Getting comfortable

I was passing on my blog information for a new parent trying to decide if they wanted to proceed with surgery and I realized how few and far between my posts have been. I was reflecting on why that is, I believe, mostly because we were comfortable, nothing to report.  Sophie had an appt with her surgeon this morning and we were thrown for another loop.  Not our first loop, we have been through many many loops over the last few years, in fact I have started to expect loops, I actually feel comfortable with the loops.  So in all my ponderings this morning I realized that we have become comfortable in our difficulty.  After nearly 6 years of this, it all seems so second nature; the surgeries, the procedures, the shots and yes even the loops.  I remember last summer after her abdomen literally ripped open and the initial shock from that loop wore off, I actually cracked up laughing while praying to God about that one because I literally thought "What next?" Flipped ports, torn incisions, black dying incisions, infections, popped balloons...small problems inside our big big difficulty.  And I am realizing we are comfortable.  Maybe too comfortable.

When you are in the midst of a storm, you bolster your strength, double your prayers and ride it through trusting in God.   Our "storm" is never ending (at least on the grand scheme it feels that way) and I don't have the luxury to allow myself to look forward to the sunshine peeking through at the other side.  I haven't ever felt able to look ahead, so I kept  my head down, and made myself comfortable.  I was trying to give a friend a little "what to expect" advice before her daughters surgery and I realized the surgeries don't even make me uncomfortable any more.  Like I'm numb to the idea of my child having surgery?  I don't like this feeling that I am comfortable in my difficulty.  Our pastor has been speaking on pride the last few weeks.  My comfortableness I believe is a form of pride.  I am not worried about surgeries because "I am an expert at this I don't need to worry, I know what to expect."  We disergarded the surgeons advice early on in this round and injected more than we were supposed to because  "I am an expert at this, we have been through this literally a dozen times, we know what we are doing."  We failed to keep track of how much we were injecting this time because  "I am an expert at this, it will all work out fine like it has in the past."   We have become comfortable in our difficulty.  We have stripped God of his title Savior in this situation because we pridefully became skilled at the juggling that we didn't  think we needed to trouble him with helping us.  And here comes another loop...

It wasn't till I left his office this morning that I could hear clearly all the things the surgeon wasn't saying.  He was not his usual "looks great, going great, everything is great" self.  There seemed a very strong "don't freak this parent out because parents always freak out" kind of vibe.  He tried to casually tell me that I should "definitely stop doing injections" and actually repeated that several times in several ways.  Then he told me to watch her expander for signs it is leaking.  Her back expander is soft. Because I have been too "comfortable" to pay attention to whether it was firm and is now soft (that would be a bad thing) I don't have enough information to gauge the situation.  But basically there is a chance that the back balloon is leaking. During my debriefing with Craig he asked me for "worst case scenario" - it's not great.  If it's leaking we rush into surgery soon (like next week) and try to salvage what we can but it more or less equates to two surgeries and 8 months....for nothing....or least very little mole removal...and that's all if everything goes well and there are no other loops on the other side of surgery.  Yeah, not a fan of worst case scenario.

If the expander seems to be holding it's own, surgery will probably be near Christmas which is much what I was expecting/hoping. Please pray for us.  I am grateful for yet another loop.  Especially this one, because it woke me up to how comfortable I had gotten.  People are frequently telling me how "brave" I am....I'm not brave.  I am probably the most unbrave person I know.  But I had allowed pride to creep in and make me feel like some Mommy superhero and I had gotten comfortable in my difficulty.  I am not a superhero.  God is the brave parent.  I am humbled by his example.  Please forgive me my pride and help me pray we are not traveling down the path of worst case scenario.  A friend recently told me her four year old frequently prays "for Sophie's balloons not to pop"....please Lord, forgive me my pride and my "comfortableness" and please grant Kara's prayer!!!

Unfrozen

This winter was all about Frozen; the smash hit Disney movie, the feet and feet of snow.... But now the signs of Spring are all around us, and as the ground becomes unfrozen we need to unfreeze time and begin again with another round of surgeries for Sophie.

