Wednesday, February 25, 2009

Headed for Surgery

Sk and I saw her surgeon today (Wed. Feb. 25) and he has recommended that we proceed with redoing the surgery that was done last March, March 3, 2008 to be exact, almost one year ago.  Sophie Kate's surgery will be done tomorrow (Thurs. Feb. 26) morning.  We have to be at Children's at 7:00am, I'm not sure what time Sophie's surgery is scheduled for, all I know is that she will be the third case done.  Like the last time SK had this done, we were told to expect to be there for 3-4 days post surgery, yuck.

The type of surgery Sophie Kate will be having tomorrow is called a fundoplication, if you're curious.  This time though there is an added little twist, a hiatal hernia repair.  A portion of SK's stomach is pushing up into and through her diaphragm, so that will be repaired this time around as well.

I had been talking about how I needed clarity in this situation and I really believe we have gotten that answer today if not over the past 3 days.  SK has not kept one feeding down all day today, there is not one question in our mind that this is what needs to be done for our little girl, as much as we hate that this is happening again.

Things are crazy around here right now trying to prepare for tomorrow as well as the next few days.  My mom is coming to take care of the boys and Chad will be back and forth between home, the hospital and work.  Please remember our little Sophie in your prayers.  I will update y'all tomorrow when I can.

Tuesday, February 24, 2009

How Long and How Much?

How you watch your child hurt before you say enough is enough?

How long.....must you see tears stain your baby's face?

How you sit and hold them while they scream?

How much...will they actually cough up/spit up/throw up today?

How long.....must you feel their heart pounding throughout their entire body due to such and intense pain response?

How much...must they be hurting, after all the meds have been given, to still not succumb to sleep?

How you sit and hold them after they have finally let sleep overtake them?

How long.....before her brothers walk around with their hands on their ears asking you why she won't stop?

How long.....must you endure before you want to scream and cry yourself?

I have really done SK a dis-service by saying her reflux is back, technically SK has GERD (gastro-esophageal reflux disease).  This not something that can be helped by taking a baby Tums, I wish it were that simple.  I know how heartburn feels and when I feel that, I just go and take a Tums and I get instant relief.  I can't imagine the awful burning and the actual damage that is going on inside her little body and the pain that she is obviously feeling only to then realize that we have yet to find a medication that can alleviate any of this for her.

This night (Mon. Feb. 23) has been eerily reminiscent of so many nights we spent last Dec., Jan., and Feb.  I have said over the last 2 weeks that I need some clarity on this, that I thought the medication might actually be doing something, but I wasn't sure.  We were having good days and bad days, 2 bad might be followed by 3 good or vice versa.  Well, this night we hit the mother lode of bad nights and it took me straight back to Feb. 2008, were I was holding a screaming baby screaming out myself "Why won't You help her?"  Of course this night didn't last as long as those did, 3 hours compared to 12 hours (and no I am not kidding about that one), but I have also vowed that I will not let it get to that point again.

There will be a call to her doctor tomorrow and hopefully and appointment not too far away.  In the meantime, it is 4am on Tuesday and I have been up since 2am with SK coughing and gagging up all manner of unpleasantries, this cannot continue.

How long....must we endure before we get our miracle?

Saturday, February 21, 2009

I Have No Swirly Skillz

Friday night, Chad graciously agreed to keep all the children so that I could go out with my girlfriends.  We went to Sips-N-Strokes a fairly new place here in town were you paint under the direction of an instructor but end up leaving with your own personal creation.  No prior painting or being crafty experience needed, thank goodness, right girls? we are with our clean white canvases ready to get started, my how I love a clean slate and a fresh start. The possibilites are endless, aren't they?  I wish we had all felt that way.  Since 4 out the 5 of us were Sips-N-Strokes nubies, we were all worried that our pictures weren't even going to be fit to hang in our garages.

After lots of, "What did she say?"  "What do we do next?"  "Do we use the fat brush or the skinny brush?"  and "She's going too fast, slow down," we finally made it to the halfway point and everyone was feeling good about their paintings.

Then came the actual drawing of the crosses onto our paintings.  Y'all should have seen the look on people's faces, it was priceless.  Our instructor was truly doing the best she could with what she had to work with and by that I mean "us."  All kinds of instructions like "line this up just above center" and "now turn your painting on it's side" and "continue making little swirlies all around that center circle" were thrown at us.  Needless to say, albeit fun, the drawing of the crosses got all of our blood pressures up and left all of us feeling, at the time, unsure of our paintings.  In fact, one of my friends, in a moment of frustration declared "I have no swirly skillz."  Oh, it was too funny b/c there was actually quite a bit of swirly painting required of us.  Not to worry though, everyone's swirly skillz were just perfect and unique to their own paintings and we all ended up with beautiful paintings that were very worthy of hanging anywhere but the garage.

