Wednesday, August 31, 2005

When I arrived this morning, Jacob was on more oxygen & the nurse informed me a sample of his secretions had been sent to the lab to test for infection. Jacob's secretions have gotten worse over the last couple days & he's been having a harder time breathing. The culture came back positive, he's got an infection, which isn't uncommon for somebody on a ventilator. So guess what? Jake got another IV put in today for the antibiotics & they also sent a blood culture to make sure the infection isn't in his blood stream. It will be a couple days before we know the answer to that.

What does this mean? There will be no attempt of extubation while the infection is there, which will most likely be 5-7 days. Uggggg

Dr Roderick Smith came for the consult visit with us today. He talked with us for a while & then reviewed Jacob's ever growing chart. When he returned, he pretty much said the same thing that all the others's a mystery. He does have a few ideas for some additional testing that can be done. He's going to talk with Dr A. Johnson & compile a list.

We have scheduled a family care conference for Friday afternoon where both pediatric neurologists will be there. I'm not sure what exactly will come out of the meeting, but I do know it's mainly to get everybody on the same page as well as ask Kevin & I some tough questions that the doctor's need answers for in order to best care for Jacob if things turn for the worse.

Jacob did have a better day today in regards to jitters/twitching. He was pretty relaxed all day & his muscle tone was much better. Again, he showed no awake times. Maybe tomorrow I'll see those pretty eyes again.

Overall Status: Good
Visitors: Grandma & Grandpa

Tuesday, August 30, 2005

Today felt like a little set back compared to yesterday. Dr A. Johnson was in, and at the time he was there things appeared to be ok, however, as the day progressed Jacob seemed to be a bit more jittery & his muscle tone was a lot tighter over yesterday. He had ordered the Klonopin be decreased again, but after I informed Dr Kessler about what I had seen, he called Dr A. Johnson & they agreed to leave the medication as is for another day or so.

Kevin finally made it back from the slope after being gone for 5 days. I was hoping he was going to see Jacob alert & relaxed, but no go. In fact, Jacob didn't have any alert time today. Ugggg

Overall Status: Good Day
Visitors: None
Dinner Provided By: The Emery's

Monday, August 29, 2005

I'm so excited!! I couldn't seem to drive home fast enough to post all the great things today brought us. Praise God for the miracles he is doing!! 
Where do I begin?! The EEG was removed this morning, but he still had the wires attached when I arrived so I still couldn't hold him. Since the monitoring equipment was now gone, I had plenty of room to setup camp right next to his bed, at his level, & scrapbook! So that's exactly what I did!

Did I mention he was awake when I got there?! Not only that, he was awake for 4 1/2 SOLID hours!! Eyes open & focusing on subjects for the longest stretch ever, and since his head was facing my direction, I was his main target! How sweet it was to look over with him just inches away & see him looking at me!
Around 5:00 the EEG technician arrived to tell us all the wires could be removed! Yippee!! Let me tell you what; after being hooked up to that thing for several days with a cap on him...he was starting to ssstttiiinnnkkk!! I couldn't wait to massage his little head & get all that crap out of it! Course, since he was hooked up for so long, he's got more scabs on his poor head...dang it! Good thing their skin heals quickly.

So I washed his head real good & gave the rest of him a bit of a sponge bath...then...I told the nurses I wasn't going to take no for an answer...get me my comfy chair & let me HOLD MY BOY! And that's just what I did! Ohhhh...that felt SOOO good & I can tell he totally loved it too.

Oh my gosh! I forgot to tell you some of the best news yet!! (see didn't I say there was a lot of great things?!) Jacob was virtually twitch & seizure FREE!!! He was barely having any myoclonis movements & I didn't witness ANY seizures today! He was loose & relaxed & didn't tense up to rock hard when he was moved around. He also startled as a normal baby would TWICE! I happened to drop my trimmer on the floor & it about scared the ba-jesus out of him! Arms & legs went flaring & eyes got wide looking around wondering what the heck that was!

He's also up to full feedings, 60 cc's every 3 hours, & the IV has been removed!
Dr A. Johnson arrived just after I got him in my arms to tell me the results of the last 24 hour EEG study -- only 2 seizures and they were so minor he almost missed them while reviewing! They were about 40 seconds...down from 4 minutes! wahoo!!

Then we talked a bit about what his future might be like. He honestly can't tell me. He gave me some percentages; kids that have uncontrollable seizures might have a devastating outcome, no real quality of life, etc....Jacob's seizures are under control. He can't say that he'll be normal either since he's had a rough start & does appear to have some developmental delays...doesn't suck/swallow well etc.

He also said that the entire NICU staff is feeling the same way he is. In some ways this is encouraging, maybe the future might not be so bad after all; in other ways it's frustrating not having a clue.

Dr Lou spoke with Dr A. Johnson before he came to visit me about getting his opinion on having Dr Roderick Smith come take a look at Jacob. They wanted to get Dr A. Johnson's opinion first, making sure they weren't stepping on any toes. Dr A. Johnson thought it would be a good idea, so I suspect I'll be seeing him sometime tomorrow, provided his schedule allows for it.

Finally, we talked about his respiratory issues. Currently the ventilator settings are set low enough where extubation could be attempted, the problem is they aren't sure Jacob will be able to breathe effectively or if he will be able to handle his secretions. Since Klonopin can cause respiratory issues as well as increased secretions, we are going to try & wean him off the Klonopin & see if the Depakote will handle the seizures by itself; which as long as we are clinically not seeing a decrease in Jacob's condition, he should be weaned by the end of the week. It's my understanding, once he's weaned & condition is still stable, extubation will be attempted.
SPECIFIC PRAYER REQUEST: I come to you today, Father, & ask that Jacob's seizures remain under control while he is being weaned from the Klonopin, that the secretions diminish so much that he's able to handle them on his own & that once the respirator is removed, he is able to breathe effectively over time. Amen.

This is the last hurdle to overcome before Jacob can come home!

