Jacob's Journey

Thursday, July 28, 2005 - I had been having signs of labor for 5 days. At 4:30am I awoke with consistent contractions & at 5:30am called my midwife. I arrived at the birth center at 6:30am, was 5-6 cm & progressing nicely. By 9:20am, our son, Jacob Tyler, was born. At first all seemed perfect. Although he was struggling with taking his first breaths, his heart rate never dropped & he remained pink.

About 40 minutes after he was born, we started to see some things that made us a bit uncomfortable. He wasn't showing any interest in eating & he appeared to be having seizures & his limbs were very stiff. My Midwife called the pediatrician & it was decided we would take Jacob straight to the office for a quick exam. I knew then, where we would end up. I knew he wasn't ok & this was the beginning of another tough & bumpy road, just like his big sister Brianna Renee.

When we arrived at the pediatrician's office, Dr Ryan was waiting. I couldn't look up at him. All I could do was hold my head low & sob. As I barely heard the words coming from his mouth, we immediately left his office & headed downstairs to Newborn Intensive Care. Here we go again, I thought.

When we arrived in NICU, the nurses & doctor's were right there waiting for us. As they talked amongst themselves & asked Kevin & I questions about Brianna, I continued to lay my head over my legs & weep uncontrollably.

I thought lightening doesn't strike twice in the same spot? How can one family go through this all over again. Where will we find the strength? As the doctor examined Jacob, it was very clear that we were dealing with another situation that is very similar to Brianna.

The doctor immediately ordered him Phenobarbital, an anti seizure medication & a CT scan. The results of the CT scan were very similar to Brianna. The left side of the brain has suffered some sort of trauma & therefore has not developed correctly. By evening, he had many wires hooked up to his head with a video monitor recording his every move, this is called a Video EEG. This machine monitors his brain wave activity & will give us a clearer picture on all the movements he is making & whether or not they are all seizures. The pediatric neurologist has stopped the medication so that the test can be as accurate as possible. They will run this test for 18 hours.

Although still very rigid & appearing to continue to have seizures, Jacob seems to be resting comfortably, his parents on the other hand are a complete wreck.

Birth Stats:
     Time: 9:20am
     Weight: 6 lbs 3 oz
     Length: 18.5"
     Head: 12.5"

Friday, July 29, 2005 - Kevin & I stayed at the hospital in a parent/baby room last night. Since we were both so emotionally exhausted, we seemed to sleep fairly well. The pediatric neurologist has reviewed the first 6 hours of the EEG & during those 6 hours, he only saw 4 seizures. This means that the other rigid movements we are seeing are "myclonic". Now that he has confirmed there are indeed seizures happening, he's put Jacob on a drug called Klonopin. This drug is not only used as an anti-seizure medication, it's also used for relaxing the rigid ness in his arms & legs. We're hoping this drug will help Jacob in both cases. The neurologist will review the other 12 hours of the test & give us the results tomorrow.

Jacob spent all day sleeping. Until they figure out the level for which he needs to be on, he will be pretty sedated. Aside from that, the medication appears to be working. He's very relaxed & there are no signs of seizures and/or myclonic movements. He has also begun feedings via a tube down his nose.

Visitors Today: Kerry & Grandma, Heather & Sara, David & Heather, Barb & Chrysti, Pam, Colleen & Jen, Nicole, Laura & Jen, Celeste

Saturday, July 30, 2005 - Jacob had an MRI today. The pediatric neurologist stopped by & gave us the results of that as well as the rest of the EEG. The MRI does show some asymmetry in the brain, however, it's pretty subtle & he doesn't think it's so abnormal that it's cause for concern (GREAT NEWS)! He said the white/gray matter of the brain is questionable, however, it is distinct, meaning you can see the difference in the white & gray areas of the brain (MORE GREAT NEWS). In Brianna's case, both of these were very prominent (not good news).

The EEG results are also fairly good news, of the 18 hours of coverage, there were only 14 instances of seizures, the longest lasting about a minute, while the others averaged about 45-50 sec.

He is very encouraged with the results so far & is also very pleased with how well Jacob is responding to the medication. He has ordered his medication be decreased by 30% because Jacob is still very sedated. Hopefully in the next couple of days, he will begin to wake up! He was on a nasal canula for a little while today; the medication has him so sedated that he just needed a little help with oxygen.

Sunday, July 31, 2005 - Jacob is still resting peacefully. He is tolerating the milk very well & they are increasing his intake by 3 cc's every 12 hours. The goal is to get him to 36 cc's every 3 hours so that the IV can be removed. He showed more signs of waking up today; yawned a few times for me, made a few peeps & even showed signs of wanting to suck (VERY GOOD NEWS)! By end of day today, he was eating 26 cc's every 3 hours! If all goes well, he'll be off that IV in the next day or so! Keep making progress Jacob!

Amanda met her baby brother today. I believe she was quite excited! She kept repeating, "Baby Brother!", "Baby Jacob", "Handsome Boy". I'd say the introduction went over very well!

Growth Stats:
     Weight: 6 lbs 6.5 oz
     Length: 18.75"
     Head: 13"

Monday, August 1, 2005 - 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

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

Tuesday, August 2, 2005 - 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.

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!

Wednesday, August 3, 2005 - 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.