Monthly Archives: October 2014

Day 129: Home Sweet Home!

We’re home! We’re home! We’re home! Praise the Lord. 

The words “We Are Home” have never sounded sweeter.  I can’t tell you how many times we thought of this day during the past four months.  I have to say, it’s exactly how i imagined…

We arrived at the hospital around 9 to pick up our girl.  Ryan dressed up for the occasion.  He asked if he should wear a tie and I of course thought that was an excellent idea!  After all, Grey did just graduate from the NICU!

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The NICU staff made Grey a 2014 cap and a certificate that congratulated her!  She clearly is pretty proud of herself. 

After the “graduation ceremony”  we were greeted by several people to say good bye.  One of Grey’s doctors stopped in to say bye when he saw her discharge orders and my doctor, who delivered Grey, stopped by too!  It was so great to see both unexpected visitors.  In between all of the visitors we went through discharge paper work and said our goodbyes to all the NICU  staff. 

It’s hard to leave somewhere you’ve spent 4 months of your life.  We made friends and close relationships with people we saw every day.  The thought of not seeing them on a daily basis is bittersweet.  I hope they know, but I want to say we are so thankful for each one of you!  Thank you for making us feel so comfortable at our home away from home. You all have loved Grey and us from day one.  Thank you for taking care of our baby girl so we can celebrate this homecoming.  

Upon arriving at home, Grey was greeted by her big brother, Gus.  He is already in love with her.  It really is so sweet.  I was nervous, but he has warmed right up to her and I can tell they are going to be the best of friends. 

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 We didn’t know where this journey would lead us 129 days ago, but we are so thankful for each day.  It’s unreal how time seems to go so fast but so slow at the same time.  It feels like just yesterday we were told I was going to be admitted to the hospital.  We are overwhelmed with all the love and support that has been shown to us over the past four months.   We can’t express how thankful we are in words. 

God is good and the power of prayer is so real.  We are thankful for prayers and God’s protection over Grey.  It’s truly overwhelming to think about.  He had her life planned before we even thought it was possible.  Last October (on the 25th),  we had a miscarriage and now, October 27th we brought our baby girl home.  God is so good to show us His love through Grey.  We are even more thankful for this gift of life knowing how fragile it is. 

This is the day we have all been waiting for.  It’s amazing to see a side by side comparison of Grey!  She is almost SIX TIMES her original weight. 

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We are overjoyed with this MIRACLE of LIFE! 

We are now adjusting to life at home.  We have a home health nurse coming over tomorrow and a doctor’s appointment on Friday.  Grey is on a monitor so that gives us great peace of mind.  We love being a family of four!  Please continue to pray for Grey and her life as we go through the winter season.  Pray she doesn’t get any serious colds.  We love you all and we are thankful you’ve followed us on this amazing journey of Grey’s life. 

Here are some fun pics from yesterday…

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Day 119: High FIVES & Final Countdown

Grey has been doing so great the past few weeks. She currently weighs 5lbs 5 ounces! We were giving her high fives all week! We continue to be blown away at the miracle that she is.  We are so thankful for her life and everyday we are reminded of how precious it is.

After her swallow study, the speech therapist worked long and hard to figure out what suited her best as far as formula vs breast milk.   We all agreed that formula was the best option for Grey.  She drinks her whole bottle, every single time, and her reflux has greatly improved.  This was yet another thing I had to mourn.  I so badly wanted to be a mom that was able to breast feed.  I pumped long and hard for four months, but ultimately, it’s not about me.  It’s about Grey and what she needs.  I’m reminded again of the definition of motherhood – providing exactly what she needs.

Grey taking all of her bottles means the final countdown is ON.  She has to go five consecutive days with no episodes (dropping her heart rate and/or O2 saturations below 80%).  If she does have an episode that requires the nurses to stimulate or intervene in any way during the five day stretch she has to start over.  Potentially, we could have Grey home in the next week or two depending on if she has an epsiode.  This is so exciting for us!  We are trying to be patient because we don’t want her home before she is ready, but we want her home as soon as possible!

