Kevin & I didn't get to spend too much time at the hospital today, which of course, I feel guilty about. After church, Amanda's nap, etc. it was 4:30 before we got there. The nurse reported that he's had a great day! He's waking up just before feeding time & showing signs that he's hungry. She caught him moving his hands to his mouth & making some sucking gestures too! Since his next feeding was at 5:00, I worked with him using the pacifier; it took a little while to get him to open his mouth & once I had it in there, he did chomp on it a few times...nothing spectacular, but at least a start.

They also lowered his oxygen level this morning to .3 liters & he was tolerating the lower dose just fine! Here's hoping we can get him weaned off of that soon. Aside from that, he had an uneventful, quiet day.

Tomorrow morning the Dr on duty will be calling the lab to find out if they can run the test for Coffin-Lowry Syndrome at the same time they do the Hyperexplexia test. If all goes well, we'll meet the 1:00pm deadline tomorrow.

I had to force myself to go to church today, 1) because I was really tired & 2) because I'm still struggling with leaning on God right now. When I arrived, I found myself trying to avoid people I knew just so I didn't have to face the fact that I wasn't pregnant anymore, let alone hearing the next question "where's the baby?". After a failed attempt to avoid somebody, I realized I can't hide from those that are trying to reach out.

As we started to worship, the tears began to fall. "Show me the path. Give me direction, the doctors wisdom & Jacob the strength to get passed this. It doesn't matter if he's not perfect, he's just as you made him. All I ask is that you allow him to stay on earth with us & teach all of us the patience we'll need to care for him." This was my prayer.

A few minutes into worship, one of the singers made her way to the front of the stage & begins to tell a story, a story of her now 28 year old daughter, who is autistic. She went on to share how much God has changed their lives with the ups & downs of learning how to deal with an autistic child. One who can't speak, knows very little sign language, and uses body language to communicate most of the time. As I listened to her tell this story, I sobbed. I knew then, this is why I'm at church today. God wanted me there to hear this.

It's amazing how He uses other people to remind us to lean on Him, even when times are rough & we don't understand the why's, God knows what He's doing & He has some good to come out of this, even if we can't see it now.

Overall Status: Great Day!
Visitors: Kathy Beelmann; Grandma & Grandpa

When I arrived at Jacob's bedside today, Dr Avila was there reading over all the documentation that Dr Jacob provided for the Hyperexplexia test. He was in awe of what he read. He thinks we might be on to something & reassured my initial reaction, that yes, we need to have this test done. Aside from the physical features that match this test, there is something that has come back as abnormal in his blood that also plays a factor with this disease. Could we really be on to something here? My only hope is that the test yields a positive result & is the 'sporadic' version vs. the hereditary version. Dr Avila also interpreted the information as I did, in that it appears that this disease only affects the first 1-2 years of life & the children are normal. Yes, there may be developmental delays, but they are by far, mentally retarded or anything of that nature. I can only pray that God will bless us with this & finally provide an answer.

There is another disease that the pediatric neurologist would also like to test at the same time, Coffin-Lowry Syndrome, that he informed us about yesterday. Dr Avila stated that the difference between the 2 Syndromes is 1) Coffin-Lowry is prone to have seizure activity (more so then Hyperexplexia) and 2) instead of becoming stiff later in life sporadically, the patient becomes floppy. While I didn't get the chance to read the information about this disease at the hospital, I started doing some research on the internet last night. From what I can tell, this disease doesn't match up at all in either case, so I'm a bit perplexed. Maybe the documentation that is at his bedside will help me understand why they feel Jacob fits this profile.

I gave him a 2nd bath today while Amanda was there. He woke up & not only did he pee all over his bed before his bath, he proceeded to poop all over the towels afterwards...and as I put his fresh diaper on, he decided to finish the job. However, in case you were wondering, he didn't get me at all.

Amanda is such a proud big sister. She was very excited to see him again & yes, the first words out of her mouth were "Handsome Boy Mommy"...that's my girl!!

As for Jacob's progress today, he had multiple alert times & tracked voices very well today. Things are for sure looking up.

Overall Status: Good Day

Visitors: None

First, I think it's important that I give a big thank you to everyone that has either sent us an email, signed the guestbook, visited us, sent us something in the mail/flower delivery, and/or is reading these updates. Although I may not respond to each email or guestbook entry, know that your words of encouragement are very much appreciated. When I'm up at 2-3-4am taking care of business, i.e. feeling like a cow--mooooooo, I always tend to check my email & read the evenings messages in the guestbook. Nothing makes me happier & more relaxed as I head back to bed, knowing that we truly aren't alone in this & that so many people are praying for our family. So to our family & friends & the hundreds of you we don't know, THANK YOU.

