Saturday, June 30, 2012

Your Love is a Symphony

Well today was exciting!!  We're holding steady at 3lbs 14oz again today.  We had a few family members come again to see little Sarah.  Jim and I went in first to check on her and I needed to pump before everyone got too settled in.  As we walked in the nurse told us the exciting news that Sarah was in CLOTHES!  And that they had turned down her heat in the isolette and they weren't having to use the temperature probe on her at all.

She was doing incredibly well with her outfit on and seemed quite happy being bundled up.  We are so proud of our little girl making this step.  It was so funny, because just yesterday I was thinking to myself that she was probably getting close to the clothing stage, and that I should probably take an outfit or two with me.  The nurse yesterday said that it would still be a while before we could try clothes but...  this morning today's nurse took a peek in a bag I had by the bedside that had a sleeper right on top, so she surprised us with it!  Yay!!  I'm SO SO excited!  She's really starting to look like a normal newborn baby. (picture me with the biggest grin you've seen in a long time!)

Jim got to bottle feed her last night and this afternoon.  Tonight we go back to try nursing again.  Please, please continue to pray with us that she starts picking up on feeding soon.  She's still only eating 2-5mls at only two times a day.  She won't be able to go home until she's eating a full meal every meal time.  That's 35mls (currently) at eight times a day!  That seems so very far away...

My faith continues to grow and deepen every day throughout this journey and I am just bursting with hope.  The future is looking pretty bright.  I hope that our story in some way encourages you of the richness and fullness of God's love and His provision.  I love each and every one of you.



Friday, June 29, 2012

Crazy For This Girl

Well... Here's a more concrete update for everyone!  The last two days she was holding steady at 3lbs 13oz and today we're up to 3lbs 14oz!  So proud of her weight gain!  We've been nursing for a whole week now!  Yay!  We did take a break from breast feeding and tried out a bottle on Wednesday and Thursday.  Wednesday we ate about 10mls on our own and Thursday, Daddy fed her and she got about 5mls.  She keeps tuckering out on us, but we're still trying!  Today we got the word that we're allowed to feed her TWICE a day now...  That means more evening and late night visits, as it's typically best to spread them out enough so that she can sleep and regain enough energy to try again in the same day.  I think we'll try breast feeding once a day and a bottle the other time to get her used to both and to let Daddy be able to bond with her as well.  The bottle is also a little easier for her tiny mouth to work with.

I have been searching for a new preemie hat for her, so that she can be super stylish.  I found one today at Babies R Us.  We'll get to try it out tonight at our evening feeding with Daddy!  I got a tip from the nurse that you can clip a hair bow onto the hat to jazz it up a little.  I'm going to take a hair bow with us tonight and see how it looks.  :)

In other exciting news, our friends Jonathan and Tiffany are having their baby right now as we speak!  Sarah's going to have a nursery mate soon! At least for a day or two.  :)  Though little Liam won't be in the NICU, just the regular nursery on the other side of the window.  Very excited to meet this little boy today!

We're starting to see some of the big insurance claims roll in.  It's seriously amazing how much healthcare costs these days.  I'm so thankful that Sarah and I have good insurance and is definitely carrying most of the financial burden for us.  One of the doctors that Sarah saw at Centennial has billed for over $90,000 on just one bill.  That's just crazy!!

6-29-12: Getting excited about being one month old!

Ouch!!  Thank goodness for insurance!




Thursday, June 28, 2012

Awakening

This is going to be a long one... And not so much concrete updates - just musings and thoughts that God is placing on my heart in this season.  You've been warned.  :)

Many times throughout my life I have hit these "desert" moments.  The seasons of life where I question where God is and why He would bring me to this place.  There are also moments when clarity is given and received gratefully.  I have been in one of these moments for a while now, and it seems now that we're starting to come out of it, and it's so refreshing.  This is not to say that I now understand fully the trials we are currently going through, but to say that He is giving me glimpses of the things that need to be cleared from my life and Jim's life to be more fully reliant on Him.

Last night I had several good reasons to not go to church, but I just felt like I really needed to be there.  I am so glad I fought through the headache and discomfort I was in, because it was definitely worth it.  Jim helps in the youth group and so I went to youth last night.  Pastor Jonathan delivered a message based on John 6:44-69 about how Jesus told everyone that was near Him that the only way to the Father is through eating His flesh and drinking His blood.  It sounds like crazy talk, and a lot of people, because they didn't understand it, walked away.  Jonathan's challenge for us was that in those moments where God doesn't make sense and what He's saying to do or saying to give up doesn't make sense... will we too walk away?  When we fail, what are we leaning on?  Is it God, who never fails?  Or is it something in and of ourselves?  What is God trying to show us that we need to lose in order to rely more fully on Him?

I ask myself why God would allow this to happen, and I'm starting to see glimmers of His plan of provision through it.  Why would He cause a situation that would literally drain us of our last bit of savings?  Because we need to rely more fully on Him.  Why would He put me through this period of having to work from home and stretch myself professionally?  Because He's going to open up doors for me to walk through.  Why did we go through this season of me and Jim being somewhat separated in the evenings and weekends?  To break our co-dependancy a little bit and allow both of us to grow in our discipline levels and maturity levels.

I must say that in some ways, everything I wanted out of life is coming to be.  The road that it's taking is not the one I thought we'd be on.  It's been harder than I would like it to be.  But even in the midst of not fully understanding, I am so grateful to get a glimpse of the beauty that God is bringing about in our lives through these seasons.

