All posts by allie

Birthday Blog : A Year to Celebrate

I literally cannot believe it is July 23rd and I’m just now writing about Grey’s first birthday.  I’ve come to a conclusion that the month of June is always going to be busy for us.  Grey’s birthday, my birthday and Father’s Day – plus everything else that makes summer so busy!

Let’s rewind back to last month and celebrate Grey’s FIRST Birthday!  What a year it has been.  It was so amazing to celebrate her life.  We actually celebrated it the weekend before her actual birthday and then again on her birthday.  She deserves two birthday parties, right?  Each one was so special to us!  To have family and friends gather around to celebrate her life was exactly what Ryan and I wanted for her first birthday.

imageimage

Emotions were high the week of her birthday.   We were so excited to celebrate such a joyous year!  We know how different this year could have been and we praise God every day for her life.  She has pointed more people toward Jesus in one year than I have in thirty.  How incredible is that?  I know He has a lot more planned for her.

Since her birthday, Grey has tackled a lot of milestones.  Everyone has told me,  “by the time she is two you won’t know she was a preemie.”  I would always nod and think skeptically in my head, “Well she has a BIG year ahead of her if that is true.”  BUT, I’m actually starting to believe it!

In just a couple weeks she has started saying “dada” and a bunch of sounds starting with the letter B and G.  We are still working on mama. She has also found her screaming voice.  It’s hilarious! Ryan and I crack up every time she does it.  I think because we couldn’t hear her voice for so long, we LOVE hearing every noise she makes!

 

She has also started CRAWLING!  She is a crawling machine.  She is now getting into everything.  Her favorite thing to do is crawl over to Gus and try to touch him.  He isn’t thrilled with her new skill, but soon enough he will be begging her to play with him.

 

She loves to stand up!  She isn’t standing up on her own (yet), but she likes to pull herself up with help from the couch, coffee table, anyone’s legs, etc.  She is one strong girl.

image

She just had a weigh-in yesterday and tipped the scales to 12 lbs 4 ounces, 25 inches long.   We are still giving her Pediasure in place of forumla and we just got the OK to DROP HER NIGHT TIME FEEDING!!! Can we get an AMEN?  We celebrated last night with a yummy dinner and a glass a wine.  Cheers to going to bed at a decent hour and not setting an alarm at 4 AM. Her favorite foods right now are black/baked beans, ham, and chicken salad. We are trying everything.  If you have any suggestions of high calorie foods to give her please send them my way.

Thanks for following her first year of life with us and loving Grey in such a special way.  It’s always fun for me to see how far she has come.  I have to say I’m happy this past year happened, but I’m even happier we are past it and moving forward.  I’ll leave you with a video of her first year of life.  We cried approximately a million times while making it.  Enjoy!

My friend had a preemie, what can I do?

Gray_blue

 

This post is a little different as you can tell by the title.  Since having Grey I have been asked countless times by friends and family how they can help someone who recently had a preemie.  This is such a loaded question because each NICU stay is different and each person going through their personal NICU journey is going to need different things.  However,  I am going to try and tackle this question the best way I can.  I want to be honest and pure in what I say and give good advice for those seeking how to truly help.

To help me, I asked some close preemie mom friends what they thought was helpful for them during their NICU journey.  Some of these women are first time moms, some have kids at home, some work, some live away from family, some husbands had to go back to work leaving them alone in the hospital to try and absorb as much information as possible.  Each mom had a different NICU stay and each one had great ideas to help me write this post.  Thanks again, ladies!

So here we go…

The moment you find out that you’re not going to have a full-term baby your dreams of that moment are crushed.  I know I’ve said this before, but it is so true, each mom has a little piece of their heart break by not having “that moment” or “normal delivery” that they anticipated.  They are given statistics giving them hope but also hitting them with reality of what could possibly happen.  Having a preemie is overwhelming, it’s scary and it’s foreign.

To make this simple, I thought a list would be easier to read than paragraphs of words.  Simple and to the point is how i like to receive information.  So here is a list of ideas on what to do for families who have just had a preemie or baby in the NICU.

Congratulate:  The first few days Ryan and I were filled with adrenaline – overwhelmed with information and swimming through the surrealness of the situation thinking, “WHAT THE HECK JUST HAPPENED?”    However, we also just had our first baby.  Our baby girl.  Who was so precious and PERFECT.  Interestingly enough, the majority of the moms replied to me by saying “I wish people would have congratulated us more.”  It’s hard because people want you to know they are praying, but it is so nice to hear “congratulations…your baby is perfect!”  Cards of encouragement were the perfect gift.  We were able to hang them up in our room, as many parents did, and it reminded us daily of the continuous support we were getting.

