One Year Later

July 4^th, 2015

One Year Later…

Well, we made it.  A year has come and went.  It felt as though it was this giant storm that just flew past.  When I think of a storm I’m reminded of what comes after the storm a bright, calm sky.  Sometimes another storm might come through but they all end with that bright, calm sky. 

That seems about right in comparison for this year.  Last July 4^th was our dark storm.  I think about that day often.  I still remember it as if it were yesterday.  I came back to the hospital after getting to stay at home for the first night since I had Jonah.  Joel stayed in the NICU with him.  I’ll never forget the look on Joel’s face when I got there and he had to explain what was going on.  Even then I had no doubt that Jonah would be fine.  Everything started happening really fast.  The emotions that were running through us.  The amount of prayers that were being sent up.  I just wanted to run in there grab my baby, wrap my arms around him to have him close to me and save him from all of this.  Surely my love could save him.  Those last few hours with him, Joel and I were right by his side, touching him as much as possible.  And then that time came where the doctors could do no more. I don’t think I’ll ever forget that feeling of the doctor’s hand on my shoulder.  He didn’t need to say anything.  We knew what that meant.  I’m so glad we were there with him till the end.  That I was able to wrap my arms around him and hold him close to my chest as he went to be with Jesus.

That was our dark storm.  And that storm drug out for what seemed like some time.  We‘ve always tried to think of the good that can come from something so terrible.  And when I think back to that day I think how blessed we were to be able to be there with him.  That he had his mommy and daddy surrounding him with love as he left this earth.  This little guy was lucky to be surrounded with love his whole life.  To not have to endure the hate of this world.

Joel and I have this awesome support system.  Our family and friends have been truly amazing.  They have showed so much love and support to us through this whole year.  But the one I have to give the most credit for helping us through it is God.  The only way we’ve been able to really come out of this storm is because of The Father we have.  The hope and strength he’s given us.

Jonah’s 1^st birthday was June 27^th and on that day we had a BBQ with family and a few close friends.  Let me tell you, this day, I had a sense of peace covering me.  I had been praying for us on this upcoming day, knowing it would be hard and I could feel God’s peace.  I could have sat at home all day and cried and felt sorry for myself.  But instead we wanted to celebrate our little guy’s life.  To be surrounded by love.  Same with today, July 4th. We weren’t planning on sitting around and sulking.  We wanted to be surrounded by family and we did things in memory of Jonah.  I felt that sense of peace again.  Now I’m not saying that I didn’t cry or get upset either of those days.  I allowed myself to miss him and to cry.  But what we didn’t want to do is feel sorry for ourselves or sit around wanting others to feel sorry for us.

I feel like we have come so far this year.  We did come out of this storm to that bright, calm sky.  After this year Jonah has taught me a few things and I hope that he continues to teach us more.

1.   Don’t waste time.  Spend as much time with the people you love.  Life is too short to not.  In the blink of an eye, it can all be gone.

2.     Time moves on around you.  People’s lives don’t stop because your world stopped spinning.  What I’ve learned from that is you can’t be offended by other’s lives still moving when your world seems still.  Believe me this one was and sometimes is still hard for me.  Especially as I see families growing bigger all around me.

3.     Don’t judge people on the outside. Not everybody’s lives are picture perfect as it may seem on the outside.  You have no idea what they could be going through.  Or maybe what they’ve already experienced.

4.     Don’t lose hope.  We serve a big and mighty God and He has the power to make big things happen.  Don’t lose hope in that.

Whatever you are struggling with, whatever storm you are going through, know that we all have a God that can help us overcome it.  Don’t try and do it on your own.

Jonah was and is a blessing to our family.  I wouldn’t change knowing him.  Even if it meant I wouldn’t have to feel this pain.  He is my little fighter and one day we will be together again.

Happy 1^st birthday Jonah.  We love you to the moon and back.

Jonah Donovan Naylor

 6/27/14—7/4/14

July 4th, 2014

Remembering our Babies

October 15th, 2014

For those of you who don't know, October is National Pregnancy, Infant, and Child Loss Awareness Month.  October 15th is a day of remembrance.  Tonight at 7pm everyone across the nation lights a candle and lets it burn for one hour.  This creates a 'wave' of light.  If you or someone you know has suffered the loss of a baby in miscarriage, stillbirth, or infant loss due to any cause, light a candle tonight in remembrance of them.