Aren't they pretty, they really turned out well and it was a fun evening.  You can't see it in the above picture, but in the background of the painting are the words to the old hymn "The Old Rugged Cross."  This beautiful song holds so many memories for me, I most closely associate it with my precious grandmother.  I remember the Sundays that I got to sit with her and my grandfather in the church that I grew up in singing out of the hymnal.  Remember the hymnal and how we used to have to actually turn to the right page to see the words to the songs in which we would then sing the 1st, 2nd and 4th stanzas?  Y'all know y'all remember and why did we always leave out the 3rd stanza?  I still don't know why, but we always did, anyway I am getting seriously off track here.  I would listen to that sweet lady sing in her off key way, it's true, my grandmother couldn't sing to save her life, but she did anyway and I gauarantee you it was music to her Savior's ears as it was to mine.  My grandmother went to be with Jesus when I was in the 8th grade and "The Old Rugged Cross" was played when we laid her to rest and I have yet been able to sing that song through since.

If I haven't conveyed it yet, that song brings up some powerful emotions in me first of all b/c of what my Savior did on the old rugged cross.  Secondly, because of that I know that my grandmother and now my grandfather are praising Him together at this very moment and I also know that my family will be there with them one day as well thanking Jesus, in person, for what He did for us on the old rugged cross.

Thursday, February 19, 2009

Save the Date for Sophie Kate

Huge news people, get ready to mark your calendars....our Trussville Chick-Fil-A is doing a fundraiser for Sophie Kate at their store all day long on Monday April 13.  What does all this mean?  Glad you asked, it means that from 6:30am until 9:00pm on Monday April 13 you are to be at the Chick-Fil-A in Trussville, AL eating.  No really, it's that simple eat at the Trussville Chick-Fil-A on Monday April 13 and tell your cashier that you want your receipt saved for Sophie, this part is particularly important.  You MUST tell the cashier "save my receipt for Sophie" and our little Sophie will get 15% of all the receipts saved from that day.  This money will go 100% toward paying Sophie Kate's medical bills, outpatient therapy costs that our insurance doesn't cover (they only pay for 30 visits per year and we go through that in about 4 months), medical equipment, special needs communication devices and therapeutic toys.

We are going to need as much help as possible to get the word out to the community about this special day.  There are so many ways to help out, we are going to need flyers handed out anywhere and everywhere.  If you have a business that we could put a flyer up in or have them at your business to hand out to people, please let me know.  I have lots of baseball connections and one softball connection for help with canvasing those parks, but if anyone has any soccer connections and would hand out flyers there then please let me know, we need someone over there.  If you can let people know at your church via an announcement or posting flyers that would be great b/c our day just happens to be the Monday after Easter Sunday.  If any of you have any creative ideas about spreading the word please let me know, we are in the brainstorming stage right now and would welcome any thoughts or ideas.

Also, the actual day of the fundraiser we are going to need volunteers to be at the donation table that Chick-Fil-A will be setting up for us right outside the restaurant.  We need as many people involved as possible so let me, Theresa Suhr or Traci Collins know if you would be willing to help out in some way.

By the way, it's only February you know so there is really no excuse for you out of towners not to be here, hee hee.  We are Super excited about this, so come on troops I need y'all to mobilize in a big way.

Monday, February 16, 2009

My Tiny Valentine

My sweet, cuddly, tiny Valentine...

She looks like such a big girl in this picture, we were working on sitting unassisted here.

This is how SK looks at me when we have been working on sitting unassisted for too long, isn't that hilarious?  Oh my, I don't even want to know the words that go along with that look.

We have officially completed 3 days on Prevacid (SK's reflux med) now and Sophie has actually done pretty good on it so far.  Thursday and Friday of last week were definitely her worst days, Saturday and Sunday were better for her.  It's also been a few days since she has thrown up although we are not anywhere near the amount of food that she needs to be getting.  We are taking it very slow with her right now.  She is losing some weight but it is minor at this point and we are increasing her food everyday trying to get her back up to the goal for her caloric needs.