Overall Status: GREAT Day!
Growth Stats:
Weight: 7 lbs 13 oz

Visitors: Grandma & Grandpa
Dinner Provided By: Noni & Papa

Sunday, August 28, 2005

Happy one month birthday little man! I can't believe a month has gone by already. I was able to drag myself to see Jacob today for about 3 hours. He looks so good!! He's a little swollen so they may give him another dose of lacex to help with that. I witnessed complete calmness, eyes open & looking around, some twitches & maybe one true seizure while I was there today. I was there for his 2:00 feeding and as milk was going in his belly, I noticed him sucking his ventilator tube and he did it consistently! Could this be a sign of eating the right way someday?! One can only hope! He is also up to 40 cc's of breast milk every 3 hours.

Dr Parrish stopped in to visit with me. She is going to ask Dr Roderick Smith to come down & look at Jacob tomorrow. He is another Pediatric Neurologist & although Dr A. Johnson has been consulting with him, she thinks it would be a good idea for him to come observe & read his charts, as he would be looking at things from a different angle & fresh mind, just in case we might be missing something.

They removed his Artery IV line today, this was used for a constant blood pressure reading, as well as a place to draw blood for lab work without having to poke him all the time. They also removed the IV that was in his foot. He has one IV left & if his feedings go well, they will remove it in the next day or so.

He is down to 21% oxygen, which is what we breathe -- so he's essentially on 'room air'!! GO Jacob! The breaths per minute are still at 20, however they have decreased the pressure to 17.

When days are good, there isn't much to report! Thanks again to all of you that continue to keep us in your thoughts & prayers...the power of prayer is magnificent!

Overall Status: Great Day!
Visitors: Nonie & Papa
Dinner Provided By: Sarah Hoffman

Saturday, August 27, 2005

More good news! Jacob was awake for about 25% of the time during the day nurses shift! Unfortunately, I wasn't there for any of it as I came down with some sort of crud during the night. Timing was terrible, as Kevin is on the slope right now. Thankfully, sister-in-law came to take Amanda so I could get some much needed rest to try & kick this crud to the curb.

The nurse felt Jacob had even less twitching/seizures today & she definitely noticed moments when he was completely still & in a nice deep sleep. As she would do his cares, he would wake up & twitch more, but not near as much as he was.

Dr Jolley gave the order for Jacob to receive 4 - 20 cc feedings of Pedialite this morning. As of this evening, Jacob was tolerating the meds & feedings just fine & will start breast milk again tonight.

Dr A. Johnson did stop by about 7pm and watched the EEG for about 20 minutes. The nurse reported to me today that he was very happy with what he saw during that time.

Overall Status: Great Day
Visitors: None

Friday, August 26, 2005

Did I mention how much a difference a day makes? Oh yeah...yesterday I did! haha Well today is more good news! God is awesome! The previous 24 hours of EEG results are in...only 18 seizures! We are working our way back down again! Wahoo!!!

So what caused all this mess in the first place then? Here's our best guess...and a logical one at that:
1) Jacob is born & doesn't expand his lungs well, so as time goes by, C02 is getting in his system & condition is worsening.
2) He aspirates, which causes fluid to get into his lungs, causing more respiratory problems.
3) The Klonopin can cause more respiratory distress.
4) Lungs get so bad & lack of oxygen can cause anybody's system to react, with Jacob it resulted in massive amounts of seizures.
5) He gets put on a respirator to help him breathe which also helps to clear out his lungs.
6) He's on antibiotics for the surgery which is also helping to clear out the infection he has in his lungs.
7) Jacob's seizures get less & less as his body recovers from being 'sick'.
Does that make as much sense to you as it does me?! So here's the plan for the next several days:
1) Ativan was stopped tonight & oral Klonopin was put in it's place via the G-Tube.
2) Tomorrow, Depakote-IV will be stopped & begun via G-Tube.
3) Tomorrow, Breast milk should be started again in his new G-Tube, gradually increasing feeds as he tolerates (just like when he was first born).
4) Continue with EEG monitoring while the oral meds get back in his system to ensure nothing crazy is happening.
5) Continue to monitor his lung x-rays to verify the lungs are getting better.
6) Once we know he is stable with meds & feedings, as well as noticeably clearer lungs, we will attempt to extubate.
I think that covers just about everything that I discussed with Dr A. Johnson & the neonatologist tonight. We are all VERY happy to see Jacob going in the right direction, course we still don't have any idea what this means long term, we just have to take it day by day.

There is still a big question as to whether or not he will be able to breathe on his own effectively, only time will tell, but at least this time, we'll know that checking his C02 levels will be very important to make sure we don't end up where we were earlier this week.

He's also still not showing any good awake periods, however, as he starts getting off the Ativan, hopefully we'll start to see a change with that as well.

Overall Status: Good Day
Visitors: None
Dinner Provided By: The Stratton's

Thursday, August 25, 2005

I've said it once, and I'll say it again...what a difference a day makes! Jacob is doing MUCH better! Although he's still having 90-100 seizures a day, he is much calmer & not twitching near as much. How you might ask? The seizures he is having, are brief ones that don't always show externally. It's so nice to see him relaxed & sleeping soundly versus always moving around & never looking like he's in a good sleep.

They have also started to wean him off the ventilator!! His lungs x-ray was amazingly different today. Both lungs were clearly visible & much more expanded! By the end of today, he was getting 20 breaths per minute, down from 45; a rate of 20 for air pressure, down from 29; & 30% oxygen, down from 100%.

This is a HUGE much so, they are hoping to try extubating him tomorrow! Thank God!! It's thought to believe that he may have had an infection & since he was on antibiotics for surgery, it's also helped clear up the infection. I don't care what the reason...I'm just happy the near future looks a little brighter.

He is also no longer on the morphine or the two antibiotics, and they have removed the tube in his nose that was used for drainage since the surgery.

Go Jacob Go! Dr A. Johnson is much happier with Jacob's status. Again, he's still having a lot of seizures, but they are much more controlled in a lot of ways & not a life or death threat.

