March 29, 2010 - Jayden is a YouTube Star!

(From Grandma's Facebook Page)

Our little Jayden is a YouTube Star! 

The new CDH Awareness Song video "I'll Never Let You Go" by The Jammies features over 700 cherubs including Jayden at 3:10.

Please feel free to repost anywhere to raise awareness! 

Song available soon on iTunes.com with proceeds donated to CHERUBS for CDH Awareness!

March 28, 2010 - Visiting Jayden

March 28, 2010 7:59 pm 

(From CaringBridge Page)

It's been two weeks since Jayden's passing and sometimes it still seems like yesterday & at other times it seems so long ago. 

Another baby, A.J., has lost his fight against CDH and another baby little Joshua hangs on by a tiny thread, his parents at the same decision point Alicia was this day just 2 weeks ago. 

This condition is a TERRIBLE one. Only one of the babies we know of born this month has had their surgery & are doing well, breathing on their own, learning to eat & looking forward to going home soon. We are so happy for them, yet look for answers why not Jayden? We hope that maybe his short time here will help to make others aware of CDH and how important it is to spread the word & support CHERUBS as they work towards research & awareness so that others may be saved from this sadness also.

Alicia & Grandma Shelly went up today to bring Jayden fresh flowers & add the pinwheel & balloon (it looks like the deer ate the roses Grandma Shelly brought up a week ago). Alicia is saving for a headstone but it will likely be summer before she will have enough funds to do it.

Alicia still has good days & bad. She still has several follow-up appointments with several specialists & the doctors are still trying to decide how to proceed with the blood thinners to prevent another embolism. Hopefully it will only be a couple more weeks on blood thinners.

Added a few more pictures. I am working on a video to put the pictures to music but as technical as I am on computers this is one area where I am a novice so it may be a bit before it is ready. I will post a link to it when it is ready.

March 27, 2010 - Two Weeks...

March 27, 2010

(From Grandma's Facebook Page)

 

Jayden - Today is 2 weeks since you went to Heaven. 

We love you & miss you! 

Grandma.

March 26, 2010 - A.J...

March 26, 2010

(From Grandma's Facebook Page)

Another baby lost to CDH. Please pray for A.J.'s family.

March 22, 2010 - Help raise CDH Awareness

March 22, 2010

(From Grandma's Facebook Page)

CDH affects a baby every 10 minutes, over 600,000 babies since 2000 - killing 300,000 including our precious grandson Jayden this month. Help us raise awareness & save the cherubs! http://www.savethecherubs.org/. 

 

Help raise CDH Awareness & by reposting this status update for Tues! 

Our goal is to get over 500 CDH families & friends to post!

March 20, 2010 - Jayden's funeral

March 20, 2010 4:44pm 

(From CaringBridge Page)

We had Jayden's funeral & burial yesterday. The weather was nice & warm. The wind tried to cause problems during setup but it stopped by the time we started. Fr. Neil did a great job and it was very comforting.

Alicia is doing ok. The skills for working through grief learned at the Dougy Center years ago after her father's passing & the kindness of the nurses and doctors in letting her spend as much time with him as she wanted helped so much. The staff at Springer & Son Aloha Funeral Home also did a great job with their sensitivity & allowing her to have a private viewing.

Thank you for all those who could come (especially Aunt Kim who made the trek all the way from Seattle!) and the kindness, love & support of those who could not. Alicia & I hope that Jayden's legacy will be to remind us all to love each other every day as each day is precious & none of us are guaranteed tomorrow, as well as helping to make folks more aware of CDH.

I want to give an extra special thank you to those wanted to help with expenses, especially to the family in Arkansas. We haven't seen you in a long time but please know how much you are all still loved. We still hope to get out there in a year or two & we will give you all hugs in person. For now <<<HUGS>>>.

March 19, 2010 - Thank you for everything...

(From  Grandma's Facebook Page)

Thank you so much for all those who came to Baby Jayden's services today & all those who couldn't but sent well wishes & love. I think he is looking down in approval. :-}

March 19, 2010 - Thank you everybody...

