Monday, September 28, 2015

Mountains and Airplanes

     I love to travel and I especially love when I get to travel internationally. Initially, I struggled with long international flights. Sitting in a chair for hours did not align well with my tendency for hyperactivity.  In order to continue my love for international travel, I had to learn how to physically and mentally power down for the 10-20 hour ride. I also had to learn to trust the plane and the pilot when turbulence hit or we encountered an unexpected delay.  Now when I travel internationally, I lay down all of my expectations for arrival and departure times, I lay down my food preferences, I lay down my need to be in control, and I just power down for the experience because I know it is a necessary means to an end.

     Last summer when Maggie spent months in the hospital, our experience felt like we were climbing a mountain and through it all I felt like God was guiding me through the terrain. This experience has felt much more like an international flight with God as the pilot. The timeline is predicted but not guaranteed.  I have no control over the turbulence and while my preferences are considered, at the end of the day, they hold very little weight.  

     I think the hardest part is that last summer I felt like God was right beside me and guiding me through every turn.  This year, I truly feel like He is in the cockpit.  He comes over the speaker every now and then to reassure me or give me directions but what He is expecting, through it all, is that I trust Him.  I should have seen this coming.  As I was getting ready to board the plane of this experience, I felt like God clearly said to my heart, "I've got this".  Those are preparatory words and they are words that I have had to cling to when this plane has started to shake or the course on my screen did not look like the one I had charted in my head. 

     I don't know why God sometimes holds our hand through every step and other times calls us to trust Him as he leads from the front of the plane.  I can say the experience has been lonelier spiritually but I know that it is all for a purpose and is necessary for what He wants to teach me through this.  

     Maggie appears to be improving.  I commented during rounds today on how much better her heart rate was and I was glad we were passed that concern and the doc gave me the "not yet" look.  Her drainage is slowing which is fantastic but I got another "not yet" look when I asked about pulling her drains.  We are ready to land this plane.  This now feels like the end of the flight when they turn the lights back on, you need to go to the bathroom but you don't want to step past the guy sleeping next to you, you start imagining all that waits for you when you land, you stare anxiously out the window, and your heart rate starts to rise as you count down the final minutes.  Yep, that is pretty much where I am and I am praying the pilot doesn't tell me that we need to circle for a while before we lower the flaps.

You can pray for steady rhythms, decreased drainage, and peace.

Just for fun, here are some other similarities between international flights and long hospital stays:
1.  You live from meal to meal just to break up the monotony.
2. You catch up on every movie or TV show you didn't have time to see the year before. 
3. You long for a breath of fresh, moist air again. 
4. You can go hours longer than you ever thought imaginable without going to the bathroom.
5.  You have a tendency to lose your sense of time.  
6. If you are with a child, the ultimate accomplishment is when they fall asleep.
7. It is a great place to people watch and make up scenarios in your head as to where they came from.

Thanks for praying and hanging in there with us. 

Saturday, September 19, 2015

11 Days After the Fontan

Maggie's Fontan was 11 days ago and we are not exactly where we hoped to be but we are were they prepared us to be.  When I asked her surgeon how long we would be in the hospital, he said to prepare for 3 weeks.  Of course, I asked the other heart mamas too and the range was 10 days to 3 months.  So I set my hopes on 10 days and prepared my calendar for 3 months.

It looked like we were moving toward the 10 day goal until about 4 days ago.  Maggie's chest x-ray took a dramatic turn for the worse and her drainage began to increase and turn cloudy.  That cloudiness indicates that her lymph system is draining into her lungs and that has required more aggressive treatment.  She also has a small amount of fluid around her heart that requires extra measures.  So as I was told today, we might be here a while.

Mornings are definitely the toughest.  After being woken up multiple times in the night for assessment, Maggie starts every morning with a 4:30 am chest x-ray that is followed by IV meds, blood work, rounds, dressing changes, and tube drainage.  She then gets PT and respiratory therapy.  By 11:00 she is pretty traumatized and exhausted.  I keep her up until lunch and then we all crash for a few hours.

It breaks my heart to hear her cry out "I want to be all better" and "why are you hurting me".  Sometimes I want to scoop her up and run out and then other days, like today, I just sit there and cry with her.  I hate to see her suffer and I have to remind myself that, in the end, this is for her good.

