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. 

Feb 28, 2010 - 9 days old - Minor Bump on the Roller Coaster

(From CaringBridge Page)

Feb 28, 2010 at 12:25 am - Minor Bump on the Roller Coaster

Jayden was having some issues with his breathing. They had to work on clearing up an airway problem so his oxygen is back up to 38% but he is doing ok now.

Feb 27, 2010 - 8 days old. He is SO CUTE!!

(From CaringBridge Page)

Feb 27, 2010 11:30pm

We were all pretty excited that Jayden had made such an easy transition off the ECMO & they had even brought his oxygen level down from 40% to 28% but unfortunately it didn't last long as he had his first bump in the road since coming off ECMO with some issues with his breathing. He gave them a bit of a scare with an airway problem & dropped his levels out but they were able to get on top of it pretty quick. They had to put his oxygen level is back up to 38% but he is doing ok now.

Alicia woke up this morning with a 101+ degree fever (probably due to an ear infection) so she could not go up to see Jayden today. It broke by noon & she is on an antibiotic so she should be ok to go Sunday.

Got some pictures of his LONG fingers legs & toes. He is gonna be a long kid! 

Feb 26, 2010 - 1 Wk Birthday Present - NO MORE ECMO!

(From CaringBridge Page)

Feb 26, 2010 11:33 pm 

Take a look at what is missing in the picture...THE ECMO IS GONE!!! 

Jayden trialed off ECMO earlier this afternoon successfully on the first try so they took him to surgery late in the afternoon & removed it completely! 

Now we have a new battle as now he has to support all his functions with just the breathing machine & basic support ALL on his own so the next 48 hours will be critical as he can NOT go back on ECMO once it is off. Many prayers are still requested!

Alicia was walking on pins & needles all day waiting for updates & was SO relieved to be able see him after surgery doing so well. She may wait until the end of the week-end to do visitors as he needs to kept as stress free as possible during this transition. She will make the decision on a day-by-day basis.

The question has come up about the status of his 2nd lung. We won't know until he gets to surgery hopefully next week. At this point he is too fragile to do a CT study or MRI, and X-Rays & ultrasound don't give a clear enough picture to tell. If there is some lung growth hiding behind the intestines & stomach up in the chest cavity we will be thrilled but based on how early the deformity was found (before the 20th week) & from what we have seen so far we don't expect to see much expect a bit of the upper lobe. His lungs can continue to grow in size until about age 8 but the upper & lower lobe structures have to be there first in order for them to get bigger with age. Hope that helps!

Again thank you for all the love & prayers. Your support has been appreciated by Alicia & Jayden more than you know!

Feb 25, 2010 - Mommy's Headache Monster - Part 2

(From CaringBridge Page) 

Feb 25, 2010 10:20 pm - The Headache Monster... Part 2

Alicia's MONSTER migraine finally backed to a dull roar today & she was able to spend about 90 minutes with Jayden this evening. It turns out she has also been fighting a bit of an infection & the doctors have got her on antibiotics. I'm sorry we weren't able to get some of you up to visit like we hoped but I thought it important Alicia have primary time with him today. She is hoping to get those who have been promised visits in to see him as soon as possible. He will likely be there at least 6 weeks so we have time.

We got some good news in that they MIGHT try weaning him off the ECMO tomorrow! If they can get him off in the next couple of days they may be able to do surgery next week. Keep him in your prayers!

I have got to get some sleep (I am dragging from several late nights in a row). Pray tomorrow goes well!!!

Feb 25, 2010 - The Headache Monster Keeps Mom Away...

(From CaringBridge Page)
Feb 25, 2010 1:09 am - The Headache Monster Keeps Mom Away...

Neither Alicia nor Shelly able to see baby today due to trying find cause & cure for Alicia's headache. Ruled out another blood clot & a couple of other possibilities but no real answers. She will have to get into the headache management clinic ASAP.

We did get an update from the NICU that he continues to progress nicely & that we MIGHT consider talking a wean off of ECMO by the end of the week. MIGHT...

Jayden is getting more active than he should be. Normally that would be a good thing but with the tubes in his chest so close to his heart that could be very dangerous so they have upped his sedation to rest him more. It's obvious he wants to get up & out into the world but he has to wait & heal some more. He is a fighter!

Feb 24, 2010 - We Have an Inflated Lung!!!

(From CaringBridge Page)

Feb 24, 2010, 12:55 am

(Ok I know I should be in bed - trying to play catch up)

Jayden continues to improve & his lung expanded yesterday (YEA!!!) His numbers are excellent & he is just cruising right along and although it is too early to say he has seen the worst of it we sure hope that is the case. He is also taking some breaths on his own, another good sign. He has started to clear the waste from his system & the puffiness from yesterday is already getting better.

