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/

Feb 20, 2010 11:40 pm - End of Day 1 Update

Feb 20, 2010 11:40 pm - Update

Posting an update before I go to bed. Still no change with the baby. Alicia is slowly improving.

He was 5 lbs 5 oz, 19 1/4 inches. (LONG BABY for 4 weeks early!)

Feb 20, 2010 6:00 am - Jayden is on ECMO

(From CaringBridge Page)
Feb 20, 2010 6:00 am - Update on Jayden & Alicia

The procedure started a little later than anticipated so they did not get Jayden on ECMO until about 5:00 am but the good news is that his levels all came up to a very good range almost immediately so hopefully he will only need the support for a few days. Alicia should be able to see him within the hour.

Feb 20, 2010 3:20 am - Not Good...

(From CaringBridge Page)

The doctors came in about 2:00 am & said although his carbon dioxide numbers are better, his oxygen numbers are falling too much & they are going to ECMO (heart lung bypass). They are doing it as I write.

Alicia is very upset & to make it harder her migraine returned with a vengeance, but she is working hard to knock it down so she can see him when the surgery is done.

They were honest in that his chances of survival are down to 40% at best but he has continued to fight hard & so will we.

Feb 19, 2010 8:50 pm - Jayden at almost 3 hrs old

Feb 19, 2010 8:50 pm - Jayden at almost 3 hrs old

(From Grandma's FB Page)

Jayden is still hanging on. We had a big concern before he was born that his lung could get the oxygen in, but not get the carbon dioxide out. They did a test 5 weeks ago that would give us a better idea of his ability and the results looked hopeful. Unfortunately that is one of the biggest problems he is fighting tonight. The doctor did come in about 7:00 pm and said he was starting to show a LITTLE improvement and that is good but he is still very critically ill.

Alicia is resting & I'm gonna have to lay down too as I have averaged 3-1/2 hours a night in the last 2 days. I will update as I get them.... 

Feb 19, 2010 - 36 wks 1 day - Jayden is Here!

Friday, Feb 19, 2010 - 36 wks 1 day - Jayden is Here! 

(From Grandma's FB Page)

Jayden Scott Gilbert was born at 4:03 pm today.
Alicia did fantastic but the baby is doing very poorly.
Please pray hard for little Jayden.

Addendum:
We did not find out until weeks later that he coded in resuscitation & they had to fight to get him back...  :-(

Feb 18, 2010 - 36 wks - Water Broke... Here We GO!

Feb 18, 2010 - Jayden's Water Broke... Here We GO!

Mom Alicia's water broke with a slow but steady leak. Since it was not a big break she didn't recognize it as the water breaking so it was late in the day after mentioning it to her childbirth coach before anyone realized what was going on. Her coach strongly suggested getting it checked, so right after class we headed once more to the hospital not expecting it to be anything serious. Once we went up, it was confirmed as water break & she was kept in the hospital.

Feb 13, 2010 - 35 Weeks 2 Days... Premature Labor again

Feb 13, 2010 - 35 Weeks 2 Days... Premature Labor again

 

Mom is back in for monitoring for pre-term labor. This one stopped quickly...

Feb 11, 2010 - 35 weeks!

Feb 11, 2010 - 35 weeks!

 

(Posting on Grandma's FB page)

Alicia made it to 35 weeks today. She has a non-stress test for the baby tomorrow. Hopefully we can etch out another 2-3 weeks!

Feb 9, 2010 - 34 Wks 5 Days - 4D Pictures

Feb 9, 2010 - 34 Wks 5 Days - 4D Pictures

 

First GOOD look at Jayden's face & last pictures before delivery. He is SO handsome!

 

 

 

Feb 5, 2010 - 34 weeks 1 day

Feb 5, 2010 - (Posting on Grandma's FB page)

Alicia made it to 34 weeks yesterday (Yea!). The baby's estimated weight on ultrasound is about 4-1/2 lbs. Things are quiet for now. Thanks to everyone for your continued prayers & well wishes!