Active updates following Oct. 2019 surgery

October 29, 2019. 10:30 PM

"I did want to take a moment or three to give a quick update as to what surgery Emri is actually facing in the morning to get those powerful prayers rolling. We came here thinking that Emri would be getting the loose screw fixed on her upper left spinal rod, her tendons released behind both knees, and perhaps some guided growth plates placed around her knees to allow her legs to straighten as she grows. After seeing Sponseller (surgeon man), we are now entirely replacing her spinal rods with new, bigger rods as well as proceeding with the tendon release and guided growth plates. I really can't expound on much more at the moment because my emotions really can't handle it, but needless to say, this surgery will be much longer, bigger and more painful than the one we thought we would be having. Please pray. Specific requests are: That putting Emri to sleep before surgery is as non-tramatic as possible, that surgery goes smoothly, and that post-op complications stay far, far away. Also for Emri's little heart---she's much older than last surgery and understands things that she hasn't before. We discussed some stories in the Bible tonight that really highlight the sovereignty of God and Emri seems to grasp this concept well. I just hope in the next few days/weeks that Brett, Emri, and I can keep our gaze upon Christ and not lose sight of the truth that even in the painful, darkest times, God continues to work for our good....and that through these trials we become more and more like him.
Also, PRAISE GOD with us that Emri received an amazing stable heart report from the Dietz-man himself today!!
If you follow Emri's story and are one of her many wonderful prayer warriors, thank you...and join us as we lift our precious girl up to our Lord and Savior through this next surgery. We will try to update Facebook and the blog as we know things." 

Oct. 30, 7:30 AM

"Emri is asleep. The "silly" meds that we gave her actually made her very weepy this time. She cried a lot, seemed afraid, and repeatedly told me how much she loved me. I wish it was a happier story, but it was just really, really hard. Please help us pray. I will update as I know things."

Oct. 30, 1:00 PM

"Surgeon just came out to talk with us--everything went well- ALL praise and glory be to God!!! She didn't need blood, but we will be watching closely to see if she needs it. There were a few spinal fluid leaks, but they were patched in the OR. This does mean that Emri will need to lay flat for a while to prevent any further leaking. Now we wait to see her."

Oct. 30, 3:00 PM

"Emri is resting well. When we first came in she was in a good amount of pain (I would imagine that's a vast understatement). Seeing your kid come out of major surgery is a whole new level of torture...I think I've said that before. She told us, slowly, with tears and slurred speech that she missed us. She put in THAT much effort pushing those words out just to let us know that she missed us. I missed you MORE baby girl!!!! After getting her next round of pain meds she fell back to sleep until an IV blew which was extremely painful. She is resting now again and I have strict orders from her NOT to move from her bedside which I wouldn't imagine doing anyway. Rest and heal sweet girl. Immensely grateful to our Lord for sustaining Emri's body through this surgery. This girl is made of steel, literally AND figuratively speaking."

Oct. 31, 3:30 AM

"The pain has been unreal. Please pray specifically for pain relief."

Oct. 31, 9:30 AM

"The Lord has granted Emri some relief. SO thankful. It was a very long night. This girl you guys, she is unbelievable. Every time she called me to help her, she was apologetic about asking me to get up. As many times as I reassured her and told her how happy I was to be there any time she needed anything, she still let me know how sorry she was that I wasn't sleeping. I have been sponge feeding her water and apple juice and she thanks me every time. Despite the massive amount of pain and misery she has been experiencing, she is thinking about Brett and I not getting sleep. We have better control of her pain, and will be increasing the degree of her bed at 1 o'clock today. Please pray for completely resolved spinal fluid leaking and continued success in managing the pain."

Oct. 31, 11:30 PM

"Prayers please. Emri is experiencing a high heart rate maybe due to a breathing treatment she just received."

Nov. 1, 2:00 AM

"Emri is slowwwwwwwly stabalizing...doing things in her own time frame. Thank you Jesus."