Gift cards :  for food, gas, groceries.  An excellent idea from one mom who wrote me was gift cards to Babies R US or somewhere they could buy the things they needed for their baby.  Many times, moms don’t get the “normal” baby shower as they anticipated so getting all the baby gear is sometimes overwhelming.

Notebook or Journal:  Once your baby is in the NICU you are loaded with information from doctors, nurses, techs, etc.  who are educating you 24-7.  The information can be overwhelming so writing things down in a journal is one way to help remember what everyone is saying.  It’s also extremely nice to have a journal to write down milestones or have an outlet to express emotions.

Care packages-  Days, weeks, months in the NICU are long and tiring.  Some days you don’t want to leave your baby’s bedside so the best thing to have close is a care package filled with snacks, gum, crosswords and books.  One mom mentioned a helpful book for her was “Parenting Your Premature Baby and Child: The Emotional Journey.”

Offer to mow or shovel (depending on season/location):  This was a huge help to us and a major relief for Ryan.  One less thing we didn’t have to worry about.

Listen- Sometimes just an ear to listen to what is going on is a huge help.  I remember calling my friend and just telling her about Grey and what she did for the day.  She didn’t even have to say anything back. She simply listened to what I had to say and never minimized Grey’s condition.  It’s the best gift to give someone.

MEALS- prepared meals, groceries, gift cards to restaurants.  For those families who have children at home, it’s a completely different ball game.  They are overwhelmed in a completely different way because their life has now been split; hospital and home.  One mom wrote to me and said prepared meals were a huge help.  They had meals prepared for their family during their NICU stay and once they got home.

Offer to watch kids/ dog-  We didn’t have other kids at home, but we did have a fur-baby, Gus.  Ryan’s sisters’ family took Gus willingly off our hand for an ENTIRE MONTH.  Thanks Angelmyer’s.  That was a HUGE HELP so I can’t imagine how helpful it is to have someone come watch your kids who are at home while you spend quality time at the hospital without distraction.

SHARE YOUR STORY- if you know someone or have been down the NICU journey reach out to a new NICU mom and support them.  Support them by sharing your story of success, trial, tears, and joy.  It is so helpful to know other people who share the same story.

Pray- Truly pray for these babies and their families.  It’s so nice to hear that people are lifting you and your new baby up in prayer.

These are just a few examples of how to help someone who recently started a NICU journey, but each family will need some thing different so just simply ask, “how can I help?” Or even better, tell them, “this is what I would like to do for you!”  Sometimes it was hard to tell people exactly what we needed because we weren’t even sure ourselves and we didn’t want to ask too much.

One last point I want to make is that once you come home from the NICU your journey is not over.  It’s actually far from it.  Many times people feel even more overwhelmed once being home and need support that much more.  Remember to ask them once being home how you can help.  Many babies are well enough to be home from the NICU but are still on monitors, oxygen, take several medications, have feeding issues and many doctor appointments to juggle.  Take the time to reach out to them.  They are in need of help, I guarantee you.

Thanks for reading this lengthy blog post.  I hope it helps in some way and can be shared to people who ask, “my friend just had a preemie – how can I help them?”

 

Check back soon for an update on GREY’S FIRST BIRTHDAY!!!

Happy 11 Months!

Eleven months has flown by!  I sometimes catch myself driving thinking we are going to the hospital to visit Grey, when in reality she is in the back seat  blabbering away.   Wow!  Praise The Lord for this blessing.  I love that we are here.  I love that she is healthy.  I love that we can celebrate her being one next month!  She truly is a miracle and I hope I NEVER get tired of telling her story.

We have been so busy the past couple of months!  Grey traveled with us to Colorado to celebrate Ryan turning the big 3-0!  Boy were we nervous!  I’m sure people thought we were absolutely NUTS as Ryan was disinfecting the plane and I, “the crazy mom” with the blanket over her child’s head, avoided eye contact with everyone.  Do what you gotta do.  Thankfully through lots and lots of prayer we had a wonderful trip and no one got sick.

image

After our trip to Colorado, we were off to Mexico to celebrate Ryan’s hard work at Baxter.  It was a lot of fun.  After the year we had it was much needed.  A little R&R, with just the two of us, was a perfect way for us to reflect on the year.   We were able to face time with Grey every day so that helped us not miss her too much.