 

 I am awesome about being brave. About acting like it doesn't phase me.  We have been here before 2, 3, 7, 10, 11 times before.  It's so exhausting.  And we haven't even begun.  I know we don't HAVE to do it again.  We, her parents, could decide to stop.  But then I would be making the selfish decision.  It's hard for me.  It's emotional for me.  I don't want to do it, so I could stop.  But isn't part of my parental sacrifice making the tough decisions?  Sophie is so sweet, she told my mom the other day, "I'm not too worried about surgery, but my Mom is, she is really worried about it." Guess I am not as good as I thought about acting brave and pretending it doesn't phase me.  The hard truth is that while we have removed over half of her original nevus the half that remains gets harder and harder to get to.  The issues we had with the last surgery dealing with the blood supply get worse each time, it is hard for the surgeon to feed blood down to the new skin when there is a maze of scars along her body.  I would have thought by now I would be all cried out about this issue.  But a new batch of tears can always sting your eyes when you least expect it.  I could write pages upon pages of how God is so good and has delivered us time and time again through these hard times and yet the ache is still there.  "I know who goes before me, I know who stands behind, the God of angel armies, is always by my side." I know this.  I do.  Then why the anxiousness?  I recently had the chance to briefly visit with a couple who had a profound effect on me in my formative years, my youth pastor and his wife, having only seem them 2-3 times in the last 20 years (wow, that makes me feel old!) it made me reflect on the time growing up when they made such a difference in my life.  It made me think about how every experience shapes us.  How every choice we make directs our path.  How our good and gracious God gives us the freedom to make those choices, even the ones we may deem later, mistakes.  I know there are people far braver than I.  Mothers whose babies have cancer.  Mothers who can't feed their children.  Mothers who don't know in a real and personal way the God of love upon whom they can cling to in their desperate moments.  My heart aches for them like it does for my Sophie.  I had just meant to pass along the surgery details and ask for prayer just as I have a dozen other times....I guess my heart had more to say.  Her surgery is a week from today, Friday April 18 at approx 9:30 am.  Next Friday is also Good Friday.  It is comforting to remember, "For we do not have a high priest who is unable to empathize with our weakness, but we have one who has been tempted in every way, just as we are -- yet he did not sin.  Let us then approach God's throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:15-16.  Even Jesus himself, our high priest, tempted with doubts and fears in the Garden of Gethsemane cried out for God to "take this cup away from him" but in the very next breath, in full submission, "not my will, but yours be done." Is that not my cry?  To allow God to have his will worked out in our lives.  My faith tells me that the surgery date is not a coincidence.  It is a loving reminder of a big God, God the Father, who wants me to remember, HE KNOWS.  He sent His son to die, for me.  He knows.  Whenever I used to cry when I was little, without even saying what was wrong my Mom would pull me into her lap for an embrace and murmur, "Momma knows."  Now the God of the universe, wraps me in His loving arms and softly whispers "Papa, Abba, knows."  As always we covet your prayers, before, during and after. Thank you.

Having a Hebrews moment....

We have had a very "eventful" month dare I say year here at our house.  I was feeling in a very reflective mood and thought now was as good of time as ever to shoot out a Sophie update and combine it with a general family update.  Today I was feeling convicted to make sure I shared with anyone and everyone how gracious God has been to our family recently.  After a year that was very hard on us (last year) with my husbands back injury and subsequent surgery it was such a joyous thought to be expanding our family and Sophie especially is overjoyed that it is finally her turn to be a big sister.  Now admittedly I am a pretty miserable pregnant person, it takes a lot of encouragement for me to make it through the gamut of symptoms through the course of nine months, which can be taxing on my family who is wondering "why is my mom always tired, sick, etc." and God has carried us through these long LONG months and here we are 6 days from my due date. 

One short month ago I decided spur of the moment to have a garage sale and that same week we took a look at our finances and with the council of my dad and a builder decided spontaneously to put our house up for sale.  I mean because in the last month of a pregnancy who doesn't think, "Gee I would really like to do house showings and clean the house non-stop!" I entered this season with so much anxiety, which is already something so difficult for me.  So with worry over the house selling, worrying about the imminent arrival of "Three" as she is affectionately being referred to, worry over Sophie's upcoming surgery, things began to pile up.  May's calendar was literally exploding when I looked at it and this was after I got through our church pageant which was quite time consuming but magnificently rewarding.  What if the baby comes early, what happens to ALL these things on my schedule?? I can't tell you how I have cried to the heavens in the last month, begging God to work things out according to....well let's face it MY plan.  I hope I am not the only one who tells God what we would really like to happen and plead and beg him to align His will with ours.  And all the while my husband would say in an unwavering voice "Honey it's going to be fine." Seriously the word 'fine' makes my skin crawl at this moment.  I don't understand why I am like this other than to say I am human.  I have had God care for my concerns time and time and time and time again, I could fill a book with my own personal answered prayers.  And sometimes it takes SO MUCH longer than we desire which is SO MUCH more stressful and harder to trust.  But he always upholds us in his righteous hand. I am so thankful for such a loving heavenly father, who forgives my trust issues and cares for us so dearly.

