Life is Good

It's been over three weeks now since Sophie's surgery and life is good.  She hasn't had any seizures and we are thrilled.  She will remain on all of her medications for six months so that her brain can heal.  By not adjusting any of them for her weight gain in the coming months she will very slowly wean off of them some.  Then in late May the neurologist plans to start weaning off of them more and see what happens.  It is so nice just living life normally.  Sophie is back to eating and sleeping well.  She has slept through the night for the past three days!  Her day sleep is still hit or miss.  Last week she took great naps, but yesterday she cat-napped all day.  She's so tired at the end of the day when she cat naps!  But, that's just normal baby stuff so we can deal with it. :)  She has started rolling over some and grabbing for toys while laying on her playmat.  Her left side is still a little weaker than the right, but she seems to be gaining more strength each day.  We see lots of smiles, coos and Kayla even got her to laugh yesterday.

I have started the process to get her assessed by the Early Intervention program in our county.  Her pediatrician would like her to start physical therapy for the weakness on her left side (since the surgery) and also her neck muscles seem to need some help since she still doesn't pick up her head much when she's on her stomach.  She moves it back and forth and is starting to look like she's trying to pick it up, but I feel like she could use a little help in that area.  The therapists will come out and do the assessment this week and then set up a plan for physical therapy.  The best part is that it will be done at our house so we won't have to drive anywhere for it. 

Kayla and Madelyn are loving school and doing well.  Kayla got her first report card and did AWESOME!  We are so proud of her, especially with the past three months being so stressful for our family.  She blew away her PALS testing which is the phonics assessment they do three times a year.  The benchmark for kindergarten in the fall is 28 points and she scored 71!  The benchmark for the end of the kindergarten year is 82 points so she is way ahead.  Again, we are so proud.  Madelyn is learning letters in preschool and loves playing with her friends.  Her favorite things to do at home are coloring and puzzles.

Mike and I finally feel like we've settled into a routine with our three girls.  It's a crazy life, but wonderful!  Thank you for all your prayers and support.  It feels good to have life feel THIS GOOD!

Home Again

We are home again.  It's been a week since Sophie's surgery and so far we've seen no seizures.  This has been the ultimate goal so we're hoping it lasts!  She's still on all the same medication and will be for several months before they try to wean her off of some or all of them.  I'll find out more about that at her neurologist follow up on Tuesday.  She's recovering well...still a little off with eating and sleeping, but improving each day.  The most frustrating thing she's doing is that her naps rarely last longer than 45 minutes (on the dot!) but as a mom of three I know that this frustration is a normal baby thing and has nothing to do with all the medical struggles we've been through!  While Kayla and Madelyn were better nappers at this age, they both went through phases of this at other ages.  I am trying to get Sophie on a more regular routine with eating and sleeping, but with her it seems a little harder since we are on the go more and she just isn't as consistent with things.  She is still recovering though and I have to remember that.  Overall, she is pretty much back to her usual self and is such a sweet, calm baby.  It's hard to believe she is already 3 months old and at the same time it seems like we've been doing all this for so much longer!

Kayla was back in school this week and we had some extra time with just her since Madelyn has been with Mike's parents all week.  We decided to leave her there for awhile longer so we could ease ourselves into life back at home while Sophie is recovering.  It's been so quiet around here without her!  She'll be back today and our whole family will be at home once again.  We're hoping that the coming months will be much calmer than the past three months now that the surgery is behind us.  There are still no guarantees regarding seizures, but we are hopeful.  God has led us this far on our path with Sophie and we have full confidence that He will continue to show us the way.  It may not be the path we would like, but it is His perfect plan for her and us that we must trust.  I have struggled with this all along, but remain steadfast in my faith.  It hasn't been easy, but it certainly would be harder without relying on Him to hold us up during difficult times. 

I am doing better.  The anxiety medicine has helped a lot and the changes we've made to our daily routine around the house has made life much easier for all of us.  I look forward to being at home long-term without the looming of a stay at Children's in the future.  With the holidays approaching we are very thankful for so many blessings in our lives, especially all the family and friends that have been praying for us and supporting us.  We can't thank you all enough.

 ‎"...being strengthened with all power according to His glorious might so that you may have great endurance and patience..." -Colossians 1:11

Surgery Update

Sophie is out of surgery and resting comfortably in the PICU until tomorrow.  The surgery went well and the surgeon was able to remove the tuber that seemed to be causing the seizures and some surrounding tissue.  Once it was removed they didn't see any more abnormal activity in that area.  We are hopeful that she won't be having seizures as a result, but that will take time to find out.  They have her on two additional seizure medications for the next several days just to make sure things in her brain are calm while she's healing.  We were able to see her and she was moving around and pretty fussy.  They are giving her Tylenol for pain and will also give her a small amount of Morphine if it seems necessary.  Tomorrow she will have a ct scan to make sure there isn't any hemorraging or any other issues and if all looks good she'll be moved from the PICU to a regular room.  The surgeon thinks that she could be discharged as early as Monday, but we'll see.

I've been strangely calm today.  I kept telling Mike how I just didn't feel anything...nervous, scared, emotional...nothing.  He said that's what it's like to be calm and I agreed that he was right.  We had full confidence in her doctors, especially her neurosurgeon who we have the utmost respect for.  He has been an amazing resource and support during this difficult process.  We spent some time with her and are now back at Mike's parents house to rest.  It's been a long day getting up at 4am and a lot of waiting.  I'll call for updates tonight and we'll go back tomorrow morning to spend the day with her.  She needs her rest and so do we.  I'm still trying to get over this cold I have.  Hopefully I'll be feeling better tomorrow.

Thank you for your prayers and ongoing support.  God continues to guide us through this time and we are so grateful for the people He has put in our lives to love and support our family.

Sophie's Surgery

We have scheduled the date for Sophie's brain surgery.  It will be on Friday, October 22nd.  It is overwhelming that this is happening so quickly, but we know it is best for her.  We are so hopeful that it will be life-changing for Sophie and for our family.  The ultimate goal is that she will be seizure-free, but it would even be good if she had to stay on seizure medication that controlled them completely.  The outcome remains to be seen and since there are six tubers on her brain and they are only removing the largest one that the seizures seem to be coming from, there are no guarantees for the future.  But, it's the best thing we can do for her right now.  Kayla and Madelyn will be spending a long weekend with their cousins in PA and then Kayla will come home to go back to school while my mom stays at our house to get her on and off the bus and take care of her.  Madelyn will continue to stay with Mike's parents until we come home with Sophie.  I am working on seeing if Mike and I can stay at the Ronald McDonald House near Children's so we don't have to drive in and out of DC each day.  There have been many offers of a place to stay for us, but I am going to try looking into this first as we want to be near Sophie, but have a place to get away from the hospital when we feel the need to. 

