A Rainbow

Vini on her birthday.

We all know the story behind the rainbow.

After God flooded the earth, the rainbow became God's promise to man.

"So God blessed Noah and his family. He told them to have many children and fill the earth with people again. He gave them the plants and the animals for food.

And then God said to Noah, "Look up in the sky."

Noah looked up. The storm clouds were drifting away, the bright sun was shining against Noah's back. And against the dark grey sky, God made a brilliant rainbow appear. God said to Noah,

“You see, I have set my rainbow in the sky. This will be the sign of the covenant I have made with you and all creatures, never again to destroy the earth by a flood. It will always remind us of the promise between you and me."

Commonly people refer to a new baby after the loss of a child, as a "Rainbow Baby". It is God's promise to a grieving family. His promise? Im not sure. I have had Davinity refered to as a Rainbow baby several times since Davids passing. Im not really sure what promise is behind it, but I get it.

Maybe its a promise that never again will your arms be empty. Maybe its a promise that "life can go on" after such a terrible loss. I have heard "Its a promise that God will never again take a child from you". I dont believe that one. To many parents suffer the loss of multiple children, so I dont believe that is the promise.

Maybe, its something different to each family.

I feel that Davinity is my promise, that healing will come. I know her sweet face will NEVER replace my David, but I get to enjoy in her what I missed with him. She will fill time in an empty routine, fill space in aching arms, place a smile where a frown would normally be.

Tony makes me smile, he makes me happy and helps me heal too. He, however is doing things already that David never did. We never got to see David walk, talk, play with other children independantly, feed himself etc. We will get to relive these things in Davinity.




I wrote this post a while ago, and never posted it. I dont remember what I disliked about it, but I like it now.

Angry grief

Our last hours with David

The last few weeks I have found my self growing ever more agitated by my online support community. I realized today that some of it is jealousy. I am jealous of mothers who still have their child alive with them and in their arms. I also realized that some of it is anger. I am angry that a parent who still has their CHD child can complain. Not just general "Oh she is so fussy today!" complaining, but medical complaints. Those who are upset about being in the hospital, going to constant doctors appointments, always giving meds etc. The things that come along with having a child with CHD or any medically fragile condition. I know its just every day complaining.I know its just their frustration.

To me though, being able to do these things again would be a blessing. I'm guilty of complaining when David was here. I didn't realize how much I would miss that mundane routine. I would have loved to have spent the holidays in the hospital with David. I would have been with him. I would love to be giving him meds around the clock, checking SATs, suctioning his trach, running his feeds, going to constant appointments, not sleeping because I cant stop fearing the worst for him, etc. I would love to be caring for my CHD/trach/vent child. Even with all the frustrating demands.

Would I consider these things a blessing if David was still here? No. Id be complaining. I would do it through any frustration, and love him no matter what. How ever any parent who claims to never complain, is in all honesty, being very dishonest. We all get frustrated and complain. Even parents of healthy children. Its being a parent.

I cannot complain about them though. I don't get to care for him any more, and that hurts more than words can describe.I think that is what I'm so angry about lately. The fact that I cant and they can. I don't want to look back at how I took all the monotony for granted. I want to complain. I want to get upset when he gets sick and has to be admitted to the hospital. I want to feel scared when he has a heart appointment or an upcoming surgery. I want to whine because he is not progressing developmentally like he should. Like all parents.

 I also want to praise. I want to talk about how well my medically fragile child is doing. I want to brag about his latest achievement at his last therapy session. I want to gloat about his perfect heart check up.

The day we let David go was the most difficult day of my life. I felt like my entire body was in a vice. I ached all over. As that day drug on, and family came to be with us, I knew that at some point I was going to have to tell the doctors when to let my son die. That would be the last decision I would make for him while he was alive. I couldn't be his mom anymore. I'm still his mother, but I was no longer "in control" and that is hard to swallow.

All of these things make me angry, and they make me over react to very simple things. The fact is I'm grieving. Ive never lost someone close to me. Ever before David. How unfair that my first loss would be my first born son?

Currently I am irrational. I am an angry, questioning mother grieving the death of a child.

I want to apologize to any one who I may have hurt over the last few weeks. I do not intend on being mean. I take what people say and put my anger in it. It then turns into something that offends the memory of my child, not that it is the intention, but thats how I perceive it.

