how they want to live?  I think it’s a GREAT idea and love how it gives focus and direction.  I have chosen a word for 2018 and it is the purposely ambiguous term: “Forward.” There’s freedom for my plans to change, my goals to morph, my dreams to grow . . . There’s acceptance that every day will not be perfect and go according to plan … it captures what I really want from my year: I just want to end the year further along then I start it!  I want to know Jesus better, I want to be living more faithfully, I want to have helped my kids grow, I want to have a better relationship with my husband, I want to have developed my gifts … I want to move FORWARD.

I have set myself up for success: I started the year with a fail! I have documented it here so that I can see my progress. And every day I will start anew with a thankful heart ’cause His mercies are new too.

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Forward into 2018!

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