THIS is what it means:
friends & family who bring you meals/coffee/bags of goodies/clean out your children’s closets/watching your children/being surrogate parents to your children/organizing your daily living needs for the next few weeks/praying for you and over you.
And so much more.
I am blessed beyond measure by the outpouring of love and support being shown to us this past week. Has it only been that long???
anyways – it was a brutal afternoon. Kendall came out of recovery from the picc procedure and upstairs where we had to remove the old IV, start the feeding tube, take vitals, get chest PT – and all she wanted to do was sleep off the pain from that thing in her arm. I lost it. I broke down crying for my child who has been through So Much this past week and just could not find any comfort. Ben stood and rocked with her while I just laid my hands on her and begged and pleaded for the God of all comfort to place His calming hands on her little body and allow it the rest it needed. And slowly, slowly, her breathing calmed down, her little muscles relaxed, her screams subsided to whimpers, and she finally found rest. I put a sign on her door that ACTUALLY WORKED – and she was left blessedly alone for almost 3 hours. After another brutal breathing treatment (she has a therapist who i think moonlights as a meat tenderizer with the gentleness of a herd of bulls), and a full feeding bag hung up, and her antibiotic machine hooked up – she is sleeping again.
Her nephrologist (kidney doc) just came in to update me on her test results from yesterday’s nuclear scan – totally clear! Praise God – your prayers are not falling on deaf ears! While we are not hearing any specific diagnoses yet – we are clearing some very very very bad things off the table with all these positive results which is So amazing. She has one more kidney related test tomorrow, which is the same test that Karissa went through back in October of last year – testing for the same defect that Karissa has. Kendall is at a 50/50 risk of having the same defect, which causes the frequent infections – which Kendall clearly can’t handle. Worst case scenario from tomorrow’s test – she has the same defect as Karissa and will be on preventive antibiotics just like Karissa. So even though it will be a pain to put her through one more catheterized procedure tomorrow during which she can’t eat AGAIN – it will proactively answer some questions and help her avoid the pain that poor K2 has endured for 4 years.
Immediately following the VCUG scan tomorrow will be her video swallow test during which we will find out if she is for sure aspirating her meals as the speech therapist suspects. This in and of itself will answer quite a few questions – it would explain a LOT about her failure to thrive/gain weight, and would also explain her weak lungs/respiratory issues. The theory is that since she has the hypotonia – ALL of her muscles, including the 26 involved in the act of swallowing and digesting, are weak, therefore – she is refluxing her food back up her esophagus, where her airway muscles aren’t strong enough to fully close, and she is swallowing milk down into her lungs. Now this is still a theory at this point, but in talking with the speech therapist, and doing a little of my own research, i really think we may be on to something here. So tomorrow this test will confirm if that is happening, and to what degree, so we can start attacking the problem and fixing it. Easiest fix – thicken her feeds with a food thickener. My only fear with this is that because her feeds take 3-4 hours to bolus (go through the pump into her tummy), we can’t add the thickener to breastmilk. And of course my children and their champagne tastes (;) ) – Kendall is on a very expensive formula because she is allergic to the milk protein found, well, in all dairy products, but specifically in baby formulas. So if she has to go on all formula…not to mention that she won’t be getting any of the amazing nutrients she so desperately needs from my breastmilk. So that is a little emotional for me to think of – but that is me worrying about tomorrow when i still have a good few hours of today to get through. So we’ll take that news as it comes.
From a physical standpoint – that’s where we are tonite. She is looking good. in spite of still losing weight, yes LOSING even on a 24 hour continuous feed of extra-calorie fortified breastmilk, she is looking better than she has all week. Her kidney doc even said tonite – ‘she doesn’t look like she’s wasting away anymore – like she did yesterday even!” He wasn’t blessed with the gift of tact…but he’s a darn good doctor! She is clearly in discomfort from the new PICC line and in general is getting very disillusioned with being a pin cushion here in the hospital. But she is certainly looking more like a Thriving Baby. So we praise the Lord for that.