Before Joel and I started talking about having children I never realized how many babies are lost.  My older sister started having kids before any of our friends.  It was the first time I experienced someone losing a baby.  She suffered too many miscarriages.  I never understood the pain she felt.  Joel and I had a miscarriage before Liam and it broke our heart.  After that we only had a glimpse of the pain her family was feeling.  Right now I know at least nine ladies who have lost at least one baby through miscarriage.  Before we lost Jonah I didn't know anyone who had lost a baby to stillbirth or early infant loss.  After we lost him I have had numerous people tell me their experience in the loss of their baby.  It breaks my heart to know other people had to experience something like this.  A pain that will never go away.  What I've learned from talking to people is that you don't move on from it or forget about it.  All you do is learn to live with it.  All of these people still mourn the loss of their child years later.  Part of that is scary to think I may be sad years down the road but the other part of me feels relief.  Relief that I won't ever forget about my 2nd son, Jonah Donovan Naylor.

Did you know?....

Today is a way to honor all of those babies who have been lost.  So I encourage you, even if you aren't that 1 out of 4 who has lost a baby, light a candle tonight.  Know that someone you know out there probably has experienced one kind of loss.

On Jonah's original due date, September 16th, 2014, my mother took me to pottery hollow, a place where you paint pottery.  She wanted to take me somewhere where I could honor and remember Jonah.  I painted this lantern.  This will forever be his lantern and we will burn the candle in it to remember him.

Jonah's Autopsy

October 6th, 2014

Today is a day filled with many emotions.  I can't help but think about not only Jonah but our future as parents.

This day has been a long one waiting.  Jonah's autopsy was finished back in August.  One of Jonah's doctors called me right about my 6 week follow up appointment and said my doctors and Jonah's doctors would meet to review it and then contact me a time after where we could meet with them.  Today was that day to meet.

Jonah's autopsy showed that he passed away from a perforation in his large intestines. This is something we already knew but weren't quite sure on why it happened. They said this was most likely caused from a bacteria he had.  This was not a bacteria he got while in utero or was caused by the hydrops.  This is a common bacteria that babies can have and that most people carry without even knowing it.  It's a common thing that can happen to premie babies.  Part of me feels broken to know that Jonah fought so hard and had overcome the hydrops only to be taken away by something completely different.

We also found out that Jonah was a carrier for Cystic Fibrosis.  They said he wouldn't of had it but is only a carrier for one of the strands.  Which means Joel or myself are also a carrier and possibly Liam as well.  This is something we will need to do some further testing on.  They did say that this had nothing to do with what Jonah had or the cause of the hole in his intestines.

My doctors have always said, from the beginning, that Jonah's hydrops were caused from my antibodies fighting against his antibodies.  They always seemed like it didn't make sense and there was something they were missing.  Both of us were hoping the autospy would shed some light on this.

Back in August when I went for my 6 week appointment I was told that we have a very high risk of all of this happening again if we were to get pregnant again.  There was nothing to stop it from happening and it may even be worse because my body is now really ready to fight back.  See my doctors have always said the cause of Jonah's hydrops was because he was very anemic.  A baby can become very anemic for multiple reasons.  They did much research and the only thing they came up with was that my antibodies were fighting against his antibodies.  So my doctor told me the only thing they could do if I get pregnant again was to monitor me very closely and the minute they see signs of the baby being anemic they would start blood transfusions.  Of course I don't even know how to begin to explain how I felt when I heard this news.  I completely fell apart.  How could I bring another child into this world knowing there was an extremely high chance they could go through what Jonah went through.  I could care less if I had to go through any of the procedures again.  But what I can't bare is losing another baby.  Or having another baby suffer the way Jonah did.  It's not fair to any baby to have to endure what he did.

After the autopsy it doesn't seem like many questions were answered on future pregnancies.  The answers were pretty much the same thing.  Things still didn't seem to add up to the antibodies causing the hydrops but nothing else seemed to make sense.  The only thing difference is that I actually know what it is called that I have, anti-JKa Antibodies.  The doctors we talked to tonight were Jonah's doctors so they could only give me little information about this.  So they recommended that we see a genetic counselor and one of my former high risk doctors.

All that's left to do is to trust in my Lord and Savior.

God, I ask you to give us faith and trust in your plans for us.  To not fall into temptation when things are tough or scary.  That we hold onto you with all our heart and know you will guide us for our future.  God we praise you for blessing us with a sweet boy we only knew for a short time but that has made an impact on our lives forever.  God we ask for strength during this time.  In Jesus name.