Nov. 1, 1:30 PM

"Sincerest apologies to all of you left wondering how things are going over here! Our Halloween was the scariest one yet. Emri responded to an Albuterol treatment by going tachycardic on us last night for a longggggg time. The episode began around midnight and her heart rate and blood pressures were not within normal range until 7-8 o'clock this morning. A little concerning as Emri's heart is already plenty compromised by severe aortic root dilation, leaky valves, and so on and so forth. Consequently, I went "tachycardic" and did not settle in to sleep until I knew Emri was stable. Emri's pain has been a whole other issue altogether. Attempting to get on top of the pain has been challenging due to a number of factors that I won't attempt to explain. The pain episodes have been....there just aren't words. Thankfully after talking with other marfan mom's and a little more experimenting with drugs, we feel like we may have a little more control over the pain and Emri seems to be having episodes less frequently. Pray that these meds have minimal side effects, especially on her GI system since we've had major issues with that in the past. We saw PT for the first time this morning and as of right now she is recommending an inpatient PT situation for when Emri gets out of the hospital. Her whole body has changed so much---curve of her back, angle of her knees....she will basically be learning to walk all over again with all the changes. This recommendation caught us by surprise, but we completely understand and appreciate the reasoning behind it. We of course want the very best for Emri. As we move forward we will have a clearer picture of where we will need to be in regards to staying inpatient PT---we will need to be here until Emri is able to travel comfortably, but ideally desire to be closer to home. Pray for us, that we can make the wisest decisions with all the complicated factors involved. Pray for Emri, as she battles this all with more courage and strength than I knew was possible. Pray for my babies back home and for those caring for them. Pray for Brett and I as we watch our little warrior fight through things that seem much too big. Pray for all of us, that we can truly glorify our Lord and shine his light as we make our way through these rough seas.

"When you pass through the waters, I will be with you;
and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
and the flame shall not consume you."

Oh thank you Lord for these words to cling to in times such as these."

Nov. 2, 8:00 AM

"We have been having a lot of trouble with nausea and vomiting this morning. PLEASE pray that this is resolved quickly."

Nov. 2, 6:30 PM

"We've had a day full of ups and downs. Emri began the day with pretty horrible nausea and vomiting, so we began the nausea meds, slowed down the tube feeds that we had started last night and changed the feeds to just pedialyte. This seemed to help and we enjoyed a vomit free afternoon. (Answered prayers!) We got Emri sitting in my lap today which was a giant step forward but it was so, so painful for her. She managed to make it through 20 minutes of sitting. Emri watched a movie today and played for a while with her new magnetic dress up Ariel doll (thank you Barbara Lerman!!!). Seeing Emri actually keep her eyes open to watch a movie and have the desire to play was just magnificent. We are ending the day with a pretty severe headache, but all in all I feel like we took some big steps forward today! We were also SO EXCITED that God allowed us time with Elizebeth Miller this weekend!!! When we told Emri she was coming yesterday, she actually smiled completely unprompted for the first time since surgery! Elizebeth spoiled Emri with all sorts of fun things that I know will be thoroughly enjoyed when she is feeling a little better.

Please continue to be in prayer for our sweet, sweet girl. Pray for no more headache in the morning, for continued wisdom and ability in managing the pain, and for some smooth days of healing and progress."

Nov. 3, 7:30 PM

"We're doin' ok.

Specific prayers:
-NO MORE HEADACHES (we are FINALLY feeling a little relief tonight)
-Less and less severe pain
-Stable 02 levels (we had a silly bout of low 02 this afternoon)
-Success in keeping feeds down where they belong (only 3 upchucks today)

There was talk of us moving to "the floor" today, but alas, Emri took a few steps back with her oxygen levels after a vomiting episode. We also sent back a nasal swab to test for any viruses because her nose is stuffy...so also pray for no virus! Thank you all. We sure are worn and weary, but grateful for how the Lord provides enough grace for each new day."

