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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Day 100: Happy Due Date!

I imagined September 29th a little differently in my head when I was first told that we were pregnant.  I envisioned laboring at home for awhile and then going to the hospital, having one of my close friends be my nurse and then delivering a precious baby that everyone could hold, touch, kiss, and love on. I had no idea this would actually be week 15 of my child’s life.  As a preemie mom, you have to morn those ideas and be ok with the fact that you didn’t have the magical delivery that you planned in your head.  That takes awhile.  It hurts when those dreams do not become reality, but God knew, before me, that His plan for my delivery would be far greater than I could imagine.

January 31st was the day that we confirmed we were pregnant and determined our baby’s expected due date.  June 20th came fast, way fast!  It rocked our world, but I can’t imagine life without her now.  I miss her when we aren’t at the hospital and I think about her every minute of the day.  There were days that we didn’t know if she would be here on September 29th.  I’m so happy to be writing this post and updating everyone that she is doing AMAZING and we hope to have her home sometime in October!

She is off oxygen completely and taking 3 bottles a day with supplemental NG tube feeds.  Her goal is to work up to 8 bottles a day.  She has been doing great so far and we are praying she dominates this challenge – per usual.

Spending 100 days in the NICU is not ideal for a new family of 3, but we haven’t done it alone.  This journey has brought new and deeper friendships, an army of prayer warriors for one little tiny girl, and people closer to Jesus — including us.  Her life is incredible already and we can’t wait to see what God has in store for this little one.

So, happy due date, Grey Delphine Powell!  4lbs 4 ounces and 16.5 inches long.  We are so happy you are here and love you so much!  Praise God!

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family selfie
family selfie
always smiling!
always smiling!

Day 91: Happy 3 months, Baby Grey!

Here we are at 3 months and we are so excited to say that Grey had an amazing week.  We are so thrilled!  Every single day was a good day!  Praise the Lord! God is good!

Ok, here we go!

She is officially out of her box!  She is in an open crib and we can pick her up, snuggle and kiss her as much as we want!! It’s amazing just being able to look at her and touch her.  We are thrilled with this milestone!  She is holding her own temperature outside of the box and it looks like we are in the clear to never have her in it again!

She is now OFF of NIV NAVA!!! She said “see ya later” to the ventilator and now is on high flow oxygen through a nasal cannula. She is slowly being weened off of the high flow and tolerating it extremely well!

She no longer has a NJ feeding tube.  They pulled it back to NG (her stomach) and she is tolerating this too!  She is still on continuous feeds, but they will slowly compress her feeds starting on Monday.  The goal is for her to have feedings every 3 hours.

Another  big accomplishment she had this week was she took 6 mL from a bottle!  They have decided to practice bottle feeding with her because she is 39 weeks (crazy, I know) and developmentally she is ready.  She did a great job, but she fell asleep half way through.  The speech therapist is amazing and will be working with Grey on this huge milestone! She told us this is a marathon so we will be patient and wait for her to build up her endurance.

The last (but not least) major milestone is that Grey now weighs 4 (F.O.U.R.) pounds.  She looks like a real baby with rolls and big dirty diapers!  Throughout this week, Ryan and I have both been reminicing on how far she has come!  We can’t believe this little 0.9lb baby is now 4lbs!  She is truly a miracle and we are reminded of that daily.

Continue to pray for her as she (we) are not out of the woods yet!  She is doing great, but still has major hills to climb.  Pray specifically that she continues to tolerate her feeds.  The majority of baby’s have reflux issues and Grey is starting to reflux more frequently since she has a NG tube and is taking bottles.  Most full-term babies tolerate “spit-ups” appropriately, but Miss Grey has a harder time with them and likes to just stop breathing for a little bit.  Pray that she “out grows” this and tolerates these reflux issues.  Also pray that she tolerates being weened off high flow oxygen.  We are ready to see our baby’s face tube free!

Thanks for following Grey’s story and continuing to pray for her!  God is good all time!