I'm not sure how to grieve, but I'm learning. I'm trying to let it just come. Currently anger is my most frequently felt emotion. So, I am taking a social network hiatus of sorts. I will be around, but not like I normally am. I will be restricting how much I share my thoughts and feelings. I will not be as prone to offer support and advise. This is for my own self preservation.

I hope this all makes sense. I felt like this explanation was something I really needed to share.

Lots of love,  Heather

See you later

David left us to go home with the lord on September 21st 2011.

David went into cardiac arrest at home and was life flighted to Pittsburgh Children's Hospital on September 19th. After arriving he went into cardiac arrest for another 90 minutes in the PICU. The doctors and nurses fought to bring our angel back, but with no luck. He was placed on ECMO, full heart lung life support.
David was doing well the first 18 hours on ECMO, he was responsive to stimulation and it seemed as though the long cardiac arrest had caused little or no brain damage.
On, September 20th while the nurse was doing her assessment, she noticed Davids pupils were not dilating.
He was taken for a CT scan, where they discovered David had suffered a massive stroke, and had a large brain bleed. This came from the large amounts of blood thinners used when someone is on ECMO.
Neurology ran more tests and scans, They informed on the night of the 20th, that David had suffered complete brain death. He would never again be the child we knew. He would never recognize us or even know anyone was there. He would never walk, talk, or play again. The chances of his even being able to sustain life off of ECMO was very thin as he had even lost the part of his brain responsible for survival instincts.

That night me and my husband called our family and friends and told them we were letting David go.

At 4:20 pm on September 21st David was set free

Free to run and play and laugh in heaven. No restrictions, no more medications, no more tubes, wires or machines. He was free.

David Lee-Ray born on December 19th 2008- entered heaven September 21st 2011.

The most glorious 2 years 9 months 2 days 13 hours and 30 minutes of my life.

I'm trying to learn how to live without him.

He will never be forgotten

Rest in piece my handsome little peanut, mommy loves and misses you so.

Busy Busy...

The crazy chaotic life which is that of a CHD/trach/vent mommy. We have been busy lately, and getting to my laptop is pretty well impossible 99% of the time.

In BIG news.....

WE ARE PREGNANT!!           Baby 3 is on the way!!!

As excited as we are to be having anouther bundle (which better be my girl!), it is killing my nerves waiting on our fetal ECHO. I'm just praying for a heart healthy baby.

In BIG David news, his cardiology appointments are now every 6 months! Yep, 2 years of ICU life, less than 7 months at home, and already on 6 month visits!!! He is progressing so well.

He is up to 4 minute sprints off his ventilator! Now, 4 minutes may now sound like much, but for an almost 3 year old with BPD and pulmonary fibrosis, that has been on a ventilator since birth, 4 minutes may as well be 4 hours!! So, yea this is HUGE for David!

Now, in physical and occupational therapy, he is prop sitting for about 5 seconds at a time unsupported and interacting more with other children!! He now says HI, NO, and UH-HUH!!

With RSV/Cold/Flu season setting in he has been a bit sick lately. Sleepy and very mucus filled, but all in all he has been great!!

Little brother Tony is growing fast!

And has become quite the big helper (as seen filling bubbies humidifier lol!)

SO, this was my little update!

Lack of night nursing may have actually come in handy after all!!

(MAYBE I will get Davids Journey updated next....?? who knows!!)

Heather

Wearing clothes!!

Now, anyone with a baby who spent any amount of time in the NICU, knows how the very little things can be THE most exciting. Things like sucking on a pacci for the first time. Drinking from a breast or bottle for the first time. The first audible cry. Turning off the warmer bed.

Off the warmer!!

Finally wearing clothes

Sleeping in a crib

A face free of obstruction

Things that most new parents don't even consider a big deal, are huge milestones to a parent of a NICU baby. It will take David much longer than your average child to reach typical milestones. Like rolling, holding up head and neck, sitting unsupported, crawling, eating solids, using a sippy cup, walking,  etc. He is two years old and cant do any of those things. But I know that when David does do all these things, I will appreciate it in a way, that only a parent of a special child can!!!

Lets get on track.

The morning of Davids first OHS

I want to apologize for being so "jump aroundish" with my blog. So, I'm going to attempt to get things back on track.