Overall Status: Much Better
Visitors: Cindy & Linda, Grandma & Grandpa
Dinner Provided By: The Curtis Family

Wednesday, August 24, 2005

I spent the day at his bedside again. Since I can't hold him right now, I brought along a scrapbook project to keep me entertained. Jacob is still in a critical status. His lungs x-ray today was a big shock to us. His left lung is almost collapsed & his right lung is close to being. He has what's called a 'bell shaped' rib cage which is caused by the lack of proper lung expansion. He has a lot of fluid in his lungs, most of which is probably caused by aspirating prior to the surgery. We were told today that he may never be able to breathe without support. Argggg not something we want to hear.

He was hooked up to another EEG again today. Dr A. Johnson came to review some of it at his bedside & is very pleased with how the medications are working. He stated he looks better and when I asked define better "last week before we started Keppra, or before Sunday/Monday"; he said before Sunday/Monday, which is a good thing because the seizures he's having now aren't life threatening like they were earlier this week.

Once we can start putting fluids in his stomach again, which should be tomorrow morning, we can start trying some other medications. Since he is on an IV, there are only so many drugs you can try.

His night nurse turned off all the lights & closed the door to his room. Jacob really likes dark & quiet, he really calms down & goes into a deep sleep.

Overall Status: Critically Stable
Visitors: Colleen, Ivy, & Sara
Dinner Provided By: The Dilley's

Tuesday, August 23, 2005

Wow, what a long day. Jacob's surgery went very well. They had a hard time intubating him. The first time, he had too much of an air leak around the tube & wasn't getting enough oxygen. They struggled getting the 2nd, bigger tube in & almost called off the surgery, however, they did finally get it. No transfusions were needed, thank God! I was getting a little worried as the surgery was only supposed to take 2 hours & we were creeping up to 3 hours before Dr Jolley came to tell us all was done, ok, & he was back in his room.

He was having quite a bit of twitching/seizure activity when he got back & Ativan wasn't really helping. They ordered another drug that is also part of the same family as the Klonopin, called Medazalam, that was finally on board about 5pm. It seemed to calm him a little more, but I'm still seeing some activity...sigh. He's also on morphine for pain.

Poor lil' guy has an IV in his foot & hand, an artery IV in his other hand, a tube down his nose, a G- tube in his belly, a bandage on his belly & his right quad, as well as on a respirator. Such a hard thing to watch.

He had quite a bit of swelling in his throat, which is one of the reasons they couldn't get him intubated very well. Swelling is also caused by him aspirating, which the Nisson Fundoplication will prevent from happening now.

When the EEG tech removed all the wires that he had attached for several days, the electrodes appear to have caused some scabs/sores on his poor lil' face...arggg

Kevin & I are pretty tired tonight & I'm not sure what my plan is for tomorrow, go to work, sleep in, or go see Jacob. So many hats to wear & not enough of 'me' to do them all!

Overall Status: Stable
Visitors: None

Monday, August 22, 2005

Jacob had a really bad day today & we are emotionally drained. At 8:30am I called the hospital from work to see how he did throughout the night. I was scared to hear that he wasn't doing well. Since 6am he had 6 instances of bradicardia/apnea spells. Basically he would have a seizure that would cause his heart rate to drop & his chest cavity to tighten, causing him to stop breathing.

By the time Kevin & I got there by 9:30am, he had had several more. By Noon he was up to 15 or more of these events. It was very scary & we were uncertain what decisions we may have to make. Dr A. Johnson ordered that he be given a dose of Atavin, which is in the same family of drugs as Klonopin, however it's given via IV & is fast acting, but not long lasting like the Klonopin is.

The Atavin, thankfully stopped the seizure activity. It is now believed that Jacob's condition was progressing so rapidly that the Keppra was actually doing some good, just wasn't good enough. As the medication wore off, his seizures intensified & put him into constant seizure activity throughout last night. Dr A. Johnson put it this way: "his seizures were happening more often then he was able to rest". Once Dr A. Johnson was able to review last nights study, he came back & asked that we start a new medication called Depakote. This also looks like it's helping Jacob.

Dr A. Johnson thinks this might be Severe Myoclonic Epilepsy in Infancy (SMEI), also known as Dravet Syndrome. He hadn't mentioned it before because originally his seizures were so easy to control; now that they have progressed so much more, he's beginning to think it might be. At first, he said it couldn't be detected genetically, however, he then remembered that there is one gene where they can look for it.

When Kevin & I left at 7:00 tonight, he had had 3 doses of Atavin & one dose of Depakote. Although he is still showing signs of some seizures here & there, he is much more stable & thankfully, Kevin & I didn't have any life or death decisions to make today. Dr A. Johnson did reiterate today that he still doesn't feel as though they have done all they can do & just wants us to take it one day at a time.

We have received test results back from Wisconsin where they were testing for the Hyperexplexia Syndrome; this has come back 'inconclusive'. (figures) We have also received preliminary results from the Atlanta lab that is performing the spinal tap tests, these have also come back "although elevated in some areas, they are inconclusive".

As the doctor started to tell us the results, I jokingly finished his sentence for him. He laughed & I told him that I could be a doctor by now! Who needs nursing school or a doctorate? Just spend time in the NICU like I have & it's the best OJT you can get! Scary but true.

Kevin also made a funny tonight just before we left. He said, "somebody needs to invent wireless EEG's, where the electrodes use infrared technology". that how we are going to make our millions? Get on it Kev!! *wink

Jacob goes in for surgery tomorrow morning between 10am-11am (PST), as long as he continues to be stable. Please keep say a special prayer for us during that time.

Overall Status: Critically Stable
Visitors: Grandma Cray, Grandma & Grandpa, Kerry & Jessika
Dinner Provided By: The Cray's

Sunday, August 21, 2005

I'll be so glad when this Keppra is out of his system. He had more instances of dangerous desaturations & heart rate drops today. Dr A. Johnson stopped by this afternoon to read the previous 20 hours of EEG information & reported that Jacob had over 100 seizures from yesterday afternoon until this afternoon.