Sophie is doing well, despite her seizures.  She is almost 11 weeks old, weighs over 12 lbs and has started sleeping through the night most nights!  That has been a blessing even though I have to give her medicine around 4:30am...she sleeps through it and I go back to sleep.  I have been having a hard time with anxiety lately though and it's been hard on all of us.  I think it's been building over the past weeks, but for some reason scheduling her surgery pushed it over the edge.  I spent the weekend in pretty bad shape, but have also started on anxiety medication that should kick in in the next couple weeks.  Mike and I have talked about some ways we can change our daily routine, especially in the evenings, and I think it will help things a lot.  I've also asked our next door neighbor's daughter to start picking Kayla up at the bus stop which has alleviated some stress for me since sometimes Sophie is sleeping or Madelyn is grumpy after getting up from her nap.  It's hard for me to ask for help, but I'm getting better at it.  I have to remember that yes, I can do all these things I'm asking help with, but it will make this season of life easier if I let those who want to help do so.  Thank you to everyone who is doing so much to make our lives easier. 

Please keep us in your prayers in the days leading up to Sophie's surgery.  Madelyn has been acting out more lately which I think is in part due to her sensing my anxiety.  Kayla seems not as affected, I think because she is at school most of the day.  It's hard knowing that my mood and feelings are affecting my children, but given the situation I have had to accept it and move on making the best choices we can for them.

In my devotional over the weekend I came upon this Scripture which made no sense to me at the time, actually frustrated me reading it that day.  Today it makes so much sense as I've seen this anxiety bring me to my knees feeling weak, but forcing me to find strength in the things I can control in my life!

"...for when I am weak, then I am strong." -2 Corinthians 12:10 

Why Me? Why Not?

I have been feeling sorry for myself lately.  I have days that are good and days where I just break down from all the mental stress.  Day-to-day things have been okay.  It's still overwhelming to me at times adjusting to three kids and the new routines we've established in the past month with the older two starting school.  Everyone has settled into their routines well it seems, but me.  I go through the motions each day, but still feel uneasy a lot more than I would like.  We don't have much to update about Sophie's upcoming surgery.  She's still having daily seizures, small ones, but her neurologist hasn't changed her medication lately since we are moving toward surgery.  We had a meeting with the neurosurgeon on Wednesday and he gave us the information we needed regarding the actual surgery and answered a lot of our questions.  He was going to get in touch with the neurologist and discuss what would happen next and then we were supposed to hear from the neurologist.  I didn't hear from him by the end of the week so I'm hoping to get in touch with him on Monday.  It seems like we'll be scheduling a date for surgery sometime in October, but nothing is set yet.  Will keep everyone updated as we know more.

So back to me.  This blog has become very therapeutic for me and today feels like a good time to use it for just that.  It's interesting how a situation like this affects different people in different ways.  I feel like the part that is the hardest for me is being completely out of control of certain things.  There is so much of our life with Sophie that is normal that I can easily forget that she has TS and has the problems that she does.  Then she'll have a seizure and it brings me back to reality.  Or I'll go a whole day and seizures won't bother me and the feelings will hit me as I'm dosing out four different medications to give her before bedtime.  I have moments that I just want it to all go away.  It makes me angry.  It makes me sad.  It makes me question, "Why me, God?  Why us?  Why Sophie?"  And every time the answer that comes to mind is, "Why not?"  In talking about this together lately, Mike has made the point that really we have never had to go through something really difficult like this in our married life or otherwise.  He's right.  We've been so blessed.  And we still are blessed to be going through this time with the amount of love and support that we have.  Some people don't have the amazing family that we do who will drop everything to be wherever we need them to be and do whatever we need them to do.  Some people don't have great health insurance like we do.  Some people don't have the strong marriage that we do and wouldn't be able to survive this together.  Some people don't have our faith and have nothing to hold on to in the most difficult moments.  We have so much in the midst of a situation that is so hard.  So why not us?  It helps put things into perspective.

I've been reminding myself that I don't have to feel comfortable with it all yet.  Or even feel okay with everything.  Sophie is 2 months old now.  It's only been 2 months that we've been learning about TS, how to care for her, facing brain surgery for her, and trying to figure out how to do all this while leading a day-to-day life with our family.  I feel like I should have it all together by now.  This is where the lack of control bothers me so much.  So I grasp on to my faith and pull out my journal of Scriptures and quotes that people have sent me or that I have found on my own.  And I find peace.  I don't know how people go through things like this without God.  Even when I'm angry and having words with Him (aloud at times!) it feels like I'm not alone.  I know that I'm not alone.  Yet, sometimes I feel like the only one that has this situation in my face 24 hours a day and it becomes all-consuming.  So I continue to pray and go through the motions each day knowing that one day things will not feel so out of control.  We have high hopes that Sophie's surgery will be life changing for her and all of us.  There are no guarantees and the issues she faces with her diagnosis will remain to be seen.  But, there is hope in that.  I am learning the art of true patience.  Sophie will show us what she can do and who she will be.  We will learn to care for whatever needs she has and love her unconditionally.  It will get easier in time.

In the past I have prayed for my faith to be strengthened as I built a stronger relationship with God.  I prayed for Him to use me for His purposes, to be able to do things for His glory.  Today it hit me that my prayers have been answered.  Not exactly in the way that I had in mind, but in the way that He has planned for me and others.  I have been able to witness my faith to others during this time.  I'm growing closer to Him each day in just the conversation that He and I have amidst my ups and downs.  I truly feel that He is using me as a vessel and that one day I will look back and it will make more sense in retrospect.

If you're still reading this I am thankful.  Each and every one of you are such a blessing in my life.  We are not the only family going through a difficult time.  People go through things that are much harder.  So I need to stop feeling sorry for myself.  Stop asking, "Why me?" and start looking toward the day that I will no longer have to go through the motions of day-to-day life and really feel like I'm living again.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." -Jeremiah 29:11

A New Beginning

Sophie is now 8 weeks old!  She will officially be 2 months old on Tuesday.  She is smiling, cooing, and becoming more interactive...especially in the evenings before we put her to bed.  She's adjusted well to bottle feeding, since I made the decision to stop nursing after her hospital stay a couple weeks ago.  She's also sleeping very well at night.  Most nights she's in bed by 8:30pm, up around 4:30am for a bottle then back to sleep until 8am!  This gives us a chance to get Kayla and Madelyn up and ready in the mornings before she wakes up.  Life has been manageable lately, but Sophie is still having daily seizures.  For the past week or so we have seen 1-2 short ones each day that have not been concerning and have not had to be stopped.  It is easy to forget her diagnosis when we go through calmer periods like this.  Yet, in the past two days she has started having clusters of seizures in the late afternoon.  Yesterday she had five short ones in the span of an hour and I ended up giving her medication to calm things down for her.  It's been hard for me that we had such a calm week and then a couple days where I've started feeling uneasy again.

