Sophie Kate’s Journal

Halloween is kind of the signal for me when things started to go wrong surrounding Sophie’s birth last year.  I should actually say that Halloween was the last day for me when life was perfect, normal and happy as I saw it.  So as much as I am trying to focus on the trunk or treat festivals and trick or treating on Halloween night I find that I am not doing a very good job pretending. 

I’ve already been up since 3:30 this Thursday morning and it is so reminiscent of the many many sleepless nights I had after Sophie Kate was born praying and crying in my sleep that this nightmare would be over only to wake up and realize that I was living it.  I don’t really know how to handle the next few days, maybe pretending isn’t that bad of an idea.  My boys have seen me cry enough over her for that matter my own self has had enough with me crying over her. 

Every minute of every day from last year is playing over and over in my mind and I can’t stop it.  I am being sucked in by all those thoughts of “what if.”  “What if” I had gone in sooner, would it have made a difference?  I really shouldn’t be left alone with my own thoughts.  This is not what I want to remember about Sophie’s first birthday.  Maybe I just need to get this junk out now, maybe it won’t follow me for the next week.  I refuse to be like this on Monday.  We had a great party for her this past weekend, I don’t want these thoughts to ruin everything about her birthday.  I want my children to enjoy Halloween and be excited about their sister’s birthday and not have this sadness permeate everything that has to do with her.  I just don’t know how to do that.  So that is where the pretending comes in, not pretending that nothing is wrong but I guess pretending during the day that I am not doing this all night long. 

Hey everyone.  We had a wonderful weekend celebrating Sophie Kate’s first birthday with all of our family.  God really blessed our time together.  We had great weather and a great time visiting with each other.  Sophie Kate really out did herself, she was in the best mood.  She was smiling all day.  She knew she had everyone’s attention that day. 

We had the party at SK’s grandma and grandpa’s house.  Let’s see there were 9 cousins there and 14 grownups so that would have been a bit much for our house.  All of the cousins on both sides of the family got to play together.  We did lunch together and then after more play time did the cake and ice cream thing and then presents.  It was a great day.

Sophie Kate’s cake was actually a cupcake cake in the shape of a #1 all done in pink of course

Some of the shots of the day…

SK got to eat some of the icing.  If you look closely you can see it there on her lips.

Chad and I with our birthday princess!

SK helping open some of her presents.  I love that look she is giving, it is such a sweet face.

One of SK’s presents was a super soft baby doll.

As I said before, God really blessed our day together.  I am realizing that in and amongst the horrible thoughts and memories from the past year God is allowing us to make new happy memories now as a family.  I have a friend that prays Psalm 126:5, “Those who sow in tears will reap with songs of joy” over my family.  Well, we were reaping in songs of joy on Saturday.  Thankfully there were no tears that day only a sweet atmosphere of love and celebration. 

Thank you to our family who drove in from out of town to be with us this weekend.  Thank you to all our family for sharing in Sophie Kate’s special day with us and for loving her and accepting her without reservation.  We love you all!    

Our sweet birthday girl

Hey everyone.  I am finally glad to report that Sophie Kate seems to be doing better.  Her cough and congestion is much better.  You can’t really hear her anymore when she is breathing and that is a good thing.  You really shouldn’t be able to hear a person breathing from across the room.   She has finished the Rocephin shots but I still have no idea what is going on with her ear at this point.  We will go back sometime next week to get that checked out.

So I was cleaning out all the boys closets on Sunday, you know changing out the summer clothes for fall clothes.  I was getting all the hand-me-down clothes out for everybody, even Cooper is getting some hand-me-down clothes from friends that are older than him.  Well, you know who that leaves getting ALL new clothes for fall and winter don’t you, no not me (I know that’s what ya’ll were thinking) of course it is the little princess.  This is all pretty funny to me b/c I still cannot get over all of the different clothing options for infant girls.  It can be an overwhelming and confusing adventure from time to time.  It’s the accessories that get me, you can’t just buy an outfit for a little girl and be done.  There are bloomers and tights and hair-bows, Oh my!  Don’t get me wrong it’s all fun, we just need a separate category in the budget now for SK and I don’t mean the one we already have budgeted for her medical expenses.

The festivities are kicking off this weekend starting the extravaganza that will be Sophie Kate’s first birthday.  We are having her family party this Saturday.  She doesn’t get the day completely to herself though, her party has to be scheduled in and amongst her oldest brother’s flag football game.  She does have to remember that she is one of four so her birthday start time had to be pushed back by 1/2 an hour.  I told her yesterday so that maybe she could be over it by Saturday.  I’ve heard scary stories from friends about the drama and attitude that can surround these girls and SK pretty much has the drama down to a perfected science.