March 19, 2010
(From Grandma's Facebook Page)

Thank you so much for all those who came to Baby Jayden's services today & all those who couldn't but sent well wishes & love. I think he is looking down in approval. :-}

March 16, 2010 - Update on Services

March 16, 2010 

(From CaringBridge Page)

Thank you for all your wonderful support - it has been such a blessing!
Alicia is in the numb phase & Grandma Shelly cries on the drop of a hat but we are making it through. Daniel has been trying to be strong for both of us but he is sad too.

We had the meeting with the funeral home today & went out to cemetery to look at the plots still left open close to her cousin Alex and she has narrowed it down to two. We will meet with the staff tomorrow to confirm it.
Barring any unexpected changes we will be having a gravesite service at Mt. Calvary Cemetery on Friday at 3:00 pm. Daniel's cousin will be officiating. Any of the friends & family who can make it are welcome to come. The weather is supposed to be a partly cloudy 65° with only a 10% chance of rain so that is encouraging to hear.


We will not be doing a reception but hope to do a celebration of life in May after Daniel's parents return from California. If Jeremy can get off work for St. Patty's Day he & Alicia will likely make our St. Patty's Day celebration an Irish wake of sorts.

Since the local paper recently changed their policies on obituaries & now charge up the wazoo we may wait to buy a nice one until the celebration in May. For those who want to donate to charity we are requesting you donate to in Jayden's name to either: 

CHERUBS (The Association of Congenital Diaphragmatic Hernia Research Awareness & Support)
3650 Rogers Rd #290
Wake Forest, NC 27587http://www.cdhdonations.org/

Your Local Red Cross Chapterhttps://american.redcross.org/site/Donation2?idb=167750579&df_id=1095&1095.donation=form1

Also if you can, babies like Jayden & adults depend on blood & blood products for life's emergencies. If you not medically restricted from donating or don't have a religious restriction feel free to donate in his name through your local home town Red Cross. HELP SAVE A LIFE!

March 14, 2010 - Our Little Cherub Warrior.....

Written March 14, 2010 7:55 pm 

(From CaringBridge Page)

It is with deep sadness that I must write Jayden grew his wings at 4:01 pm (PDT) this afternoon of complications from his Congenital Diaphragmatic Hernia. He passed in his mother's loving arms. He was 23 days old.

He had the spirit of a Celtic Irish/Scottish warrior to very end.

We are home, Alicia is resting. I still have phone calls to make & things to do so I will post additional info later.

Jayden Scott Gilbert, 02/19/10 - 03/14/10, Age 23 Days

March 14, 2010 - Day 23 - Phone Call

Written March 14, 2010 10:22 am 

(From CaringBridge Page)

Just got a call from Alicia, Jayden has taken a bad turn in the last few hours. I have to get up to the hospital. Not sure when the next posting will be.

March 13, 2010 - 22 Days Old - Kidney Dialysis, Day 3

Written March 13, 2010 11:55 pm 

(From CaringBridge Page)

This morning Alicia slept in until late morning & awoke more restful than she had in over a week (except for the fire drill alarm that went off in the middle of the night).

Jayden had a slightly damp diaper overnight but still not the soaking he needed to have. He kept his numbers fairly stable until later morning when they noticed his blood pressure was starting to drift down slowly. He did have a couple more slightly damp diapers (still not the soaking he should be doing) so it is still not promising his kidneys will restart & by the evening we hit the end of day 3.

Here's where we are:

Good:

  * Very good tolerance of Mommy holding him the night before.

  * First signs of wet diapers in over 24 hours

  * Potassium in normal range and BUN & Creatinine coming down (still way too high).

  * No increase in swelling in some areas & even a small drop in others.

Not Good:

  * Having a harder time keeping the blood pressure & sodium up.

  * Red (probably blood) showing up in the dialysis drain which persisted all day.

  * Red & brown showing up in the GI tube.

Bottom line:

(1) Kidneys can take up to 5 days to turn but it is EXTREMELY RARE hence the saying of "If they don't turn by day 3 they probably won't". Is what we are seeing the beginning of the turn or just a last whisper? No one can tell us for sure.

(2) Blood in the dialysis line & GI line can be signs of stomach & bowels shutting down & even possible bowel death.

(3) Blood pressure falling may be a sign the heart is almost done.