SK is definitely weak and tired given what she's been through over the past few weeks.  She's not been herself lately and we have not been able to accomplish much through therapy, which is particularly frustrating to me.  We haven"t even been able to try oral feedings yet after all of our success at the feeding clinic last week b/c of all this mess.   Hopefully the Prevacid will continue to work for Sophie Kate so that we can get her back on track.  There is more therapy and another doctor's appt. still to come this week, we'll see if anyone has anything new to contribute and hopefully I can find some time to spend w/my 4 guys.  Thanks for checking in on us.

Friday, February 13, 2009

SK's Reflux is Back

Yes, it's true, Sophie Kate's reflux is back.  We found out today during the upper GI that the surgery Sophie had in March of 2008 has loosened up some and is allowing her to reflux when her stomach gets full.

Our course of action for right now is to try and treat her again with medications, didn't work the first time so I'm sure we will have great results this time around (insert sarcasm here).  The type of medicine that she has to be on for this takes about a week before you really start seeing the full effects of what it can do (awesome).  This week has not been good for SK and I am not happy about watching her hurt for another week.  It's certainly not as bad as it was before she had her surgery done last year, I am never letting it get to that point again.  I didn't know what we were dealing with then, I know better now, so I do better.

Anyway, if the meds don't work then she will have to have the surgery done again.   I asked the doctor why SK is unable to handle any kind of volume of formula on her stomach w/o throwing it up and his answer was that it wasn't that her stomach couldn't handle it, her stomach can handle it just fine, it's her reflux that can't handle it.  That actually made perfect sense to me, now that we know that her surgery has come loose it makes sense that when her stomach gets full, all of that reflux is free to just go sloshin' up and down the esophagus.  Right now, we are focused on getting her to keep her food down, by once again adjusting her feeding schedule and hoping the meds work for her this time.

That's all I've got for now, hope it makes sense, we are drained over here and just need some healing, peace and calm in our house right now.

Thursday, February 12, 2009

GI problems

Hey everyone, Sk and I went to feeding clinic on Monday (Feb. 9).  It went very well, there were 4 people involved (a nurse, speech therapist, nutritionist and our case manager) and they were all very positive about the experience.  I really thought when they saw SK try to eat that they would say we need to give up on this, that she really was not a candidate for oral feeding, but that was not the case.  Sophie Kate did very good eating for them, she had no choking/coughing/gagging episodes while we were there.  Eventually we are going to be on a schedule of feeding her orally 2 times a day, I say eventually b/c we are getting ready to start Sophie on her new formula.  This new formula will have a higher calorie content than her baby formula, so we won't have to give her as much of the new formula as we did her baby formula to get in the calories that she needs, does that make sense?  Once we get her completely switched over to the new formula (Pediasure) then that will free up some time during the day for her to maybe get hungry and try some oral feedings, we are still probably a few weeks away from getting all of this completely worked out.  It really depends on how Sophie Kate does on the Pediasure, hopefully the transition will be smooth, b/c our first concern has to be meeting SK's caloric needs before we can add other things in, she must be tolerating her feeds.

On the subject of SK tolerating her feeds, well she just hasn't been lately.  Actually over the past 3-4 weeks we have seen a gradual increase in the throwing up of the food. Tomorrow (Fri. Feb. 13) SK will be seeing her surgeon and we will be getting an upper GI to see if the surgery that was done March of last year to prevent reflux is still intact.  Today (Thurs. Feb. 12) has actually been the worst day this week she has only been able to keep down one of her feedings today, so I am glad that they are getting us in tomorrow.  She's been pretty irritable and miserable today.  We need answers tomorrow and I am so afraid as with so many of her doctors appts. that we may leave there with no answers to our questions.  I'll update tomorrow when I can.

Sunday, February 8, 2009

Beautiful Weekend

It has been an absolutely beautiful weekend here in Alabama, mid to upper 60's in Feb. what more could you ask for.  We have spent as much time as possible outside as evidenced by the sleeping red-head that I am sharing a couch with right now, shhh...(it's only 5:45 on Sunday evening).  He's been without a nap today and can't take anymore, he's cute now but he is going to be a bear when we try to move him and he hasn't even had dinner, now that's tired.

Some of the shots from this weekend....

Before we had to call the children in from the backyard tonight, Chad and I were talking about what a fun weekend it was, getting outside after a couple months of being couped up is good for the soul.  You know, there really isn't anything like the sound of children playing outside.  The laughter as they swing, the squeals of being chased in a game of hide-and-go-seek, the sound of leaves (that should have already been raked) crunching beneath their feet all signal that maybe spring isn't too far away.  Miss Sassy loves being outside too so she was truly in her element this weekend.  Maybe her love of the outdoors comes from her knowing that inevitably it is her destiny for the many baseball, football and soccer games that she will have to endure.