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Day 85: Short + Sweet

After Grey had her eventful day on Thursday, I decided I needed to take a few days to rest. I was drained physically, emotionally and spiritually.  I needed to take time to renew my mind and my heart.  This NICU life can be really draining and I think it’s finally catching up to me and Ryan.  We are so thankful for everyone who is praying for Grey and also us as we continue to go through this process. I don’t think we could be this positive about the situation if we didnt have support from everyone and the continuous prayers.  

With that being said, Grey has been doing great the past few days.  It’s like nothing happened.  She is a perfect angel, of course!  All of her labs came back negative and she seems to be doing great! It can be frustrating because we want an explanation, but sometimes there is no explanation and we move on praising God for it being nothing more than a fluke.   

We are back to where we started before Thursday and will continue to take “Grey steps.”  This is a short + sweet update, but we are happy to report that she is doing well and we are continuing this journey. 

Thanks again for all your love and support. 

Oh! Her latest stats are 3lb 14 ounces and 16 inches long!

 

Our Louisville baby
Our Louisville baby- Thanks Josh + Rosie for the cute outfit!
Grey without her nasal canula
Grey without her nasal canula

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Day 82: Hard day

We woke up to a phone call this morning from the doctor stating that Grey had an episode that required more intervention than just stimulation.  Her heart rate and oxygen saturation dropped dramatically requiring two minutes of chest compressions and bagging in order for her to recover.   We immediately got ready and went straight to the hospital.

Upon arriving to the hospital we were greeted by the nurse who had Grey that night and the one who was taking over for her.  They both were encouraged by how she looked at the moment and said “her color is looking a lot better.”  It’s terrifying to us as parents when things like this happen, but it is also scary for the nurses.  We debriefed the situation with them and shortly after talking Grey had another episode that required the doctor to come to her bedside.  Her heart rate dropped again and she looked very limp and pale.  A color no mom wants to see their baby look.  It hit me hard.  I had to leave the room because my emotions were overflowing and tears started to flow.  Why is this happening?  She has been doing so well.  All of these thoughts were rushing through my mind one right after the other and I felt helpless.

Feeling helpless and out of control is one of the worst feelings.  The “NICU roller coaster”  was described to us at the beginning of this journey and today has been the definition of that meaning.  Grey was doing so well.  She still is, but today felt like a step in the wrong direction.  It’s discouraging to us, but really, look how far she has come.  It’s amazing!  Some encouraging advice from a friend was to look at Grey’s accomplishments more than her set backs to get you through the hard days.  I’ve really tried to focus on that.  Even though today was TERRIBLE,  I am glad we are here today and she is fighting to win each day with God right by her side.

I returned to her room, Grey was fighting again!  Her heart rate was back up and she was looking around like “what just happened?”  They are running some labs to look for infection.  They stopped her feeds, she is back on NAVA (ventilator) continuously, and she has an IV for antibiotics.  We won’t know the lab results until possibly tomorrow or the next day.  We will update you when we find out.

As always, thank you so much for praying. She hasn’t had any major episodes since this morning.  Specifically pray that she NEVER does this again and for God’s continued protection.

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Day 80: Not Baby Steps…Grey Steps

Grey certainly does things on her own time.  Whether its feeding, breathing, opening her eyes…or being born!  The doctors joke with us that she doesn’t take baby steps…she takes Grey steps.  She’s ready when she’s ready and she is making some exciting strides this week!  Her blood cultures have shown no signs of infection.  They believe her breathing trouble last week could have been from something viral and/or excessive fluid on her lungs.  Nonetheless, she has been breathing like a champ since Friday. 

With that said, all of her IVs have been removed!  It is so nice to see our little girl without the catheters in her arm, leg, head…you name it!  She looks comfortable, she is easier to hold, change diapers, bathe…AND…she can wear clothes!  All day!  Mom loves playing dress up.  And I enjoy it way more than I anticipated as well.  She just looks so pretty in all her little outfits.  The funny thing is she is too small to fit into some of her premie outfits but fits great in her American Girl Bitty Baby doll clothes.  She has started cot-nursing.  This is the process of weaning down the temperature in her isolette and getting her adjusted to holding her own body heat.  She is doing great at this and quite possibly could be out of her fancy box and into a crib within the next couple days!  We can barely contain our excitement for this day!  We have long thought about how nice it will be to not have a plastic wall separating us from our baby, to be able to get up close to see and touch, and to not have that gosh darn glare in 99% of our pictures (one of the small, yet very frustrating things about NICU life)!

