Monthly Archives: December 2008

Matters of Business. Matters of the Heart.

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A memorial service will be held for Baby Jack Alexander on Thursday, January 1st, 2009 in Ames, Iowa. The service will begin at 6:00pm at the meetinghouse of The Church of Jesus Christ of Latter-day Saints located at 2524 Hoover Ave., 50010.

Little Jack’s funeral will be held in Las Vegas, Nevada on Saturday, January 3rd. The service will begin at 1:00pm at the meetinghouse of The Church of Jesus Christ of Latter-day Saints located at 7670 S. Bruce, 89123.

Many people have asked for our home address. For this information, please email me at: elizabethmjohanson@hotmail.com

Thank you all for your continued prayers and outpouring of love. I feel like I should be in an absolute tailspin right now – awaiting a crash.

Instead, angels are attending to us at this time. While I certainly believe we are receiving help from Heavenly angels, I am also constantly reminded of Elder Jeffrey R. Holland’s talk from General Conference October 2008:

“When we speak of those who are instruments in the hand of God, we are reminded that not all angels are from the other side of the veil. Some of them we walk with and talk with—here, now, every day. Some of them reside in our own neighborhoods. Some of them gave birth to us, and in my case, one of them consented to marry me. Indeed heaven never seems closer than when we see the love of God manifested in the kindness and devotion of people so good and so pure that angelic is the only word that comes to mind.”

Thank you for being our angels.

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We Were Gonna Have a Baby

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Throughout this past week, Jack helped us to see that he had completed his mission here on Earth. He accomplished all that he needed to do, and was called home to his Heavenly Father. We are heartbroken, but have the peace and understanding that the Gospel brings.

The impact that little Jack had while on this Earth for a mere matter of weeks was great. He brought countless people to their knees and invoked a spirit of change in so many hearts. He has touched so many lives, and has changed ours for the better.

We will miss and long for our little Jack more than words could possibly describe. We have never had a greater understanding nor appreciation for the plan of salvation. For the Atonement. For the love of our Father for His children. For his willingness to sacrifice His most beloved Son so that we might one day be with Jack: our beloved son.

So…we were gonna have a baby, but we had an angel instead.

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This afternoon, Jack will be taken off of the ECMO machine. There are several reasons:

– each day that passes poses higher risk of bleeding in the brain
– his cannula site (or the place where the tubes enter his body) is leaking more and more each day (meaning blood is oozing out of his neck where the tubes are)
– it just doesn’t seem to be helping him.

This morning they did a “trial off” of ECMO and Jack handled it well. The surgeon will come in this afternoon and remove the cannulas, and Jack will go back to being supported solely by a high frequency ventillator.

We do not know what this means for Jack. The truth is, he could live hours, days, or weeks and then pass on.

OR

He could get better.

We just don’t know.

Pray for Jack.

Baby’s First Christmas

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Thanks to our loving family, so many dear friends, and caring strangers (RMH staff, NICU staff, hospital volunteers, friends of friends, etc.), we were able to have some semblence of an actual Christmas. Megan recieved more gifts than she ever has (and probably more than she ever will again) and Adam and I can’t even begin to show enough gratitude for the many thoughts, prayers, cards, emails, blog messages, and gifts that have been sent our way.

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Given our current circumstances, we were also better able to focus on the birth and life of our Saviour more than ever before. Adam and I cuddled up in our small room here at RMH last night and read Luke 2 and watched “Joy to the World”. Even if we hadn’t been showered with generosity as far as gifts go, it still would have been the most meaningful Christmas we have ever had.

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At Thanksgiving, I thought for sure that if we were still here at Christmas then that would mean that we would know what the future would hold for Jack and that surely to live that long would mean that he would be okay. However, the future is still unclear for our little baby. And unfortunately, we didn’t get the good news about Jack’s echo that we were hoping for. His heart is unchanged, and the pressures are still too high. Right now we are praying and hoping that the ECMO machine will work: soon . Very soon.

Do As I’m Doing

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We have a joke between James and Cynthia (Nicholas’s parents) that Nicholas wants to be just like Jack. He is about a week behind Jack in a couple of ways. He is exactly one week younger then Jack, and he was also put on ECMO one week after Jack. While they have similiar stories, there are also major differences. Nicholas’s little lungs are what is causing his issues, for Jack; it’s his heart. Today was Nicholas’s 14th day on ECMO and Jack’s 20th.

Baby Nicholas

Baby Nicholas

Today Nicholas decided he didn’t want to be a copycat anymore, and he wanted to take the lead. They did an “ECMO off” trial today where they pulled him off of ECMO for a little under an hour. They decided that he was ready to come off completely, so Nicholas is now ECMO free and holding his own. He is still sick, but this is definitely a step forward for Jack’s little neighbor.

We are so happy for the McLaughlin family. What a great day for them! Hopefully little Jack will soon follow his friend’s lead.