For You and You aloneAwake my soulAwake my soul and sing

For the world You loveYour will be doneLet Your will be done in me



Tuesday, June 26, 2012

Healing Rain

Well, well... It's officially been 4 weeks since little Sarah joined the world.  (Well I guess it will officially be 4 weeks at 11:53 pm tonight.)  Hard to believe that we're already 4 weeks into this NICU journey.  In some ways it has literally flown by and in other ways I feel like it's been FOREVER.  The nurses all joke that they're going to put me on the payroll since we've made ourselves at home so much.  Moving chairs around, able to know what beeps mean what, know all the right buttons to push...  We're getting to be pros.  Maybe I have a calling...  Then again... Probably not.

Sarah is doing well!  We're excited that as of yesterday she was 3lbs 12oz!  That's up a full pound from her birth weight.  The nurse thought it might be another "fluke", but today she gained some more grams and is holding steady at the 3lbs 12oz weight!  We had another nursing session today, but I don't know exactly how much she ate.  According to the scale she ate 34 mls, but she was pretty much asleep the whole time and didn't suck very much.  Sooo.... we're pretty sure the scale was just acting funny or that her starting weight wasn't accurate on it.  Either way, she did alright.  I'm anxious for her to start eating full meals at her feeds.

In other news, the doctor called and said that the infection in my wound is actually a strain of MRSA, so I am now on much heavier antibiotic.  I was concerned that they wouldn't let me see Sarah and that she wouldn't be able to eat the breast milk.  That has all been OK'd and that it shouldn't be a concern based on the location and that I'm being treated for it.  They also thought we might need to wear special gowns and gloves for a while with her just to make sure she's protected, but we got the OK from infection control that we don't have to take those precautions.  It's already starting to look better with only a couple treatments of the antibiotic, so I'm really hoping it clears up soon.  Please be praying with us that it it just a minor step back and that it doesn't progress any further than it already has.

I also enjoyed spending a few hours in the office this morning.  I love seeing people and talking about work related things.  I'm excited about the possibilities that are coming up and that I get to take part in.  Right now I'm equipped with lots of projects to work on at home as I continue to heal and as I'm spending time at the hospital.  I cannot reiterate how thankful I am to be working for such a wonderful company and a wonderful group of people.  They even showered Sarah with some love today!  So, so thankful and blessed!

6-26-12: Getting ready for lunch!

Monday, June 25, 2012

Without You Things Go Hazy

We had an excellent weekend.  Spent some time at the hospital with Sarah, spent some extended time with our good friends Andrew and Courtney.  There was some conversation of getting "back to normal".  We all laughed and realized life would never be what we considered "normal" anymore, and that we were now in a new state of "normal."  How so very true.  I have gotten used to the rhythm of hospital trips, working from home, cleaning and organizing around the house.  I still haven't quite gotten in the rhythm of cooking and feeding Jim and myself yet.  Leftovers have dwindled and we're back to running out and grabbing a pizza.  I think I'm going to make a grocery trip today and see what I come back with.  We're getting there.  However, I take hope in the thought that this version of "normal" shouldn't last very long - though, the even newer normal that's coming is starting to be scarier than anything.  It's just so much unknown!


Sarah's continuing to do well.  They determined that her 3lb 10oz weight on Friday was a bit of a fluke.  She is still gaining weight, but probably didn't gain quite the 4oz we thought she did.  She was holding steady at 3lbs 7oz all weekend.  They also looked at some new xrays of her lungs and determined they still are just shy of being big enough to work on their own without her oxygen cannula.  I'm SO very anxious for her to get off of it.  It gets so gross with boogers and she pulls on it so much.  They keep trying to put her on room air and she still just doesn't get as much oxygen as they would like.


She's also been able to start to nurse the last few days.  That's been exciting to say the least!  She did pretty well with it all three sessions we've had so far.  Saturday she ate 8mls all on her very own.  Sunday she ate about 4mls.  The hospital has this amazing scale they can weigh the baby before and after eating and tell down to the milliliter just how much she ate.  Eat and grow.  Eat and grow.


Our friend, Andrew's sister Ali is currently 25 weeks pregnant with twins and has been hospitalized for the duration of her pregnancy.  She started showing signs of early labor on Friday and so they have decided to keep her to be able to keep the babies growing in the womb as long as possible.  Please join us in praying for the health and safety of her and her baby boys!  I know that God has an amazing plan for their lives.

6-23-12: Getting excited about meal time!


Friday, June 22, 2012

Hungry

Well yesterday was a good day.  Nothing too exciting happened.  Sarah was holding steady at 3lbs 6oz.  Staying the same on feeding amount and on oxygen level.  No major developments there.

Today has been an extra good day though... We are up to 3lbs 10oz today!  Hurray!  She is apparently really liking the milkshakes they are giving her.  And in other exciting news, they are going to start trying to get her to eat on her own today. They are wanting to start with breastfeeding instead of a bottle, which I was a little surprised by, but I'm certainly not complaining.  We'll do that today at the 5:30pm feeding, so hopefully it goes well!!  I know that babies don't always pick it up right away, especially with her being so little, so I'm not too optimistic.  Who knows though.  She might take right to it.

I also had a doctor's check up today.  My incision looks like it might have a slight infection so I've started some antibiotics to help it heal properly.  Other than that, I'm looking good!  I go back in 2 weeks for another final checkup.