If none of the good signs had appeared it is highly likely she would have called it by now but she can't ignore the possibility he COULD be about to make the corner. She decided as long as he is continuing to fight, she will give him that chance as far as he wants to go until day 5 if needed. If however his heart goes out in the meantime then it is finished & it was time.

Alicia is staying the night in the parent’s room again & Grandma Shelly is home for short snooze.

March 12, 2010 - 21 Days Old - Momma Held Jayden!

Written March 12, 2010 11:34 pm 

(From CaringBridge Page)

** Long Journal Entry Folks **

Today (especially tonight) has been one of the most incredible, exhilarating, scary, terrifying days of my life...

Alicia & Shelly (and a little later Daniel) were up at the hospital all day until the 7:00 pm shift exchange waiting for a sign of output that still did not yet come. On the way to the hospital we talked about the "what ifs" & how Alicia wanted to handle which cemetery, burial vs. cremation, when & how to do a service & how to pay for it as we are extremely financially limited now. We also talked about in case he did turn the corner getting him through to the next milestone of backing off to the standard ventilator to get ready for surgery and so on. We also discussed if she wanted him baptized since she is not super religious. Pretty heavy topics. 

No sooner did we get up to the hospital the staff was having the discussion of did she want a DNR (do not resuscitate) order added if his heart stopped & did she want to hold him? They had brought up the subject of holding him the night before but since that meant that it was highly likely he would code in the process & he could die in her arms so she elected not to. Now with no progress made toward output it seemed more likely we were not going to see a restart of the kidney function & it might be time to let him go. 

One of her biggest dreams had been to hold him but was she willing to risk loosing him in the process? All day she debated within herself the positives of maybe it would make him relax enough to kick start the kidneys & calm his heart which is not getting good blood flow to the kidneys as well as fulfilling her dream and the negatives of him crashing & dying in her arms (which could have been a positive of sorts as well as he would have been there in her love). 

Daniel headed home to run errands & feed the cats while Alicia ate dinner & I moved the van to the evening exit door area & when I got back Alicia announced she was going to hold him when we got back up. I was taken aback at the sudden decision & realized we could loose him TONIGHT. As much as I support what ever decision she makes I found myself immediately struck with fear. 

As we went to the unit there was a nervous quiet calm about her while I was just terrified. She told the nurse of her decision & they started immediately get things in place. She also requested to have the baby baptized before he was moved just in case he passed. The chaplain came up & did a beautiful baptism which I videotaped & they started moving stuff to get ready for the move. 

As every minute ticked closer to the move my dread grew almost exponentially. I tried to get the video camera ready in a futile effort to keep myself busy & distracted then started taping as they started moving him. I swear my heart stopped. As they moved him his numbers looked fine & they laid him on Alicia's lap. I waited for the shoe to drop expecting any minute alarms to start blaring but they never did. She held him for almost 15 minutes singing & talking to him & loving on him before her arm & overall tiredness let her know it was time to go back up & then the terror started again as they moved him back. The whole time from start to finish his numbers were good & it was almost like he was saying "What's the big deal folks?" Amazing! Alicia went to stay in a parent’s room they have for her for the night & after another hour grandma went home to write this entry. 

He is still with us fighting, but what will he do on Saturday...

March 12, 2010 - 21 Days Old - First Update of the Day

Written March 12, 2010 10:32am 

(From CaringBridge  Page)

Not much to tell. Exhaustion hit us last night & since we got no call in the night to go back up we are getting a late start today.

No call means either no change (which in this case would not be good) or good / improving news. We will know soon enough.

March 12, 2010 - 20/21 Days Old - Late Update from Friday

Written Mar 12, 2010 12:20 am 

(From CaringBridge Page)

We got back up to the hospital about 8:00 pm after picking up one of Alicia's closest almost lifetime friend (the other came up with her family last night) & we visited until her aunt, cousin & a friend of theirs could come up & visit about 10:00 pm. We are very blessed to have good family & friends & love every one dearly. Several others out of town have called several times as well.

We had a tiny miracle as he had his first wet diaper & a little output in over 24 hours but it is not even nearly the amount he needs to start moving to be turning the corner. As much as we want to say maybe this is a sign we are very guarded & know Friday will likely tell the tale.