I hope & pray these seizures are truly related to the medication & we aren't in for a really rough awakening come tomorrow.

Overall Status: Stable but Critical
Visitors: None

Saturday, August 20, 2005

There hasn't been too much change in Jacob's status. He's having well over 60 seizures in a 24 hour time frame. Dr A. Johnson was in today to discuss what the next approach will be. He is now feeling pretty confident that the Keppra could be the reason for the increase in seizures, seems how every time we increase the dose, the seizures multiply. We are going to wean Jacob off the Keppra by tomorrow morning. The medicine has a half life of 15 hours so by tomorrow evening it should be out of his system.

They were originally going to do a slower wean because they weren't sure what the side affects would be, however, my gut truly thinks the meds are doing him more harm, so I requested they wean him faster.

Jacob goes in for surgery Tuesday to have the gastrostomy tube put in, a nissen fundoplication performed, as well as a muscle biopsy of the right quad. He will need to be intubated & because his lungs aren't fully expanding, extubation could take anywhere from 3 days - 2 weeks (or longer), however, it's necessary for surgery.

Jacob is also having a harder time handling his secretions & I believe due to the medication, they have gotten thicker, causing a problem with his saturations. Sometimes it all gets stuck in the back of his throat, causes dramatic heart rate drops (to 40-60 bpm) and oxygen level saturations of 20-30%. VERY dangerous numbers.

That dang Keppra has caused nothing but more problems, I can only hope he starts to get better after this is out of his system.

He will continue to be on the EEG monitor until surgery so that we can keep a close eye on what the seizure activity is doing as he is weaned from the medication.

Overall Status: Stable
Visitors: None
Dinner Provided By: The Power's Family

Friday, August 19, 2005

I arrived at the hospital at 8:30 this morning to give Jacob a bath. He still had all the gunk in his hair from the last EEG & with another one on the way this afternoon, we had to get it cleaned & ready.

He loves his baths! Eyes open wide for me today & I felt as though he was just soaking in what his mama looks like! It was a bit busy for him today. Dr Jolley, the pediatric surgeon came by to assess him & write orders for the prep work on getting the G-Tube done, i.e. x-ray to make sure there are no surprises.

Yesterday, I had informed Dr A. Johnson that I didn't think we were in any hurry to perform the surgery since it appeared Jacob wouldn't be coming home soon. Needless to say I was a bit shocked to see Dr Jolley this morning. Come to find out, there are only two opportunities for him to do the surgery, this Tuesday or next Tuesday, because he is going on a 3 week vacation. Although he has somebody fill in for him while he is gone, that I'm sure is perfectly capable of doing the procedure, I think I'd rather it be Dr Jolley. I already have a level of confidence with him since he performed Brianna's surgery.

Donna, his physical therapist was by. It was the first time in a week that she was able to work with his range of motion to loosen him up because of all the EEG's he's had this week. However, the EEG tech was there getting him hooked up today & we asked if we could please work with Jacob while these tests were running, which we now can.

His poor legs were so tight. As Donna worked with him, his whole body relaxed, as if to say thank you...I've been needing that for a long time! I did notice that after his legs were relaxed, he wasn't getting startled. He was really calm. Can't help but wonder if that might be a clue to what's going on.

The 'muscle' doctor also stopped by again to follow up with the procedure done on Wednesday. He wasn't able to get a good study of Jacob's muscle's at a relaxed state, so I suggested the possibility of running the tests again while Jacob is sedated from surgery. He thought that might be a great idea & is going to talk with Dr A. Johnson.

Dr A. Johnson also stopped by for a brief visit while EEG was getting him hooked up. I wasn't there at the time, but I don't think there was really anything that we need to discuss until tomorrow's EEG results are in.

The EEG tech hooking him up was not the same one that has done the others. She uses a different method of adhering the electrode's that is SO much nicer on Jacob. It sticks a lot better, but isn't pasty & no need for all the tape on his head. It can only be removed by using a special remover. What this means is, they can leave it all attached & run continuous EEG's without an inconvenience to Jacob. We will now be able to hold him while it's running, because the risk of the electrode's coming off is not an issue anymore. YAY!

Kevin arrived at 5:30 after work & we were watching the EEG monitor. Although I'm far from an expert on reading the monitor, I do know when Jake has a seizure. He had 4 of them in 45 minutes, so I don't think the increase in medication is making a difference. We'll just have to see what the results are.

Overall Status: Stable
Visitors: Grandma & Grandpa

Thursday, August 18, 2005

Today was a very moving day for me. God has put something in my heart that is truly amazing. While I don't want to go into too many details right now as my mind is still swarming with the ideas of how I want to make it happen, I will tell you that amidst all that we are enduring, my heart is searching for ways of how I can use this experience to help other families. Crazy I know, you'd think I would be concentrating entirely on Jacob, yet I ache to find a way to help other families deal with their own NICU experience.
This is something that has been brewing in my heart since Brianna, I just didn't have all the pieces to the puzzle until now. As I was in a cab with Brianna's nurse leaving Seattle Children's Hospital to come back home, she looked at me & said, Jamie, someday you will be helping other people. I don't know what you'll be doing, but someday this experience you are going through will lead to you helping others. Coincidence...I think not. Although life sucks right now in the eyes of motherhood & medically, through Jacob, God is making me stronger & leading the way. Could this be the 'why' we have been searching for?
There is a song that has been playing on KLOVE recently & the last 2 days it seems like it has been getting played a ton. I must have caught it playing 6-7 times today, on the way to work, at work, on the way to the hospital, and even coming home for the hospital. Earlier in the day, I was only singing the chorus, not really paying attention to the rest of the song. It was as if God was sending me this message all day & little by little I would hear more of it, until finally I really heard Him & listened.
The song is by Superchick, titled We Live. I encourage you to read the entire lyric, however here is the chorus:
We live we love
We forgive and never give up
Cuz the days we are given are gifts from above
Today we remember to live and to love
This is now Jacob's song. I find myself repeating the chorus in my head constantly. It's a reminder that I truly need to focus on the now, not what happened in the past or what may happen in the future.