We are moving towards surgery sooner than expected.  In speaking to her neurologist yesterday he doesn't see the cluster seizures as reason to change any of her medication, but did say that the epilepsy team at Children's has been discussing her and in their recent meeting feel that it is time to start taking the steps toward surgery to remove the largest tuber on her brain.  This is the one that they found during EEG monitoring is causing most or all of the seizures.  The neurosurgeon originally said that he would like to see her be 4-6 months old before operating, but with being on three seizure medications and never completely having them controlled he agrees that we are at a point that surgery is acceptable.  We would just be continuing on this path of adjusting medication and watching/waiting until she's older.  So today after speaking with both the neurologist and neurosurgeon we have an appointment on Wednesday morning to discuss the surgery, what it will entail, when it will happen, etc.  We don't have a firm timeframe yet, but think it will be sometime in the next month. 

Mike and I are apprehensive, but hopeful.  The thought of Sophie having brain surgery at such a young age is hard to accept, but if it can lessen or even stop her seizures it would be life changing for all of us.  We feel that we are on the path that has been set before us and that God is guiding us every step of the way.  My continual prayer is that the doctors are guided to make the best decisions possible for her care and that we are given what we need to care for Sophie day to day.  Surgery will mean that our daily lives will be hectic again and we probably won't all be under the same roof for a time, but we know we will get through it.

Please pray for us as we move toward Sophie's surgery.  It is all very overwhelming, but we continue to take life one day at a time.  We feel so blessed to have been home together (again) for almost two weeks and hope that we'll be able to do so until the surgery.  I'll update again when we know more.

Lazy Saturday

It's nice to be able to actually say we are having a lazy day at home.  This is the first Saturday I've felt like we can just go about our usual routine without wondering what will happen next with Sophie.  She hit a milestone yesterday.  We have gone one full week without a seizure that has to be stopped with emergency medication.  She's never gone that long in her entire 7 weeks.  Her medication finally seems to be controlling most of her seizures.  She has a couple small ones each day, but they are so small that it's just a twitching movement of her arm that lasts no longer than 30 seconds.  This is such progress.  It'll be interesting to see what her neurologist says at our follow up appointment on Monday.  If life could stay like this it would be manageable.  Things are becoming more routine for us.  We are getting used to the early morning rush of getting Kayla off to school and now getting Madelyn to preschool three days a week.  I'm back to going to my MOPS events and started a new Bible study as well.  It feels good to be doing normal things again.  Last night we revived our Friday movie nights with Kayla and Madelyn.  We used to look forward to this each week before Sophie was born and have had a hard time getting back to it. 

Sophie is becoming more alert and interactive.  Kayla and Madelyn tell me that she "talks" to them.  They love to make her smile.  She is definitely our calmest baby of the three.  Really only cries when she's hungry or tired.  I'm starting to feel more comfortable having a little baby in the house.  The hardest part of all this has been figuring out how to make it all work in meeting the needs of all three kids throughout the day.  Yesterday afternoon, Sophie was hungry right when we needed to leave to get Kayla off the bus.  So I found myself walking us down to the bus stop holding her in one arm, a bottle in the other hand, with Madelyn holding on to my pocket.  Multi-tasking has taken on a new meaning!  I know that things will get easier as Sophie falls into more of a routine with feeding and sleeping.  For now I just take each day as it comes and put the previous day behind me, moving forward.  It feels good to have a sense of peace about things most days.

Today will be packed with college football in our house.  The TVs are all set up and we have our Hokie shirts on hoping it will help VT to actually WIN this game.  We were proud of JMU last weekend, but what a hard loss as Hokie fans!

Home Again

I'm sitting here writing this while Sophie naps in her swing.  She was discharged from Children's yesterday and home by late afternoon.  So begins the adjustment BACK to being at home.  We had been settling into a routine last week when things got crazy.  She is now on a medication to keep her heart rate normal...which brings her to four medications total.  I think I'm becoming qualified as a pharmacist. :)  The dosages for her seizure medications have all been increased since she is growing quickly and they need to keep a certain level of them in her bloodstream.  The seizure medications are given during the day (two of them twice a day, one of them three times a day), but this new one for her heart rate has to be given four times a day which means giving a dose overnight.  I was not happy about this!  It seems so wrong to wake a sleeping baby even for medicine.  But, it is what we have to do and hopefully only for a couple months until they are able to change the dosing to three times a day.  It went well last night.  I have to set my alarm to wake up and give it to her and actually she hadn't woken me up by 2:30am when I gave it to her.  My frustration will come when she is sleeping through the night eventually and I have to disturb her to give her the overnight dose.  But, we'll deal with that when it comes.

She is doing well.  Had a couple small seizures while at Children's, but nothing major.  We have a neurologist follow up on Monday and then a cardiology follow up in two weeks so I'm hoping to get some more information about where we go from here.  It was hard to get all the information we wanted with having her in the hospital over the weekend b/c the regular doctors aren't there.  For now though we are just happy to have her home again.  I'm praying for some calm and peace for all of us and looking to jump back into a routine of school and activities.  The music class I take the girls to starts on Friday and Madelyn is looking forward to it.  And it would be nice to have an uneventful weekend at home to watch some college football!

Sophie is becoming more alert at almost 7 weeks old.  She looks around at everything and is smiling more and more.  Kayla and Madelyn love to interact with her and "read" her books.  Madelyn keeps asking when Sophie is going to grow up and be fun.  While they love their little sister they are seeing the reality that a baby this young is not as fun as they thought.  Even I have to agree with them!  I love all my babies, but this stage of life is not my favorite and I enjoy them more when they are on more of a routine and are more interactive. :)

Please continue to pray for peace for our family and healing for Sophie.  Her journey continues and we learn more each day about how to care for her.  We appreciate all the love and support from everyone.  The best way people can be of help to us right now is with prayer.  We promise to ask for specific help when we need it!  God continues to guide us as parents to make the best decisions for each of us in each situation.