Nov. 4, 11:45 AM

"Oh, what I wouldn't give to be taking pictures like these this morning! Let's get these sisters back together, where they belong!!

Emri had a pretty horrific night of pain as we are attempting to wean her off any opioids. After doing everything possible to make her more comfortable (heat packs, repositioning, all the other meds, etc...) we finally gave her some of the "good stuff" at 4AM and we all got a little sleep. This morning her head pain is at a 2.5 and her back pain ranges from 3.5-5.5, which is much better than it was all night. Also, she always rates her pain in 1/2's and the nurses think it's hilarious. I mentioned that as we work on fractions in school, she'll probably be rating her pain using more complex fractions soon...7 and 5/6ths, 3 and 8/9ths... Despite her pain, she still keeps us smiling. She did vomit this morning, but only once so far which is improvement from the last two mornings. OT came in and made some comfier, more Emri-specific knee braces for her that we plan to decorate with unicorns later.

Prayers:
-NO MORE HEADACHES
-pain that's able to be controlled without opioids
-feeds tolerated

THANK YOU!!!"

Nov. 5, 12:45 AM

"Thank you A's, for helping my sweet girl heal."

Nov. 5, 10:00 AM

"Brett just asked Emri how she was feeling this morning. Her answer:

"I'm thinking about my next Lego design for when I get home."

Thank the LORD."

Nov. 5, 3:45 PM

"A few things.

1st, OH MY WORD LOOK AT MY BABIES SMILING AT EACH OTHER. My aching heart sure appreciated the few moments my 4 dears we're all "together" this morning.

2nd. The collage posted below is of our tremendously giant-hearted gift of a pulmonologist coming to visit Emri in the PICU yesterday. She encouraged Brett and I when we needed it the most, and held hands with Emri for a good 15 minutes telling her how beautiful, courageous and strong she was. She reviewed everything that Emri has been through since surgery, answered a billion questions we had, and inspired us to keep on keeping on. She left telling us that she was indeed "hovering" over Emri's charts to make sure we were getting well taken care of. Goodness gracious, what a team we have here.

3rd. We are on the floor. We were moved last night. Emri got blood, and has been receiving IV nutrition since last night until we can catch up on feeds.

4thly. Emri has a pnuemothorax. 1st one ever. Air is leaking out of that silly left lung. This doesn't change how we are treating her at the moment, but we are PRAYING it resolves on its own and we do not have to take big steps backwards by placing a chest tube.

Onward."

Nov. 6, 1:45 PM

"Urgent prayers please. Emri's pnuemothorax is now much bigger and it's taking a lot more supplimental 02 to keep her up. We are waiting to hear if they are going to place a chest tube."

Nov. 6, 3:00 PM

"Headed to the PICU to place a chest tube."

Nov. 6, 7:30 PM

"It's done. She's in pain. We are all very sad. We saw "Emri" come back this morning, and just like that, she's back inside herself, just trying to get through the pain. She's been asking us to pray, so I'll keep asking you all to pray too. Pray us through this please. "

Nov. 7, 12:00 PM

""Be still and know that I am God."

⬆️The⬆️phrase that God has imprinted in my mind and heart in the last 24 hours. Be still. Know that HE is God. We don't have to question WHY. We don't. He promises that he is working for our good, that these trials will grow us, that we only grow to be more like our creator through these times of torment, that his grace IS sufficient.

"My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me."

If I do ask why, which I do, I am quickly reminded of all these truths. If I do get angry, which I do, the gracious Lord calls me back, through whatever means he chooses, and reminds me that he is sovereign, faithful, gracious, merciful, loving and that what he wills IS ALWAYS best.