I hope I can find the joy & feel privileged in knowing that God may have just sent me another angel baby.

Jacob's status hasn't changed. I had a long talk with Dr A. Johnson today about the results of the EEG. The number of seizures has not changed, in fact he had approximately 60 in 24 hours. He did say, however, that the seizures were in multiple areas of the brain on previous EEG's, but this last one they appeared to all be centrally located. He wants to double the Keppra one more time to see if it will stop them in this central area. It's not very hopeful, however, we'll never put him back on Keppra again, especially at this high dose, so we might as well try it now. He will go on another EEG tomorrow to see if the increase did anything.

If the Keppra doesn't do anything this last time, he will be weaned off it & by Tuesday a new drug will be tried. We are also working on getting a "Care Conference" scheduled for Monday afternoon. This meeting will include all of Jacob's care providers, Dr's, nurses, dietitian, physical therapist, etc. We will be talking about some tough issues, but it's necessary so the staff know what they need to do in certain circumstances.

I also felt much more comfortable talking with him about the direction Jacob appears to be headed & I feel like we are on the same page. He also said that the entire staff is so sympathetic to what we are going through, it's just not supposed to happen and doesn't. I felt as though we finally made a connection.
Although the big miracle we all want to see happen doesn't look like it will, I can't push aside the fact that a lot of little miracle's are, we just need to have our eyes open to see them.

Overall Status: Stable
Visitors: Cindy & Larry
Dinner Provided By: The Neuroth's Family

Wednesday, August 17, 2005

I arrived at Jacob's bedside about 9am today. The Dr was already there for the EMG getting things setup. There are two ways they test the muscles, in both cases, there are wires attached to little strips of paper that are adhered to Jacob's skin. The first way is by using a probe that sends a shock similar to static electricity, the second way is using a needle that punctures the muscle & records what it does when it's relaxed & retracted.

Jacob was awake when I arrive, first time he had been that awake for a few days. Was great to see his eyes so open & alert. He was really checking out the Dr -- just wondered what was going through his mind -- quit poking & shocking me probably! hehe

The test took about an hour & a half. When all was said & done, the muscles appear to be normal. This means he doesn't appear to have any peripheral nervous system damage, it's all central nervous system. Finally, something positive.

After the test was done, I was going to head back to work. Then I remembered the tech would be down sometime today to hook him back up to another 24 hour EEG, so I decided to hold him for a while instead, since I wouldn't be able to later. Just as I got him all settled in my arms, the tech arrived. The look I gave her I'm sure spoke a million words! I asked if she could give me just 30 minutes. She said the Dr wanted it started 2 hours ago. I said, that wouldn't have been possible, he was undergoing the other test! She offered to come back after 15 minutes, I was persistent & said 30! She finally agreed & off she went. She ended up not coming back for an hour.

After the last couple of days, I knew Jake & I just needed some alone time. He calmed down as soon as he got in my arms, which of course makes me feel even more guilty for not being there more often, sigh. It was a sweet moment hanging out in our private room with the curtain closed. Very peaceful.

One thing I forgot to mention yesterday: While I was talking with Dr Parrish, I asked if she would get some primary nurses for him. Jacob needs consistency. It's very hard to report back to Dr A. Johnson Jacob's status if the same nurses aren't taking care of him, especially since I can't possibly be there 24/7. Today, his nurse on duty was asked if she would be one of the primaries, which she has agreed to! Hopefully this will help Dr A. Johnson tremendously.

Overall Status: Stable
Visitors: None

Tuesday, August 16, 2005

Today was a rough day & I'm emotionally I'm going to bed. To those of you that check this before tomorrow morning, say some strong united prayers & I'll get the update posted in the morning. Until then, "May God be with our lil' man Jacob."

The next morning - I woke up this morning with a headache since I cried myself to sleep last night. I can't even begin to try & explain how we are feeling while going through all this again.

The results of the EEG are back, 54 seizures in 24 hours. Needless to say, we were stunned. Dr A. Johnson doesn't understand why the meds were working & now they aren't. I know that answer; because whatever this syndrome is, it's how it works. Seizures look to be under control on the surface, but the brain is still sending them off. It's the same way Brianna was. This syndrome worsens as time goes by rather then controlled or better.

Colleen was there while both Dr A. Johnson & Dr Parrish (neonatologist on duty), which I was glad for. It was a blow I wouldn't have wanted to take by myself, even though I held my head up during the conversation. As Dr A. Johnson continued to carry on about taking a more aggressive approach, trying new medications, continuing to run the tests that have been mentioned the last few days, etc.; I couldn't help but think out loud.

At what point do we decide enough is enough? How long do we allow Jacob to be a 'research patient'. Will we ever really find an answer or are we on paths that will lead to dead ends? Are the meds truly helping him or making him worse? Are we just prolonging the inevitable?

The doctors mainly just sat & listened. Dr Parrish was understanding where I was going with all the questions, however, Dr A. Johnson is still feeling like we need to keep trying, which I agree with...for now.

I brought up the possibility of brain surgery to remove the areas where the seizures are being generated. Due to the location of the seizures, which are in important areas of the brain, surgery isn't an option.

Once Kevin arrived after work, I asked that Dr Parrish come speak to both of us. I guess I just felt like I had more that I had to get off my chest & I didn't think it was fair Kevin wasn't there for the earlier conversation.

I started by crying, couldn't seem to say the words that were on my heart. Finally I just said...I don't know where to turn. I don't know what's right for Jacob & I just want to make sure everybody is on the same page. After the last conversation, I wasn't so sure that was the case.

