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!