We can’t wait to be home enjoying some football and taking naps on the couch with our little Grey!  We will keep you posted as much as possible during this EXCITING week!! Hopefully our next post will be…HOME!

oh and p.s. TOMORROW she is FOUR months old! Happy 4 months, baby Grey!

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Day 110: Scope and Swallow Study

In our last post we asked you to pray for Grey’s scope, so here is a quick update.  Her  vocal chords were inflamed, as suspected from her continual reflux, and she was suffering from some paresis or weakness in her left vocal chord.  At this point we are not completely sure what is causing this.  It could simply be developmentally weak and inflamed or possible nerve damage from birth or intubation.  The good news is doctors are hopeful she will grow out of this over time, if not, there are some minor procedures they can take to correct this down the road.  This weakness could also be a reason for some of her difficulty in feeding, particularly thin liquids, because her vocal chords do not fully clamp together, causing her to aspirate fluid into her lungs.  For this reason, Grey has been taking very thick formula from the bottle which is easier for her to control and swallow without choking. 

They break the fluid thickness into three categories.  Thin (breastmilk), nectar, and honey thick.  Grey has been on the honey thick, which she does great with; however, it is very exhausting for her to suck this out of the bottle, making it hard to finish and continue gaining weight.  Today, Grey had another swallow study where they take an x-ray of her swallowing mechanics.  She did awesome!  She handled the nectar thick great and choked a little on the thin liquid.  The great news is this time she coughed when she aspirated; whereas, in her last study she simply clamped down, stopped breathing, and turned “gray” – needing some stimulation and a minute to come back to.  This is progress and a sign of maturity.  And since she handled the nectar so well, she no longer needs to take the honey thick from the bottle.  Now feeding won’t be such a workout!  Thank goodness!

Thank you all for your continued prayers!

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Day 106: So close

Grey is sooo close to coming home!  We can see the finish line in the distance and each day it is getting clearer.  They ( the nursing staff) say this is the hardest time because we are so close and she is doing so well that each day seems so long.  We are hanging in there though and cheering her along as she conquers each day!

So,  here are the details of what has  been going on since her official due date.  She is currently 4lbs 10 ounces- H U G E!  She is back on oxygen because she was working a little harder than doctors would like and not gaining weight as steadily as when she was off.  It’s just a whiff to help her out a little.  This is not a big concern as she will most likely come home with some oxygen support.  She is taking four bottles a day with four NG tube feedings for a total of eight feedings per day.  She needs and must take eight full bottles every day before she can come home.  This is what slows the process down.  A friend told me “She is not a machine- she is a HUMAN- you just have to wait on her and she will come around when she is ready.”  Something so simple to say but so powerful.  Like everything, Grey will be ready on HER time.  So, we wait…

Another issue that we haven’t shared a ton about is that Grey has not fully discovered her voice yet.  You can definitely tell she is crying but nothing comes out.  She does grunt and make little squeaks but anything more than that is silent.  She sounds hoarse all the time.  The doctors think this is probably related to her terrible acid reflux.  She doesn’t spit up but the acid comes up her throat and burns her often causing her vocal chords to inflame.   Tomorrow they are doing a scope to look at her vocal chords and rule out any major problems.  Short notice but please pray this goes ok and that it doesn’t set her back.  Preemies get thrown off with the slightest change so this might upset her a little bit.

We are always wanting to ask the question, “when do you think she will be able to come home?”  That is the first thing people ask us (rightfully so) and it’s the first thing we want to ask the doctors.  The frustrating answer is, “we don’t know,” but the hopeful answer is, “maybe by halloween.”  Wait with us as we wait on this 4lb baby to determine when she can come home.  We are more than ready, but we are patient and find peace that God’s timing is perfect and that day will be so worth the wait.

 

She slid down the slide!
She slid down the slide!

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