She listened for a while before saying anything. Kevin asked if Jacob was considered critically ill; with Brianna, nobody ever came out & said it, Kevin read it in one of the daily progress notes written by a Dr in Seattle, so Kevin was just ready to get to the point. The answer, yes he is. What makes him critically ill is his lack of eating, lack of the ability to protect his airway, and his shallow breathing.

When asked what patients with advanced neurological problems, like Jacob, generally pass away of, her answer was breathing problems. Currently, the amount of oxygen Jacob is requiring, as well as the way he is receiving it, is not safe for a home environment. If he doesn't start breathing better, intubation is likely in his future, and if we want him home, that would mean a tracheotomy. With that said, I'm sure you now understand what we are really dealing with.

The current plan is to continue to treat Jacob's seizures by trying more aggressive medications that weren't tried on Brianna, while continuing to wait for test results that have been sent out. Dr Parrish also stated; because his brain is so busy triggering seizures, it doesn't have the time or energy to send off the signals that normally would happen, i.e. learning to eat or taking deeper breaths. So she is thinking if we can get the seizures controlled, we might start seeing some progress.

They doubled the amount of Keppra again last night. Another EEG was ordered for today to see what the increase in Keppra did. The spinal tap was done yesterday afternoon & is being sent off to a lab in Atlanta this morning & the EMG is being done between 9am-10am this morning.

I also asked Dr Parrish if the pattern for the next several days would be, increase/change the medication one day & EEG the next day, and if so, couldn't we just leave the electrode's attached & save him from removing all that tape every other day? She's finding out.

Jacob was moved to a private parent/baby room last night. Since he is very sensitive to stimulation, they felt it best to move him where a door can be closed & it's quieter. This also allows Kevin & I some privacy & a room to relax in that joins Jacob's room.

With all that said, I also informed the Dr's that as long as they are messing with medications, I don't want Jacob at home. Without knowing how he will react to them, I don't want to find myself in a life/death situation without the necessities to help him at home, nor do I want to send him home prematurely just to 'get him home', only to end up back in the hospital again like we did with Brianna.

So, it looks like he'll be there for quite a while longer. We are expecting the original test results back from Wisconsin by the end of the week, hopefully. Please just let the answers be provided to us. At least then we'll know what we're treating & how to best treat it. That's better then shooting in the dark hoping to find the target.

Overall Status: So-So
Visitors: Grandma & Grandpa, Colleen
Dinner Provided By: The Merriner's

Monday, August 15, 2005

I went back to work today, my hours are 6a-2p. This will still allow me time with Jacob in the afternoon/evenings, while saving my maternity leave for when he is home. It was hard to go back, but I know it's what is best for right now.

Jacob was hooked up to another EEG today, beginning at Noon. It will run for 24 hours. He looked to be much calmer today, not near as many head/eye/mouth jerking movements. Hopefully that means the increase in the medication and/or the staggering of meds is working.

They are still trying to see if a lab in Portland, Oregon can do the testing with the spinal fluid, rather then sending it to Australia, so that is still pending. He is scheduled to have an EMG Wednesday morning. This is a test that is like acupuncture. It tests the tone in the muscles. Dr A. Johnson ordered this test be done because he's thinking his lack of muscle tone could be a factor with his shallow breathing.

So this week will be spent running more tests & hopefully we'll receive some of the previous test results back before the end of the week. Dr Jolley, the pediatric surgeon will be visiting us this week to discuss surgery for next week (most likely) for the G-Tube. They are also considering doing a muscle biopsy at the same time since Jake will be under anesthesia.

The geneticist came to chat with Kevin & I this evening about our family history to try & track down where this may be coming from. She concludes the same as Dr A Johnson has so far; based on our family history, this appears to be a 'recessive form' in that we are carriers the gene & it took the 2 of us to make this happen. She also reiterated that if that is truly the case, it's a 1 in 4 chance of it happening again. I'd say the odds are stacked against us.

Overall Status: Stable

Journal the Journey

Journal the Journey

Inspired by Baby Jacob
Designed by Jamie Aldridge

Our dream as parents is to have children that are born completely perfect.  When we are blessed with a different reality, we often times aren’t sure we can endure it.  Jacob Tyler was born on July 28, 2005 with an unknown seizure disorder.  His parents, Kevin and Jamie Aldridge, have already survived the journey of losing one precious child, Brianna Renee, to the same disorder and know the struggle first hand.  Sadly, Jacob joined his big sister, September 20, 2005.

Where some might find no strength to walk the journey again, especially after having a perfectly healthy daughter, Amanda, born after Brianna’s death, Jamie is able to find some peace in journaling Jacob’s daily progress.  Through him, she has been inspired to share with us the ups and downs, successes and setbacks.  Her journal entries are therapy for her and those that are a part of her family’s life.

In the midst of watching her little one struggle, Jamie felt led to find a way to help other families.  She believed in her heart that if everyone had a way to document what they were going through, the healing process would be so much easier for them now and in the future, too.  Thus the reason for Journal the Journey.

We all have journeys that leave a lasting impact on our lives.  These journeys come in all forms and can be happy, sad, dramatic, funny, exciting or a combination of many experiences and emotions.  Each journey teaches us a lesson and most often we want to remember as much about the journey as possible.  Journal the Journey is an album kit that helps you remember in more detail, the moments of the special journeys you have experienced.

Imagine a father deployed while his child is born, imagine the gift he would receive if the mother were to journal all the feelings, emotions & trials she faced while having to walk the journey without him day after day, allowing him to get a sense of what he truly missed.

Imagine the joy on the parents’ face of a journey written in their own child’s words of the ups & downs they’ve faced while dealing with a serious illness.  What a treasured gift they would have for a lifetime if the child doesn’t conquer the battle.  Imagine the confidence & self esteem the child would gain by re-reading the trials & tribulations they faced & how they overcame them.
Other journeys might include: High School Senior Year, First Year in College, Faithbooking, Marriage, Divorce, Adoption, Difficult Pregnancy, Loss of Friend or Family Member, and many more.