David has not been in the hospital 2 years because he was "kinda sick". David, up until about 3 months ago was always critically ill. David has spent about 85% of his life sedated, and about 45% of his life paralyzed.

After Davids trache operation, we had a few good days, but that didn't last. David was on a drug called Prostiglandin (PGE1) from the moment he was born. The purpose of this drug was to keep his PDA (Patent Ductus Artery) open. Now in a healthy infant, or in another CHDer with non compatible defects, keeping the PDA open is life threatening. Its funny that this little duct is what Davids life depended on. David Interruption in his aortic arch did not allow blood flow to travel to his lower body. The PDA kinda "bypassed" that interruption. When David was about 3 weeks old, the PGE started to no longer be effective, and the ductus started to close. This was a BIG problem.

David went in for a heart catheterization when he was 42 days old and was scheduled for OHS at 48 days old on January 29th 2009. His lungs were getting flooded by blood because of the PDA being opened and it was really effecting his respiratory status. With the PDA narrowing it was restricting blood flow to his intestine and kidneys. David had absolutely no bowl sounds or movement for 8 days. He also was retaining fluid like crazy because of decreased kidney function.

At 7 am on the day of surgery, we handed our baby off to the surgeon, Dr. Kamal Pourmagadaum. The procedure he was having done was called a Hybrid. This consisted of placing bands around his pulmonary arteries to restrict blood flow to his lungs and placing a stint in the PDA to keep it open. Yes, David was born with Pulmonary artery stenosis, but they were not narrow enough to restrict flow sufficiently.

David also was born with a VSD and ASD, so his blood was mixing oxygenated and un-oxygenated. This was actually working to Davids advantage. They did not want him saturating above 75-80% because he would be over oxygenating his lungs seeing as though oxygenated blood should never enter the lungs. So in addition to the hybrid, during surgery they went in and actually made the VSD a bit bigger. This helped to bring his saturation's down with out the use of Nitric, which David had been on for 2 weeks.

The surgery sounded simple enough but when they started the banding part of  the procedure David went into cardiac arrest........for 48 minutes. The surgeon performed chest compressions for 22 minutes. His dedication to not letting David go, amazes me to this day. Most surgeons would have called time of death after a few minutes, but not our surgeon, 22 minutes with his hand in Davids chest pumping his heart until he could get it to start on its own. After the first 22 minutes Davids heart would sporadically stop and require compressions again.

During the surgery my husband and I were pulled from the waiting room into a smaller consultation room. When we walked in we saw the social worker and the chaplain sitting on the sofa. I started crying instantly. I thought they were going to tell me my baby was gone. Instead they told us about what had happened and told us that Dr. Pourmagadaum was pouring his own heart into keeping Davids heart pumping. They prepared us for the fact that David may not come back from the OR and then we sat and waited.

After about another 6 hours The OR nurse came and told us that David was stable yet critical and that he was on his way back from the OR. They had accomplished all they planned to do, now it was all on David.

Fresh out of the OR

It was after midnight before we were able to see David.

The doctors and nurses told us to be prepared. That David may not make it through the night.

That night was hard. His pressures dropped all through the night, he spiked temperatures several times and his heart rate shot up over 200 a few times that night.

Over the next few days David made slow progress, and actually recovered amazingly well :) Davids recovery lasted about 2 weeks, then he was moved back to the NICU. For about 2 weeks, things were going well. That again, didn't last.....................

Almost Home



Davids Birthday

  I will always remember the feeling I had, the first time I saw David after his birth. It was horrible seeing so many things covering his poor little body, me not knowing if he was in pain.



12 hours old

  All I could do was cry. I just kept thinking "Will he be ok?" and "Why him?"



After Transport



  The last two years have been hard on us all. Especially David. 

After Tracheotomy

  After many surgery's, " I don't knows ", sleepless nights, and being scared beyond belief numerous times. David is doing well.

After two years of hospital life, David is finally almost able to come home. We are set to be home next week. We have lived in hospital ICUs for two years, and I'm wondering how it will be at home. Will I know what to do? What if I mess up? Will he like it at home? Will my family be as supportive as they say they are going to be? I am ready for his homecoming, but a little nervous.

WELCOME "ALMOST" HOME DAVID