Be still, and know that I am God. (Psalm 46:10a)

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. (Proverbs 3:5-6)

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. (Isaiah 41:10)

Be strong and bold; have no fear or dread of them, because it is the Lord your God who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed. (Deuteronomy 31:6,8)

The last picture I took of him while he was still here on Earth.

July 3, 2014

Has It Really Been a Month?

August 3, 2014

A week ago marked a month since Jonah was born.  Tomorrow will be a month since we lost him.  My heart still aches for him every minute of every day.  Almost everything throughout the day reminds me of him.  Things like holding Liam while he sleeps or seeing a newborn baby or seeing two brothers playing together.  Sometimes it's hard seeing these things but sometimes it's a good feeling because I'm thinking of him.  

I look at pictures and imagine holding him, smelling him, and kissing him.  Then I just think of how much I wish I would have looked at him more, touched him more, took more pictures and videos, overall just how I didn't do enough.  That feeling may never go away but I've realized that it wouldn't have mattered if I had looked at him every minute he was with us, touched him as much as I could have, or had a million pictures and videos; it still would not have been enough.  God has given me comfort in knowing that we did the best we could and that Jonah knew how much he was loved.  Even if I didn't stare at him every minute of the day, he knew I was in the room.  Even if I didn't touch him as much as I could, he knew that I longed to touch him all day but I didn't want to disturb him while he was sleeping.  I know that he knew how much he was loved.  Not only by me but by his daddy, big brother, family, and friends who never got to meet him.

This last month has been so incredibly hard without having him here with us.  God has given us some comfort through it and I know eventually it will get easier over time.  It doesn't mean I'll forget him or stop missing him, but I know days ahead will be easier.  

I find hope in this verse, "All praise to God, the Father of our Lord Jesus Christ.  God is our merciful Father and the source of all comfort.  He comforts us in all our troubles so that we can comfort others.  When they are troubled, we will be able to give them the same comfort God has given us."  (2 Corinthians 1:3-4)

Jonah's Memorial Service

Wednesday, July 9th

For those of you who missed Jonah's memorial it was a beautiful service.  We were surrounded by so much love.  Jonah made such an impact on this Earth for only being with us for 7 days.  He will truly be missed by his mommy, daddy, brother, and so many others.  We love that baby so much and only wish we could of had more than 7 days with him.  But instead of dwelling on the days we won't have with Jonah, we are going to remember those memories we do have of him and we know we will see him again one day.  Like Pastor Mark said, An eternity is much better than the time we have on Earth.

Here is the letter that was read, on my behalf, that I wrote to Jonah,

Jonah, my sweet baby boy,

How do I say good-bye?  

God formed you in my belly and I carried you for 6 months.  6 precious months I will never forget.  Those wiggles, jabs, and movements I’ll always remember.  

The last month was a struggle for both of us.  You showed us how strong of a baby you were.  When doctors told us you wouldn’t make it; you proved them wrong.  You are the strongest baby I know.  

You blessed us with one whole week of watching those wiggles, jabs, and movements.  Mommy and daddy were so blessed to see your handsome face, gorgeous eyes, and tiny fingers and toes.  

How do I say good-bye?

I’m not saying good-bye.  You will forever be a part of my heart.  I will never forget you and always think about you often.  I will tell others how strong of a baby you were.  How you lived up to the meaning of your name, strong fighter.

No, I’m not saying good-bye because I will see you again.

I love you to the moon and back.

Love, Mommy


Here is what Joel wrote and read at the service,

The saying goes that a son is supposed to bury his father. A father is not supposed to bury his son. Today we have the unfortunate task of burying our sweet boy. Jonah Donovan Naylor came into this world unexpectedly on June 27th, 2014 at 5:32pm and left us even more unexpectedly on July 4th, 2014 at 1:51pm. He was with us for 9859 minutes. This was 9859 minutes we were able to spend with our son. 9859 minutes of pure joy. 9859 minutes we will never forget or regret. Jonah gave us 9859 minutes that we were not supposed to have. 

Jonah was fighting a losing battle since we found out he had Hydrops. The doctors did not expect him to survive after 24 weeks. But he made it to 28. They did not expect him to survive his 1st blood transfusion while still in utero. He survived 6. They did not expect him to survive birth. But he gave us 7 days. 

He fought for every one of those 9859 minutes and his mother and I are so proud of the baby he was. He was our strong fighter. He did not give up. All the way up to his final breath, he fought. 