6-22-12: Sleeping peacefully!

Finally got her letters hung up in her room yesterday!


Wednesday, June 20, 2012

Humble Me

Sarah has seriously been growing!  Yesterday she was 3lbs 3oz, and today she's up to.... 3lbs 6oz!  That's our biggest gain yet to date!  She's been doing incredibly well with all her levels and such.  The doctors are even considering trying a bottle with her soon.  They have all warned me that trying to drink from a bottle for the first time is incredibly difficult, not only in the "suck, swallow, and breathe" rhythm, but also in just the amount of energy it takes to do all that.  She has virtually not been exerting any energy except to grow, digest food, and to occasionally wiggle around.

They compare her starting the bottle to you or I going out and trying to run a marathon cold-turkey.  So with that warning, they tell me she will likely only start out at once a day trying the bottle and will likely sleep the entire rest of the day.  This whole moving to a bottle portion of her hospital stay has definitely been the most intimidating part of everything for me.  Part of me is so anxious to get there and the other part of me is so afraid she's not going to take to it well!  I am hoping and praying she takes to it well and doesn't wear herself out too badly.

As for me, I've officially hit the point of not knowing who I have and who I haven't sent thank you notes to...  I sit down and find myself saying.... I feel like I've already sent this one, but I'm not positive.  Some folks may be getting some pretty funny thank you notes and/or duplicate thank you notes.  I really want to make sure everyone gets properly thanked!  The gifts, meals, gift cards, checks and cash have all been just so overwhelming.  We appreciate it all more than you will ever know.  It's all so humbling.



Tuesday, June 19, 2012

King of the World

I hate that I haven't updated in a couple days!  Our tablet was having trouble with the Blogger app, and after a few failed attempts, I didn't have the patience to type it all out AGAIN on the computer.

Father's Day was a good day.  Jim spend the afternoon with Sarah, holding her and just being with her.  Jim's parents were down for the afternoon as well, so they rotated in to see her and spend time with us.

Saturday night we stopped in the local Christian bookstore and picked up a couple books for us to read Sarah while she's still in the hospital.  One is a book of Bible stories, and the other is a book called "Dance Me, Daddy".  I have fallen in love with it!  It was written by Cindy Morgan, and based on a song that she wrote that Point of Grace sings.  I thought it was perfect for Jim's first Father's Day.  Today's song is the song the book is based on.

Yesterday was a bit of a rough day for me emotionally.  I am sure the nurses must think I'm a crazy person.  I couldn't stop crying during my time at the hospital yesterday afternoon.  Everything seemed to make it worse.  Hoping the next few days are better!  I also started working from home yesterday, which has been a great blessing to be able to do.  I'm starting out slow, working in chunks of a couple hours here and there.

Sarah seems to be doing well.  We really haven't had much change over the last few days.  As of yesterday she was holding steady at 3lbs 2oz, which was what she was the day before as well.  They keep trying to wean her oxygen slightly and she just isn't having it.  She's barely getting any oxygen from her tube, but for whatever reason, when they take it off, her levels dip just slightly too low.  She hates the tube in her nose, and it makes me really frustrated that she can't get rid of it yet.  They backed off her feedings to 27mls, but they have added a fortifier to her milk so that it's more like a "milkshake" as they describe.  It adds lots of extra proteins and other good things that she needs to fatten up.  Hopefully it will help her to gain weight a little faster.  They still haven't indicated trying to bottle feed just yet.  It should be in the next week or so that they start trying that.

6-17-12: Jim and Sarah holding hands on Father's Day.

6-18-12: Without her feeding tube in - she pulled it out!  

Saturday, June 16, 2012

Healing Is In Your Hands

Today seemed to be much better than yesterday.  I think my hormones got the best of me yesterday.

Sarah is holding steady right now at 3 pounds.  Seems we've hit a bit of a plateau with her weight.  She's increased her feedings up to 28 mls, so surely she'll be growing soon!  She had to have her oxygen turned up a little again today, so we're hoping that goes back down soon; she's back up to 30-40% and 1 liter.  (She had been down as low as 20% and .5 liters)

I got to hold her for about an hour and a half today, change a couple - yes a COUPLE - dirty diapers within that time frame as well, and most importantly introduce her to her Great Grandma Becht.  She was also happy to see her Grandpa and Grandma Becht again (that sounds weird in relation to my parents!!).  She certainly doesn't have a shortage of people who love her!

Another exciting thing to note is the wonderful staff at my mom's office threw a little baby shower for us yesterday.  They brought all the gifts down for us today to open and were showered with lots of love from them!  Lots of amazing clothes, a few necessities - like diapers, and even our stroller!

I can't reiterate enough how overwhelmed with gratitude we are for everyone that's been helping us through this time...

For our picture today, I'm going to highlight a seemingly forgotten member of our family, Abby.  She's had a rough time with all the transition going on around her, but she's been a good sport through it all.  She's testing out the safety of our new stroller!


Friday, June 15, 2012

The Gift

Sarah had a good day yesterday and last night. She weighed in at 3lbs even again. Feedings are holding steady. The nurse tried taking her oxygen tube out for a bit this morning because she keeps pulling it off and her little nose has a scab on it from where its rubbing between her nostrils.  Unfortunately her oxygen level kept dipping just below where they want to see it so they have to keep it on for now. Its a little problematic because they switched her feeding tube to being through her nose instead of her mouth, so all those little tubes don't really fit into her tiny nostril.