I have been planning this party for some time now and just this week have started buying and ordering things for the party.  Surprisingly to myself I am actually very excited about her party.  I really didn’t know how I would feel, honestly I was quite nervous about how I would feel.  Could I be happpy, would I be excited, could I celebrate in some kind of upbeat sort of way?  Thanks be to God for lifting my soul and allowing me to enjoy this week and hopefully this weekend as it was intended to be.  Most of my family and Chad’s family are going to be coming in to town this weekend and we are really looking forward to seeing everyone and spending time with them.

By the way, SK has rolled over four times this week.  If she keeps this up it’s going to get to the point where it’s not that big of a deal to her anymore, it’s just second nature, I love it!

Hope ya’ll have a great weekend and if any of ya’ll see SK this weekend just know that she will be getting her party on! 

Hey everyone.  I took Sophie back to the doctor again today.  I just didn’t feel like all of this congestion was clearing up and was fearful that at some point it might move into her lungs, we’re going on like 2 1/2 weeks with this now.  Come to find out that her right ear infection is still really bad.  This second antibiotic has not helped either.  So now we go to Rocephin shots.  Rocephin is an antibiotic that is stronger than any of the other ones we had been using.  She will get a series of three shots (today, Saturday and Monday) and then her ear will be rechecked.  If it is still not healed then we will be referred to an ENT (ear, nose and throat doctor) to have tubes put in her ears. 

This is familiar territory for us and probably for some of you too who have had children who have had to have tubes put in their ears due to chronic ear infections, etc.  We went through this with Jacob, he had to have tubes put in his ears twice.  At this point I just want what is best for SK.  If ear infections are going to be something she is going to have a problem with (we have already had 3 over a 6 month period) then I would rather this be taken care of the sooner the better.  This is certainly not the end of the world considering what we have already been through. 

I am getting the cart before the horse a bit here though.  First, we have to get through the rest of these shots and then see if her ear infection clears up.  Also we have been given a new prescription to try and get some of this gunkiness out of her chest.  So hopefully that will work and we can get her over this whole respiratory thang (you have to pronounce that with a heavy twang for it to be said properly).  By the way, my spell checker says that gunkiness is not a word and it wants to correct it for me, but I won’t let b/c it is a word in my world and I know that ya’ll all know what it means, it comes from the root word gunky, right? 

Lastly, a few of you have asked me about RSV and how that might pertain to SK and I finally got a chance to discuss this in some detail with her doctor today.  For those that may not know, RSV is a respiratory virus that effects the lungs and airway.  Anyone can get RSV and get over it no problem, however it can be quite serious in premature babies.  Sophie Kate does qualify according to our insurance for the RSV vaccination called Synagis.  So we will be getting home health nurses to come out and administer that to Sophie in the upcoming months, it is also a series of several shots I am not sure how many.  Praise God that we have another line of defense for all of this respiratory junk that will be getting more and more serious as the fall and winter come on.  I am so thankful for this powerful connection that I have with Sophie Kate.  Please hear me correctly, I am not bragging on it I am thankful to God for it.  He always gives me the wisdom and presence of mind I need to seek medical care for her when she most needs it.  It is just amazing.  I thank Him for the way He is watching over her.  Please continue to pray for Sophie’s healing.

We have been promised a beautiful fall weekend here, cool fall temperatures which means great football weather.  Hope ya’ll enjoy your weekend.   

Well here is a different sort of post than ya’ll have been getting out of me lately.  I had an encounter at the Chick today (Mon. Oct. 13) that was positively and deliberately ordained by God.  Yes, ya’ll heard me correctly “The Chick,” you know that it is the only place people seem to go when all their kids are out of school.  We thought we were going to avoid the madness b/c it was almost 1:30 when we got there, but alas, it was still slammed, but that is not where I am going with this story. 

I’m not going to go into all the details b/c #1 I am still trying to process it all myself and #2 I really don’t think I could do it justice right now.  What I will say is that I met a mother there who has a five year child that is exactly like Sophie Kate.  Isn’t that something, that we would meet up at the Chick on a Monday afternoon on a random day in October?  Also, she is a follower of Jesus Christ.  God ordained indeed!!  We probably talked nonstop for almost two hours, Misty, Stacy ya’ll were there, am I lying?  My friends I am so sorry, I didn’t say two words to ya’ll. 

This new friend has been going through all of this longer than we have since her child is five and she had lots of good advice and encouragement to give and also an “I know exactly how you feel and what you are going through” kind of understanding.  It was amazing.  God was all over that and once again provided what I needed exactly when I needed it.  Wow!

At this point what I have taken from this encounter is what I want to share with ya’ll.  I’m sure there will be more to come, but for now from this encounter I feel like I have heard a word from God.  I have not heard a real live audible word, but I know I do have a real live relationship with a real live and actively working God!