But he is not alone. He was welcomed by many loved ones who have gone before. His Uncle Mike. Who has probably already taught him how to be a boy scout. His Uncle Larry. Watching re-runs of the Three Stooges. His great-grandma Jeanette and Lucille. His 5 cousins. And his brother or sister we were never able to meet. He will not be alone.

I want to thank our friends and mostly our families. We have been surrounded by so much love and prayer this past week. We are humbled to have them as most people do not have the luxury of great friends or family. And we have both.

Today is a sad day. Probably the hardest day we will ever have in our life. But we are not going to leave here sad. Jonah is in a much better place. He does not have to fight for every breath. His little heart no longer has to work harder than any heart his age has ever worked. He does not have to fight to survive. My sweet boy is surrounded by angels. The most glorious place we all work to be at most of our lives.

9859 minutes. Those 9859 minutes will always remain special in our hearts. They will never be forgotten.  

Jonah Donovan Naylor

"Our Strong Fighter"

6/27/14-7/4/14

Our Last Day with Jonah

Friday, July 4th

Today was not what we expected for the day.

I went home for the night and as we were coming up Joel sent me an update from the doctor this morning at 8:45am...

"They had to up his oxygen last night and also his blood pressure is back down again.  Urine output is real low so they gave him medicine to help with peeing and also gave him a catheter to try and keep track of his urine output.  They don't think he's feeling well so they also gave him different antibiotics.  His belly is looking a little discolored (yellowish) so hopefully they other corrections will fix that too.  They also did a chest x-ray and they weren't as good as the ones from yesterday.  Belly might be filling back up again from the sounds of it."

At about 9:10am I get another update...

"Just did an x-ray of his abdomen to see if they can see what may be causing these issues.  They found air in his belly but outside his intestines.  Sounds like they might put a tube in his belly to release the air."

As soon as I get to the hospital around 9:30am Joel meets me out in the hall to tell me they are going to do a procedure today where they place a tube in his belly to release the air.  I go right in to see Jonah.  There are a ton of doctors in and out of his room but we were able to come and sit next to him.  At this point I needed to go pump so I went in another room to do that.

At about 10:00am Joel texted me saying to get out here now because they were about to start.  I quit what I'm doing and quickly get out there.  I don't even get to go in his room.  Joel was standing outside his room and tells me it's a lot worse than they thought and it's not looking good.  They were doing the emergency procedure right now.  We were then taken to a conference room right next to his room where we are suppose to wait.

At 10:15am the nurse came in to let us know the doctors started and it could take about 15-20 minutes.  It was about that much time when the doctors came in to tell us they got the tube in and a lot of stool and fluid came out.  This tube would stay in and continue to drain.  They would need to do another procedure but they wouldn't be able to do that until tomorrow morning.  So we need to wait and see if his heart can take what's happening to him now.

They brought our family back to the room but around 10:40am they let us go back to him.  We walk in and he was bagged, which is where a doctor is pumping the oxygen for him to breathe, and they are standing around watching his heart rate.  The doctor had told us if his heart rate got below 60 is when they would start chest compressions and he didn't feel like it would help Jonah and that he shouldn't be put through that.  At this point they had already given him all of the medication they could give to help his heart.  We were able to stick our hands in and touch his head and hold his hand.  They tried putting him on the oscillator and then tried the ventilator but neither worked.  So they continued pumping the air by hand.  They gave him blood and some other things and after that his heart rate was brought back up so they were finally able to put him on the oscillator.  

He finally was stable and everyone cleared out and we were able to sit next to him.  They kept him closed in so his body temperature could be kept warm.  We just sat praying over our strong little boy.  We sat staring at his heart rate.  

Eventually his heart rate started to drop again.  The nurse came in and hooked up more blood to give him in over an hour.  But his heart rate just continued to dropped so the doctors ended up coming back in and they bagged him again.  We were able to go back to holding his hand and putting our hand around his head.  They ended up pushing the blood in faster and gave him another thing as well.  But his heart rate was not going up.  

It wasn't very long when the doctor came over and put his arms on our shoulders.  I knew what he was going to say but I just didn't want to hear it.  He told us it was that time to bring in a chair where they would pull him out and let us hold him for the last few minutes of his life.  We were completely heart broken.

They placed him in my arms, that sweet bundle of joy.  They pulled the tube out of his throat and pulled off the sticky things on his cheeks holding the tube in.  His poor cheeks looked bruised from where it was stuck.  We sat holding Jonah and loving on him while he passed away.  Our parents were out in the hallway and able to watch as he was sent to heaven at 1:51pm.