Baby Jack

Baby Jack

Jack’s lungs continue to look good, and yesterday’s ultrasound showed no bleeding. Tomorrow they will do another echo of his heart to see if there is any change from last week (5 days ago.) My heart is aching for good great news. We need the heart’s pressures to be down, and the heart’s walls to be thinning. We may not hear the results until Thursday.

We are not opposed to a Christmas miracle.

Megan

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I have been keeping this blog for about a year and a half now. It wasn’t so public until sweet baby Jack was born, and then it became the main place for keeping so many friends, family and caring strangers updated on his status. It used to be a place where I would post updates about Megan for family members and a few friends. Interestingly enough, I have always been a pretty private person (I told my own mom that I was planning on marrying Adam in an email…she wasn’t too happy about that.) I enjoyed keeping a blog because it was a way of opening up to others in a less personal sort of way; and that was appealing to me. Since then, I can’t help but wonder if there was another reason why I’ve kept with it…probably because the support it has provided at this time is invaluable, and providing people with updates has ensured that we are keeping a good record of what is going on.

Anyway, today I found myself wanting to do an update on little Megan. I sure am crazy about that little girl. What a bright spot she is in our life. My heart aches for her having to be stuck either at the Ronald McDonald House or the hospital all day, every day, but she is such a trooper. Adam and I have got a routine down that seems to work well for all four of us. I still ache for her in that I wish she could be enjoying the life she knew 5 weeks ago, but she seems to be adjusting well.

Megan makes sure that we laugh and smile daily. She also makes sure we get plenty of hugs and kisses. Sure, keeping up with her is physically draining. Sure, it is hard to balance time with her and time with her brother (without feeling like neglecting either one). But I can’t imagine surviving this experience without her. She is so fun and cute and sweet and funny and smart and silly and kind…and on and on and on!!!

Here is a video of Megan singing her new favorite song.

To see more videos of what Megan has been up to while we have been here, click here.

(No new news about Baby Jack. It’s been an “uneventful” weekend. Oh wait, one update: he’s so cute…in case you forgot.)

Keeping Busy

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We knew that at some point they would have to change out Jack’s ECMO machine and switch it with another. Thursday morning we got the call that they would be doing it that day. The last time they had to make a change on his circuit (there was a clot so they had to change what is called the “bladder”) he didn’t tolerate it well. And then there was the “accident” with that same part of the circuit coming undone later that day…which he tolerated EVEN WORSE. This time, however, they were optimistic that he would handle it very well. So Adam, Megan, and I set up camp in the lobby to wait for the “one minute or less” procedure. Forty five minutes later, Adam went in to see if they were done, and they hadn’t started yet…so then fifteen minutes later they came out and told us he did great and it went “super slick”.

Whew.

Jack’s best friend Nicholas had to undergo the same thing a few hours later. He also handled it like a champ.

That night after getting Megan into bed, I went back to the hospital by myself. I learned that one of the parts on the new ECMO machine had a CRACK in it – and was “patched up” but still leaking “a little”. I talked to the nurse about it and she said “they” were not “concerned”. I said, “oh, okay” and promptly hunted down Jack’s doctor. We had a long talk about it: including some boldness on my part (which is uncharacteristic), but he reassured me that it wasn’t a big deal and they would watch it but did not anticipate any problems. I reminded him about the incident with the tubing coming undone, and he recognized my concern, but then reassured me. I left feeling just okay about it.

We called later that night and found out that they ended up changing the part within an hour after I had left.

I still haven’t had a chance to talk to anyone who was there at the time (the doctor that night is gone until Christmas Eve) so I am not sure of the motivation or series of events. They said it took 15 seconds to change and Jack handled it just fine. We do wish they would have called to tell us. Some nurses get that we want phone calls, some don’t.

Then last night we got a call saying that his neck was “leaking” where the tubing for the ECMO machine enters his body. As of this morning, it was all fixed (through platelets/clotting agents and gauze). That small little hiccup didn’t cause any problems.

X-rays of Jack’s lungs show that they are doing great. He is even doing some breathing on his own.

His heart is about the same. Improvement is ideal, but stability is okay at this point.

He is still seizing, but they are pretty sure that the seizures are causing him no harm.

Another ultrasound of the head shows no bleeding.

So we are still just waiting and waiting. I think that’s the story of our life at this point. That’s okay with us. We’ve got time. Plenty of time.

I’ve mentioned before that Jack doesn’t like to follow any of the “textbook” issues as far as what he’s going through and that one doctor even called him a “head scratcher”. Today a nurse mentioned to me that several things about Jack’s ECMO experience have been “unconventional” and another nurse AND one of the doctors said something to Adam today about Jack throwing constant curveballs and throwing everyone for a loop. I am pretty sure that Adam and I are plain-old-regular-boring people, so I am not sure why our little boy feels like he needs to stir up things so much.

We sure love him – despite his knack for getting into trouble!