I will spare you my long winded details of how everything has played out but tomorrow is the last thing on the calendar before the baby that I wanted to make it through, my daughters choir concert.  Yesterday we signed a sales agreement with a buyer for our house.  We have a date for Sophie's next surgery, Friday June 28, which will be the day after we move out of our house and move in with my parents for a bit while our new house begins to be built.  God has answered my prayers one after another....

Honestly I think my anxiety stems from insecurity, "what if I don't deserve good things to happen to me?" For years I have worked to demonstrate faith and gratefulness in my situation whatever it is and somehow "prove" to God that even when your answers are 'no' or 'wait' I will still love you and praise you.  And through every storm we have battled when I look back at the results I see his hand.  Even through thyroid cancer, losing my voice, Sophie's birth and ALL her surgeries and wounds, through NOT selling our house last time we tried, through other storms big and small....I can see his provision, his loving-kindness, his care through it all.  This morning I read Hebrews 11 which opens famously with "Now faith is confidence in what we hope for and assurance about what we do not see" and goes on to chronicle the bibles most famous heroes of courageous faith.  I realized that my husband's "fine" is exactly that....faith.  Unwavering belief that whatever the outcome, God will be good and receive glory.  My method of getting to that same conclusion is always so much messier!  But I do believe I feel it deeply and my desire is to be transparent about my journey with others to give God the glory he is due.  I want you, the people who love and pray for our family, to be assured whatever trials you are facing, HE IS HERE!! God is with you, even when you can't see, hear or feel him.  When you are desperately scanning the horizon to see how it will ever work out, how can he make beautiful things out of our messy messy clay lives.  Because he is awesome, and powerful, and perfect.  You need not do more than glance over your shoulders at the answers of the past to know how PRESENT he is in your life.  Thank you all for your prayers and encouragement you have given me over the last year and a half.  We feel so incredibly blessed by such a good and gracious God.  I can't wait to post again soon with pics of our newest Travis.  Blessings to you all.

PS I have decided to implement a "To hold the baby you need to pack or move something in our house" rule.  So basically I plan to use our new child as currency to help with our move, haha.  Good thing I know lots of you can't resist a perfectly adorable baby!

Phase 3 update

Sigh.  4 years, 10 surgeries and I am still getting thrown for a loop, not that I am that surprised by the "loops" any more and there is a significant difference in how we handle them now but the changing nature of this beast always seems to surprise me.  So it is not going well.  Wish I could say it was.  It is becoming more and more likely that Sophie has developed an allergy to the numbing cream that may be making it more painful.  So it would appear our "magic lotion" has lost it's magic and it's very possible that we may have to endure the next 8 months of shots without it.  With it she gets extremely red and painful on her ports every time and cries and screams every time we try to do shots.  I only hope that without it, if the allergy is indeed causing pain that she will calm down and allow the shots to take place without the cream.  I am a little sad and weepy today in the face of this new roadblock but I was pondering the whole thing and came to a few different realizations.  I have really come a long way in the last 4 years in strength and faith.  At the beginning of this journey I wouldn't have endured over a month of difficult injections before telling you all that we were struggling.  This time I have become trained at being her advocate and making decisions for her that I actually decided to spread the injections out and add more each time and treat with cortisone in between.  I have been relatively calm about this whole situation, much more than I would have been in the past, I guess a sign I am growing up.  However in that calm I wasn't as quick to ask for prayer.  Feeling a little like "we can figure this problem out on our own." I definitely don't want to get so confident that I am trusting in my own strength and not relying on God's strength bolstered by the prayers of believers.  I have been humbled continuously over the years by the prayers of others.