A couple nights ago, while I was loosing "it", I asked Brett to just talk truth to me to help me transition my thoughts to a more God-glorifying place. He asked me a simple question... "Do you know anyone who longs for heaven more than Emri???" No. I don't. Suffering will do that to you---it will swiftly turn your gaze from horizontal to vertical, and cause you to long for the day this sin-filled, suffering-saturated world will be fully restored and pain will cease. If you need just ONE answer for why we must suffer, cling to this: without suffering, how are we able to cease trusting in ourselves and fully surrender ourselves to our sovereign Lord? Have you been in that place?? Where you have NOTHING left but to give it all to God???

"Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.”

Without suffering, how are we to experience the deep fullness of joy and true contentment that the Lord has to offer in the times where suffering is absent??

"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong."

When I am weak, then I am strong. Just look at Emri. Physically??? The picture of weakness. Spiritually/mentally/emotionally??? The definition of strength.

These are just some morning ponderings.

We are making it through. The cries to our Father have been heard. He has answered with some sweet relief for Emri. She slept relatively well and is now semi-comfortably watching a movie as we wait to see how her lung looks on x-ray. Pain meds have been upped, but this is expected as a chest tube is quite painful.

Thank you for loving us/praying us through the night. We have read every message, text and comment and are truly, truly grateful. ♥️

Also, Eiley says "hi"."

Nov. 8, 10:30 AM

"Emri's chest x-ray looked "beautiful" this morning. We are obviously very happy about this, but Emri is in so much pain from the chest tube and is very afraid to have it taken out, which will be happening any time now. Daddy and Emri have been praying together for a smooth tube removal and for Emri's fears to be calmed. Join us?"

Nov. 8, 12:00 PM

"Just kidding! Change of plans. Radiology team thinks they see the teeniest tiniest amount of air leaking yet, so we wait another day to remove the tube. Emri is relieved to put it off, but sad that this means another day of enduring the pain that comes with the tube. It is much more difficult to encourage Emri to sit up and move around with this additional pain, but it is so necessary for Emri to keep moving in order to facilitate her healing. This also means another day in the PICU which is a bummer for a number of reasons, the primary reason being that Brett and I can't shower for yet another day....so now Emri also must also endure having gross parents."

Nov. 9, 11:00 AM

"Alrighty guys... chest tube is finally coming out in a few minutes. Whatever you were praying for Emri yesterday morning, let's start those prayers back up again! She's very nervous. "

Nov. 9, 12:00 PM

"Chest tube free and the sweetest smile you ever did see. Thank you Lord."

Nov. 9, 1:00 PM

"YOU GUYS---Brett got back from the Ronald McDonald house with LOADS of cards and gifts. What a loved/spoiled little girl we have!!! THANK YOU for making my sweet girl (and her parents) feel so supported and adored. Today has brought so much relief, joy, and hope that we can get outta here soon! Praising the Lord for this new day."

Nov. 9, 3:15 PM

"Oh, the places we've been with you baby girl! Just over here, feeling emotional and stuff."

Nov. 10, 10:00 AM

"Another pnuemothorax. Pray."

Nov. 10, 2:45 PM

"New chest tube going in a couple of hours. That also means a new IV before the procedure."

Nov. 10, 8:30 PM

""I lift up my eyes to the hills.

From where does my help come?
My help comes from the Lord,
who made heaven and earth."

Only place my eyes can go right now---straight to the source of help.

Feeling weak, sad and...sad tonight.

Emri made it through the procedure, but was calling for Brett and I the whole time which is so heartbreaking. She is now distracting herself with a movie and waiting for when the next set of pain meds can be given.

Oh Lord, may the morning bring so much healing and new strength."

Nov. 11, 10:45 AM

"Mornin'. Emri is doing ok, but that DARN chest tube is just SO painful. I actually was bedside with Emri when that left lung decided to re-inflate itself and it was a terrifying experience for both Emri and I. The doc was with us and assured us both that she was ok, but goodness gracious it was scary. X-ray looks better...tube is doing its job.