This kit was born out of one mom’s desire to help other people document the journeys that grow them as people.  Whether it be one of pain or one of hope, we all have experiences that are a part of who we are and who we will become.  May this kit help you to journal your journey, whatever it may be.
Thank you, Baby Jacob, for the inspiration you gave to your mommy and the impact Journal the Journey will have on lives around our world.

What previous or current journey are you going to journal?  What about the journey you might help your children journal?  Do you know somebody that needs a way to express what they’re going through?

Join us in carrying out what we believe to be his purpose & journal an event that is dear to your own hearts so that it too can be passed down for many generations, as well as provide remembrance of happier times, or some sort of healing for the sad ones, as it's done for us.

Included with each kit are Jacob's footprints, help us to spread them across this country & allow him to continue to touch more lives then anyone could imagine.

Journal the Journey is an 8x8 scrapbooking kit that reminds us of 14 words to live by; Courage, Love, Trust, Honor, Family, Truth, Charity, Loyalty, Unity, Passion, Joy, Kindness, Humor, and Hope.  The kit includes everything needed to complete a wonderful 20 page album that documents life’s special journeys experienced by all.
Use the link below to purchase your order own Journal the Journey kit.

Thank you in advance for your thoughts, prayers, & support. 

Sunday, August 14, 2005

Not too much to report today. Jacob is stable & still sleeping a lot with the medication changes.

Overall Status: Good Day
Visitors: Kerry, Grandma & Sara D
Dinner Provided By: The Stillers

Saturday, August 13, 2005

Noni & Papa picked up Amanda this morning for the weekend so Kevin & I could spend some time together alone as well as with Jake. Jake is having a rough day. He's struggling to breathe & his blood has a trace of carbon dioxide. They have increased his flow of oxygen which will hopefully help him out a bit. We've also been placing him on his belly which appears to help him breathe better.

Dr A. Johnson stopped by to tell us the results of the EEG. He's been able to review 15 of the 17 hours. Jake had 13 seizures in those 15 hours, however, the video portion of the test failed so he was unable to tell us what movements he was making at the time of the seizures. He also stated that most of them occurred between 11pm and 4am. Once he received his medication at 5am the seizures stopped & he was relaxed. He's ordered that the medications be staggered a bit to see what happens with the seizures then. He'll receive medication every 6 hours now.

He's also doubled the Keppra medication in hopes to decrease the Klonopin, which he believes is the reason for the respiratory distress and he's ordered another EEG be done on Monday.

That's about all to report for today. Hopefully it's just a little hurdle to get over & more good days are to come.

Overall Status: So-So Day
Visitors: Laura

Friday, August 12, 2005

Today was a mild day with nothing really to report. He was removed from the EEG & I gave him his 3rd bath, which he loved. He also proceeded to poop on the towels again, yet I escaped!! Still pending the results of the EEG. They weren't able to get the spinal tap done today because they were still awaiting a call from the lab in Houston to make sure it was done correctly. It has been rescheduled for Tuesday.
Have I mentioned lately how much I really hate this?

Overall Status: Good Day
Visitors: Barb & Nicole
Dinner Provided By: The Priddy's

Thursday, August 11, 2005

I can't believe it's been 2 weeks today since this journey began. It's been full of ups & downs that's for sure. Today seemed to be a pretty down day. I guess after 2 weeks of trying to hold my head up high, I finally collapsed. It's been quite an emotional one for me, as I just can't seem to keep it together. He's so sweet & innocent, I just can't stand dealing with this. I'm not ready for what the future might have in store for us.

For the last couple of days, Jacob appeared to be doing well, however, I began to notice some increase in head & mouth movements. Today it escalated & my gut just told me something isn't right. I clocked him for 2 hours & 20 minutes; constant head movements, jerking back & forth as he tried to fall into a deep sleep. He looked so uncomfortable & at times would let out what I would call 'his cry' as if to say "make it stop, I'm tired & just want to go to sleep".

After he finally got into a deep sleep & all parts of him were relaxed, I called the nurse over & said I wanted to speak with the neurologist. It took a few hours to track him down. When he arrived, he could tell I was distressed about something. I explained to him what was happening since he last saw Jacob. As we talked, it aroused Jacob & he began to twitch again. Head jerking back & forth, eyes jerking, mouth twitching. Dr A. Johnson observed for a few minutes & then asked that I un-swaddle him so he could thoroughly examine him.
Although Jacob's arms & legs were fairly stable, his head wouldn't stop. It was decided to get an EEG hooked up right away to see what was going on, which will run for 17-18 hours. It's unclear if they are seizures or not & he also stated that it's possible his movements are just migrating to different areas of his body. Grreeaatt

He also ordered the spinal tap be done tomorrow, as well as some more blood work for additional testing. He also wants to look at the area of his blood that came back abnormal the last time to see what it looks like now. Apparently it should be zero, meaning you shouldn't see it in the blood at all; Jacob's level was 16, clearly abnormal. Looking at this again, might offer some more clues as to what's going on.

Once the spinal tap & blood work is done, he will add Keppra to see if it helps with the myoclonic movements.

The good news is Jacob was alert again today & did take another 3 cc's by bottle; still not much sucking going on though.

They also decided to increase his oxygen to 100% & decrease his flow to .1 liter. This is a more standard mix for him to go home on, should he need oxygen, which I'm guessing at this point will be a given. We also talked a bit about the G-Tube today. Although we still don't want to do it right now, most of us are getting prepared for the fact that it most likely will need to happen in order to bring Jake home.

I can only hope we'll have some answers soon...if only I had that magic crystal ball.

Overall Status: So-So Day
Visitors: Jared & Sara

Wednesday, August 10, 2005

I'm so happy to report another mild day in the NICU! Jacob had his usual alert times around feeding time & is continuing to show signs of sucking/swallowing. In fact, at his 5:00pm feeding, he ate 3 cc's by bottle! By the way, for those that are wondering, 1 cc=1 ml; 30 cc's = 1 ounce. So it's a very small amount but it is for sure a start. Although most of it was from the bottle dripping in his mouth, he did clamp down on it a few times & he didn't choke on any of it. I heard good swallows. I didn't see any Dr's today, so nothing more to report there.