After dropping off our friend we are home as we are still on almost no sleep. We will be back in the morning...

March 11, 2010 - Smile... :-(

March 11, 2010

(From Grandma's Facebook Page)

I am so reminded of the Charlie Chaplin song used on Muscular Dystrophy telethons: 

Smile, though your heart is aching, Smile, even though it's breaking...

March 11, 2010 - 20 Days Old - Afternoon Update...

Written March 11, 2010 4:00 pm 

(From CaringBridge Page)

Before we left for the hospital we picked out a couple outfits, his baby books & a BEAUTIFUL baby blue blanket that has "Little Miracle" on it with angel wings to take with us just in case...

When we got to the hospital this morning Jayden looked a little better but his numbers are still mixed. His potassium is alot better but two of his kidney numbers (Creatinine & BUN) are still VERY bad & he still has had no output on his own. We have bought him a day or two to give the kidneys a chance to restart but the window of time he has to turn it around is quickly slipping away. An echo of the heart was inconclusive as the vibration from the breathing machine, swelling & intestines pressing on the heart are making it hard to see if the heart is getting good fluid levels in & out. Basically we still don't know.

Jayden's Uncle Jeremy was up for about 3 hours & his odd sense of humor did a great job of getting Alicia & I to laugh and smile some! We are still trying to get family & friends up tonight to visit but we had to come home for a bit as Alicia did not sleep at all last night & after being up over 24 hours straight she is falling asleep sitting up. We will be back up at the end of shift exchange about 8:00 pm if we don't get any calls between now & then.

March 11, 2010 - 20 Days Old - Calling family & friends...

Written March 11, 2010 6:54am 

(From CaringBridge Page) 

We got an update from the hospital a bit ago. There is not any real improvement & he is requiring more medication for his blood pressure & agitation.

We are calling family & friends...

March 10, 2010 - 19 Days Old - A Tough Day...

Written March 10, 2010 - 10:33pm 

(From CaringBridge Page)

It has been one of the toughest days. Jayden's kidneys continued the downward slide and by mid-afternoon his labs were looking very bad with no output for 24 hours so Alicia was faced with a very difficult choice to let Jayden grow his wings or try to do kidney dialysis in hopes of relieving the pressure & giving the kidneys a chance to restart.

We had a quick bedside consult with Dr. Bliss, the surgeon who is expected to do the CDH correction surgery & the neonatal kidney specialist (I can't remember his name) for about 20 minutes. We were weighing the encouraging signs such as a good kidney ultrasound that suggest they may be able to restart given the right treatment & continued reasonable oxygen & CO2 levels (considering the assault the kidney failure is putting on all his systems) & the negatives of the procedure & the sky high panels almost but not quite to the point of no return. The doctors are not sure why he has taken this turn as there appears to be no obvious cause but are suspecting an infection not evident on the blood workups. They are running 3 different antibiotics in attempt to knock it down in this is the cause.

We also looked at the logistics of getting a good access location as the neck is not available since it was used for the ECMO before & can't be used again, going for the groin which is horribly swollen & may not be big enough or a doing a peritoneal dialysis which goes through a membrane in the abdomen that works well for non-CDH babies but they had not tried in a CDH one here before & might pose some big risks because of the lack a complete diaphragm. After weighing the options we were willing to let them try the peritoneal access with the understanding that if they couldn't gain access there or saw signs of distress they would go for the groin. It was also made abundantly clear that no matter which route we go if he does not improve pretty quickly we will be out of options.

Luckily they got good access right away & took a lot of fluid off him but his pulse is still very high & his blood pressure is still VERY low so it is minute by minute again. Alicia has been so brave through this & is fighting for him but also looking for signs from him if it time to let him go. As much as we still pray for a wondrous miracle she knows that point may come much too soon. After a long exhausting evening we are home to try and get some rest & pray the phone doesn't ring in the middle of the night...

We got a few family friends through tonight to visit & going to try and get the remaining through tomorrow just in case.