They eventually unhooked him from all of the cords and told us we could take our time holding onto him.  We were so blessed to have an entire week with our sweet, precious Jonah.  The greatest week to be blessed with.  I only wish it could have been longer.  

We let family come in and hold him and love on him.  The nurses then let us take footprints and handprints of Jonah.  Joel and I were able to give him his first bath, change his diaper, and dress him in an outfit that the nurses gave us.  The sleeper was huge but fit perfectly because it said "My Hero."  He truly was our little hero.

Then they took us all up to the garden on the roof and I was able to carry him all the way there.  The nurses took pictures of all of us with Jonah.  Liam finally was able to meet his little brother.  As they wouldn't let him in the NICU because he was under two.  We were able to stay outside for awhile and let Jonah have some sunshine on him.  Joel was able to carry him all the way back to the room.

We stayed in the room holding, staring, loving, hugging, and kissing our sweet baby boy.

We hated more than anything having to leave him behind but we know that he is in a much better place than this world.  Jonah is up there with his brother or sister right now.  We have two beautiful angels watching over us.  We will see them again some day.

We love you to the moon and back Jonah Donovan Naylor.

First Week in the NICU

Friday, June 27th
First night in the NICU. Had a good start to the evening. Belly looked good starting off and his was breathing ok. Put Jonah on the ventilator. Kept good breaths on that machine. Got settled into his new room for the next 2-3 months.

Saturday, June 28th
Desiree woke me up with a phone call saying I needed to get to his room because they had called her saying his heart rate was low and that they needed to pull more fluid from his body. I rush to the front desk but they tell me to wait in the waiting room and the doctor will come speak with me. Once he comes out he explains that they had to put him back on the oscillator and his oxygen and heart rate got low. They pulled another 150-160 mL out to help with any breathing issues he may have had.  

Rest of the day was good. 

Sunday, June 29th
Day went good.  They started him on the black light for jaundice.  When they switched out the IV poles, they decided to remove one of the blood pressure medicines as he was doing good. That evening, however, around 7:30pm, Jonah's blood pressure went down. The normal is around 30-35 and Jonah's dropped to 18 at one point. Thank god for Amy (our nurse) as she stayed on top of the doctor's to get his pressure back up. They upped his medicine a couple times and was finally able to stabilize that during the night.  

Monday, June 30th
Doctor's did their rounds and said he has improved more than they expected.They are trying to find a good balance between fluid and meds to keep his numbers at a good rate while also weening him off some medicine. 

The evening they decided to drain some more fluid since his belly became bigger. They did the x-ray and it showed that his belly was big and full and that his lungs were not producing the good amount of CO2. His intake of O2 was still good but he wasn't getting rid of the "trash" (CO2) like they would have liked. Once they did this, his gas levels later this evening, looked better.


Tuesday, July 1st
Jonah's looking good. They decided to take him off of the oscillator and put him back on the ventilator. This causes him to work harder for breaths but this is better for him. He did great and keeping his reps going. Gas levels looked similar to before they took the fluid out yesterday but this was expected since his is on the ventilator again.

We finally got to hold Jonah today!  It was the best feeling to actually hold him in our arms.

 




















Wednesday, July 2nd
Gas levels are looking better.  They are starting a dose of what's like a "water pill" to help him pee more.  This should help get rid of some of the fluid in his belly.  We just have to make sure his blood pressure doesn't drop because of him losing too much fluid.  They are hearing a heart murmur.  After doing an echo they didn't see other openings but they did notice the hole he had earlier was smaller.  They will just keep a watch on it.  Most heart murmurs close on their own.

Thursday, July 3rd
They will continue to give him a dose of the "water pill" daily to help him pee out the fluid.  Gas levels are good.  Starting to hear some bowel movements.  Put the feeding tube down his nose to start giving him a little amount of breast milk every 3 hours.  He has liver disease which is common in preemie babies.  They will wait until he 2 weeks old before discussing giving him a steroid specific for that.  His belly is looking so great today.  Still showing fluid but you can see major improvements.  I was able to hold him during the day again.  Best feeling to snuggle with this guy.

Everything seemed to be going good.  We had a few ups and downs this week but definitely were seeing more ups.  We were talking about letting more people come up and see him after the holiday weekend.  Little did we know what tomorrow was going to bring.