Back at Children's

"Many are the plans in a man's heart, but it is the LORD's purpose that prevails." -Proverbs 19:21

This was the verse in my devotional today and is it ever appropriate.  It was just what I needed this morning after the day we had yesterday.  Sophie had a seizure at about 9am yesterday morning and with two doses of Diastat (emergency medication) it wasn't stopping.  I was nervous, but not panicking, and put her and Madelyn in the car and drove to the ER.  By the time we got there the seizure had stopped, but I took her in to get checked out anyway.  Once they hooked her up to the monitors they found that her heart rate was way too high...in the 280s.  She wasn't showing any signs of distress so I would've never known had she not had a seizure that couldn't be stopped.  The heart rate spike was surprising b/c she has never had this before, but not shocking as she's been monitored for the possibility of this happening.  She has been followed by a cardiologist all along for the tumors on her heart and we have known she also has a condition called Wolfe Parkinson White (WPW) where there is an extra pathway in the heart for electricity to move through.  This puts her at risk for something called SVT which is basically a very rapid heart rate.  Up until this point she has never had any SVT episodes, but yesterday it became an issue.  The ER visit very quickly became a cardiac event rather than a seizure event.  It took them about 2 hours to get an IV into her since she has been stuck so many times in her 6 weeks of life that there just aren't many veins to get a line into her.  Once they got the IV in place they gave her a medication that successfully lowered her heart rate.  The ER doctor was in contact with her cardiologist at Children's and they decided to transfer her there for observation while they start her on a heart medication to keep her heart rate steady. 

The day was exhausting.  I went from making a grocery list to rushing to the ER in a matter of a half hour.  We ended up getting Kayla out of school a little early and packing up to stay at Mike's parents for the weekend.  We went to see Sophie last night and she was stable and doing well.  We were at Children's for a couple hours today and it looks like they'll keep her until Monday so that both cardiology and neurology can do their consults and establish a plan from here.  She'll go home on the heart medication which means she'll be on four medications total (3 for seizures, 1 for SVT).  It's hard having her back in the hospital, but we know she is in good hands and I'm going to use this opportunity to take care of myself and get some rest.  The mental and physical stress of the past 6 weeks is really catching up with me.  We had just started settling into a routine at home and now things are up in the air again.  Hopefully we'll be back at home soon.

One of our pastors spent some time with us at the hospital today and she made a point that touched both Mike and I.  She said that in this uncertain time in our life we are going through a "sprint" phase right now.  As time goes on and we learn how to manage Sophie's medical issues long-term we will eventually enter the "marathon" phase.  While it may not be easy, we will learn with time how all this will integrate in our lives and it won't always be so hectic.  It is comforting for us to look to the future in this way.  I struggle with wanting stability, certainty, and answers during this time.   Yet, we have to trust that God has a plan for us and for Sophie.  A perfect plan.  He is with us always and His plan will prevail. 

Our New Normal

Today was Mike's first day back at work...and we survived!  I knew that we would, but have been nervous about today for quite awhile.  It's still an adjustment having Sophie home.  Hard to believe that it hasn't even been two weeks yet.  Our littlest girl is 6 weeks old today.  She's a pretty calm baby, is sleeping well at night, and likes to be held a lot during the day.  I am figuring out more each day how to be a mom to three kids and am finding that this is a harder adjustment than Sophie's medical issues.  I feel like I'm running around like a crazy person most of the time trying to get things done around here!  It'll all become routine in time, I know, and each day I figure it out more and more.  Madelyn started preschool this week and LOVES it.  It's strange to drop her off and go back to the car, just Sophie and I.  I am trying to be less "on edge" with Sophie, but still have periods of time when I just feel uneasy b/c I don't know what to expect next from her.  I have to learn to enjoy her and stop anticipating the next seizure, how I'll handle it, etc.  Her medication has been adjusted quite a bit in the past week and we're seeing less of the longer seizures, but still some clusters of shorter ones or sporadic shorter ones.  This seems like some progress, but we're still seeing seizures at home with her on three different medications, and the neurologist is not satisfied with that.  I keep in close contact with him, updating on when she has seizures and he responds with dosage adjustments.  It makes me uneasy at times not knowing what to expect, but I remind myself that one of the lessons we seem to be learning throughout all this is living life "one day at a time".  This is easier said than done for me and accepting this in our lives lately is hard.  I'm not sure I've truly accepted Sophie's TS diagnosis at times.  I know it is a reality, but still have a hard time with it.  The unknown in her condition is so scary to me, yet Mike and I both believe that it is a blessing and are very hopeful that we don't know what will happen...we have to just wait and see.

I'm hoping that this new normal routine of ours will soon feel normal to me.  I have days where I long for my "old life" b/c it seems so easy in retrospect.  Yet, the grass is always greener on the other side.  God has placed Sophie and all that comes with her in our lives for a reason.  It can be all-consuming for me lately, but I continue to pray for the strength to get through the hard moments and the peace that will allow me to enjoy my baby girl and our new family dynamic without feeling so uneasy most of the time.  Off to bed...sleep is a luxury lately! 

Our Circus :)

Sophie has been home for a week today.  It's been an adjustment...at first to having a newborn at home and working through the initial anxiety of when she might have her next seizure.  The first couple days were exhausting for me since she had her night and day mixed up and was up every hour at night yet slept all day long.  That seems to have worked itself out and now she's sleeping 4-5 hour stretches at night only waking up once or twice!  It seems so early for her to be doing this with just bringing her home, but I have to remember that she is 5 weeks old and that this was her routine in the NICU.  She's had several seizures while at home and we've had to give her emergency medication three times so far.  Her "pattern" seems to be similar to when she was in the NICU...just over 48 hours with no episodes, then a day with one or more, then another 48 hours of quiet.  The neurologist has adjusted her medication twice and we're hoping to see a difference in the coming days.  Overall she's a very easy baby...much calmer than Kayla and Madelyn at this age.

Our house has become somewhat of a three ring circus for me...literally!  The hardest part of adjusting in the past week has been realizing that we have THREE KIDS!  I've been getting back into the routine of living at home again after a month of living with family and commuting to a hospital.  We're still working on a morning routine for getting Kayla out the door to kindergarten and Madelyn starts preschool on Tuesday so that will be another factor to add in.  It's amazing how adding a third child has made me feel like I just don't know where to begin getting it all done!  I've been assured by my friends with 3+ kids that this is normal and things will settle down eventually.  Really, Sophie is not the hard part...it's keeping up with the other two that wears me out.  Mike will go back to work on Wednesday and with my MOPS group starting up again and a Bible study I want to do I think our days will be more full and we'll fall into a routine.  I know it will take time and patience.

My dad drove up yesterday to meet Sophie for the first time.  He'll be staying with us this weekend and we'll also be getting a visit from Mike's sister's kids who have yet to meet her too.  College football has started and we are so excited!  Mike is going to the VT/Boise State game at Fed Ex on Monday and while I'm a little jealous not to be able to go too, I'm so glad he gets to do this. :)

Hope everyone has a wonderful holiday weekend!