Emotionally – what a ride it’s been. I don’t know if its breastfeeding hormones going wacko cause of the dips in my supply due to the stress of the past week and essentially having to suddenly stop breastfeeding my baby, or if its just the stress all finally catching up with me – but i have been a virtual spigot of tears for the past two days. I hear a country song on the radio (“Cowgirls Don’t Cry”) and i cry. Guess that makes me not a cowgirl. I get an email from Kealeys teacher about how well she is doing with reading, and I cry. I can’t find my Twix bar stash in the room and I cry. i cry because I am touched by all the generosity, and kind words, and wonderful comments and emails we get – i cry because we have been so very very blessed, and we are so wonderfully upheld by our family and friends. People across the country are praying for Kendall, and I know that God is hearing those prayers. His hand is on our baby every hour of every day – even in the hardest ones. It is those times that He is the one scooping us up and just rocking us in His arms, saying “let me take it, let me take your pain and frustration and tiredness and fill those places with my love”. And yet it’s so hard to surrender sometimes. Why do I hold on to it? Why do I fight just letting go completely and laying it all at the feet of a loving God?
But i am done. I am too tired to carry these burdens any longer. So many of you have called or emailed either me directly or Erin at church or through some other means have asked how you could help. As much as I would LOVE to believe that my Wonderwoman underoos are firmly in place, securing my position in this world as a superhero to all, I know they are just a costume. I am wonder-nothing these days, and I so desperately need to accept your gifts and offers of help. To that end, Robyn W. has so very graciously stepped up to be our “care coordinator”. I do not pretend to know the levels of grace by which she is able to offer this, being a busy mom herself, and yet her gifting for it is so well-placed in my life right now, in the lives of my family.
She has set up a link for meals for next week – we are HOPING that we will be home this weekend sometime, and so meals are for next week as we get back on our feet with Kendall and her new challenges and routines. That link is HERE.
She also has a relatively up-to-date list of other areas we are in need of help in. This ranges from the mundane tasks of being a SAHM (i am flat out of dishwashing tabs and apparently there is not a drop of toothpaste in my house??? I am not sure how that happened..except to say that Kaylen’s breath has been oddly minty the last few times I have found her wandering around upstairs…
We will be adjusting to a very new schedule around our house, including physical therapy, more than likely 3-4 times a week, working around Kendall’s ever-changing tube feedings (although they tell me the pump she will go home on is “cute” and “fits in a backpack”. I am concerned about who walked around testing the fact that a feeding tube pump fit into a backpack, but oh well. I’ll take it!), and in general just adjusting to life with each other again!
In short – there is plenty of Need to go around for all the help that is being offered. And if you don’t “cook” – not to fear – we can put you to work in other ways for sure! LOL!
Anyways – I say all this not to guilt anyone into helping, but because my eyes have been opened today in more than one instance to the fact that there are quite a few of you out there who want to be physical hands and feet of the body of Christ in our time of need. And I need to lay aside my pride, open my heart, and receive the love you all have to give. So please feel free to email Robyn (email:firstname.lastname@example.org ) – she can help point you in the right direction! because my emails are still being weird and wacko and i know i am not getting them all in a timely manner.
I, of course, still love reading your emails and comments and words of encouragement either through email, Facebook, or here on the blog. I cannot put into words how very blessed I am by each and every email, text, or voicemail message i receive. (I use the word I a lot, but know that Ben also hears/reads everything and feels the love also!)
There is so much more I want to say and thank you all for – and yet i think its time for this day to be over. Time to wind down as the activity on the floor outside is winding down. Hopefully no one code blues tonite, and there are no fires anywhere (code red). Hopefully all is well in your house right now as you are reading this – I can only pray that all of you are protected from this winter of horrible sickness. Pray for our friend Lisa, who is also enduring some scary health problems. Pray for our friend Faith, pregnant with twins, who has just been put on bedrest. I cry out to God tonite that He makes Himself known to each and every one of you who have been so faithfully praying for us. He IS real, He IS in control, and He WILL work all things together for good.
I read an awesome quote the other day that really sums up where I feel like we’re at (finally) after a long week:
I can sum up all that I have learned about life in three words –
– Robert Frost
And yet again, i begin to cry as I read these words in the worn Gideon Bible here in the hospital room
For He shall give His angels charge over you, to keep you in all your ways
They shall bear you in their hands — Psalm 91:11-12a
Resting in His hands tonite –
the whole Atkinson crew, upheld by all of you.