Alicia made it up for about 30 minutes yesterday but today was out of the question. The spinal headache is relentless. She is going into the doctor tomorrow where I am going to make them do SOMETHING!

I am also adding a picture of the machine that is saving his life & one of his nurses inspecting the machine. They have to do that several times a day to make sure everything is working as it should. He has one nurse that just watches the ECMO unit & one that watches over him. It's kind of interesting how it works.

Daniel & I got to go up for about an hour. It was a really nice visit & so hard to leave.

Feb 22, 2010 - Good Day for Jayden, Alicia, well.....

(From CaringBridge Page)
Feb 22, 2010 11:10 pm

Jayden had a pretty good day up to when we left visiting mid-afternoon & it's been quiet the rest of the day & quiet is good. His numbers are slowing but surely getting better & they are even beginning to look ahead to working him off the ECMO (Not any time soon but maybe late in the week or early next week?) They had a minor issue in the circuit flow of the blood flowing out of his body back to the ECMO machine but they made some adjustments & it is working fine now.

(See pictures below...)

Alicia is still slowing getting better but since we are still unhappy about how the OB portion of her care went at the delivering facility we moved her back under the care of her original OB services in our home medical group system today rather than wait & we came in with several concerns that need addressing immediately. The last thing she needs is another blood clot in the lung.

I have to get back to work tomorrow so update will be late in the day unless something drastic happens.

I found a couple of websites that had great explanations of how ECMO works in case anyone is interested.

ECMO Extracorporeal Membrane Oxygenationhttp://www.uwhealth.org/healthfacts/B_EXTRANET_HEALTH_INFORMATION-FlexMember-Show_Public_HFFY_1109725221094.html

Frequently Asked Questions for Parentshttp://www.childrenshospital.org/clinicalservices/Site2270/mainpageS2270P6.html#isecmopainful

Feb 21, 2010 11:22 pm - Last Update of the Day...

(From CaringBridge Page)
Feb 21, 2010 11:22 pm - Last Update of the Day...

Alicia is home resting. Sounds like the doctors have come to the conclusion it is may be a spinal headache from the epidural, especially since it seems to follow the pattern of not being too bad laying down then it hits when she gets up. The quick fix would be a blood patch which she can't have due to being on blood thinners as a result of the pulmonary embolism (blood clot) she threw into her lung the day after Christmas. The only other fix is it will eventually heal itself over time. Problem is that time is precious and this is keeping her away from the baby.

She managed to struggle through the pain to visit Jayden for about 15 minutes before we left and he definitely seemed to know she was there! He always seems to want to get his hand to his face & you can see him trying suck on his breathing tube so I have a hunch he is getting a little frustrated he can’t suck on his thumb that he always seemed to have in his mouth on ultrasounds!

Grandma may work part of the day on Monday so updates will be a little slower as I can’t be on the internet much at work.

Feb 21, 2010 6:10 pm - Day 2 - Evening Update

(From CaringBridge Page)
Feb 21, 2010 6:10 pm - Evening Update

Grandma Shelly got to visit the NICU, baby is looking good. The hospital is booting Alicia out as they don't think they can do any more for her here and frankly she would rather go home where she can get back on her feet in a quieter environment. We are going to wait until after dark so she won’t have the sun in her eyes. She will stop by the NICU to see the baby on the way out.

No visitors before Monday & please check with Alicia BEFORE coming over as she may be at hospital or resting.

I will probably be taking the laptop off line right before we go so I may not respond right away.

Feb 21, 2010 1:30 pm - Update on Jayden & Alicia

(From CaringBridge Page)
February 21, 2010 1:30 pm - Update on Jayden & Alicia

Jayden has had a few rounds of very fast heart rate usually caused by tubes irritating the heart but they have been able to control it by small adjustments & they have medicine they can use if needed. The doctors say it is not unusual & is manageable.

The foot problem that I, his aunt & a cousin had appears to have struck again (plus a new one, Rocker Foot). I guess Shriner's will be getting another customer somewhere down the road.

Alicia was doing better with the migraine then had a trip to the restroom & got hit like a ton of rocks. We are still adjusting her migraine meds trying to get a handle on it. She is looking at baby pictures as I write this and pushing hard to get back to the NICU again. Sorry folks. Still no visitors yet.

The baby is requiring blood product & supplements to support him & there are others like him whose lives are being saved by blood donors (like Daniel in 2000 during his heart surgery). If you can donate & don't have a religious restriction feel free to donate in his name through your local home town Red Cross. For those who are local to the Portland area the NICU team did say there might be a way to be a directed blood donor. Email me off list privately at if you are interested and I can get more info. I am a previous blood donor (can't now due to medical issues) who gave 8 pints over the years & I can tell you it is a little uncomfortable but well worth it. If I could still I'd be 1st in line!

The American National Red Cross - 1-800-GIVE-LIFE (800-448-3543)
http://www.redcrossblood.org/