I'm having another rough day today. I'm just so tired of being in the NICU.  I'm tired of seeing my little girl all covered in wires and tubes.

On a positive note, I want to brag on my company, Nashville Ballet for a minute. I am so blessed to be working with a wonderful group of caring individuals who have gone above and beyond to be flexible with me in this season of unknown and transition. Such a GREAT group of people that I'm honored to be affiliated with. I cannot wait to get back and see them again soon, hopefully.

While I stress and have my moments of uncertainly, we have been showered with lots of food and gifts this week. We are so thankful for the gifts and caring people behind them.


Thursday, June 14, 2012

Tis So Sweet

Sorry this post is so late today! Its been a big day in Nally land! Yesterday we took our LAST trip up to Centennial!! I got the call at 7:30 am that she had made the trip and was safely at Williamson. Today has been filled with making sure she's settled in well.  Which she has! We are much happier with our experience there instead of at Centennial. While the care up there was mostly excellent, there were some things we didn't care for.
One of my favorite things about Williamson is that it is so much smaller. The NICU there right now has 5-6 babies in there. The last room we were in before the transport had at least 10 all tight together. The nurses at Williamson for the most part are able to give a much more personalized experience. We ended up chatting a lot with our nurse this evening who went through a similar pregnancy situation as I did. Most all the nurses remembered us and welcomed us back. I guess it helps to have the crazy-you-almost-died story.
Sarah seems to be doing well. Her "orders" really haven't changed much. She did increase feedings to 26 mls. She slipped back to 2lbs 15oz yesterday, but we were back up to 3lbs today.
As for me, I seem to be getting more tired the last day or so... more than I have been. I'm off most of my meds, mainly just on vitamin supplements. I just can't seem to get enough rest.



Wednesday, June 13, 2012

You and Me

My sweet baby girl got her IV off yesterday, as I mentioned in yesterday's post... But let me just say how GOOD it is to see her without that stinkin' board taped to her hand!  She's taking all her full feedings like a pro, and having crazy full diapers!  Yes!  The system is working properly!!

We were there last night for the weigh in, and she had a minute step back to 2lbs. 15oz.  Soon these 2lb days will seem like a thing of the past.

We were also told late yesterday that the transport might not happen today.  It has something to do with something on Williamson's end.  They did say, however, that it should be no later than Friday, but that it would be a day by day situation to determine when we do it.

The last couple days we've been showered with love by our church family with many meals. We are so thankful for those that have kept us fed as we journey and spend time and recover from surgery!



Tuesday, June 12, 2012

We Give Thanks

As of last night she weighed.... drumroll, please..... 3 POUNDS!  Yay!!  We're so excited that she's moved into a new pound bracket.  Only 1 pound away from getting out of the isolette (the covered bed) into an open air bed and starting to be able to wear clothes!

Yesterday Sarah's breathing was pretty elevated so they increased the concentration of oxygen they were giving her, but reduced the amount delivered over the course of the day.  It seemed to work, and she had an easy night and morning this morning.

They took out her IV this morning and increased her feedings up to 22 mls, which is considered a "full" feeding for her size.  I was worried I wasn't making enough milk to keep up with that demand, but I'm producing at least 4 times as much in a day than she's eating... So that made me feel MUCH better.  She should have plenty of tasty food to eat!  And boy does she like the taste of it.  They keep putting drops of it on her paci, and she gobbles it right up.

The doctor also said it will still be at least a week before they even consider trying to teach her how to use a bottle.  Please pray with us that they are sensitive to her signals and start the bottle just as soon as she's ready and that the process will go QUICK and without major setbacks!  This is the most important step in being able to come home.

We also got the approval from our insurance to transport her back down to Williamson Medical, where we initially had her.  They will be doing that transport hopefully TOMORROW!  She'll be much closer to home which will make visiting her so much smoother.  Please pray for traveling mercies for the transport team as they make the 30-45 minute journey from Nashville to Franklin.

Please also continue to pray for me and Jim as we continue to deal with the emotional side of this separation.  It's been really hard on both of us to be apart from her.  Especially Jim the last few days as he's been back at work and hasn't been able to see her as much as I have.

 

Monday, June 11, 2012

More Time

I'm wearing REAL PANTS today!  This is my excitement of the morning.  I've been wearing yoga pants as not to intrude on my incision site, but after 24 hours without a single pain killer, I decided I should try real pants.  And the FIT.  I'm not talking maternity pants here.  Normal, every day, non-pregnant Amanda pants.  2 weeks ago I peaked at my highest weight and largest size and most swollen state.  29 pounds less later, and less than 2 weeks later - I don't give off the slightest hint of being pregnant or having a newborn at all.  It's all kind of surreal.  I'm actually weighing in a couple pounds less than my pre-baby weight.  It's amazing how much of that was water weight gained right at the end - which should have triggered me to worry...  but as everyone said... "It's your last trimester, you're supposed to start blowing up about now!"  Now I know that wasn't exactly accurate.

I've been calling this morning to get last nights update about Sarah, but I keep missing her nurse.  Either she's with another patient or on break.  So I don't have her weight update for you today yet.  I'm really hoping she's 3 lbs today.

They did move her last night to a new nursery room at Centennial.  It's a step down nursery from where she was.  She's so stable and healthy, they needed the bed in the area she was previously in.  Yesterday they had an influx of sick babies come in - most of which seemed to be at full term.  It made me really sad seeing all the sick babies and the doctors running around frantic trying to staballize them.  Definitely gave me a reason to say thanks when you realized how stable and healthy and strong she was in comparison.