It was another day in "Vegas"...as a friend of ours called it when he came to visit the other day, referring to all the alarms going off & lights flashing every now & then as the babies need attention for one reason or another.

The nurse informed me that Jacob had a long awake period this morning, and yes, I missed it. DANG IT! He was looking around quite a bit & talking back at her as she did her every 3 hour cares on him. They increased his feedings to 50 cc's today & he's tolerating it very well. I brought in his fuzzy blanket to keep him warmer, hopefully he can get off those heat lamps for good now!

I spent all afternoon holding him in a lazy chair with my feet propped up; even took a little snooze! Kind of hard not to when you have a baby bundle warming you up. Once daddy arrived, we put him back in his bed to change his diaper & check his temperature. Low & behold he decided to wake up for us! It was the first time Kevin has seen his eyes open since the moment he was born! Grandma & Grandpa also came to visit & got to see the lil' guy awake.

I did chat with both the neonatologist & the pediatric neurologist regarding testing for hyperexplexia. Without going into major details that I can't explain, we are still trying to determine if the test will be beneficial. The Dr that is in charge of the lab that does the testing in Wisconsin, doesn't believe Jacob's case will give us a positive result. Apparently there are 2 versions of this disease, 1) sporadic, just all of a sudden appears in families, & 2) hereditary & is common in families. The sporadic version has been pinpointed to a specific gene in the DNA, the hereditary version has not, so it ends up being a 10% chance of diagnosis. What's crazy to me is, doesn't hereditary have to start somewhere? At what point is it considered sporadic vs. hereditary? In my opinion, my case would be sporadic, as there is no family history whatsoever, but then again, when is it considered hereditary?

The test is $400, which is chump change considering how much the bill is on a daily basis with Jacob being in NICU, so that's not really an issue. My gut is telling me go with it & I'll have an answer in 7-10 days. I'll talk more about it with the Dr's this weekend & with Kevin. By Monday we'll have made a decision.

When Jacob first arrived in NICU, the neurologist felt this is what it may be, however, after he's seen Jacob for a week now, he's not so sure, but has no problem with having us run the test anyways.

He's also going to start him on a 2nd medication, Keppra, on Monday that he's hoping will help control his tremors a little more. Course it also causes sedation, so we may be back to square one next week with waiting for Jacob to level out & start waking up again...it's such a vicious cycle.

Overall Status: Good Day

Growth Stats:
Weight: 6 lbs 9 oz

Visitors: Celeste, Brooke & Cindy, Terri, Grandma & Grandpa

Today was another mild day for Jacob. They have been trying to wean him off the heat lamps for the last day or so, but today he just couldn't seem to keep his temperature up, so they had to turn the lamps back on. They have however, moved him from one side of the NICU to the other side, which signifies that he's more stable & no longer necessary to have him on the 'critical' side. He did have some alert times today & I got to see his eyes a bit more. The swelling has gone down tremendously as well, we are thinking he may have had an allergic reaction to the medicine used for the eye exam.

He's up to eating 45 cc's every 3 hours & tolerating it very well. Since he is still on the nasal canula, they have moved his feeding tube from his nose to his mouth.

During his awake times, I worked with him on sucking the pacifier. Although I didn't get much response from him, he did grab a hold of it & give it a couple sucks. I also noticed that he's swallowing pretty good. All good signs that eating the right way just might be in his future. We also got some 'scrap' worthy hand & feet prints for his scrapbook.

Now on to something very interesting. Yesterday while I was reviewing the Dr's notes in Jacob's chart, I came across something that the pediatric neurologist said; he thinks Jacob may have something called "hyperexplexia" (stiff baby syndrome) which is a neonatal version of "stiff-man syndrome". After reading this, I decided to do a bit of research on my own to see what it actually means. I was amazed at what I read. Here are two links that talk in detail about the syndrome:

http://www.sbs5.dircon.co.uk/medtext/hyperex.htm
http://www.medterms.com/script/main/art.asp?articlekey=8297

To me, this fits both Brianna & Jacob almost exactly:

1. exaggerated startle response (Jacob)
2. hypertonia (stiffness) diminishing over the first year of life (Brianna & Jacob)
3. strong brain-stem reflexes (especially head-retraction reflex) (Brianna & Jacob)
4. some cases, epilepsy
5. hiatal hernia (Brianna; no testing done on Jacob yet to determine if this is an issue for him as well)

Other interesting points about the disease:

1. The evolution of the disease is characterized by a delay in reaching motor 'milestones' (for example, walking).
2. The hypertonia is reduced during the first two years, but abnormal reactions such as involuntary starts remain after the slightest stimulus.
3. hypertonia is linked to a hyperactivity of cortical neurons
4. evolution of the disease is benign when treated
5. There is neither mental nor neurological deficiency.