A Good Day

"This is the day that the Lord has made; let us rejoice and be glad in it." -Psalm 118:24

I began today by posting this verse as my Facebook status.  And honestly, I wasn't feeling it at all.  I needed some inspiration though, knowing that the day would be a busy one.  We had two follow up appointments today for Sophie in Fairfax at the Children's Hospital Outpatient Center.  One with the neurologist and one with an opthamologist.  Having no idea what to expect from either I assumed they would be as overwhelming as the past month of information has been.  It turned out that both of them went well, were very routine and I feel calmer tonight than I have since before Sophie's birth.  I really like Sophie's neurologist.  He specializes in Tuberous Sclerosis and just has a calmness about him that puts me at ease.  We reviewed her seizure activity since discharge as well as her current medications and then just talked about where to go from here.  He decided to up one of her medications a bit starting tonight.  His goal is to have her seizure-free at home and said that there is still room to up some of her medications before adding anything new.  While he sees surgery in her future as a strong possibility his goal right now is to manage her as best as possible on medication.  And we are happy with that.  He wants to follow up with her in a month.

The opthamologist dilated her eyes and found nothing concerning on her retinas (TS can cause tubers there too) but will want to follow up with her in 4 months.  He also mentioned that Sophie is very farsighted in both eyes, equally, but that was something she could outgrow and it was unrelated to TS.  This is something that Mike and I both agree isn't a concern at this time and even in the future.  I mean, how many people really ever know how well their one month old can see?  We'll deal with farsightedness later on if it even becomes an issue.  Funny how things get put in perspective in a situation like this. :)

I left these appointments with a sense of peace that things are going to become more routine and manageable with time.  Today I laughed more and caught myself NOT thinking about everything that has been going on in the past month.  I realized at one point picking up Sophie that I actually looked at her and saw HER...not a potential seizure or a lifetime of challenges.  That's something I've been struggling with since her birth.  Seeing her as a person, our daughter, and not a diagnosis.  Mike said to me today that we need to start really enjoying Sophie like we did Kayla and Madelyn when they were this age.  It's been so hard to do that amongst it all. 

Sophie's past couple days have been good.  She had several seizures on Saturday and one of them had to be stopped with the emergency medication.  I had to do it myself since Mike wasn't home and afterwards I felt much more confident.  She didn't have any seizures yesterday or most of today either.  This seems to be her pattern...a day where she has one or more, then two days of quiet, then maybe a small one, etc.  She had a short one this afternoon and it was the first time I felt like we handled it without panicking at all.  Slowly but surely we're getting better at this.  Everyone has said that we would, but it is finally sinking in that we can do this.  Or maybe it's just with me. :)  Mike has been my rock and such a source of encouragement during this whole time.  I am so blessed.

Thank you to everyone who has been bringing us meals and in advance to my MOPS group who I know has plans to bring us meals for the next month.  We appreciate it so much and it makes dinner time so much easier.  We're going to have better days than others, but it feels good to finally have a day that I feel like I will have a life again.  I won't be living in an ER or doctor's offices.  Sophie will grow and change and show us what she can do.  It's all in God's hands and I am trusting His plan completely.

Sophie is HOME!!!

The day we've been waiting for has finally arrived...Sophie came home with us this afternoon!  She did well overnight so when I called this morning they said they were preparing her for discharge.  We are thrilled and nervous at the same time.  She will inevitably have seizures at home, but our prayer is that they are few and far between and don't often have to be stopped with emergency medication.  We feel as prepared as we can be and know that it will just take going through these types of situations on our own to get more comfortable.  It feels nice to be at home knowing that nothing is urgent.  Every time I've been home in the past month has been temporary and I've rushed around getting things done before having to leave again.

The girls love having Sophie home.  They only got to see her once on the afternoon she was born.  They keep showing her their toys and Kayla just loves sitting next to her and telling me everything she does.  I can't stop walking over to peek on her to make sure she's okay.  It's going to take awhile not to be so paranoid about her having seizures.  I've spent the afternoon organizing things and setting up a cabinet for all her medication.  It's so different this time around...we feel so at ease caring for her, but have these new challenges to manage as well.  I'm sure it won't be long before it becomes routine.

Sophie most likely has surgery in her future.  The doctors think that her seizures are coming from the largest tuber in her brain (there are 6 of them--one larger, 5 smaller) but want her to be 4-6 months old before operating.  We hope that in eventually removing that particular tuber her seizure activity would lessen or even stop and that she would have to be on so many medications.  Her TS diagnosis leaves a lot to "wait and see" and we just pray that she will grow up mildly affected by it.  For now we deal with any seizures, go through a lot of follow up specialist appointments, and most importantly ENJOY having her home with us!

Thank you for all your prayers...please keep them coming!  Sophie has a long road ahead of her, but she is loved by so many people already, even those we don't know.  We can't wait for everyone to meet her.

Delayed Again

This is going to be brief b/c I don't have a lot of time.  We roomed in with Sophie last night and it all went well except she had a seizure at 5:30am that lasted more than 5 minutes and had to be stopped with medication.  She then had two more later in the morning (one stopped on it's own, one had to be stopped with medication again) so they have decided to keep her another night.  If she doesn't have any today or tonight they we'll be looking at discharge sometime tomorrow.  If she does have more seizures then a 4th medication will be started and they'll be keeping her for longer to monitor her on that.  We are feeling okay about things.  It's all in God's timing and we don't want to take her home before she is ready and have her end up back at our local hospital or at Children's.  The day by day living is frustrating, but it is our reality now and we just take things one step at a time.  Keep praying!

Excited and Nervous-The Next Step

Well, the day we have been waiting for is upon us.  Sophie is scheduled to be discharged from Children's Hospital tomorrow morning.  We are so excited to bring her home and to have our family back under the same roof.  We are very nervous too b/c this will be a completely different experience bringing her home than it was with Kayla and Madelyn.  Sophie will be on 3 different medications so managing a schedule for that will be new to us.  We also have a plan of action for when she has seizures, which ultimately she will.  We just hope that they are few and far between and don't cause us to have to stop them with emergency medication or take her to the ER.  I'm sure I'll be on edge for awhile, watching her constantly, and being paranoid about every twitch until we get settled and into a new routine.  But, we'll be at home.  The hardest part of the past week and a half has been that I've been apart from Mike and the girls.  They have been doing well, but it's wearing on me.  Tonight my mom will be staying with Kayla and Madelyn while Mike and I room in at the hospital with Sophie.  We'll be responsible for all her care overnight with a nurse to help out if needed.  I'm hoping it relieves some anxiety and makes us a little more confident taking her home.

Kayla loves kindergarten and Mike has been getting her into a routine with school.  Our late sleeper has to get up quite early now to get the bus at 7:53am (!) so that's been new for her.  I am home this afternoon so that Mike and I can drive up to Children's together tonight so I'll be surprising her at the bus stop.  Madelyn is supposed to start preschool on Sept 7th and we are hoping that life will calm down some once Sophie is home and that she can still start preschool as scheduled.  Life is going to be busy!  I knew I would have my hands full with three kids, but little did I know what God had in store for our family with Sophie's health issues.  I keep praying that jumping right into things will build confidence and we will start to learn what our "new normal" life is like. 