Though I will say it made it even harder to leave her there... If she's not sick, why does she have to be there??  Simple answer, is that she really just can't eat on her own yet.  It's her last hurdle.  Learning the bottle.  The nurse yesterday put a taste of the milk on her pacifier and let her try it - Mmmm.... Calmed her right down and she started sucking furiously on the paci.  She liked that a lot.  I'm really hoping they start teaching her the bottle soon.  I have no idea if the nurses are telling the doctors that she's responding that way though.  I'm going to ask them about it today.  I really feel like she might be ready or about ready for that next step.




Sunday, June 10, 2012

Learning to Breathe

Let's start with her stats from yesterday - 2lbs. 14oz. at the start of the day.  We've also discovered they weigh pretty early in the evenings... So as of last night we're up to 2lbs. 15oz.!!  Almost 3lbs!!  We're packing it on now!  Holding steady at 12mls a feeding right now.  We came off the lipids (fats) yesterday!  Only one more IV fluid left to get rid of - which will leave once we get a little higher on our feeding number.  The nurse thinks that will be in 3-4 days.  Still holding at a 1 on our oxygen.  We're hopeful that will come down again today.

Yesterday was alright.  I was overly emotional and moody, but what's new?  On our way up to see Sarah, we hit solid, stopped traffic on the interstate. No way to get off, no way to move.  I was afraid we were going to miss her 2 pm feeding.  Her feeding times are the special times.  That's when they'll open up her isolette and let us really get in there and interact with her.  We're allowed to change her diaper, take her temperature, touch her, talk to her, and most importantly hold her... I was terrified we'd get there and the nurse would have already done most of those tasks and we'd have to wait another 3 hours before we could do them again.

We pulled in the parking lot at 1:55.  What if the nurse went ahead and started a few minutes early??  Jim didn't seem very phased by this "problem" that I had.  Of course we finally got up there, signed in, used the restroom, scrubbed in - JUST in time.  The nurse was just starting to warm up her milk for her feeding.

I was so worked up that we might miss it, that it took almost the entire visit to calm down.  It was my day to hold her, which I was excited about.  Since she's still so small and frail, they only let us hold once a day - so dad and I rotate right now who gets the honor of holding her.  Now that all her jaundice lights are gone we can hold up to an hour a day.  What a special hour it is.  

I chose to wrap her in blankets and hold her like you would a normal baby, instead of the kangaroo care that is really good for her development.  Selfishly I just wanted to be able to look at her.  When you're holding her kangaroo style, she's up on your bare chest just under your chin.  You can't see her face at all. I wanted to talk to her and watch her face.  

I found I didn't have much to say as I was still cooling off from our near miss at doing all those mundane tasks that most mommies and daddies take for granted or often grumble about.  I was just content to look at her.  To look at her features and see what I could see.  I can't figure out who's lips she has yet.  They're just so tiny it's hard to tell.  Her nose is smooshed with the oxygen cannula so there's really no way to tell that either.  Right now, she's just incredibly her own person.  Honestly, I wouldn't want it any other way.  



Saturday, June 9, 2012

Trust in You

Sarah had a good day yesterday.  We're down to only one bag of IV fluids.  We lost the bag of lipids yesterday.  We should lose the IV completely in a couple days.  We're just waiting on her feedings to get a little more substantial so she'll be ensured to get all the vitamins she needs.  They'll also be able to add all her medications and vitamins to the milk and do everything orally which will be great.

She's officially back off the jaundice lights as well.  The nurse seemed pretty confident that she was off them for good this time, but we'll see.  They teased us with taking her off them once before.  I'm not 100% positive that we're done with them.

She's also ready for her first bath today, so that should be exciting!  Since they went ahead and removed her umbilical stub, we should be able to fully submerge her in water instead of doing a sponge bath.  She still hasn't been thoroughly bathed since she was born since she's been hooked up to everything.

Our weight was 2 lbs. 13 oz. yesterday which is great!  Heading in the right direction!  As of this morning she was 2 lbs. 14 oz.  So proud of my growing girl!  They've increased her feedings up to 12 ml of milk at a time as well.  She's STARTING to not look as thin.  Her belly is poking out a little more, and the indentation that was in her chest (strictly from not having any fat filling her out) is pretty much gone at this point. 

They also think she'll be able to come off the nasal cannula in a day or two, as she's down to a 1 on oxygen through her cannula.  I'm not sure what the numbers really mean, but a 1 is about the last step before coming off.

I hate that we're almost off of EVERYTHING, but are still so far away from bringing her home.  I am encouraged that she's learning to suck on the pacifier a little more - maybe a good sign that she'll pick up on sucking on the bottle faster?  Who knows.  I'm hoping to be able to talk to the doctor in the next day or two and get his opinion on when we'll start trying a bottle.  Every nurse we've talked to seems to have a different opinion, and it's really the doctor's call.  Gaining weight and eating on our own...  It's all we have to do.  Eat and grow.  Eat and grow.

On a happier note, daddy got to kangaroo care with Sarah yesterday.  Here's a pic from their 45 minute session.  I love watching them together.  