So today, I tracked down the neonatologist & asked him some questions about it:

1. Why hasn't the pediatric neurologist mentioned this to us? Why did I have to read it in the report to find out about it?
2. If he is leaning towards this, has he ordered the test for this exact DNA to determine if this is 'the one'? If not, how come?

The neonatologist was intrigued & appreciated me being so persistent about it. When I mentioned all the things that I had read & how it matched up with both Brianna & Jacob, he was very interested. He was going to do some research on his end this evening & get back to me tomorrow morning.

I never heard this terminology with Brianna. For such a rare disease, it amazes me that the pediatric neurologist has chosen this as the possible answer. How did it get missed with Brianna? I find it very fascinating.

There are a couple questions I have that I couldn't seem to find answers for on the internet:

1. What developmental issues do the patients with this disease have?
2. Was there atrophy of the brain?

I hope to have some of these questions answered tomorrow. Wouldn't it be nice to at least have a diagnosis?

Overall Status: Good Day

Visitors: Pastor Keith Lauwers & Colleen

Father's Love Letter
Pastor Keith Lauwers gave me this today.

Amanda & I hung out at home this morning while I caught up on some much needed laundry. She's definitely aware of something going on & missing/clinging to mommy when she can. I envisioned this being hard enough; having to manage 2 kids I knew would be challenging enough, but to have to have a sick one in the hospital & a thriving one at home; well that's just a bit more challenging then having them both at home...at least I think it is...hehe.

After Amanda's nap I took her over to play with her cousin Lyndsey & headed off to see Jacob. He had a pretty quiet night & day. Physical Therapy was there to visit him for the first time & she was very pleased with how he reacted to it. She remembered working with Brianna and recognized the difference with Jacob right away. I will say one thing, although being back in the NICU is very hard, it's a good feeling when the Dr's, nurses, & other staff remember who you are from before. Brianna really left her mark on all of them.

Jacob had a little bit of awake time today, although he's still struggling with getting his eyes to open. I think he's just really sensitive to the light, hard to tell for sure. His eyes were looking alot better by the time we left this evening, not nearly as swollen.

They did decide to put the nasal canula back on today as he just wasn't keeping his oxygen level where they wanted it. It's on a very low amount & I suspect it won't be there for very long. This waiting period for his body to level out & get used to the medication is hard to wait on; I just want to see him awake & looking around.

I also forgot to mention; a couple days ago they drew some blood for a "Long Chain Fatty Acid" test. This test looks for many different genetic defects. It was sent off to Seattle Children's Hospital & the 2 page report came back today. Although some areas of the test were questionable, because of medication & IV fluids in his blood at the time, none of them provided us with a diagnosis; all were normal. I'm not sure if all the testing has been completed with this report, 

I will be talking with the Dr. about it in the morning.

Growth Stats:
Weight: 6 lbs 7.5 oz
Overall Status: Good Day
Visitors: Nicole, Chris Fraze, Grandma, Kerry & Jessika

Let me just start this entry with...God is Awesome! It's amazing what a difference one day can do. Jacob had an amazing day today. I arrived about 10:30am & the EEG machine was gone, however the wires were still attached. They kept them attached in case the coverage they received wasn't good enough, they could just hook the machine back up without reattaching everything.

About 4:30, they came back to remove the wires. Once the wires were removed, I was able to give Jacob his first bath, no wires attached! He absolutely loved it! He was so relaxed; opened up his eye (one is a bit swollen shut) & talked to me like crazy! Took a while to get all the gritty stuff out of his hair, and he just laid there, cooing like crazy. It was such a great feeling to finally hear him for more then just a peep.

Just as I was finishing his bath, the pediatric neurologist arrived with the results of the EEG. During the 24 hour study, Jacob only had ONE recordable seizure...PRAISE GOD! He also stated that although the atrophy of the brain is on the left side, the seizures are coming from the right side. Not sure what that really means at this point. The Dr is very encouraged by Jacob's progress. He wants to keep the medication the way it is, get Jacob awake & hopefully start nursing/sucking. As long as Jacob is stable & eating on his own, he will be able to come home.