This week will hold some new experiences for SK and I, we will be going to feeding clinic, so I will let ya'll know how that goes.  For now, we will try to wash the dirt and stink off these boys and get them settled down for bed, SK and I are apalled at the stench they have brought into this house, more to come later.

Wednesday, February 4, 2009

15 month checkup

Our big 15 month old girl is now up to 22 pounds 12 ounces and is 31 inches long.  SK is taller than 90% of the other girls her age, no big surprise there, huh?  One of the nurses even suggested that she might be taller than the brothers, that would spark some fightin' amongst them I bet.  Unfortunately and very disappointing to us,  there has been no head growth.  Sophie has been at 15 1/2 inches since August.  That's the one I kind of hang my hat on, which I know I shouldn't do, but nevertheless it hit me hard yesterday.  Once again I then have to try and tell myself something to make myself be able to deal with all this, so I tried to convince myself that there wasn't anything different about SK from Monday to Tuesday.  She's still the same sweet girl on Tuesday that she was on Monday, myself is not buying it though.  My goodness, just "throw us a bone" here and this is the "bone" that I want, head growth.

Well, in other news, we will be taking SK off her baby formula.  We are going to be trying her on Pediasure for the time being.  I am not giving up on her oral feedings, we just haven't been able to do that since Thanksgiving for several reasons.  In March we are going to be taking Sophie Kate to a feeding clinic where she will be evaluated for oral feeding by 5 different people, so we will see where that takes us.  I am interested in making some of her foods for her so that she is not constantly on formula and we are going to talk about all of that in feeding clinic.  For the time being though, we are going to transition her off her baby formula to Pediasure and are hoping for a smooth transition.

We spent about 45 minutes with her pediatrician yesterday going over what's been going on and then what needs to happen from here.  Dr. Barron is a treasure to our family, I go in with my list of questions and concerns and he doesn't leave until everything has been addressed, I can't gush over him enough, he's the best!  We talked about the difficulties that Sophie has been having at night lately, just being extremely fussy, sometimes all out screaming and crying, and not being able to fall asleep easily.  Some nights it's taking her 2 hours to fall sleep.  Dr. Barron thinks it's a combination of things that may be causing this, some normal some not so normal.  We have some new medications and some other new things to try over the coming weeks to see if we can't make bedtime easier for her and us.

Sophie Kate actually had a fantastic day yesterday (Tues. Feb. 3).  After her doctor's appt. we went to Bible study and then out to eat with friends and she was perfection, I could not have asked for more from her.  She was very smiley and very aware of silly friends wanting to touch her and play with her.  Miss Sassy knows when she is the center of attention and appreciated all the activity of the kids that were with us.  I really can tell a difference in her when she is around other small children, she is very aware and very interested in them.  We really do need to be around little kids more b/c poor thing, SK is mostly around grown ups and I am starting to think that she thinks we are booooring!

By the way, I stole "Miss Sassy" from a friend who calls her that, it totally fits her, don't you think?

I came across this Bible verse on one of the many blogs that I keep up with...."I am still confident of this: I will see the goodness of the Lord in the land of the living.  Wait for the Lord; be strong and take heart and wait for the Lord."  Psalm 27:13-14.  I really don't know what else to say about this, I want to be confident in this, but I'm not.  I literally feel hope draining out of me and reality setting in and I hate her/my reality and really don't know how to deal with it.  Is He really going to let her be just like they(doctors) said she was going to be?  Mrs. Beth, I would love for someone to tell me what happens when the Red Sea doesn't part.

Monday, February 2, 2009

Quick Update

Let's see, what is going on new here with Sophie Kate?  We have a new Physical Therapist on board with us.  She is going to be a great addition to SK's team.  I was thrilled that Chad was able to go with us to meet her and right off the bat she started giving us new ideas and new things to do at home with Sophie.  I love that, I am always looking for new ideas and innovative ways to work with SK myself and I love those people who are willing to jump in there with me.  We already have an Occupational Therapist that's like that (our beloved Sally) and now we have a PT too.  We will be seeing her once every other week for outpatient therapy.

Also, we will be seeing SK's pediatrician tomorrow (Tues. Feb. 3) for a well baby checkup.  We have quite a bit to go over and discuss with him, so I will cut this post short and post all of her vital stats tomorrow.  Please send big fat head growing vibes our way!!