We are so grateful to have had Uncle Scott Amanda Van Andel here with us this weekend! He's been a great distraction for Emri, Brett and I and worked so hard to brighten Emri's spirits throughout the trauma of this weekend. Thank you Uncle Scott for spending the whole weekend with us over here!!! Also, it's funny that Facebook is tagging Kyle instead of Scott, and apparently I can't remove it. Facebook is pretty confident we have the wrong brother here."

Nov. 12, 11:00 AM

"Pain. Theme of the hour(s). Pray for less pain. Yesterday was a day full of welcome distractions. We were blessed with a surprise visit from Maureen Murphy and Maggie Murphy. Not only did they SPOIL Emri with gifts, but Maggie and Emri played with dress up frozen dolls for a good 30 minutes before they had to head to their own appointments. We also had the privilege of meeting Millie the therapy dog. What I wouldn't give to have dogs (and rabbits, and maybe a cow) in this room 24/7. They just lift EVERYONES spirits and bring so much joy to my sweet girl. After Millie's visit, miss Ellie Spencer herself (she's famous if you didn't already know) came to visit Emri with her mom, Becky Spencer (also bearing gifts!). It was a joy to see the two girls together again, but also heartbreaking because Emri was so sad she wasn't feeling better to fully enjoy her time with Ellie. She has been begging to see Ellie since our visit with her last summer, and now when she receives that special opportunity, she is fighting through massive amounts of pain and fatigue. We decided there WILL be a day when these two girls can see each other without either one of them being in a PICU room!! What a day that will be❤️. We do get to see Ellie again later today, so if you could all pray for Emri's pain to be more controlled for this visit, that would be wonderful.

Emri's x-ray looked good this morning, no more super visible pockets of air around her lung. So we move forward slowly and carefully, praying for that lung to remain stable as we clamp the chest tube and wait for the next x-ray tomorrow morning.
We are struggling with how exactly we are to proceed in this intense, longer-than-expected recovery process. Of course we want to be home as soon as we can get there, but we know that we need to do what's best for Emri. We will most likely be transferred into an in-patient PT hospital nearby after Emri's lungs stabilize...and really have no idea how long we will be there. Please pray for wisdom as we try to make the best decisions for Emri moving forward. Also, if you could say a prayer for my heart, it would be so appreciated. I am missing my other babies a lot. I know I must be fully present for Emri here, but my whole being is aching to be close to my other three too. This is a very tough season, as you all know, and we so appreciate the prayers, gifts, words of encouragement, and love being poured out to us each day. Thank you all for your role in keeping our chins above water. God is good all the time and he is supplying our every need through these immensely hard times."

Nov. 13, 6:00 PM

"Oh today. Today was a tough one. Yes, the pain was immense, but our sweet girls' spirit was just screaming defeat today. But God is moving. God is stretching and growing Emri, and consequently us, as her parents. Nurses this morning needed a blood draw and in order to save Emri from ANOTHER stick, they were attempting to take it from her IV. As they were working on the IV Emri had her eyes closed tight, audibly praying, "Please God, please God, please God..."

The IV didn't work and we needed a poke.
A cascade of emotions poured forth from Emri after this experience. Among other things, she told us how many times she has prayed in this hospital and how the answer always seems to be "no".
God can take the pain away in an instant. God can make the IV work. God can heal that lung right now. We know God CAN, but why isn't he???
What a ginormous concept for a small child to wrestle with.
As many "right" answers as we can give to Emri about this very question, it ultimately must be the Lord that allows her heart to embrace and believe the truths of Scripture.

We turned to the Psalms.

"Hear, O Lord, when I cry aloud: be gracious to me and answer me! You have said, "Seek my face." May heart says to you, "Your face Lord, do I seek." Hide not your face from me."'

"Save me, O God! For the waters have come up to my neck. I sink in deep mire, where there is no foothold; I have come into deep waters, and a flood sweeps over me. I am weary with my crying out; my throat is parched. My eyes grow dim with waiting for my God."

