There were many days when I never thought this would happen…so many times when I put this off- this feeling of relief and liberation, because the idea of being back in MT just seemed so far off and most often, so questionable. Early on, wondering if God even had us returning home with our girl at all, and most recently, wondering if her 2 shunts in addition to her heart transplant would result in her doctors advising us to stay close to Seattle for the long term. So much has happened in the last 8 months here, it honestly feels like it’s been years. And yet, I have this precious little almost 7month old beautiful darling girl of mine to remind me that it really hasn’t. 😉 It has been, without a doubt, the most humbling, trying, amazing, most miraculous time of my life. God has shown Himself, His love, His faithfulness, His provision, His grace, His divine peace to us and so many others. We have made friends with people we never would have known if it not for this experience. We have prayed, suffered and mourned together…and prayed, hoped and rejoiced together. A bond that is an understanding of having been through something similarly life altering, at the same time. God’s timing is always perfect. Though I would never wish these trials on anyone, I am so so thankful for God’s provision of my cohort in this way. Forever bonded by congenital heart disease and God’s perfect timing.
It isn’t over, nowhere near, but we’re calling it a new chapter- the one where we get to be back in MT as a family. There are no words to express what all this means to us. To finally bring our daughter home to MT is nothing short of a dream come true. I guess you’ve probably guessed it….Poppy has been released home to Montana!!!!
Woohoo!! Hallelujah!! Thank you Jesus!!!!
It is ALL because of You!!!!
She had a cardiology appointment today, and is cleared to go home!!!!!!! 😀 Dr. Law was pleased with what he saw. We have another lab draw to check drug levels before we go, but otherwise…!!My hope was to have her weaned off of her hydromorphone before we were released, and she actually came off of it about a week ago or so!! Came off like a champ at that!! Praise God!! She is now on her anti rejection meds (cyclosporine and MMF/cellcept), antiseizure (keppra), heart (verapamil), magnesium, antacid for reflux (Zantac), probiotic (culturelle), and profilactic antibiotic (bactrim). She gets her meds at 6am, 2pm, 6pm, and 10pm. Someday in the future, may be in the next year or so, she will be weaned off of a few more meds and her meds will move to twice a day!! Won’t that be something?!
She is absolutely loving having her feeding tube in her tummy as opposed to her small intestine. She is doing pretty well on her bolus/meal feeds. Thank you Jesus! This has been a very pleasant surprise from a girl who always seemed to have a sensitive tummy. She now takes 78mls over 1 hour 5 times a day and is fed continuously over night until we can work her up to getting all of her required volume added to her bolus feeds during the day. The goal is for her to be able to get her total volume in her bolus feeds during the day, over 30minutes each bolus. Everyone keeps saying that getting the bolus feeds squared away is really the best way to make progress with oral feeding, because she’ll actually start to become hungry for her meals now. Orally, she’s about the same. Hit or miss. Some days she will take 4 spoons of squash and/or 6mls of formula, and other days she’s too gaggy. We are still really working at desensitizing the front part of her mouth, to help to get her comfortable with having a nipple and/or spoon enter without her gag reflex taking over. She has started to teethe, and has been sucking on her hands and actually bringing up a few toys to her mouth to chew on, so she really seems to be desensitizing herself in some ways, which is awesome!! No teeth yet, but maybe it won’t be long?
She’s growing! She is now 15.5 lbs and 25.8 inches long! Her head control seems to improve more and more each week, as does her leg strength. We did however, find out last week that our dear girl is needing glasses. Brad and I were noticing that she was crossing her eyes a lot and not really locking in on us as like we thought she should be. Turns out she is extremely far sided and the doctor explained that it’s like everything is blurry. Most of us can see far away and our eyes just do some focusing to see up close….well, Poppy is having to focus to see far away and use even more focusing effort to see up close….so next time you see a picture of her, she may be sporting some specs!! 😉 Her having glasses this early on could help to prevent the need for surgery when she’s older. Praise God for early intervention!! On one hand I’m bummed she’s got to have one more accessory attached to her sweet face, but I’m way more excited for her to be able to SEE!! I honestly can’t wait for them to come in.
And so, we are headed back to MT, to my hometown of Conrad. Brad will be able to finish up his masters by being in the school system, and we will have the help and support we need in trying to figure out how we do this- this caring for our medically fragile baby in MT…how we get back to ‘reality’ if you could call it that. Life itself is just so different now. It will be a relief indeed, to just have family nearby to help with the weekly doctor appointments, and entertaining Crosby, especially if should something emergent come up that would land is back in Seattle. We have prayed and prayed and prayed that His would be done- that He would please make His will for us loud and clear…and so we get to go home. We are beside ourselves excited!! 🙂
As we’ve started to pack, with praise and worship blaring, our screen saver is our photo album- all of the photos we’ve taken in the last 6 months, at any time you look up to regroup and there it is…already the combination has had both Brad and I breaking down into tears….it’s like we never knew if this day would come…we literally look back on the last 6 months of our lives flashing on the screen and it’s just…wow…profound. 8 months ago we left MT, hopeful and optimistic, we packed for best case scenario-6 weeks of being gone. Here we are, 8 months later…packing all of the treasures we have received from so many of you, cards, keepsakes, prayers and it’s just tears…deep heartfelt tears. Though we have been jolted completely out of our comfort zone, God provided through so many in so many different ways, we are so deeply humbled and blessed. Our family is a different family than we were when we left. We did not know what lay ahead, and I suppose we are the same in that way still- never knowing what God has in store, but we have learned to rely on and seek God at a whole new level- thank you Jesus for that!! We are where we never thought we’d be, in more ways than one….and God is still good all of the time!!!
Brad shared this with me this morning-his devotional…and it knocked me between the eyes…wow…profound….and I’m convicted. So so good, I thought I’d share it here as well.
From: Oswald Chambers’ My Utmost for His Highest
The Assigning of the Call
I now rejoice in my sufferings for you, and fill up in my flesh what is lacking in the afflictions of Christ, for the sake of His body, which is the church . . . —Colossians 1:24
We take our own spiritual consecration and try to make it into a call of God, but when we get right with Him He brushes all this aside. Then He gives us a tremendous, riveting pain to fasten our attention on something that we never even dreamed could be His call for us. And for one radiant, flashing moment we see His purpose, and we say, “Here am I! Send me” (Isaiah 6:8).
This call has nothing to do with personal sanctification, but with being made broken bread and poured-out wine. Yet God can never make us into wine if we object to the fingers He chooses to use to crush us. We say, “If God would only use His own fingers, and make me broken bread and poured-out wine in a special way, then I wouldn’t object!” But when He uses someone we dislike, or some set of circumstances to which we said we would never submit, to crush us, then we object. Yet we must never try to choose the place of our own martyrdom. If we are ever going to be made into wine, we will have to be crushed—you cannot drink grapes. Grapes become wine only when they have been squeezed.
I wonder what finger and thumb God has been using to squeeze you? Have you been as hard as a marble and escaped? If you are not ripe yet, and if God had squeezed you anyway, the wine produced would have been remarkably bitter. To be a holy person means that the elements of our natural life experience the very presence of God as they are providentially broken in His service. We have to be placed into God and brought into agreement with Him before we can be broken bread in His hands. Stay right with God and let Him do as He likes, and you will find that He is producing the kind of bread and wine that will benefit His other children.