So when we aren't busy doing hospital stuff, we try and make her time as tolerable as possible.  We dress up like a princess, ride in a car that she has attached herself to, have endless tea parties, and play in the child life room.  Her smiles are what make all of this still bearable.

One thing that I am incredibly thankful for is that she really does have moments, even hours some days, when she looks pretty good.  She plays, laughs, makes demands, and bosses everyone around just like home.  I realize that it could be a lot worse and she could be laying in a bed all day unresponsive.  So I am thankful.

Our big prayers are for the drainage to clear up, for her to get off of her meds, and for her circulatory system to function like it is supposed to.  You can also pray for her mental health.  I fear how traumatized she will be from all of this.  Please pray she forgets and heals emotionally too.

Thank you for every prayer, comment, message, visit, and for just loving our girl.  

Saturday, September 12, 2015

Moving in the Right Direction

I have heard people say, when considering adoption, that they just aren't sure they could love an adopted child as much as they love their biological one.  Well, I can tell you from personal experience, that you do.  You love that adopted child with every fiber of your being and when you watch them sleep in their hospital bed, that love brings you to tears.

Sometimes this journey is hard, but there is not a second that passes when Maggie is not worth the sacrifices we have made to be here.  I am reminded all throughout the day how blessed we are to be her parents and my love for her leaves me again today in a state of thankfulness.

Here is an update from yesterday:
  • Maggie was more alert today and did not have any major seizure episodes.  She had a few moments where she would appear to lose focus and freeze but I cannot say with certainty that those were more seizures.  The attending ICU physician ordered a CT and an EEG today.  The CT thankfully came back fine and the EEG had some irregularities but the physician felt they could be explained by her surgery and presence in the ICU.  The Neuro team did increase her seizure medication dose and I feel good about that solution. 
  • Maggie's lungs are continuing to drain.  They cannot remove her chest tubes until the drainage is complete.  I hear that the chest tubes are painful and their removal will make her feel much better.  So we can pray for that to be soon.  
  • We are expecting to be moved to the floor tomorrow.  This will be a great step in the right direction.  
  • We were supposed to get her up walking yestoday but she was unable to even sit on the side of the bed.  You can pray for her to regain strength. 
  • We had a couple sweet moments where she sat in my lap or let me paint her toe nails.  We have not seen any smiles and she doesn't say much.  I am looking forward to more steps in the right direction there.  

Thursday, September 10, 2015

The Last 2 Days

I am once again playing catch up here.  Last night I was too tired to form a complete thought but tonight my wakefulness has been aided by a dear friend who shared her Netflix with me.  So with 3 episodes of Madam Secretary down, I am now still wide awake at 1:00 am and able to give you an update on Maggie Mei. :)

I had 3 fears going into surgery yesterday.  The first was that she would not survive.  We shared a US Consulate appointment with a child like Maggie who did not survive her complete Fontan so of course that possibility was very real to me.  My second fear was that she would be deprived of oxygen to the point that it would further the brain damage that occurred last summer.  I followed the story of another sweet child this summer who went into cardiac arrest following his Fontan and was declared brain dead from a lack of oxygen to those tissues.  So yes, once again, a very real fear.  My final fear was that her lungs would not accept the new circulation and she would not be able to come off of bypass or the ventilator.

I am happy to report that none of these were Maggie's story.  In fact, she came off of bypass and the ventilator without any difficulty and has been showing her spunky personality again since she woke up.  I recognize that this success was not guaranteed to us and thus is a gift.  Why the Lord has chosen to grant her another set of days, I don't know, but once again I am thankful.

Transition to today.  So, yes,  today has been full of ups and downs.  The positives are that they removed her catheter, her arterial line, and her supportive oxygen.  They took her off of the scheduled pain pump and she is not receiving pain meds on demand.  This is all good but not without its challenges.

Here is what you can pray over for Friday and how ever long it takes to resolve these:

1.  Maggie is vomiting which is causing increased discomfort and dehydration.  They have to regulate carefully how much fluid they give her because of the fluid still on her lungs.  The vomiting makes that even more challenging.  Pray this stops.  She also has not had a wet diaper since removing her catheter this morning so there are talks of putting it back in.  Pray she makes a big wet diaper.

2. Her lungs are still draining blood.  This needs to stop before her chest tubes can be removed.  Tonight her oxygen sats were dipping back to pre-op levels and she had to be put back on oxygen.