How many times does David cry to the Lord in his distress, feeling alone and forgotten. But where does David always end up??

"God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling."

"The Lord is a stronghold for the oppressed, a stronghold in times of trouble. And those who know your name put their trust in you, for you, O Lord, have not forsaken those who seek you."

Emri's faith, even at the tender age of 9, is being tested as she faces things that are simply too big to face alone.

I am praying fervently for Emri tonight, as I see her child-like faith transition into a more mature understanding of God and his sovereignty. This is my prayer for her tonight---that through these fiery trials, her little heart will fully surrender to his truth and that she may come to rejoice for the work God has already done, and continues to do in her and through her.

"Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God's power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls."'

Nov. 14, 5:00 PM

"PATIENCE is the name of the game over here. Helping Emri achieve any form of comfortable position with the chest tube in is proving to be impossible. It just plain hurts and there is no where she can turn to get away from it. The hope is that the chest tube would come out on Saturday if tomorrow's x-ray looks good. PLEASE pray that the chest tube can come out as scheduled and that another pnuemothorax does not occur.

We did bust outta the PICU for a good 20 minutes in the wheel chair. Emri requested to wear a mask to avoid any germs.

We are working on finding all of the things we can be grateful for each day. Little things that we can see as blessings that we might not normally acknowledge.

That's about all I got tonight. We need prayers for patience...and of course continued healing...for Emri's body and spirit. I have (in a really good way) been drowning in texts and messages and am so grateful to receive every single one of them. Thank you. "

Nov. 15, 8:00 AM

"I'm laughing so hard on the inside right now.

"The value of sleep in the PICU".

I thought of a few scenarios that make just as much sense as this sign.

"The benefits of meditation while being actively pursued by a pack of ravenous wolves."

"Gluten free pizza that tastes JUST like regular pizza!"

"Breathing no longer beneficial for sustaining life."

"How eating cake and ice cream for breakfast can facilitate better focusing skills in school-aged children."

"How to not drink coffee "

Anyone have any other good parallels???

(I will be giving an actual medical update after rounds this morning)"

Nov. 15, 7:00 PM

"Stable x-ray. Not better, but not worse. We leave the chest tube clamped for another 24 hours. I will update when we know how tomorrows x-ray looks. Please continue to pray for patience for us all and wisdom on how we are to proceed when this pnuemothorax nonsense is finally behind us. We so badly want to get home!"

Nov. 16, 11:30 AM

"X-ray looked BETTER! Praise the Lord! A "yes" for Emri! Plan is to get that nasty thing out tomorrow AM as long as the x-ray tomorrow morning looks good. Pray for an even better x-ray in the morning and a tolerable day today as we spend our last moments with the torturous tube."

Nov. 16, 10:00 PM

"Captured a few bright moments today. We were thankful to escape the PICU on a little walk again, Emri worked hard to complete a Lego creation, and we watched some old home videos together. We get a few more smiles every day. Altogether a day full of moments to be grateful for."

Nov. 17, 5:30 AM

TUBE. IS. OUT!! PRAY it can STAY out! (please)

Nov. 18, 10:45 AM

Good X-ray☑️
Rental SUV (can't fly because of lungs)☑️
Pick up 8 prescriptions☑️
Convince docs we are capable of managing meds and outpatient PT☑️
Freak out a little☑️
Bust outta here....in the workings

Pray that we can:
-Get Emri comfy in the car (we have a harness so she can be laying down)
-successfully stay on top of pain

And mostly pray that Emri remains stable and healthy (especially those lungs) as we drive across the country and make our way HOME.

Nov. 18, 12:30 PM

"Here we GO!! It's been real Baltimore. Real long. Real hard. Real painful. But also real necessary...for many reasons. Keep praying us home team!! We love you ALL"❤️❤️❤️