Please pray that our rooming in experience tonight goes well and that everything goes smoothly with Sophie's discharge tomorrow.  We finally got our insurance to add her to our policy and also got her prescriptions filled to take to the hospital tonight.  It has been quite a headache getting those things straightened out and I thank you all for praying for us through the past couple days with that.  I also want to thank my wonderful friends from my mom's group for the very generous gifts I received this week.  Your timing was amazing as my wallet was stolen over the weekend and the gifts helped tremendously over the past couple days.  All the emails, FB messages, texts, just every way people have been supporting us has been indescribable.  Never have I understood the meaning of being lifted up by others the way I have in the past four weeks.  We are so blessed and literally feel the outpouring of love and support by so many people each day. 

I will leave you with the chorus of a song that has been holding me up lately.  Many blessings to you all!

I will lift my eyes to the Maker;
of the mountains I can't climb.
I will lift my eyes to the Calmer;
of the oceans raging wild.
I will lift my eyes to the Healer;
of the hurt I hold inside.
I will lift my eyes, lift my eyes to You.

"I Will Lift My Eyes" -Bebo Norman

Mixed Feelings

Lately I've been feeling overwhelmed and discouraged.  Sophie's been doing better with not as many breakthrough seizures while on three medications.  The doctors seem to have settled on these three for now as the ones we'll go home with.  Over the weekend there was talk of discharging her tomorrow, but today that's been pushed back a bit and I'm actually okay with it.  It's hard admitting that I'm scared to take her home.  There is so much information we have to know about how to handle any seizures that happen (which they will) that is just overwhelms me.  Today while at the hospital I got overloaded with information and it was too much.  The neurologist feels like they have controlled her seizures to the best of their ability for the time being.  She has confidence that we'll handle things well once at home.  The neonatologist, however, would like to observe Sophie for another 48 hours since they are done making medication changes at this point...just to see if we can establish what is normal for her while on this combination of medication.  You'd think this would be disappointing, but it was actually a relief.  Don't get me wrong, I want her home so bad.  I want to be home with Mike and the girls again.  It is such a blessing to have family to stay with so I can be closer to Children's, but it is very hard not having my husband and kids with me each day.  I'm exhausted and so tired of spending every day in the hospital.  But, knowing that they'll be making extra sure in the next couple days that we're all (us and the doctors) comfortable taking her home feels right.  It's going to be scary no matter what.  The challenges with Tuberous Sclerosis are so uncertain and ever changing that it will remain to be seen what our "new normal" will be in our life. 

I hold on to my faith that God will not give us more than we can handle.  Days like today make me really want to question whether we are prepared enough for this.  I feel so helpless most of the time.  But, I am ever hopeful.  There is a purpose for this time in our lives.  God knew His plan for Sophie well before she was born and I believe she is on the perfect path for HER. 

Day By Day

The past couple days have been busy.  I've been spending several hours at the hospital each day with Sophie.  She is doing well.  They are still working on adjusting her medications to hopefully make her as seizure-free as possible for when she comes home.  We don't have a date yet and honestly we don't want a specific one set unless things are looking really good since we've been disappointed so many times in the past weeks.  The neurologist wants her there through the weekend since they are upping the newest medication tomorrow.  She'll want to see how that affects Sophie.  She has a breakthrough seizure here and there...some mild, some not so mild that have to be stopped with IV medication.  What I found out today is that the doctors are comfortable with her having 3-4 small seizures in a day as long as they don't last longer than 5 minutes.  At that point they want them stopped and when we are at home eventually we'll have a prescription for medication to do that if needed.  It's all so scary to me sometimes.  I can watch her have a seizure and it doesn't bring me to tears like it used to, but thinking about managing them at home brings anxiety.  I keep telling the doctors that when she is sent home I just need to know what to do in various circumstances (regarding seizures) and what to do when we don't know what to do!  They are great and have assured me they will prepare us as much as possible.

Mike, Kayla and Madelyn are back home now and doing well.  I spent last night at home since Kayla's kindergarten orientation was in the evening.  It was nice to sleep in my own bed for the first time since Sophie was born, but there was a nagging feeling that something was missing while I was there.  It was one thing when Mike and I stopped by for a couple hours to get mail, pick up things to take back to his parents, etc. but to have the four of us doing normal things there without Sophie just seemed strange.  Even though she's never been home with us, she has become such a daily part of our lives and focus.  I just can't wait to have her there with us even facing the challenges we are.  My prayer continues to be that once she comes home we will have a break from all this madness...some peace and time to just "be" as a family.

Thank you for your continued prayers.  It's a hard life lately, but we trust that we are right where God wants us to be.  One day at a time...

Some Good News...Finally!

Today our sweet Sophie is three weeks old.  It's hard to believe that it's been that long and at the same time it seems like we've been on this path with her for so much longer.  We got some great news today.  The neurologist said that Sophie is an excellent candidate for surgery to remove the largest tumor on her brain.  It appears from the EEG monitoring that the seizures are coming from that specific tumor.  I had just arrived at the hospital this afternoon when I noticed that she was having a small seizure.  The neurologist happened to be nearby and came over to view the EEG video from the past couple hours.  She discovered that Sophie had had many seizures and was able to see that they were coming from the same part of her brain.  Part of the reason she had so many was that they cut out one of her medications yesterday because they thought it wasn't helping.  Well, apparently it was doing something because taking it away caused her to have so many seizures today.  So she is back on all 4 medications and they'll be tweaking the dosages and observing her over the next couple days.

Sophie won't have surgery immediately.  The neurosurgeon does not like to operate on newborns and would feel more comfortable waiting until she is 4-6 months old.  The goal right now is to get her seizures under control with these medications and then send her home on them.  The waiting game will begin to see what happens, but hopefully they'll be controlled for awhile.  As she grows more seizures will likely break through and then a determination will be made if surgery will happen.  Mike and I both feel that it will eventually, and while it's scary, it could be life changing for Sophie to have this tumor removed if it could stop or lessen her seizures.  I've never been so excited to get news as overwhelming as this.  But, in the whole scope of things it is the best news we have received.  There is a plan now and we just have to see how it unfolds.

I believe that God is leading us down this path.  It has been so hard for me to make sense of the past three weeks and why Sophie has to go through this as well as our family.  To be disappointed over and over thinking she might come home and then being overwhelmed with all the unknown about her condition has been very difficult.  Today I feel a sense of peace that our biggest prayer has been answered.  There is an option for surgery if medication fails.  And our baby girl could have a chance at a much more normal life. 