3. It appeared that she was having alternating periods of lethargy and wakefulness today.  It was puzzling until tonight when I witnessed Maggie have an Absence Seizure during a pain episode.  Maggie had these seizures last summer and they were always followed by moments of deep sleep.  I notified the nurse who notified the team and she came back and said, "they think it is just the dehydration."  Well, they didn't see it and they don't know my child like I do so I will give them the grace to be wrong.   Tomorrow I need these episodes to end completely or for them to call in a Neurology consult.  If they don't, I may just have to call one in myself.   I really think all she would need is to be have her seizure med adjusted from the weaning off dose she is currently on to a weight appropriate dose due to the change in status.  You can pray that I don't have to go all crazy mama bear on them.

4.  Finally, pray for sweet time.  I held her briefly today but she was uncomfortable and wanted to return to bed.  Pray for sweet moments of comforting and bonding.

Now that I have discovered Netflix and Madam Secretary, I should be able to stay awake long enough to update you again tomorrow or the next day.  Thank you for your prayers.  They mean everything to us.

Monday, August 31, 2015

Praying For Maggie

I have some amazing, God fearing, encouraging, selfless friends.  They bless me far more than I am able to bless them in return.  One in particular sent me the most touching prayer that I have ever read for Maggie.  I shared it with Trent and we were both moved to tears.  I want to share it with you in case you are praying for my girl as we count down the last few days before her procedure.

 If you are praying for Maggie this week, you can pray this way:

"I have decided to pray, starting on the 1st, for a decade of Maggie's life per day. That will cover 90 years. That's what I'm going to be asking;). 9 decades.

I will pray the first decade that she will meet Him and know how adored she is.

On the 2nd I will pray that in her teenage years she will be the ONE kid who thinks that this teenager thing is easier than being a kid. That she will have time to reflect on the challenges of her first decade and root herself in His provision over her life.

The 3rd my prayer will be that she find love in so many ways that it is impossible for her to ever remember the scars of being orphaned and the loneliness that was. That His love be so overwhelming and that she know the love of many people, perhaps even the one she will spend the rest of her life with.

The 4th will bring prayers for her 30s (4th decade) and I will pray that her life be a blessing to all she interacts with. That they will see and know how big her God is and he miracles he performed in her life.

On the 5th I will pray that her children (God willing) and those she is ministering to will be open to and soaking up all the wisdom she will have to share. That her reach because of Him will have no boundaries.

On the 6th I will be praying for a sweet time of reflection over the life she has led so far. That Miss Maggie, in her 50s, will be able to have seen and been a part of so many miracles that the amazing miracles granted in her youth are just a small part of her story.

On the 7th I will pray for comfort as Maggie grows in her ministry and age. That she be reminded of the spirit of power that has been granted her and instead of slowing down, she will just be getting started.

The 8th will bring prayers for a fearless Maggie who is now in her 70s. That her grandchildren, children, and spiritual children will all rise up and call her blessed and that she will get the privilege of seeing that and knowing she did His work and they will continue it long after she is gone.

The 9th. The day. I will cover Maggie in prayer. For safety. For 9 decades of life. But on the 9th I will also be praying for her homecoming. We all want for her to be an old lady when she enters heaven, and I will pray on that day for the moment she sees the eyes of Jesus and hears "well done".

I am asking for each decade of her life I pray over to be 10 years. A decade as we know it. If it is or is not, my prayers are the same. If she enters heaven early and this decades were not even a year each or if she goes home as a 90 year old woman, I want you to know I'm covering each interval of her life in prayer.

Love you so. Praying peace peace peace for you, Trent, and the other wild ones;)

Tuesday, August 18, 2015

Always Pursuing. Always Restoring

I have several personality flaws.  I know, great opening for a blog.  :)  But God is reminding me of something through one of them right now that I want to share with you.  Confession time - I have a crazy-unhealthy ability to completely emotionally separate from people whom I perceive don't like me.  In other words, if I believe that you don't want to be around me or don't approve of me, I can emotionally detach from you darn near immediately.  I am confident that a counselor somewhere would say that it came from experiences in my childhood, but that is not where I am going with this.  

I have found, and I bet you have too, that we expect God to relate to us like we relate to others.  For years, I have harbored this secret fear that if I strayed away from God, He will wash his hands of me and be done with me too.  But I have been reminded over the last 24 hours that He is not like that at all.  

He is a God who is in constant pursuit of us and when we stray from Him, He pursues us even harder.  I seriously have zero frame of reference for that, so it blows my mind to think about.  