Grey has been progressing great developmentally.  She continues to gain weight slowly but surely.  She currently weighs 11 lbs 7 ounces and she is 25 inches long.  Everyone comments on how long she is.  I guess she gets that from me!  She has also been doing great working on the exercises from First Steps.  She is now able to sit up!  It is my favorite skill so far!  We are now working on eating better and crawling.  Hopefully we can conquer those two things in a few short months.

Next month is the BIG BIRTHDAY month!  I literally tear up every time I think about it.  Even though this is such a joyous moment – it also comes with a lot of pain.  I’m not sure I’m ready to even relive that moment.  I know with the smiles there will be tears (more from me) but my focus will be mainly on where we are now and how thankful we are!  Stay tuned for next month as it will be one of the BEST days of our lives celebrating our sweet girl and the MOUNTAINS she has climbed.

 

image

image

Happy 9 Months!

Wow!  I am seriously so happy I have this blog to look back on and see Grey’s progress.  There are days when I think, “are we getting anywhere?  Is she really getting bigger?  I still feel like I have a newborn!”  Then I look back at her pictures and get so encouraged!   I can’t believe I am even saying this but GREY IS NINE MONTHS!

Again, GOD IS GOOD!  We have made it 9 months with a beautiful and happy baby girl.  Some days I still catch myself waking up and thinking we need to go to the hospital and visit Grey. I’m sure every NICU parent has this same feeling or maybe it’s just me and I have PTSD :).  BUT the reality is,  we have officially been home longer than we stayed in the NICU.  THAT – I count as a milestone!  Praise God!

Overall, Grey is doing extremely well.  She currently weighs 10lbs 3 ounces and is 23.5 inches long.  She is growing stronger and stronger every day.  The most recent update for her is that we just enrolled her into the First Steps program to work on her motor and cognitive skills.  We are excited about this.  I am ready to have this as a resource to get her exactly where she needs to be.  Has any body else used First Steps?  I would love to hear your experience and success stories!

Other than that, there isn’t much to report this month.  We are working on feeding Grey solid foods.  She loves all kinds of fruits and hates peas!  I think that is probably normal for any baby.  Ryan hates his veggies too so she might take after him in that area.  We are also continuing to work on tummy time and sitting up!  She is so fun to watch and each day she makes us laugh at her curiosity and spunky personality!

image

 

She may or may not kills us for this picture later in life…

imageimage

Swinging with her pals… image image

 

Happy 8 Months!

E I G H T   M O N T H S !

image

I can hardly believe how quickly time is passing by!  I can’t believe 8 months ago our lives were changed forever, and Grey was born unexpected.  A day I will surely never forget.

First,  I want to apologize for not getting her 7 month update up!  Opps!   At the time she turned 7 months Grey was admitted to the hospital for “failure to thrive” and we stayed there for 3 nights.  Grey was having trouble taking her bottles.  At times she would only take 5-6 ounces a day!  At one point she actually lost weight!  We were running low on steam and the last place we wanted to be was back at the hospital, but we knew that was where she needed to be in order to have continuous observation and figure out the
problem. However, per usual, Grey put on her “game face” and started taking all of her bottles like there was nothing wrong and literally made liars out of her parents!  Thanks, Grey!  We were able to work with the speech therapist and get some tips on how to feed her better (Thanks, Rebekah-you are a saint).  Grey also ended up getting a gastric emptying test done which showed she has “delayed gastric emptying.”  Basically things aren’t moving out as fast as they are going in.  The doctor put her on Reglan again and it seems to be doing the trick! Praise The Lord!!   It was such a fight to get her to eat and now it is much easier!

While we were in the hospital,  we were able to see some of the staff that took care of Grey! Even though it was hard to be back in the hospital it was great to have a mini reunion.  I actually told Ryan that the 3 days back in the hospital was harder than the 129 days we spent in there the first time.  Is that dramatic?  Maybe.  But I really think it was harder or maybe I’m spoiled now and have just forgot what it was like.  Either way, it was hard because for the past few months we have been taking care of her and my connection with her is so much stronger.  It was strong in the NICU, but I know her now.  I know what calms her down and she knows me.  She trusts us and it was so painful for me to see her hurt.  Thankfully,  everyone was so kind to us and tried to make our stay enjoyable.  Rebekah even stayed with Grey for a few hours and demanded us to go on a date.  She set up a dinner and movie and it was so nice to get out and get some fresh air!  Thanks again, Rebekah.  See how she is amazing?