Friday, June 8, 2012

Heaven is the Face

Yesterday marked the first day that Jim went back to work since Sarah was born.  I know it was really tough for him to go while I'm still out and at home and with her in the hospital - but it was necessary.  Luckily it was a Thursday, so he has a couple days to ease into it before going for a full week.  We're also very thankful that my mom and sister could be here for this transition time when I'm still unable to do much and can't drive yet.

We came off the bili blanket yesterday!  While it was super stylish, it wasn't very comfy and Sarah was much more agitated with it on.  She was a much more calm little girl.  She still had the overhead light on so that means still more sunglasses time.  The nurse last night was optimistic that she'd come off them today though.  We'll have to find out when we go visit!

When we went up last night we were there for her weighing - she's up to 2lbs. 13oz and holding steady!  She's also up to 10ml a feeding - which doesn't sound like much but it is a HUGE jump from where we were just a few days ago.  Hopefully with the increased feedings and as she gets more stable, we'll just start gaining weight like it's our job.  The nurse last night called it the Biggest Loser in reverse... who can gain the fastest?  Being a fan of the show I found it pretty humorous.

We've also been encouraged by how she's started sucking on the pacifier they've given her.  They are talking about possibly starting to bottle feed between 32 and 34 weeks depending on her progress.  32 weeks would be NEXT WEEK.  My prayer is that she is allowed to start trying early and that she takes right to it.  Other than not eating on her own and her weight being low... She's a perfectly healthy little girl, and we want her home so badly!

Instead of a picture today, I have another video we took.  She was much more alert and held steady gazes last night.  I am in awe when I think about how early she is here and yet, how developed and how perfect she is.  It's truly a testament to God's grace.  While this is nothing I had planned, He knew all along and prepared her for this moment in time.  How my faith has deepened and how in love I am with her, her daddy, and my God.... It's all so much.  I'm overflowing with love and gratitude.


Thursday, June 7, 2012

How Deep the Father's Love


How blessed I am to have a husband that sings hymns to our little one...  Yesterday Jim was able to hold our little girl for the first time.  After they handed her to him, she kept looking up at him.  How excited I am to watch their relationship grow and blossom throughout the course of our lives.  She got a little fussy, but Jim just rocked her and soothed her with a hymn.  She went right to sleep.  How precious.

Her jaundice levels were elevated again yesterday so, they had to put her not only on a bili light, but also on a bili blanket.  That thing was neon blue and glowed.  She looked like she was at the disco!  Really hoping that she comes back off those lights again soon.  She doesn't like wearing the glasses and wants to look around.  I think she takes after her momma in wanting to see the world and not miss a thing!

I must say how amazing it is that even at this small size, babies have personalities and quirks just like you and I.  It's been a fun little process learning some of her quirks and I'm quite excited about the woman she will grow into.




Wednesday, June 6, 2012

I'll Love you Til the End

Yesterday was a good day.  It wasn't a great day, but it was a good day.  With having the ventilator removed, Sarah has found her lungs and her vocal chords and has figured out how to cry.  If you think seeing a regular baby cry is tough... Wait until you see a 2lb baby in a plastic box cry.  You can't pick them up, you can't comfort them in any way really. No amount of patting, or touching or talking could calm my little one down.  It truly broke my heart.

We did get the OK to finally hold her yesterday!  We're only allowed to hold her once a day right now and for about 30-45 minutes maximum.  She was crying until they laid her on my chest and immediately she calmed down.  We sat and rocked and sang and talked for just over 30 minutes until it was time to go and time to eat.  She started crying right away once they took her from me.  I absolutely hate that we can't hold her more.  Today Jim will get a turn holding her.  I can't wait for that moment.

Other than being inconsolable, she's doing well.  All her levels look good and she's continuing to do well on her milk feedings.  We're up to about 5 ml of milk at each feeding.  I'm anxious for her to start being able to eat it on her own and get the feeding tube out of her throat.

They're talking about transferring her back to Williamson Medical possibly early next week, which is just a short 10 minute drive from home instead of the 30-45 minute drive we're making now.  I'm quite torn on whether to move her back or not for lots of reasons.  But I suppose we'll cross that bridge when we get there.

We had another meal brought to us last night by one of the gals at our church, and it was TASTY!  We have been so blessed with folks stepping up and helping us through this difficult time.  Food, cooking, and cleaning just really aren't high on our list of thoughts right now.

Tonight my mom and sister come, and I'm so excited about that!  Ashton has yet to meet little Sarah and I'm anxious for them to interact.  Jim goes back to work tomorrow as well.  The next few days will be a little tricky as we find a new rhythm for life again.


Tuesday, June 5, 2012

All of Me

Yesterday was a fantastic birthday.  Not what I expected at all for my birthday, but fantastic none the less.  Sarah seemed to be a completely different baby yesterday.  Definitely in a good way! She was alert and responsive to our voices and sounds.  They took her off the ventilator and she was doing excellently without it.  She only has the nasal cannula right now that is helping her lungs to not deflate entirely between breaths.  It's the reason her mouth is a little more bubbly than normal.  Just lots of oxygen in her system!

They are also giving her a low dose of caffeine to help stimulate growth and strengthening key muscles.  I have a feeling that's part of why she was so alert yesterday - she had her morning coffee already!

She also was able to meet her Great-Grandmama Nally and Great-Grandmama Burris for the first time yesterday.  Jim's grandmothers had a vacation planned starting this week, so they just altered their course and made their way to Tennessee instead of Missouri.  We were so glad to see them for a little bit.  It was definitely special getting to see their reactions to just how tiny Sarah is.  We look forward to introducing her to others in the days and weeks ahead as family and friends are able to come.  She loves meeting new people!