God has shown me through this sweet mother what I have to be thankful for.  May God bless that family, their child has quite a bit more going on than Sophie Kate like constant sickness, bouts with pneumonia pretty much they are so consumed with respiratory illnesses that they can’t even concentrate on therapy for the constant hospital stays.  Please pray for this child during the upcoming “sick season.”

So now to the point of all my rambling, the things I am thankful for concerning Sophie.  I am thankful that Sophie sleeps through the night so that we can all sleep through the night.  I am thankful that Sophie Kate doesn’t not have to be suctioned out 24 hours a day.  I am thankful that Sophie Kate has not had any seizures.  I am thankful that she only has to take one medication one time a day.  I am thankful that Sophie is able to swallow some and that she is able to eat a little bit of rice cereal and fruit every day.  I am thankful that she has rolled over 6 times.  I am thankful that Sophie Kate can move her arms and legs.  I am thankful that she can hear and that she can see some things.  I am thankful that she can cry and I am so blessed and thankful that she can give us those precious smiles.  

So there you have it a positive post b/c I know it has been a while, thanks for hanging in there with me.  I can also honestly say that I truly feel thankful in my heart for all of those things, they are not just words to me.  I feel a lifting in my spirit just to say them out loud and to see them written down for myself.  Lastly, I am thankful for Sophie’s life.  I have come to the realization, thanks to some of my friends and from the Holy Spirit doing a work in me, that if I did not have Sophie in my life, if she had not lived, then I would have given anything to have her here and to be able to take care of her in anyway that I could.

I am by no means where I would like to be in dealing with all this, it is such a painful process, but I do feel like I am aware (thanks Roger) of how I am feeling.  Thanks be to the Almighty One that I am aware when he is actively at work and moving in my life.  

“Devote yourselves to prayer being watchful and thankful.”  Colossians 4:2

Who would have imagined all of this coming out of lunch at the Chick, God really does work in mysterious ways, doesn’t He?

Hey everyone.  Everything is starting to settle back down here and is beginning to resemble what we have come to know as normal for the past 11 months.  Sophie Kate seems to be coming out of her funk and is now acting more like herself, some of her sweet smiles have slowly been returning today (Fri. Oct. 10).  We are tired but we are recovering. 

Sophie was actually able to get back to some of her therapy yesterday and today, much to her displeasure.  We haven’t done any therapy for almost a week and I can really tell it.  She is awfully stiff.  We have definitely got to get back into our routine.  Sorry sweetie. 

We did get out to the park for a little while today.  It was good to get out, b/c Children’s Hospital and doctors appointments don’t count as “getting out.”  Grey was cracking us all up.  He kept coming over and taking my shoes off and then went running off with them and he just thought that that was hilarious.  At least he didn’t put them on while we were at the park, b/c that is what he does with them at home.  Should I be concerned about this sudden interest in women’s shoes?  Anyway, it is a really nice day here today and I think we all enjoyed our time out.

I wanted to leave ya’ll with a few new pictures, this was of course prior to our recent sickness when SK was actually feeling like and participating in therapy.  She is sitting in her bumbo, which is a rare moment in and of itself b/c she hates the bumbo, and she is looking at the book “Brown Bear, Brown Bear.”

The next shots are of SK the first time she sat in her high chair.  We are always looking for new spots where she can sit and play or where she can just sit and be a part of the family.  This is a great spot for her to sit with us during dinner, so that everyone can start seeing her as a member of the family that can participate and be involved.  I love it!

So it turned out then that everyone wanted to have their picture made with Sophie Kate.

Cooper and Sophie Kate

 Jacob and Sophie Kate 

Wow, does he ever love her, can’t you just see it all over his face?  What a heart this one has!

As I said, everyone wanted a picture with Sophie Kate.

Grey and Sophie Kate

By the way, SK rolled over 2 times today!  That brings her lifetime rollovers to 6 ( if anyone but me were counting)!!

Hope you all have a great weekend!

We went to the pediatrician today (Wed. Oct. 8th) and found out some interesting things.  Sophie Kate’s ear infection is raging, the antibiotics that she had been on have not done anything to help things.  The doctor said it is red and bulging and should be quite painful to her.  So that may explain a lot of her out of character fussiness and irritability over the past few days.  Also, the doctor heard some wheezing in her lungs and felt like this stuff has moved some into her chest.  Overall, her lungs sounded good they just noted some wheezing.

We were sent home this time with a new antibiotic for her ear infection and then a machine to administer breathing treatments at home for her.  My thoughts on all of this is that she is definitely better than she was on Sunday when she was admitted to Children’s, but not any better than yesterday evening when we came home, just about the same.  SK did have another good night last night, so we were all able to get some much needed rest. 