Also, Grey is now at full volume with her continuous tube feeds and handling it great.  Today they began giving her taste test to help develop her feeding mechanics, though we may still have some time before her stomach is ready for full bolus feeds and she is eating by mouth.  In addition to her taste test, they began doing some trial runs with high flow oxygen to prepare her for coming off the NIV NAVA vent.  She started at two hour intervals today and her breathing was excellent.  We are hoping that she will be off the vent soon!

We look forward to seeing her progression and praise the lord for all her many milestones thus far!  He has blessed her so many ways and we are so thankful!

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Day 76: Good news

Happy Friday!

So many reasons to be happy today!

1.  Grey’s respiratory results came back negative! (Praise The Lord)

2.  She is looking a lot better today!

3.  As of this moment she is breathing better!  No longer desatting like she was yesterday.

4. It’s FRIDAY and Grey is 11 weeks old today!  My oh my how time goes by so quickly!

We are still waiting on the blood cultures to confirm if Grey has an infection.  Some of her results show inflammation so the doctor wanted to get the PICC line out as soon as possible.  She can only assume that is where the infection may be coming from since the respiratory results are negative.  So, the PICC is out and her legs are free of lines!  They did get a peripheral IV in her head (so thankful for this because she continues to get antibiotics and other meds through this line).

I was able to hold her again today (another reason to be happy, that makes 5!) and she seemed to love it!! We even think she is finding her voice a little bit because she is making more squeals!  It’s a weird thing to hope for but I can’t wait to hear her cry- like full out scream- ask me again 5 months from now!

With all that being said, we are so thankful for the prayers- not only for Grey but also for us!  We received many encouraging texts and emails and it means so much to hear from you all!

Have a great weekend!

Here are some fun pics of Grey from last weekend!

Bath Time!
Bath Time!

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Day 75: Not feeling so well…

Today has been quite the day.  We got Grey’s ultrasound results back this morning and everything looks normal!  Praise the Lord!  We are so thankful that many of her results come back normal and God continues to protect her. We are seriously blown away.

This morning also brought concern because Grey required more oxygen from the vent and started de-satting more than normal (breathing issues causing her oxygen levels to drop dramatically).  We thought she was just being a “diva” (we joke about her requiring a lot of attention) so we decided to go home and get some things done since she has been doing so well the past few days.  While at home, we got the dreadful call from the doctor stating Grey had 3 apenic episodes within 30 minutes requiring stimulation each time to get her breathing again.  She also mentioned that each episode required more stimulation than the previous so she was concerned of her having an infection.  My heart literally sank.  We hurried to get ready and rushed to the hospital. 

Once we were there and layed eyes on her I felt a lot better.  Ryan and I both agreed that she was acting like she just didn’t feel well.  She was very agitated and moving constantly.  We tried holding firm pressure on her and it took minutes to calm her down. We spoke with the doctor and she agreed that she didn’t think Grey felt good either.  She said that she wanted to do a septic work up on her to rule out infection and she started her on antibiotics again.  She also thinks this could be a respiratory infection.  They did a respirtory viral screen and we will get those results back tomorrow.  She is in isolation as a precautionary measure until we get the results back.  The doctor told us that if it is a respiratory infection Grey might get worse before she gets better and she may have to be intubated again.  We are hoping this is not the case and her results will be negative.

We will know more tomorrow.  As proven before, prayers work and we are anticipating them to work again and the results to be normal.  Pray specifically that she can rest tonight.  We havent seen her this agitated before.  I was able to swaddle her and hold her close to me for abour 2 hours and she seemed to enjoy that without any major episodes.  

Thanks again for the prayers!  This is just what preemie babies have to deal with and we are hoping she is back to her feisty self again tomorrow.  I hate updating with “bad” news, but it is reality and we are thankful for the support we have through prayer.