Recently I was sent a picture that features a woman's prayer chapel set up in her home for her daily prayers and placed in the corner of her stained glass window is a picture of my daughter whom she prays for every day.  That breaks my heart with gratitude for the love from others.  This is a woman I have met a few times in my life, most of them back when I was little like my daughter yet the fact that Sophie is daily in her prayers is so touching.  I remember the first three years of Sophie's life she was listed on the prayer request list in our church bulletin, there were many weeks when we were between surgeries or things were going just fine and I would actually feel guilty to see her name there, as if the prayers weren't needed or important.  Of course I love my child and pray for her fervently not just about her medical issues but her happiness, salvation, her heart as I pray for my first born as well.  But when others care for your child and pray for them with you it is extra special.  I guess I just need to keep being thankful and keep asking as needed because those prayers have been answered one after another over the years. In the tradition of Hebrews I would like to revisit some of those wonderful answers if you will indulge me:
1. Diagnosis soon after her birth
2. A wonderful specialist living right in our town
3. 10 successful surgeries without complications
4. A couple that prays with us and being covered with the Lord's peace through each of those surgeries
5. A happy healthy little girl who has been known to sing praises to God even when on our way to the hospital and actually asks to have surgery
6.  A medical supply consultant that has prayed for my daughter and provided us with excellent service
7.  Several in home nurses over the years that have taken the pressure of bandage changes off me
8.  Phenomenal insurance that covers nearly everything including supplies being delivered to our house
9.  A pharmacist praying with my husband in early days when he was scared and discouraged
10. A church in Arkansas sending us a handmade prayer quilt that they prayed for us while making
11. A section of skin that was turning and black and looked like it was dying come back to life
12. An balloon that was questionably infected moving up surgery a few weeks early but timing working out well.
13. A balloon that leaked only 5 days before surgery so not too much progress was lost
14.  A surgeon so helpful and accessible that he has given us his private number and talked us through various issues like flipped ports over the years
15. Discovering emla cream when Sophie was afraid of her shots.
16. Three full rounds of home injections with very little crying.
17.  Emails, cards, prayers and even pics like mentioned above always coming just when I needed encouragement like manna from heaven knowing that you the people of God are standing with us during this long battle.

The last one is more like 1000 rolled into one.  I could go on and on.  I read this morning in Jesus Calling by Sarah Young that when "adversity strikes and you thank me anyway, you trust in my Sovereignty is a showpiece in invisible realms" so I did not want to call on your prayers one more time without taking a moment to thank you and primarily God for the answers we have received so faithfully.  I wait excitedly to see how he can take this new situation of an allergy and turn it into another answer of his faithfulness to his glory.  Please pray with us again and be encouraged by all the fruit for your previous prayers!

Phase 3

I just got off the phone with the specialty pharmacy that delivers our medical supplies to us (I don't think I will EVER get over how awesome it is that they deliver them to us for free!). What this means is that it is time to start phase 3 already.  Tuesday is three weeks from surgery and we are to begin injections every other day at that point. 

Phase 2 went really well, she only needed meds for about 5 days or so and the day after surgery she insisted on wearing a skirt, she was ready to go! 

This was Thanksgiving morning (48hrs post op!) she was marching along with the marching bands in the parade.

 

So although she is doing very well she does have a little bit of struggles with her port placements this time.  For those of you unfamiliar the port looks a bit like a gumdrop under the skin, it is a dome that we do the injections into that is a little ways away from the actual expander and connected by a tube.  So the dome part is a material that is injectable with the needle and the flat bottom is metal so you don't accidentally poke through.  We have had trouble in the past with the ports flipping over, not too much maybe 5-6 times but it's rather unpleasant for Sophie, she screams bloody murder while you are trying to remain composed and flip it back over under her skin. So that means, we would like to avoid doing that ever again if at all possible.  So we thought the best solution would be to put the port against something more firm which would hopefully deter flipping and we chose to put them against her ribs.  The are both on her back just behind her armpits and 2.5 weeks after surgery they are still very painful, if you bump them, try to pick her up under her armpits or even sometimes she is just sitting and complaining that they are very sore.  I would imagine that having a metal dome under the skin is very sore but I was hoping by now she would be getting used to it.  It's possible we will spend the whole 7-8 months with them being sore and sensitive.  Please join me in praying that this gets easier for her to deal with.

