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.

Happy Birthday Jonah

Friday, June 27th

As I'm laying there praying for Jonah to show signs of breathing all I could think of was that God has a plan.  Jonah never showed the practice signs of breathing in that 90 minute ultrasound.  They told us that they were going to deliver him.

When Jonah came in at 25 weeks he was showing dips in his heart rate but with him being so young they knew it was better for him to stay in utero as long as he could.  Now that he is 28 weeks and 3 days old these dips aren't good which is why they did the ultrasound for the biophysical profile.  Since he failed in both areas they felt him being in utero was no longer the better choice.  It was time for us to meet Jonah.

We sat for what felt like an eternity waiting for doctors to take me back.  We continued to look at the positives.  Jonah was able to get 6 blood transfusions, he was given 4 steroid shots, and he was able to grow 3 weeks since we found out about hydrops.  God had a plan when I was put in the hospital for Cholestasis.  We thought back, if I hadn't been in the hospital and being monitored everyday then after yesterday's ultrasound we would have went home and not come back for another 3 days.  We always knew God had a plan in all of this.  We can see it now.

I'm in the OR now and all ready to go in comes Joel for the c-section to start. The doctors made sure to keep us informed but all we could do is wait. We hear them say, "I see his legs." After an eternity after they said that, they finally said, "I see his body." We could tell that Jonah would be here any second. Then, in unison, most of the doctor's say "17:32!" Jonah officially joined us. This early homecoming was very unexpected.  

As soon as he was pulled out, he was placed on a table and immediately surrounded by 5-7 doctors. We sat in anticipation as they worked on Jonah. Questions clouded our minds. Could they get the tube down his throat to assist with breathing? Will his heart rate remain high enough? Will he be stabilized enough for them to begin extracting the fluid? 

While working on him, Joel can see them pull one syringe full of the fluid in his bell. Then a second syringe. A third. A fourth..........Constant working and doctors moving around. 

Finally, they say, "Alright Dad. C'mon on over and bring your camera!" Relief fell over us. Joel was able to see our sweet Jonah.

Joel came back to me with the picture so I could see our sweet baby.

It took them a little while to transfer him to the incubator to be transferred to Children's.  But eventually I was able to see him laying in there.  It wasn't long before they took him off.

Joel immediately went with them and stayed with Jonah.  After they got me all put back together I had to stay in recovery for another 6 hours before they would take me over to see him.  It was the longest 6 hours.

Welcome to the world, Jonah Donovan Naylor

Jonah was a name we've had picked out since my first son so it was easy deciding on a first name.  However, we had trouble thinking of a middle name.  We wanted him named after my dad and grandpa.  They both have the middle name Don.  The whole pregnancy we were back and forth on middle names.  The minute we found out all that we were going through we knew this baby needed a middle name that stood for being how strong of a fighter he was.  Donovan was the perfect fit since it has Don in it and the meaning is "Strong Fighter."  He definitely is a strong fighter!

20 Blessed Days

What should have been 80 days turned into only 20 days, 20 precious days God blessed Jonah with.


Day 1:  Sunday, June 8th Jonah received his 1st blood transfusion while still in utero.   They also did an amniocentesis to check for infections.  His hemoglobin level was at a 2 and normal levels are 12-14.  Later that evening they gave me the 2nd steroid shot to help his lungs.

**For those of you who don't know how the blood transfusion works I'll try my best to explain.  I am taken into the OR and prepped as if I'm getting a c-section done.  They prepare me for this in case of an emergency during the procedure.  I'm given either a spinal or epidural to numb the bottom half of my body. At this point I can't see anything and I'm just listening to what the doctors are saying to each other.  There are many doctors in the operating room.  They then stick a needle through my belly, through the placenta, and into the uterus.  They have to get the needle into his umbilical cord.  When they are there they draw waste and quickly send off for numbers/results.  Based off of this they then know how much blood to give him.  The hardest part is getting the needle into the cord because of how small it is.**

Day 2:  Monday, June 9th Jonah had his 2nd blood transfusion.  They also did an echo on his heart and the results were good.  His hemoglobin level was now up to a 4.

Day 3:  Tuesday, June 10th we were able to go home.  However, that evening I had lots of cramping/contractions so we were brought back to the hospital.

Day 4:  Wednesday, June 11th we stayed at the hospital for monitoring.

Day 5:  Thursday, June 12th they did a doppler ultrasound.  This checks the blood flow through the brain and it showed that he was still anemic.  They also did a biophysical profile during the ultrasound.  For this they look at 5 things, body movement, muscle tone, amniotic fluid, and heartbeat.  Jonah failed.  They did say he didn't seem to have very much fluid around his heart as before.

Ultrasound on 6/12.  You can see how puffy his face looks from the fluid.

Day 6:  Friday, June 13th they did his 3rd blood transfusion.

Day 7:  Saturday, June 14th he has his 4th blood transfusion and also gave him platelets.  His hemoglobin level was an 8.  We were sent home that evening.

Day 8 & 9:  Sunday, June 15th and Monday, June 16th we were able to be home.

Day 10:  Tuesday, June 17th I went in for the doppler ultrasound and it showed he was still anemic.  He still didn't have as much fluid around his heart and his skin didn't seem to have as much fluid around his head.  His biophysical profile was better this time around.

Day 11:  Wednesday, June 18th he had his 5th blood transfusion.

Day 12:  Thursday, June 19th he had his 6th blood transfusion and his hemoglobin level was up to 11.  We went home that evening.

Day 13, 14, 15:  Friday, June 20th, Saturday, June 21st, and Sunday, June 22nd we were at home.

Day 16:  Monday, June 23rd I had a non-stress test done.  I was hooked up to monitors and they watch contractions and baby's heart rate.  Jonah looked extremely great but I was contracting.  They checked my cervix and I was not showing any changes or signs of labor so we were sent home.

Day 17:  Tuesday, June 24th while we were at home I received a phone call from my doctor saying that I now have developed Cholestasis.  My bile acid test came back at 95 and normal is 0-6.  My liver enzymes were a little raised.  Now that I have this they wanted me to come into the hospital permanently.  They will monitor me for an hour everyday, watching the baby.  Cholestasis is something that can cause stillbirths and on top of Jonah having hydrous then they wanted to keep a close watch.  That evening while they watched me Jonah looked good but I was having contractions.  They checked my cervix and no change.

Day 18:  Wednesday, June 25th we were monitored and everything seemed fine.  Jonah received his 3rd steroid shot.

Day 19:  Thursday, June 26th I had an ultrasound done.  They did the biophysical profile on Jonah and he did great and passed!  His skin around his face is looking a lot better.  They still see the fluid in his belly and a little around his heart.  They can no longer measure the blood flow in his brain to see if he is anemic because of the number of blood transfusions he's already had.  So they are assuming he is still anemic and will continue the blood transfusions.  His next one should have been July 1st.  They also gave him his 4th steroid shot.  

Ultrasound picture on 6/26.  You can see the fluid in his belly.  His face is looking good.

Day 20:  Friday, June 27th we were being monitored.  They didn't like the dips they were seeing in Jonah's heart rate so they moved me to labor and delivery for more observation.  After what seemed like all day of monitoring they were going to do an ultrasound to do the biophysical profile.  About 40 mins into it they tell me he has done them all except for showing the practice signs for breathing.  He only has a total of 90 mins then they assume he doesn't have enough oxygen and they will deliver.