It's been definitely hard to leave her bedside each day, but yesterday was extra hard.  Before she was just asleep and didn't really know we were there.  But today she was looking straight at us and seemed to recognize us.  She would close her eyes and immediately try to open them again so she didn't miss anything. I hate the thought of her looking around and seeing the plain walls or a stranger...

I know that's she's in a wonderful place that will take care of her in our absence, and that I need to continue to focus on getting stronger.  While I've definitely improved and am more mobile than I was, I'm still pretty weak and in a lot of physical pain from the surgery.  A lot of my swelling has already subsided and I've lost over 15lbs (most of it water weight!) from the last time I weighed myself before delivery.  I'm able to wear my wedding rings again and when my feet stop feeling so bruised from the swelling, I might be able to fit back into regular shoes!  Right now flip flops are about all that work on my swollen feet.

Our song today was sent to me from one of my dear college friends.  It certainly hit the spot this morning as I was thinking about little Sarah and how much I want to be there and how much I would do to make her well and stable.  Thank you, Kristen!





Monday, June 4, 2012

Calmer of My Troubled Heart

I must say the last 24 hours have been quite the emotional roller coaster.  My hormones and emotions are starting to click into panic mode, where before I had been in survival, deal with it, get through it mode.  I'm much more prone to random crying spells and panicking that there's no way we'll ever be able to afford a 4-10 week NICU stay.  I have to keep reminding myself that God will not bring us TO something if He's not willing to bring us THROUGH it.

Right before our move to Nashville, I had gone through a worrying phase of not knowing how the move was going to work and that Jim and I would never be together again.  Laying alone in bed one night, I distinctly heard God speak to me... "Have I not brought you this far?  Will you not trust me the rest of the way?"  I have clung to these words over the last 9 months or so and continue to do so during this time of uncertainty.

The Lord who provides EVERYTHING, who created the stars and the moon and all the people on Earth cares enough to whisper these things to me.  To hold me even when I'm so numb that I can't feel it...
"Be strong and courageous... do not be discouraged, for the Lord your God will be with you wherever you go."  -Joshua 1:9


Sunday, June 3, 2012

Better than a Hallelujah

Thursday morning, May 31 I finally got to go see my little girl.  Right before we went to go, they told me they were putting her on a ventilator so I had to wait a while before going to see her.  When I did finally go see her she was covered in tubes and wires.  My poor baby was so wound up upon hearing our voices that she started needing more and more oxygen.  She started throwing her body around and propelling herself backwards toward the glass wall.  They kicked us out to get her settled back down.

Because of the ventilator and her not resting well they decided we needed to transfer her up to Centennial for better care with the ventilator - as Williamson didn't have the facilities to leave her on the machine for the long term.

Guilt was settling in pretty heavily.  If I had just taken better care of myself... If I had noticed the signs earlier... If I hadn't gotten her riled up... Lots of 'ifs'.

I was completely in tears most of the day.  One one of my trips back to the room from visiting her, we were stopped by the photography lady wanting to talk about taking her birth pictures.  I'm sure I freaked her out and started crying on her.  When I told her she was covered in tubes and wires, she quickly said that we could take pictures later.  Which would have been a sweet thought... but all I could take it as at that very moment is that my child wasn't attractive enough for this photography lady to take pictures of...  One snowball of emotion after another...  Time was passing quickly before they'd transport her away from me, and I had just seen her for the first time.

By early afternoon they arrived with Sarah all strapped in a transport incubator.  She was ready for her first car trip.  Not at all what I thought it would look like...

The rest of the afternoon was spent focused on getting healthy, cleaned up and prepped for getting out of the hospital.  My doctor stopped by and said that I could most likely leave the following day (Friday) if I did well through the night.

After they told me I might go home, they moved me to another, smaller room now that my baby had left the hospital.  Jim went up to Centennial to make sure Sarah got settled well and my mom and I stayed behind to settle into my new room.

On Friday morning, I got cleared to leave the hospital.  Most of the morning was filled with visitors and packing up the room.  By 2pm my mom and I were loading up and heading towards Centennial to visit my little girl...


I Need Thee Every Hour

On May 30, 2012 I woke up in a hospital room filled with family.  I don't really remember much as I was still coming out of the anesthesia they had me under for the surgery.  It was filled with hugs, questions, making sure I was ok.  Jim was able to go back and see Sarah around 2:30 am that morning.  She was breathing on her own which was more than they had expected.  She only had a little oxygen tube in her nose to help make sure her levels stayed high.

I don't have very many memories of this day at all.  My hospital stay is broken up in my mind based on which nurse I had and when.  They were all fabulous and were just what I needed when.  Even in the nursing staff, I thank God for his provision of timing and care.

My first nurse was a quiet, calm older lady.  She took incredibly great care of me and never pushed me past my limits.  You could hear the concern in her voice and I was so thankful for her.  She later stopped by to check on me the night before I left.

At 7 am, I received my second nurse.  She was much more firm and demanding.  Not in a bad way... Just making sure I didn't get lazy and not recover fast enough!  My doctor wouldn't let me go see Sarah at all on Wednesday because I needed to get my liver back under control before I moved too much.  My nurse was helpful in finding ways that I could push myself while still being careful to not harm my liver.  She also checked in on me later in the week and was excited to see my progress.  She was probably the most strict of all the nurses, but I do think she might be my favorite one.  :)

All day, I got to see pictures and hear stories of how Sarah was doing. It was literally killing me that they wouldn't let me go see her.  The emptiness that I felt after my ectopic surgery in March 2011 was rushing back to me all that day.  The grief, the shock, the emptiness...  One minute I was fine, the next I no longer was carrying my child and I wasn't able to see or touch her to make sure she was ok.