March 9, 2010 - 18 days Old - Jayden's Blessing

Written March 9, 2010 - 9:45pm
(From Jayden's CaringBridge Page)

Today saw some encouraging signs along with very concerning ones. Jayden has quickly worked his oxygen requirements back to room air levels on the oscillating ventilator & his CO2 levels are the best we have seen in days but the kidney numbers continue to be discouraging, his output is still low & the staff seems to think his swelling has not gone down much and are getting very concerned. I think the swelling has gone down just a little tiny bit but it could just be my optimism. Getting the kidney function to pick up & keeping the other numbers stable are the priorities right now. The waiting is so very hard.

The hospital chaplain that was on duty and in the resuscitation area the day Jayden was born stopped by tonight and talked to Alicia & I for a long time. The chaplain used to be a nurse and is also a mom so she was really able to relate to the situation on all levels. Before we had to leave at shift exchange she joined us in giving Jayden a blessing & praying for him. We are amazed of how many people are praying for this little man!

March 8, 2010 - 17 days old - A Double Bumpy Day

Written March 8, 2010 10:44pm 

(From Jayden's CaringBridge Page)

Today was a double bumpy day with both Alicia & Jayden. Alicia started to show signs her blood thinner was doing the job a little too well & wound up in urgent care to see her symptoms needed treatment. As soon as the doctors were comfortable she was in no danger they released her to go up to the hospital to see Jayden. 

Alicia had been getting updates that Jayden was hanging in there; however we knew that he was still needing his oxygen levels increased & the CO2 levels were also still creeping up. We were hoping that just a little longer on the standard ventilator would see a positive turn and we could start to seriously discuss a surgery date. 

As we were walking into his area she was devastated to see the respiratory therapists & nurses just finishing up putting Jayden back on the oscillating ventilator again, this time combined with inhaled nitric oxide (not to be confused with nitrous oxide). 

One of the hardest things about being a parent is seeing your child hurting. Sometimes I wish I could go back to when my kids were little & all they needed was a kiss & a hug to make things better… :-(

We are not sure if he had nitric oxide before the ECMO but it is definitely the first time he has had it since coming off ECMO. It is a helpful treatment as it relaxes the blood vessels so that blood flows more freely & hopefully will bring down some of the hypertension in the lung but it was NOT the turn we wanted to see. Luckily his numbers started coming back down right away so we will take that as a positive sign. They also have pretty much ruled out the vena cava syndrome but are still not totally sure what is causing the swelling which has advanced into his torso. They changed a couple of other meds & his output is better so hopefully the swelling will go down soon. Surgery seems so far away now but we still pray.

Thank you all for the sweet guestbook entries & well wishes. We read every one & feel so grateful that you care so much. We're sure your prayers & wishes are a big part of what is helping Jayden get through this! If any of you have sent Alicia emails on her personal email & have not got a reply it is because her computer is down & she is borrowing my laptop when it is open.

March 7, 2010 - 16 Days Old - The Roller Coaster Continues...

(From Jayden's CaringBridge Page)

Written Mar 7, 2010 10:22 pm 

The roller coaster continues. Again today has been a mixed bag but at least it has been more good than bad. They tried a second attempt to trial Jayden off the oscillating ventilator to a standard ventilator about 9:00 am & as of when we left at about 9:30 pm he was still on the standard vent. His numbers have only been fair most of the day so they are keeping the oscillating ventilator on standby in case he needs to go back on it, but he was showing some improvement through the evening so that was encouraging. There is some discussion that maybe we can look at surgery by the end of the week but like everything it is a BIG maybe.

The other area of concern is that he may have developed a condition called Superior Vena Cava Syndrome (SVCS) as a side effect of the ECMO. The superior vena cava is a large vein that transmits blood from the upper body back to the heart. When there is a partial blockage or compression it can cause symptoms like the swelling of the face & neck which he is having now & has been getting worse through the weekend. The good news is that if he is affected by SVCS is it rarely an emergency, but they do want to resolve it as soon as possible. He is already on diuretics & blood thinners so they may just give him a bit more time to see if the medication clears the swelling on its own, if not then they may have to consider a stent to keep the vein open. They will be doing an ultrasound in the morning to see if that's what's causing all the swelling.