Thank you for all your prayers and keep them coming.  Pray that the doctors are guided in the right direction in controlling her seizures to a point they are comfortable sending her home.  And that once we bring her home, we might have a break from all this for awhile so that we can enjoy Sophie and start living our lives as a family of five.  Many blessings to all of you.  God is so good!

A New Chapter-8/16/10

This will be brief for now...I'll add more tonight.  Sophie had multiple seizures overnight and was transferred to Children's Hospital in DC early this afternoon.  We are on to Plan C which is starting evaluation for possible surgery to remove some of the tumors, if they can narrow it down to one or two that is causing the seizures.  She'll be there for 1-2 weeks and monitored by 24 hour video EEG to track her seizure activity.  We both believe that this is the right path for her to be on since many medications have failed so far.  It will be logistically different for us and we'll be figuring all that out over the next couple days when Mike and the girls head home.  When I know what we need help-wise I will start letting people know.  Please continue to pray for all of us as we enter this new chapter of caring for Sophie.

...We just got back from visiting Sophie at Children's.  It is a really nice place, but overwhelming in that we don't know the doctors, how to get around in the hospital, etc.  It's going to take some time to get used to a new routine there.  What we do know is that I'll only go once a day for several hours b/c getting in and out of DC is a lot harder than going to Fairfax (which I have been doing twice a day) to see her.  Tomorrow the neurologist will see Sophie and we hope to get some answers as to what happens next in this process.  Will keep everyone posted as we get more information.  Please pray that our family has smooth transitions over the next week in getting used to a new hospital, a new routine for me once Mike and the girls go home, and for Kayla starting kindergarten next week amidst all of this going on.

Sophie Update 8/13/10

Yesterday we had a meeting with Sophie's neurologist and neonatologist to discuss the plan of action regarding her seizures. We outlined Plan A, B & C which relieved a lot of anxiety for Mike and I. Plan A was to max out the dosage of two of her current medications and leave the third the same and see how the next 24 hours went. She reached 48 hours being seizure free early this morning, but had a very long one at about noon today while I was there which takes us to Plan B. Plan B is to back off slowly on two of the medications and add in the 6-day dose of a new medication, Topamax. They are doing that this afternoon and should be able to tell if it is working by early next week. If it works then she'll be there through the week to finish the 6 day dose and I guess would be discharged next weekend. If it doesn't work we go to Plan C which is to transfer her to Children's Hospital in DC to start evaluating her as a candidate for surgery. It would be a 1-2 week evaluation process where they would monitor her and back off on some medications to induce controlled seizures to see if they can isolate the source of the seizures. If they can trace them to one or two tumors then she would be a candidate for surgery to remove them. If they find that the seizures are coming from more than two tumors they most likely won't operate...and we haven't asked what Plan D would be. We'll deal with that if we get to that point.

So now we have a course of action where as before we didn't know how long she could be at Fairfax. Now we know that if the Topamax works, she could come home possibly next weekend and if not then she'll be taken to Children's. While surgery is not our first choice (or the doctors') to deal with the seizures we are seeing after two weeks that the medications are not working so far and are hopeful that if she becomes a candidate for surgery that removing some of the tumors could be life-changing for her and us in a positive way.

Please continue praying for Sophie, our family, and the doctors that they be guided in the right direction regarding her care. This is all in God's hands and I believe that He is leading us down the path we are supposed to be on. Whether it be medication or surgery or whatever comes after, all we can do is be the best parents and advocates for Sophie that we can.

Sophie Update 8/11/10

It's been a hard day. Once again we were looking at being discharged (tomorrow) but Sophie had several prolonged seizures last night which changed everything. Found out today it is not common that seizures in a newborn are this hard to control, but the doctors remain aggressive in finding the right combination of medication to get her to a point that they are comfortable sending her home. They are going to re-evaluate her medication and come up with a new plan that they will meet with us tomorrow morning to discuss. To say that we are overwhelmed with information, names/changes of medications, etc. is an understatement. The timeframe we are looking at now is at least 6 more days in the NICU since one of the new medications needs to be given in a loading dose that will take that long to complete. Mike and the girls will most likely go back home early next week and I will stay up here to be near Sophie. Kayla starts kindergarten on Aug 23rd and we want both girls to have a week at home before that adjustment begins. I have promised her that I will be there for her orientation and when she gets on that bus on her first day! :) Some things a Mommy just can't miss.
Please keep praying for all of us. The next several weeks will be quite an adjustment with both girls starting school (Kayla-Aug 23, Madelyn-Sept 7) and I know somehow it will all come together. I keep being reminded that God will not give us more than we can handle. Some days lately I question that, but each time I am eventually granted a sense of peace that keeps me going. There is a purpose for all this that remains to be seen. We are so grateful for all the love and support.

Sophie Update 8/8/10

Not all that much to say. Sophie went for 36 hours without a seizure then had a small one at 3am this morning. This afternoon she had three in a row while I was there and one of them was longer than usual. The doctor has started her on another medication so now she is on three different ones. So we start over in observing for 48 hours. Hoping to talk to the neurologist tomorrow to see how realistic it is to get her completely seizure-free since her condition will never be cured by medication, just maintained. We've stopped thinking about potential dates for her discharge b/c it just becomes disappointing when things change the day before we think she might come home. Taking it one day at a time, sometimes even shorter increments than that. Please keep praying for her. We just want to get our whole family back home, but know we have to do what is best for Sophie and for now this is what she needs. Take care.

Sophie Update 8/5/10

I haven't updated all week since we've been hoping that our next one could say that she was going home. It was looking like she would be released tomorrow until this afternoon when some things changed. The medication she's on has been working fairly well this week. They've been adjusting it and checking her levels to make sure the appropriate amount is in her bloodstream and while a few seizures have happened things were looking better. She had two seizures within an hour yesterday afternoon and they were still going to send us home with her same medication in hopes that the higher dose would take some time to work more effectively, but ultimately do that. This afternoon they decided to add an additional medication to send us home with and the neurologist as well as the doctors and nurses have been assuring us that we are ready as parents to handle this so we were feeling very confident. Not long after this, Sophie had three seizures within an hour while I was holding her. The neurologist wants to go ahead as planned and start the new medication in combination with the current one, but wants to observe her and any seizure activity for the next couple days. He really wants her to be seizure-free at home, as do we, and this is where our journey begins with being aware of her, the seizures, and adjusting medication when needed. It's overwhelming, but after 9 days of this we are actually getting used to it. We've met with all the specialists, been bombarded with information, but overall it seems like life will be manageable if we can just get home!