Yesterday, my Facebook home page blew up with friends sharing Kathie Lee Gifford's tribute to her late husband, Frank Gifford.  If you haven't seen it, you should watch it HERE.  In it Kathie says, "He strayed from his faith on occasion but his faith never left him."   I loved that.  She didn't cover up that Frank was, at times, a flawed man but she instead pointed to a God who was continually drawing Frank back to Himself with complete grace and forgiveness.  

Then today, I opened my She Reads Truth email. Of course the topic was how God pursued the people of Babylon.  The writer says it perfectly with, "Jeremiah revealed the promise of the God who pursues, engages and rescues— the God who doesn’t simply replace what sin and its consequences burn away, but who restores the very heart of the sinner. As the people of Israel sat weeping by the waters of Babylon as they remembered their homeland (Psalm 137:1), they were not forgotten by their God.  They were called back and gathered up."
You can read the entire post HERE.

Friends, I want to encourage you with the same truth that I have been encouraged with this week.  We don't have a flawed relationship with a God who is capable of walking away at any moment.  No.  We serve a God who is continually pursuing us.  That, my friends, is blow-your-mind amazing.

Saturday, August 15, 2015

How is She, How are We, and What is Next

I haven't posted an update on Maggie's condition in a while and with surgery around the corner, I thought this might be a good time to let you know where we are.
(pictures courtesy of our trip to the nail salon today)

How is She?
Maggie's speech has come a long way over the last 3 months.  She is talking in sentences and doing a great job at expressing herself.  It is just one more way her little personality bursts through.
She still has weakness in her left arm and leg.  Some days she does better than others but we really see it when she is tired.  I think there is a good chance we will resume therapy after her surgery.

After several follow up tests, they have determined that she has moderate hearing loss in her left ear.  Basically she can only hear voices on the left that are louder, like a yell.  They said this could improve or it could get worse.  It seems reasonable to me to expect it to improve as her brain grows and remapping occurs.  We love her ENT and she recommends not doing anything about it until she is school age. I am good with that.

Maggie still suffers from a single ventricle heart, a high risk for strokes, and low oxygen saturations because of the mixing of oxygenated and deoxygenated blood that occurs in her heart.  She did not qualify for the bi-ventricular repair that we were hoping she would be a candidate for.

What is Next?
Children with Maggie's condition usually have a procedure in the first few days of life, followed by a 2nd procedure at age 1,  and a third one a few years later.  Maggie has not had any of those procedures which is most likely why she suffered her strokes last summer.  While it is rare for a child not to have had her single ventricle addressed and still be alive, Maggie's cardiologist said he has seen this a few other times when the heart went undiagnosed and the child eventually suffered a life ending stroke.  His recommendation is that in order to lower her risk for another stroke, her heart needs to "repaired".

This is hard for us because she looks really good, so taking a stable child into a major heart surgery feels crazy, but leaving her at a risk for a potential life ending stroke feels wrong too.  Trent and I have decided to follow the advice of her surgeon but do not move forward easily.  On September 9th, Maggie will have the staged procedure all at once.  It called the Fontan and we know of other children who have had it and are doing well.  You can read about the procedure HERE.

I find myself reading about every case I can find online.  Some leave me really encouraged and others leave me terrified.  It appears the survival rate for the first five years is around 70%.  The kids who don't do well either suffer complication right after surgery or eventually acquire something called Protein Losing Enteropathy.  I tell you this so you will know how to pray for Maggie and what to pray against.

We have about 3 1/2 weeks until Maggie's surgery.  This week I will start working less so I can spend as much time as possible with her.  You can pray that time is sweet.

How are We?
We are thankful for a healthy summer that was loaded with good family memories.  My goal was to write over the memories of last summer with new memories of togetherness and I feel like we did that.

We are anxious about what September holds and we are also ready to get her to a place where we can move forward and enjoy life together.

Please pray for Maggie that God would prepare the surgeons and her for what is to come.  Pray for peace for all of us and pray for healing.  The last several nights I have asked God for 50 more years with her.  Please feel free to ask for the same.  And if you want to pray for our family as a whole, you can pray that we cherish these next 3 weeks.  Pray we slow down to have tea parties and paint toe nails.  Pray we don't rush through the bedtime routine but instead cherish every moment, because they are not guaranteed to us tomorrow.