They finally told me that the medicine I was on for my liver would finish around 1am on May 31.  If I was feeling up to it, that is when I could start going to see her.  It was the middle of the night but I was so determined to get up and see her.  It was that night that I learned they wouldn't bring my my medicine with out my requesting it.  Ouch!  Due to my incredibly high pain level, and sheer exhaustion, I opted to wait until morning to go see her.


Saturday, June 2, 2012

Our God is in Control

I really have no words or way to start this out.  I know I need to keep up with thoughts and progress and such...  It's just so overwhelming.  This first few posts will be a little long as I give all the back story to this week.  Hopefully the updates from here on out won't be so lengthy.

I guess we'll just start at the beginning and talk about all that has happened in the last few days.  A week ago, we were with family in Lexington getting ready for our first baby shower for our new baby girl Sarah.  I was 29 weeks pregnant, almost 30 weeks.  It was an early shower, but I was just so excited to start REALLY preparing for her birth in the fall.  We had a great weekend, busy... Saw lots of people.  Had a great time!

Monday was the holiday and we came home early afternoon.  I collapsed on the couch and pretty much stayed there the rest of the day.  I was so incredibly worn out.  I hadn't slept in about a week really, had been a little nauseous, heart burn, was already swelling a lot, back pain.  All sounded like symptoms of being pregnant.  Everyone I talked to usually gave me that... "Yup... You're pregnant...  Sorry, it's just not going to get any better." pep talk that everyone wants to hear.  I had pretty much resigned to being miserable for the 10 weeks that follow.

I went to work on Tuesday, and was doing alright.  I was a little out of it.  Having trouble focusing, remembering things.  I was incredibly agitated by every tiny little thing - which again I took as just being hormonal and not sleeping well.  By late afternoon I was really starting to not feel well - to the point that I was wondering if I could make the drive home.  Home seemed so far away and I felt so sick.  I pushed through to the end of the day to make sure things got off to a good start for our first night of classes.  The moment I felt it was under control I left and promised I'd deal with all the loose ends later in the week.  I just felt so bad...  I needed to go lay down.  The really bad symptoms had started kicking in around 3pm and just didn't let up.  I left the office around 5:30 and got home shortly after 6:15.

Jim and I had planned to go run some errands, pick up my birthday present, go to dinner at Qdoba as we had 2 different free burrito coupons to use - free dinner!!  I walked in the house and just collapsed on the couch.  I told him I couldn't possibly go out and that I just wanted plain pasta or something like that to help settle my stomach.  He was happy to take care of me and got me everything I needed to try and be comfortable.

By 7:30ish, the pain radiating in my chest had shot all the way through to my spine.  It hurt to breathe deeply.  It felt like all my insides in my chest cavity were bruised and out of room.  I was moaning and crying in pain, and Jim and I decided that I needed to call the doctor.

The nurse on call told me that it sounded like a few things... 1)  It could just be really bad heartburn - in which case she could call me in a prescription heartburn medicine to try for the night and see if it helped.    2)  It could be a gallbladder issue based on where the pain was radiating from.  To determine that, I would need to go into the ER and have an ultrasound done to check out my organs.  3) It could just be a lot of pain, and I could go to the ER and take some pain meds so I could sleep.

When 2 out of 3 of my options are the ER, and one includes an organ that I'm sure has SOMETHING important to do...  I had watched enough medical TV dramas to know that I should probably not take the prescription - wait it out- option.  I told her we'd be heading into the ER if they wanted to call ahead and let the OB on call know I was coming.  We headed out of the house around 8pm.

It took them maybe 30 minutes to get admitted, and wheeled up to a room.  They didn't take me to an ER room, but up to the maternity ward.  After what felt like FOREVER of diagnostics, running tests, labs, getting an IV hooked in...  The doctor came in and talked with us.

She started off with the statement that I was very, very, very sick.  And that they were going to have to deliver the baby early to make sure we were both alright.  I immediately burst into tears.  I was only 30 weeks along.  75% of the way through... There was no way this could be good for my baby.  She was going to be much too little.  All I could think of was her.   We were initially told that she would be delivered in the next couple days.

The doctor continued in talking about my condition and what was actually going on.  I had a condition knows as Preeclampsia, which I had heard of.  Usually included high blood pressure and swelling.  But I had gone much further than that and had a syndrome called HELLPS syndrome in addition.  The short story is that my liver was going into liver failure and my body was attacking itself.  If they didn't deliver the baby right away, my liver would burst and I would possibly not be with us today.  The only cure for this condition is to deliver the baby.  My body should revert right back to it's normal state once the baby is gone.

Sometime between 10 and 11, they decided the baby would be here tonight.  They started prepping me for surgery.  Because of the severity of the situation, Jim would not be allowed to be in the OR with me or see our little girl be born.  Thankfully a couple from our church was able to come right over and sit with him while I was in surgery.  I'm so glad he wasn't alone during all this.

At 11:53pm on May 29, 2012 - Sarah Katherine Nally joined the world at 2 lbs 12 oz. and 15 inches long.