Mike and I both were disappointed this afternoon hearing that she wouldn't be released tomorrow. We just want to go home and bring our sweet Sophie into our day to day lives. Kayla and Madelyn are having a great time at Grandma's, but they want to go home too. And we can't. It's such a hard feeling as parents when we want something so bad for ourselves and all of our children that we can't give them. But, it's become a lesson for us as well as the girls that we band together as a family of five when life gives us a challenge. We've emphasized that we are blessed to be able to stay here, all sleep in the same house each night, be close to the hospital, and have our needs and theirs provided for daily so that we can focus on being there for Sophie. And that we would do this for either of them. Already, Sophie is teaching us and our girls so much.

Sophie is an amazing baby. We fall in love with her more each day. She is so calm and content when awake, nurses like a champ, and sleeps so peacefully you can just hold her for hours. This is the hardest thing Mike and I have ever faced, but throughout it all it feels right that she is ours. And we feel complete as a family now that she is here, even though our lives have been turned upside down temporarily. That is the thing we try to focus on. This too shall pass. We won't be going to the NICU forever. Sophie will come home and be a part of our lives.

Please continue to pray for Sophie and for our family. We feel so loved and supported through this. I will update over the weekend when we have a better idea of a release date. I know many of you are lining up meals for us when we get home and that things have had to be postponed. We so greatly appreciate this and thank you in advance.

Sophie Update 8/1/10

I cannot express to all of you how loved and supported we feel during this time. This is the hardest thing Mike and I have ever encountered and while our strength comes from above, we feel held up by our friends and family each and every day.

Yesterday, we met with a neurologist who diagnosed Sophie with Tuberous Sclerosis. Her MRI showed multiple lesions on her brain which in combination with the heart tumors and the seizures was enough to confirm it without waiting for genetic test results. We've known it was a possiblity all along, even with the hope that we had throughout the pregnancy that it might not be. All along we knew that the testing after her birth would give us true answers. It was a strange feeling to receive the diagnosis in that we obviously don't want Sophie to have this condition, but since she does we can now move forward and do what needs to be done for her.

Today was hard for me. I feel like I finally hit an emotional wall and the tears came off and on all day. Sophie has been in an isolation room in the NICU since her arrival since she came from another hospital and they had to get tests back to clear her of anything contagious. It was actually nice having her in there b/c it was a private area and a lot of space. This afternoon she was moved out to the regular NICU room which is packed full of babies. It's louder and cramped and just mentally stressful after awhile. The nurses are incredible though. I really feel like they love and care for each baby like their own. We thought that Sophie hadn't had a seizure for the past 48 hours as of this morning and then she had two this afternoon while we were there. We are thinking more that she may have had some small ones that the nurses missed since she was in the private room and not as visible all the time. So it is a good thing that she is in the main room now for that, but harder for us. We were hoping that she might be able to come home later this week, but after the seizures today there is talk of changing her medication which would require more observation and therefore, more time until she's discharged. Tomorrow we hope to be able to talk to the neurologist that will be following her once she's discharged, who also specializes in Tuberous Sclerosis. We have so many questions for him.

Please continue to pray for Sophie. She has such a long road ahead of her as do we. It's hard not knowing when we will be back home again and when our lives will settle down. It seems like life will never be the same again and that may be true. There is just so much emotion involved and we are learning quickly how to truly take life and all of this one day at a time. Mike and I know that she was given to us for a reason and that we were given to her as well. We stand firm in our faith and just want to learn how to take care of our littlest girl and give her a good life.

Sophie Update #1

I think by now you all know that our third daughter has arrived. Sophie Michelle was born on Wednesday, July 28th at 2:12pm, 7lbs, 12oz, 21in. She is beautiful and we adore her already. Her first two days have been hectic though. She was delivered with no problems and did very well for her first several hours. Yet, she started having seizures later that evening and after a whirlwind day yesterday, she is now in the NICU at Fairfax Hospital. This wasn't completely unexpected as you all know that she was diagnosed with two cardiac tumors during the pregnancy. These tumors are associated with Tuberous Sclerosis, a genetic condition, and were monitored closely throughout the pregnancy. The tumors themselves have never caused problems. They have grown in size, as expected, but her heart has always been strong and without defect. They are expected to regress on their own as time goes on and are not a major problem. What they are is an indicator of possible Tuberous Sclerosis. The good news during the pregnancy was that in doing higher level ultrasound the doctors did not find any more tumors on in her body, making Tuberous Sclerosis less likely, but still a possibility as it is a condition that exists on a broad spectrum with a wide range of indicators. So we proceeded with the pregnancy with a best case scenario, trusting that our baby was in God's hands and that we would be prepared to deal with whatever came once she was born.

The seizures she's having further indicate that she might have Tuberous Sclerosis. Right now she is being succesfully medicated for them and undergoing a lot of testing to hopefully give us an answer in the next couple days. She's had/will have an echocardiogram, kidney ultrasound, MRI, eye exam, and bloodwork for genetic testing. The MRI and ultrasound will look more closely for additional tumors and the other tests will help put all the pieces together to hopefully give her a diagnosis. She is stable though and you wouldn't know in just looking at her that this sweet, healthy looking baby is dealing with some problems.

We are exhausted. I was discharged from Fauquier Hospital just over 12 hours after her birth. I have learned that there is a reason they keep you for a couple days after having a baby since being up and around, traveling by car, and handing all this information is overwheming physically and emotionally. But, we are hanging in there. Mike is amazing and is holding us all up in so many ways. He and I have much faith that this situation is what God has given us for a reason and that we have been prepared as a couple and as parents to handle whatever comes our way. The doctors and nurses we have encountered so far have been incredible and for that we are very grateful. The hardest part of all this is the helpless feeling as parents that there is really nothing we can do but be with Sophie when we can and trust her doctors and God that she will come through this in the way that it is meant for her.

We have felt such an outpouring of love, support, and prayers from our family, friends, church family, and even those who we don't know that are praying for us. The emails, Facebook messages, texts, and voicemails mean so much and I only wish I could respond to them more, but know you all understand that life is just too hectic right now. We are now staying at Mike's parents house, where Kayla and Madelyn are too. They are happily distracted playing with their four cousins who are here which is a blessing for them and peace of mind for us. We can be there for Sophie knowing that our older girls are well cared for and happy, yet still spend time with them when we aren't at the hospital and know they are closeby at all times. We have many other family members that have offered to care for them, if needed, and that is such a blessing as well.

So that's where we are with things right now. I will try to update by email when we have new information. We are hoping to get a lot more answers today based on the testing. The goal right now is to get her seizures stable enough that they can be medicated at home and to get her on a regular feeding schedule. Right now she's receiving most of her nourishment by IV fluid, but I have started pumping and will hopefully get back to nursing some in the next day or so. We are hoping that she will be able to come home sometime next week so we can get back to a normal routine. She'll still have to be monitored through doctor appointments for some time though.

Please pray for all of us and know how thankful we are for all of you.