NOW back to…

E I G H T   M O N T H S

Grey has been doing amazing!  Her last weigh in was 9 lbs 5 ounces.  I know she is bigger than that now!  We go back March 2 for another weigh in and I am hopeful she will be in the double digits by then.   Yesterday we introduced her to oatmeal.  It was a hit! After her first bite she smiled so big.  I’m so excited to keep introducing her to new things.  I’m praying this helps her pack on the pounds.

Grey also has been rolling over, laughing lots and lots, and has a lot to say…I’m not sure where she gets that from?  She loves walks in the park. We have been so spoiled with a few random warm days here in Louisville! It has been nice to get out and feel the sun!

image

We are excited for each new milestone that she hits.  We are always surprised with how much she changes each week.

8 months, means not much longer and we will have a ONE year old!! I better start planning now!  We have so much to celebrate!

Happy 6 Months!

 

image

 

Half a YEAR?  How can it be possible that our baby Grey is 6 months old today?  Time is flying by!   It’s so great to see how Grey progresses each day, week and month!  She is really growing fast and becoming such a smiley baby.  We love when she smiles at us! Will that ever get old?  I don’t think so.

Since last month Grey is a lot more reactive especially in the morning.  She still sleeps a LOT, but when she is awake she is so fun to be around.  Dad’s kisses and a little “boop” sound really bring out the smiles and sometimes a little coo.

We recently went to the doctor and she is now weighing in at 8lbs 4 ounces!  We’ve had to make a couple trips to the pediatrician because of her acid reflux.  Recently she has refused to take her bottles, which is frustrating because this girl needs and MUST gain weight to catch up with her fellow 6 month friends. Thankfully she has been taking them like a champ today so hopefully she will continue to progress in this area.

Grey has been episode free and doing so well for several weeks that we no longer have to have her on a monitor.  It is so nice to no longer carry that lovely and ever-so-quiet monitor around.

She recently had a hearing test done that was inconclusive because of her being awake and an equipment malfunction.  The test was only 50% complete, but based on those results the ear doctor referred us to an Ear, Nose and Throat doctor for follow up.  We will visit them in January.

We are so happy to be celebrating Grey’s Half Birthday and Christmas!  She is such a gift to us and so many others.  Throughout this journey we have been told by multiple people that Grey has given them hope again and a new found belief in God.  It NEVER gets old to hear how Grey has touched lives and how God has worked through her life in a short 6 months.  It’s amazing- simply put.

We cannot believe we met this little bundle of joy 6 months ago!

imageMerry Christmas &  Happy New  Year!  Thank you all for being such a great support for us during this year! We are so excited to see what 2015 brings for our little family!

image

 

and one more because she is so cute and all tuckered out from the holiday festivities…

image

5 Months

Happy 5 months, Baby Grey!

image

Well, I’ve decided to keep this blog going with monthly updates (or more) of Grey and her progress.   I want this blog to be an encouragement to other preemie families who jump (unwillingly) on the preemie rollercoaster.  Looking back on the older blog posts never fail to encourage me and my hope is that it will encourage others as well as they go through their own journey.

Grey has been doing AMAZING since being home.  We always say “she is the easiest baby as long as she remembers to breathe.” She continues to be on her apnea monitor.  We go on December 8th to see if she can be released from it.  At the beginning she had multiple episodes of bradycardia and apnea, but recently she has been episode free! Praise The Lord. Now our biggest challenge is acid reflux.  This is very common for preemies to have so we have her one special formula to help reduce it.

We honestly can’t believe today marks 5 months!  We are so thankful for all God has done with her life so far.  We praise Him each day for giving us the gift of a child as we know how fragile life is.  Even though Grey is technically 5 months today, she is 2 months corrected.  Her favorite things are bath time, having her diaper changed (so funny to us- she kicks her legs so fast like thank you! thank you!) , and being put in her sleep sack- she is out in 2 seconds!  She is also starting to smile back at us which just warms our heart right up!

As I mentioned before, this journey has brought us many new friendships and support from complete strangers. Now we want to be that support for others as they go through this journey. We personally know a few babies in the NICU.  Please pray for them and their families as they endure the ups and downs of this journey.

The other day we had Grey’s pictures taken so we wanted to share them with you all.  Thanks Kimmy for giving us the gift of photography and capturing these precious moments that we will have forever!

image image image image image

 

I want to leave you all with a verse my friend sent to me.  I love it and thought it was so perfect for all preemies! Thanks, Danielle!

“Now to Him who is able to do immeasurably more than all that we ask or imagine, according to His power that is at work within us.”  Ephesians 3:20

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!

photo_1

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. 

gus and grey

 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. 

sidebyside

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…

carseat

home

going home

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!

image

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!

photo 100914Bphoto 100914