While the occupational therapist was there today, he was alert & relaxed. He was doing so well that we had to decrease his oxygen & put him on room air for a while! Yippee!! Although when he went back to sleep, we had to turn it back on...he just gets too comfy while sleeping.

Jake & I rested in the lazy chair most of the day while visiting with our friends & family that stopped by. I did browse through some new scrapbook magazines while we hung out & even managed to strike up some conversations with a few NICU staff who are interested in attending Crop for Cancer this!! Speaking of, if anybody reading this lives near Anchorage & loves to scrapbook, I've got tickets & they go on sale August 15th! *wink

Well I think that's about it for this entry, let's hope for some more progress tomorrow!

Overall Status: Good Day
Visitors: Heather, Grandma & Grandpa, & Becky
Dinner Provided By: The Cagley's

Tuesday, August 9, 2005

The increase in Klonopin appears to be working. Jacob's jitteriness decreased by late afternoon. He also had a big alert time from about about 11:00 - 2:00, where I worked with his suck/swallow quite a bit. I started using my finger so I could get a better feel for what he was doing. As I depressed his tongue, he would suck! If I depressed just behind his chin, he would give a good swallow. So I'm convinced that he has what it takes to do it, he just needs some practice! While I was working with him, his mouth area was less over-stimulated with no noticeable signs of jitters, big difference over yesterday.

Dr A. Johnson stopped by for another visit about 4:30, after he was very sound asleep. He was very impressed with the changes in his muscle tone over yesterday. The original plan was to increase his medication a little bit each day, after seeing him today, he's decided to leave it as is.

Jacob does appear to breathe a lot shallower while in a deep sleep, which requires him to have more oxygen. Dr A. Johnson said that we may have to make a compromise, see more jitters or have respiratory issues. We'll see what Jacob does over the next few days on the new dose.

He is feeling more & more confident that we may be getting to the bottom of this. He does feel that this is a 'recessive' mutation, meaning it took the exact 2 people to cause this. Like a 1 in a million chance of it happening again. He said the chances of it happening again to us is likely about 25%. It was just the right 2 genes at this given time between Kevin & I to cause the syndrome. Hopefully that made some sense to everything reading this! He explained it much better then I am!

He did mention that Jacob will most likely come home on a saturation monitor, so that we can keep an eye on his oxygen levels, which means he may come home with oxygen as well, maybe not for us to use all the time, but to at least have it here in case it's needed.

He's also been in contact with a Dr in New York that is very familiar with this disease. He's trying to find out where he can send a spinal tap for testing. Apparently, the spinal tap will give a more conclusive result then the blood test. Not sure how that all works, but that's what I know! Hopefully he'll get that information soon so it can be sent out & maybe return about the same time the other test does.

It was great to see him awake for such a long period of time. He cooed a lot & I think even let out some cries when it was around feeding time. There were a couple of other babies that seemed to cry a lot today & I think he reacted to that too. It was fun to listen to him!

Well that's all for today, more good news & more 'wait & see'.

Overall Status: Great Day
Growth Stats:
6 lbs 12 oz

Visitors: Colleen, Mary M. & Celeste

Monday, August 8, 2005

Jacob had another good day today. His muscle tone was more relaxed over yesterday. He was stretching out his legs on his own & didn't give me much resistance when I stretched his arms over his head. His oxygen levels were very good with no dips & they may drop him down to .2 liters this evening. His feeds have increased again to 55 cc's every 3 hours. His umbilical cord is about ready to fall off too! Dr A. Johnson, the pediatric neurologist, stopped by today to ensure that the lab work was done for the 2 genetic tests, as well as to check in with us to see how we felt Jacob was doing.

After chatting with him a bit, it was decided to increase the Klonopin a bit higher then the original dose. The goal is to get the myoclonic movements a little more under control, without compromising his breathing ability. Dr A. Johnson feels that he may be having myoclonic movements in his lip/cheek muscles, which could be prohibiting him from wanting to suck/swallow.

The nurses have begun to nipple feed him with a bottle to see what he does with it. The first try was during the 2:00 feeding. Although he was very aware that something was there, he didn't do much with it. He moved his tongue around, made a very weak suck attempt & some funny faces. The nurse did consider it as having an interest though, which is very promising. During this attempt, he was stimulated quite a bit & his lips began to quiver. I wondered if it may be a seizure, but when we pressed our fingers on his chin, the movements stopped. Had it been a seizure, you wouldn't have been able to stop it. This proves the theory of the reason why he may be lacking in the suck/swallow category.

The next several days may appear to be a bit of a setback with the increase in medication. The hope is that after the medication levels out, he will be back to waking up, have less or no myoclonic jerks & continue to show signs of eating. Depending on how well he tolerates the increase in medication, he may need to be intubated to get him 'over the hump'. Time will tell.

Both the Dr & I agreed that it was much better to try out this increase with him in the hospital then at home since he has 24/7 nursing staff. We also decided we wouldn't try the Keppra at this time & see what the Klonopin does instead.
One thing that I keep forgetting to mention, after reviewing the CT scan & MRI again, the Dr's have concluded that since the amount of brain atrophy is so minor, they are considering it normal. If you were to look at a perfectly normal person's brain, you might find the same amount of differences.

So far, I'm very pleased with Jacob's progress, and even though there may be a few steps back over the next several days, I have hope that things are looking better. The doctor told me today, the only thing keeping Jacob in the hospital right now is his lack of eating, & since nobody is wanting to rush to the surgery room to place a G-Tube in his lil' tummy, we'll just need to give him some time to respond & learn how to eat.

"If you permit yourself to let go of your worries, placing them in God’s hands,
trusting HIM completely, HE can truly lighten your load."

Overall Status: Good Day
Visitors: Pam, Melanie, & Sara
Dinner Provided By: The Keffalos Family