Eternity and the "In-Between"

For those of you who don't know, Ellie Kate McLaughlin was born on December 4, 2005 and died on December 23, 2012.  Having everything rolled into one month brings many ups and downs. It's a true, violent roller-coaster that you often want to get off of.  Correction. It's a violent roller-coaster that you simply want to jump off of, and back onto the safety of the non-spinning, non-moving, predictable, stable, ground.   

The truth is that this month has been wonderful.  So many stories of reckless love being demonstrated;   excitement over the gifts for Children's Hospital showing up at our door, Christmas cards hanging in our kitchen, Christmas parties, etc . . .  and then . . . this week everything really hit me.  I'm flooded with memories of two very important times in our lives - in Ellie Kate's life - the time surrounding her birth and those intense early days, and the short time we had at home with her before she went to be with Jesus (three days).

This week I am hit with the smells of Baptist hospital where we were told Ellie probably wouldn't make it through the night.  I can smell the soap and hand sanitizer so clearly.  Bittersweet memories flow as I remember walking out of the meeting with the doctor as Ellie was placed on the ventilator. As we walked out of the PICU  I saw so many people from our church on their knees praying for Our Princess.  It was surreal and I remember exactly how I felt at that moment.  I remember the song that I would hear on the radio so often as I drove to Baptist each day (they told us we weren't allowed to stay with Ellie Kate because she was too fragile), and even the smell of the cafeteria there.

Then there is the heartache of the end and the suffering that Ellie endured.  Those last several hospital stays from September to December, almost constantly in and out.  And then at home on hospice and what we saw, what we heard, what we did, what we felt . . . it's all very real this week.  I am torn to pieces over these dark memories.  They shake me to the core, but then I also see the goodness (yes, goodness) of God in His timing in that all of our family was near.  Everyone got to say goodbye and that wouldn't have happened any other time of the year.

Very conflicting feelings.  Very extreme.  Incredibly intense.  

One day this week, when I was having trouble simply functioning, my Mom  encouraged my heart with Scripture.  In the beginning of our loss, I hated hearing God's Word.  My heart was too broken to hear anything really, but now - oh, I want to know God's heart!  I must be reminded of His goodness and His love!  I must be reminded of eternity!  And that's what my Mom helped me to focus on - eternity and all that Ellie Kate is experiencing.  No more hurt.  No more sickness.  No more time.  No more sadness.  Everything we enjoy on earth, but perfected in every possible way. THAT is what MY DAUGHTER IS EXPERIENCING!

Mom also reminded me to focus on the "in-between", and not just on the dramatic and tragic beginning and end of sweet Ellie Kate's life.  The beautiful, glorious, joyful "in-between" that made up the majority of her remarkably unique life.  Our Daughter led such a rich life! Her viewpoint was simple and happy. EK loved her life. 

Thankfully, I'm truly not used to this deep sorrow and heart-sickness staying with me for such a long time anymore.  I'm so grateful that I have been able to focus on eternity for a while now, so feeling so broken and vulnerable has caught me off-guard.  But, that's what happens when you love much, when you love deeply, when you love recklessly.  And that's how I still love My Ellie Kate. 

I'm not sure how next week will be for us, or even next year and the anniversaries to follow.  I don't know if my body will always fail me during this time, or if I will be able to rise above it all.  I am CHOOSING to rest in these things tonight:  knowing that My Daughter is in a perfect eternity, where I will one day join her AND knowing that she lived a wonderfully, happy life here on earth.   

April 10, 2006

This is going to be one of the weirdest and funniest posts ever but... Ellie Kate pooped last night.  She did it all on her own, with no help from Glycerin, enema, suppository or the like.  Her stomach was battling all night last night, causing her quite a bit of pain and discomfort... but after a few hours, she finally got some relief.  Hopefully this is a sign that things are not only moving around in her system but moving through her system.

This may or may not be a news flash but Ellie Kate is a fire cracker.  This morning she decided that she was tired of where the IV was so she pulled it out. This isn't the first time she randomly started pulling at her tubes and lines.  So she spent a good part of this morning being held down by a team of nurses while they found another place for her IV (her foot).  I'm not sure if there is a weight-lifting competition for 4 month olds but EKM would win if there was such a thing.  She is ridiculously strong.  But she is way cute, and by way cute, I mean totally beautiful.