In the beginning, he didn't feel it necessary to repeat the extensive testing that was done on Brianna; now he feels it's a very good idea, however it won't be done all at once. With Brianna it was more of an urgent matter because we couldn't get her seizures controlled; Jacob is a different story. All the testing can take place after he is stable & home with us.

He also received the report from the radiologist regarding the MRI...which was reported as normal...PRAISE GOD again!

Jacob also had an eye exam today. He really hated that craziness! Dr Arnold's report states that everything looks normal. He should also be having a hearing test in the next day or so, but I think he's hearing just fine. As I was leaving his bed side for a little while after he had his bath, he turned his head in the direction I was going. Go Jacob!

His rigid ness is also getting much better. He opened his hands quite a bit today & while I was messing with him he didn't clench them up. I also did some range of motion with him today & while I was working on his arms, he tended to stretch out his legs all by himself.

So with all this said, today was a very encouraging day. Kevin & I are feeling much better & are pleased with the approach the Dr wants to make with Jacob's care.

Overall Status: Great Day
Visitors: Michelle, Lisa Lopez, Grandma & Grandpa

 

Care package from the Garcia's
...ahhh snacks...
shouldn't I be losing weight now???

Look at all those wires!

Ouch...ya think you could be a bit more gentle
while you're tugging on my hair?

 Bath Time!

After Bath...Thanks Mom...I feel MUCH better!
 

I decided to come home last night & sleep in my own bed...ahhh...comfort. This morning, after dropping Amanda off at Auntie Heathers, I headed to the hospital, arriving about 10:30. Jacob was already hooked up to his 2nd Video EEG that will test his brain activity for the next 24 hours. This means, no holding him until tomorrow. After visiting with him for a while, I headed down to the cafeteria for some food, then I headed to my room & took a 3 hour nap...ahhh sleep! About 3pm the phone rang, Celeste came by to visit...and she brought me Sweet Cream & Strawberry Ice Cream from Cold Stone Creamery....YUM!!! Chris & Colleen arrived within the hour & we all visited in my room for a bit. Felt good to have a bit of laughter as Colleen relived her birth experience with having Parker, who weighed a whopping 12 lbs!

Kevin went back to work today, so it was just me & Jacob, although with all the visitors this afternoon I was far from by myself! Jen & Nikki also stopped by about 5:30 just after Kevin got there.

Jacob had a pretty relaxed day. He finally had a massive poop throughout the night, I'm sure he's feeling better now! He did have some desaturations today (not getting enough oxygen). In most cases I think it was because he had some secretions building up in the back of his throat that he wasn't swallowing. Once they were cleared away, he tended to do better.

He did appear to have a few seizures today, one while I was there that lasted only about 5-10 sec, from what I could visually see. I just happened to have the camera in hand while it was happening, so I got a picture of him (see below). We'll know for sure what's going on when we receive the results of the Video EEG tomorrow.

Oh...I almost forgot; he's now tolerating 40 cc's of food every 3 hours & no longer has an IV!! The IV they started yesterday was going bad this morning so they just decided that since he was so close to getting his target amount, the decision was made to discontinue the IV...yippee!
 

Kevin & I are holding up fairly well, sort of. I definitely have my moments of strength & weakness, the latter more often. I don't think there will be a wall going up this time around, emotions are flowing & there's no stopping it. I can't put up a front that all is ok & I'm this superwomen/mom that everyone thinks I am, although flattering, I don't think it's the 'image' I'll be portraying this go around. "This go around"...never in my wildest dreams did I think I'd be saying that.
Those that haven't been through this with us before, are grasping at what appears to be a lot of positives, I can't help but stay a pessimist & just wait for some miraculous day to come along where it's all really true & great. I want to be positive, just can't seem to find it in me, not to mention how angry I am at God. It's pretty hard to hang on to your faith when all you want to do is strangle Him.

Anyways, that's my emotional state...physically I'm doing great. Don't really feel like I just had a baby! Delivery went very well & fast (thank goodness!) All I wanted at the time was to get him OUT! Now all I want is to have him back in mama's womb; where I can protect him...protect him from the IV's, drugs, wires, tubes, pokes, etc. Dang it...I HATE THIS...WHY is this happening again??????? argggg

Overall Status: Good Day

Visitors: Celeste, Chris, Colleen, Jen & Nikki

 

Having what appears to be a seizure.

Relaxed after Seizure Video EEG in the background My Little Space with Video EEG in foreground. Another view of My Little Space