March 6, 2010 - 15 Days Old - A Bit of a Bumpy Day

(From CaringBridge Page)

Saturday, March 6, 2010 10:13 pm - A Little Bit of a Bumpy Day

Jayden was still having issues with stressing out but has been a bit better today. We were thinking about having a visitor or two but quickly realized that since even a little bit of nursing care was too much, a visit from extended family or friends was out of the question. It was a hard visit as all we could do is sit & watch as they wanted to try to avoid ANY stimulation that might set him off again.

Despite this setback the doctors still think he might be able to try a second trial off this ventilator back to a standard vent on Sunday morning. We are very nervous but are praying hard for success as it is an important next step toward surgery.

Pray hard for a successful weaning off to the lower vent as soon as he is ready.

March 5, 2010 - 2 Weeks Old!

(From CaringBridge Page)

 

Friday, March 5, 2010 10:55 pm - Jayden is 2 Weeks Old!

Jayden had a pretty bumpy day with his numbers all over the place. It was kind of a mixed bag all day with blood pressure, oxygen levels & temperatures up & down (no infection) but his CO2 levels were fairly good. The nurses were frequently adjusting his rates as he seemed to have a hard time finding a happy middle. He was also very fussy & pulling at tubes & wires but had quieted down by the time we all had to leave at shift exchange so that was good. Hopefully he will have a quiet night.

When we asked the doctors & nurses if this was typical they all agreed there is no typical with CDH babies as each baby's course is unique. Not sure if that is reassuring or not. As much as we want him to be ready for surgery soon we want him to get as strong as he can before he goes in so we pray & wait.

Alicia was up visiting for 1/2 the afternoon and Grandma & Step-Grandpa were up in the early evening until shift exchange when they boot all the families out. After we left all three of us had a nice dinner out for the evening.

March 4, 2010 - 13 days old - Day of Rest...

(From CaringBridge Page)

Thursday, March 4, 2010 9:39 pm - Day of Rest...

Pretty quiet day with Jayden today. Right now we are letting him gain strength. He did get his CO2 levels down to the high 50's tonight, not quite where we want it but heading in the right direction.

Alicia made it up early in the afternoon & spent over 4 hours with him today. They are great medicine for each other and both seem to do & feel so much better after being together.

March 3, 2010 - 12 Days Old - Not Quite Ready...

(From CaringBridge Page)

Wednesday, March 3, 2010 10:46 pm - Not Quite Ready...

Alicia drove up to see Jayden & spent about 3-1/2 hours with him today. They tried to trial him off to the standard ventilator for about 2 hours today but he wasn't quite ready.

Alicia got to help with some of his care taking his temperature & changing a diaper. He's being a little stinker since that hand got free trying to get to his tubes. He's opening his eyes more & grabbing Alicia's fingers alot. His levels have been pretty good even despite the setback. Still a little discussion of surgery soon, but how soon will depend on the next few days.

March 2, 2010 - 11 days old - Fingers are good!

(From CaringBridge Page)

Tuesday, March 2, 2010 10:30 pm - 11 days old

Jayden is grabbing Mommy's finger! Jayden had a pretty good day. Now that the IV is out of his hand he WANTED to get that thumb in his mouth so they gave him a pacifier & he went to work on it right away despite the breathing tube & suction tube in the way. Alicia was helping him to keep the pacifier in place & he reached out & grabbed at her finger. Awww :-)

He still has higher carbon dioxide levels than we would like but is on room level oxygen so that is good. There is some discussion of corrective surgery but that will not happen until he is off this type of ventilator for a while, maybe next week???

Alicia felt up to driving home (about 15 miles one way) & did just fine. She will likely drive up & back on her own tomorrow.

March 1, 2010 - 10 days old... a New Setback

(From CaringBridge Page)

March 1, 2010 9:26 pm - 10 days old... a New Setback

Jayden had a bit of a tough weekend. They tried to change his position to prevent too much fluid build up in one spot but he did not tolerate the position changes well & his levels became unstable and they had to change him back to the high frequency ventilation machine, a type of ventilator that improves oxygenation & washes out carbon dioxide. It is good for helping keep the carbon dioxide level down but they can't do the correction surgery until he come off of it which could be a week or more. 

On the upside he opened his eyes for Mom Alicia for the first time Sunday night and Alicia was THRILLED.

Alicia is improving every day and hopes to be up to driving soon.