Once again, we'll meet with our handful of doctors and update this page as we get updated.

Here are some prayer suggestions for those with the time:
(1) pray that EKM will continue to have movements, which in turn will eliminate all the barium in her system.
(2) pray that her system will return to its normal motility and function.
(3) pray for her momma, Ryan Elizabeth... this has been a long and grueling ordeal for Ryan.  She is very tired and wants to take EKM home.
(4) pray for Conner, he's tired of not having his parents at home.

 - MFM

April 7, 2006

What we've learned up to this point is that something is wrong with Ellie Kate's small intestine.  The word that is used to describe what is wrong is "ileus"... meaning intestinal obstruction.  We don't know if this is an intermittent obstruction, partial obstruction or (as one doctor has hypothesized) a showing of poor muscle tone related to NKH.  The last possibility is something that I dispute, based on no literature that I've found to support it but he is a doctor and might be smarter than me.... might.

Anyway, the treatment regime is consisting of TPN, reglan, and 1-2 ozs of milk every 3 hours.  We'll try this approach to see if it (A) stimulates her small intestine and (B) the reglan helps the ileus.  If this doesn't work we will probably transport EKM to another facility... possibly back to Houston.

Pray that Ellie Kate's small intestine will start to clear up and function properly again.  We'll keep you updated once we receive updates.

 - MFM

April 5, 2006

Ellie Kate has endured a battery of testing during this hospital stay... and it looks like we may be getting closer to knowing what is causing all the GI problems.  Yesterday, a "lower GI" was performed and with no signs or evidence of an obstruction.  This morning, an "upper GI" was administered.  This test took much longer to perform, for reasons not germane to this post (ask your doctor about the diffrence between and betwixt the two.)

From the upper GI, the preliminary feedback is that something is not right.  This created a melancholy reaction from Ryan and I because we don't want anything to be wrong with EKM.  But, since something is wrong with her, we want to know what it is.

After we get a definitive answer to what it is, we should then learn what treatments and remedies are at our disposal.  Tomorrow has promise.  Promise in that we are one step closer to relieving EKM's pain and discomfort and one step closer to her and her mommy sleeping in beds under my roof and not Integris's roof.

Thank you for the prayers, emails, phone calls, carrier pigeons and the like.  In all seriousness, I enjoy reading this website because of the uplifting nature of your thoughts and prayers.  You are evidence that God is real and working in my life and the lives of my family.

Thank you and Good Night Now.

 - MFM

April 4, 2006

A lot has happened since the past update.  The cliff notes version is that Ellie Kate is and will be undergoing some GastroIntestinal (GI) testing.  They performed a lower GI tonight that the GI specialist will look at in the morning.  The preliminary analysis of it is that she does not have any blockage in her large intestine.  Ellie Kate should undergo an upper GI tomorrow at some point.

The bad news is that she had her first seizure this morning.  We have her in the PICU (our home away from home)... she has not had any since the morning, but she has resummed her myclonic jerks.  They have lessened in intensity and frequency as the sun moved along the sky.  Though she is in the PICU she is stable.  She is not on the ventilator or any other life sustaining device.

Tomorrow we should know more than we know right now so we will update this site as soon as we can.  Thank you for your prayers and offering of support.  Once we stop going 100 mph we will return all the calls and make time for our friends.

 - MFM

April 3, 2006

Well, its becoming routine that whenever we need to take Ellie Kate to the Hospital... its on the weekend.  This past weekend (March 31-April 2) Ellie Kate started throwing up and her stomach became distended.  We later learned that she had "an incredible amount" of air in her intestines creating gas and extreme discomfort.

All that to say, Ellie Kate is back in Baptist Hospital undergoing testing and evaluation.  The good news is that she is not in the PICU and is not critical or life-threatening.  She will undergo some GI tests today.  They have taken away her medicine and food and that has helped the problem.  They will re-introduce her food and medicine slowly to see if she can handle them.  We will post an update when we know more.

The short-version:  EKM is in the hospital with a GI problem and will undergo some testing.

 - MFM