My mom has been so kind to come a help me for a few days and that has been such a blessing just to have another set of hands around here.  Sophie Kate is really requiring a lot out of us these days as well as the other 3 that need our attention too.  Please continue to pray for Sophie to get better and better everyday.  She just isn’t my smiley (is that a word?) happy baby these days.

Yeah, we’re home.  We came home about 7:30 last night, with the promise that we would take Sophie to see her pediatrician either today (Tues.) or tomorrow. 

Sophie Kate had the most restful, peaceful night.  I am so thankful for that, she really needed it and so did the rest of us.  I wasn’t sure what kind of night we were going to have, but as some of you said “A bad night at home is way better than a bad night at the hospital.”  I totally agree.  I really think she was so glad to be home and to be in her own bed.  She rested and slept so well, no awful crying, no choking episodes and very few coughing fits.  She is still quite congested so we will see what today holds, but at least we get to spend today at home!

Thank ya’ll for caring and praying for us.

Well, we had pretty rough night here last night.  Sophie Kate decided that she wasn’t going to sleep any longer than 1:30 and that would be a.m. so of course neither did I.  Poor thing she was coughing and sneezing, choking and gagging and all that gross stuff and she just never could sleep for any amount of time.  She actually seemed a lot better this morning and thank goodness her lungs still remain clear.  This afternoon though she seemed to go downhill a bit.  Lots of the aforementioned gross things as well as crying real tears.  As many of you know, crying real tears means “I’m really hurting here” in Sophie language, she saves those for pretty extreme circumstances.  Seeing those tears run down her face made me just ache all over for her. 

So where do we stand now?  Well, we still might get to come home tonight.  As it has been all day, they just want to watch her for a couple more hours.  They have a “couple of more hours” me to death today.  As far as I’m concerned we’ve been waiting to go home since 9:oo this morning, but I do appreciate the diligence they have all shown here.  They have really been on top of things concerning her lungs and her airway and everything.  When we do finally get out of here we will be going home on some new meds but they are only temporary, just for the next two weeks and we will be taking a suctioning machine home as well.  The doctors feel like to get her over this she will need some additional suctioning of her nose and mouth over the next few days and they certainly didn’t want us to have to stay just for that reason and neither do we.  So another new piece of equipment but whatever it takes, right?

It’s now all up to SK, isn’t that always the case with her.  Hopefully my next post will be from home, but that will have to come tomorrow b/c even if we do get to leave tonight it won’t be until after 7:00pm.  I really want to sleep in my own bed tonight, but even more than that I want SK to sleep in her own bed and me in a separate room in my own bed.  You get no sleep sharing a room with that girl. 

Thanks for you faithfulness in prayer.  I will pass along more information when I have it. 

Hey everyone.  It is true that Sophie Kate was admitted to Children’s this morning (Sunday Oct. 5), due to difficulty breathing b/c of an upper respiratory infection, a virus and a right ear infection.  Well, the right ear infection really doesn’t have anything to do with anything but nevertheless she has one of those too. 

She’s been coughing a bit since Thursday, but no fever, nothing seemed to be getting any worse, she was pretty much acting like she normally does.  Saturday we noticed she was coughing and sneezing more and had a few choking episodes and then she had a real rough time Saturday night.  She was coughing and sneezing to the point that she couldn’t sleep, she was crying and choking really bad and all of those things that you hate to see your children go through.  Early this morning then is when we noticed that she was really having difficulty breathing and we could feel all that stuff down in her lungs and in her chest when she was breathing.

So that is when we called her pediatrician and were hoping for maybe a trip to an after hours clinic, a breathing treatment and an antibiotic and then a trip home.  Of course nothing can ever be that simple with SK, they thought it would be best for her to come downtown to the Children’s ER and now here we sit.  On the bright side, her chest xray was clear so one of our biggest fears which was pneumonia has now been ruled out. 

She has received some breathing treatments, steroids and antibiotics since she has been here and they are also monitoring her oxygen saturation which will be our biggest indicator if she starts having difficulty breathing again also the breathing treatments seemed to have helped her some.  They have told us that their biggest concern is her airway, it is very constricted due to the uppper respiratory infection and that is what is making it so difficult for her to breathe.

I am not sure at this point what the plan is for tomorrow.  We were told if she was better we would probably get to go home.  However, tonight is not getting off to a very good start.  She is acting the same way she did last night with lots of crying, coughing and irritability, pretty much just unconsolable.  So we are going to get some pain meds in here and see if those can’t help to get things under control.

Please pray that we can get this respiratory stuff under control, this is one of my fears concerning her.  Please pray that she is much much better tomorrow and that we can come home, but only if it is safe to.  We want to come home sooo bad but not to the detriment of her health of course. 

Thanks so much to our family and friends who offered to and did drop everything to help us today no questions asked.  We could not do this without ya’ll.  I thank God for you.  I will update when I have more information.