Here she is resting in my arms with her cute hat!

cute hat

 

Day 74: All Dressed Up!

In our last post, Allie mentioned how she cannot wait to see Grey in her little outfits.  Well, yesterday we arrived at the hospital to a pleasant surprise from one of our nurses… Grey had clothes on!  She convinced the doctor to allow us to play dress up…just for a short time.  She can’t officially wear clothes until her PICC line is removed.  Here is a picture of our little angel in her jammies.

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Grey now weighs 3 lbs. 6 oz.  She is tolerating her feeds very well and almost up to full stomach volume through her NJ feeding tube.  They discontinued her nutrition through IV and she is just receiving maintenance fluids now.  Tomorrow, they will begin fortifying her formula with extra calories.  If she tolerates that, they will then remove her PICC line!  This is a big deal!  It means she is tolerating adequate nutrition through her stomach to grow and no longer needs background nutrition support through an IV.  It also helps reduce the risk of infection and – she can wear clothes!  We are hoping to have her tolerating full stomach feeds (volume and calories) by sometime next week.

One area of concern is Grey’s liver.  Her labs over the last few days show high bilirubin levels.  This is most likely a result of her inability to fully break down the protein in her TPN (IV nutrition).  These levels remained high even after the TPN was discontinued.  She received an ultrasound today just to make sure there are no major complications occurring.  We should have the results sometime tomorrow.

Also, Grey has a little conjunctivitis in her eyes and is receiving antibiotic eye drops for that…not a major concern.

Please pray for God’s continued protection, specifically that her liver results would come back normal and that she continues to tolerate increased feeding.  Thank you all so much for your prayers.  God has answered in HUGE ways!  To Him be the glory!

Day 66: 3 LBS

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Grey is 3 lbs!  THREE POUNDS!  How is this possible?  You would never know this sweet little baby is having “trouble with feeds” by the looks of the scale and her adorable double (at times, triple) chin.  We love her chubby cheeks and tiny rolls that are starting to form on her legs and arms.

She is doing great so far with the new feeding tube placement and formula feeds.  Her belly is looking good by feeling soft and not being distended.  We are so thankful that this seems to be working at the moment.  She continues to be on NIV NAVA for breathing control.  The doctors want to keep her on this until she is able to tolerate appropriate feeding amounts. She is on very low settings for breathing assistance so it’s not harmful for her to stay on it.

We are now able to hold Grey everyday two times a day!! This means Ryan and I can both hold her everyday!! We are so excited about this milestone.  We want to love on her as much as possible!  I can’t wait for her to be out of that box and in our arms at all times!  We have a while until that day comes but when it does we are ready!

We are also ready for her to wear clothes!  I’m anticipating this day so much that I have a cute outfit waiting for her at the hospital to jump into! We know that day is also far away, but like the eviction from the box, we are ready for this too! If she gets any bigger, the outfit may not fit so hopefully this happens sooner rather than later.

Continue to pray for Grey’s belly and that she continues to tolerate the feeds that she is given.  We need this girl on “full feeds” and off her IV nurishment.  Pray that she gains weight appropriately and not too fast.  If she gains weight too fast it could compromise her breathing and we would have to give her a diuretic to pull of fluid and possibly stop feeding her- we definitely don’t want this to happen.

Lately I have been so thankful for the NICU nurses and doctors who take care of Grey every single day.  They truly love her and we love them!  They love on her when we aren’t there and give us updates any time we call, or just randomly during the day.  I’m sure many NICU moms can agree with me that the nurses are so important for our sanity as mothers.  They reassure us when we are scared or confused.  They make us laugh.  They answer our silly questions.  Most importantly, they love our babies as much as we love them.  So to the NICU nurses and doctors, specifically at Suburban, know that you are not taken for granted and we appreciate everything you do! We notice her cute bedding and the way you love her and we thank you!

Thank you for all the prayers and encouragment over the past 66 days! It’s been non-stop and we have needed it every single day!

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Day 10 vs. Day 66