So as we embark on phase 3 we have a little residual pain from these ports that we are dealing with.  She saw the injection supplies sitting out from when we had been taking inventory to order.  She looked at them for a minute and then said "Are you going to give me shots?" I reassured her that even though we did have to do that again that we would make sure we used the magic lotion (Emla numbing cream) so that she didn't have any pain and that she would get her M&M's for being brave.  She kind of shrugged and said "Okay!" so we seem to be doing good in terms of anxiety.  Please pray this keeps up and that as I reassured her the injections will go OK with minimal pain.  And just Craig and my sanity.  This doesn't maybe sound like much but it is a very big commitment.  We get the cream on and covered with Press and Seal (yup Sophie is leftovers!) and then we have to wait 2 hrs - too early and it hasn't kicked in, too late and it has worn off, for us 2 hrs is the magic number - and then we do the shots which is really an "all hands on deck" situation and we need to get back into a rhythm for this.  And we have to do this EVERY other day.  Towards the end I literally throw a party on every NON-shot day because it is kind of exhausting performing this elaborate medical ritual every other day.

Finally I would like to end with a cute anectdote: The other day Sophie pulled up her shirt and shouted "Where did my belly button go!?" I know I had told her before surgery that she would be losing it but I guess she was still surprised.  Luckily I quickly followed up my "it's gone" explanation with a tickle and a "but your tickle spot still works" and we forgot the temporary alarm.  Well today we read one of our library books and I received a blessing from God in the form of Pete the Cat.  We love the Pete the Cat books! He is hilarious and they all come with a free song. 

 

 

Here is a preview but as the book goes on Pete keeps losing buttons and in the end he looks at his belly button and is still mellow because he had but he reiterates several times in the end that "Buttons Come and Buttons Go" but it's important to keep rocking along and singing your groovy song.  I saw that there was a new Pete book and the library and I snatched it up but didn't ever think that it would be an answer to prayer! Our new motto: Buttons Come and Buttons Go.   Sort of reminds of another wise old "Cool Cat" Job, "The Lord gave, and the Lord hath taken away; blessed be the name of the Lord.” Job 1:21 Thank you for praying for us! We are held in His hands sustained by these prayers!

Phase 2

 Every one of Sophie's surgeries has three phases.  Phase 1: the actual surgery Phase 2: the immediate post-op recovery and Phase 3: the long term after care in some cases involving the filling of expanders or wound/scar care.   Yesterdays surgery Phase 1 went amazingly well.  As always we were carried along by your prayers.  Although the surgery was quite long she woke up easily and was quite thirsty, as it may have turned out maybe a little too thirsty as perhaps all her beverages made her get sick later.  We were also relieved and blessed to come home and all sleep in our own beds.  So we are on to Phase 2 which the main goal is to get her pain under control.  She is very sore, especially under one of her ports that he had to put just behind her left armpit, she hasn't had anything in that area before which probably makes it more sensitive.  So she isn't moving around much today and we are just focusing on getting that pain under control.  We invite you to praise the Lord with us for his mercies carrying us through Phase 1 and ask for your continued prayers in bringing us through Phase 2.  The girl who was excited for surgery may have changed her tune this morning declaring, "I don't ever want to go to the hospital again." I pray that next time we have to go to the hospital that sentiment is a distant memory.  She is really brave and sweet.  I am humbled by all your prayers and support. 

Getting hugs from Grandpa and Momma after surgery

 

 

Very sleepy, heading home, Mom and Dad are relieved!

 

 

Very painful this morning, she was crying as she was sitting here and afraid to move

 

 

Finally we found a comfortable position.  We may need to spend the day right here....

 

 

Thanks for reading and especially for praying!

Thanksgiving

Just got "the call" - the pre-procedure planning phone calls that mean, it's almost time.  In just a few days we go in for Sophie's next surgery, her 11th.  It's Tuesday morning at 8:10 am. She is healthy right now (so please no one get her sick this weekend!) and her lungs are clear which is excellent.  She is having two expanders placed and hopefully the recovery will be quick and easy.  Then we can all enjoy a nice long holiday weekend home with family.  That is our prayer.  There is something comforting in having been through this so many times.  I always seem cool calm and collected.  I believe truly that God gives me strength, to be the Mom I need to be. That doesn't mean that every time we go through this it doesn't seem like a really big deal to us, it does.  She is our baby girl and this is always always hard for me and her Daddy.  Obviously being pregnant I am not operating at my best these days, esp since we have to be at the hospital at 6:30 am yikes! I will need some prayers specifically in this area, esp spending the night there too. I am very grateful for all the prayers. Much to be thankful for this year.    "Give thanks to the Lord, for he is good; his love endures forever." Psalm 107:1