Hodge Podge of Updates

Isaiah giving me a little smirk

Post-Shunt

For those who didn't see on facebook, Isaiah's surgery went "smooth as silk" according to his neurosurgeon. Dr. Dauser was also able to tell us some relieving news. Isaiah's pressure was up. A normal intracranial pressure for a newborn is 15. Isaiah's ICP was 20. What this means is that we most likely would have had to put a shunt in eventually, and doing it sooner rather than later will hopefully increase the chances of better cognitive development. The best case scenario is that Isaiah's cortex will expand to fill in the space that the excess fluid was occupying. We have a follow up 'quick' MRI (which does not require sedation) and an appointment with Dr. Dauser immediately following so he can tell us how things look.

So far in terms of our observations, Isaiah's eyes seem to be working together more. His left eye still deviates to his nose most of the time, but it mid-lines and moves with the right eye much more than it used to. Since the surgery he has been babbling and smiling much more as well. We had an appointment with a new neurologist (since we switched some of our doctors over to ones in the same hospital as our neurosurgeon) and Isaiah talked to her and smiled more than we had ever seen him do in one sitting. He actually gave Gabriel four big smiles in a row earlier today too. So exciting!

Please continue to pray that Isaiah's shunt is infection and obstruction free. Any infections in the first six months after surgery are still considered "post-op" infections, so while the risk is always there, it decreases significantly once we've reached the six month mark. There is a 30-40% chance of revision (infection or obstruction) the first year of the shunt and 3-4% every year after that. While we are not unrealistic about the probability of Isaiah having to have another surgery, we also know that some children get a shunt put in and never have a problem afterwards. We would LOVE for Isaiah to be on that side of the statistics :)

Early Childhood Intervention

 

Texas has a program called ECI where babies and children up to three can receive therapy services to help with development. They come to our house and help us work with Isaiah doing purposeful play to ensure we are doing everything we can to help his cognitive abilities. Right now we are seeing a speech pathologist (once a month), a developmental therapist (three times a month), and an occupational therapist (once a week). We are trying to set up vision therapy as well. According to his entry evaluation (which was about a month ago), Isaiah is in the 1-2 month range for most areas (for example he isn't making very many consonant sounds) but we feel there isn't any reason he won't continue to develop. We just don't know at this point if he will always be a few months behind, if his delay gap will continue to increase, or if he will eventually catch up to other babies his age. Time will tell.

Between ECI, doctor's visits, and twice a week blood draws, we are pretty busy around here. But I am thankful that we live in a city with all these resources! Gabriel and I have also discussed multiple times that if I wasn't already a stay at home mom, I would have to become one. I am so thankful that God has continued to give Gabriel a job where he can provide for our family. 

A loving look from big brother

I also want to point out that Morgan is doing extremely well. He is very gentle with Isaiah when he gives him multiple hugs and kisses every day. Morgan gets his own band-aid during Isaiah's weekly blood draws and loves to show them off. It's amazing how observant he is. I was on the phone spelling Isaiah's name to someone and Morgan looked at me and said, "Doctor?" He has been a trooper and an amazing big brother. I am so thankful for him. 

I'll leave you with links to two short videos. The first is a video of Isaiah talking to me. You won't be able to see anything because we were in the dark since I was trying to get him to go to sleep. But he wasn't having any of that! :) The second is very short but I wanted to show off how Morgan goes and finds toys and brings them to Isaiah to play with. He says, "Here you go Isaiah. Here." and Isaiah gives Morgan a little smirk at the very end.

Isaiah Babbling

Big brother Morgan

The Toughest of Decisions

I want to apologize for the delay in posts. The main reason I didn't post anything was because we were in a bit of a limbo trying to discern what God's voice was among the throng of doctors' voices. A decision had to be made about putting a shunt in Isaiah due to the large ventricles in his head. Isaiah has more fluid than he is supposed to in his brain. There are several possible causes but the dilemma came in deciding if the potential benefit outweighed the potential risks. The bottom line is shunts are notorious for problems. A shunt is inserting a piece of tube where a tube shouldn't be. When you put a piece of plastic in someone's brain it can get infected or clogged or moved. There can be bleeding or even death. These are all risks. But what could happen - what we are praying, is that none of these things occur. 

For some reason that isn't yet known, when you put a shunt in a child with congenital toxoplasmosis most of the time, their brain circulates the CSF (cerebral spinal fluid) better. Which allows the cortex (brain matter) to expand. With this growth comes a greater potential for cognitive development. 

Deciding to go ahead with this procedure has been a discussion Gabriel and I have been having for weeks. We've sought opinions from four neurosurgeons and several neurologists. It's difficult to make a choice that will affect your child for the rest of their life when you have experts whose opinions completely differ from each other.

It comes down to this. I had nothing to do with how Isaiah was put together. It's not like I thought to myself, hmmm, lets put some dark eyes and hair, round face, oh and let's throw some toxo in there too. God knit Isaiah together. And he did it to bring himself glory. We pray that Isaiah will have no problems with the surgery and no complications down the road. Please join us in praying that God will guide the surgeons' hands and that Gabriel and I will rely on God for peace in knowing that he is in control. Isaiah's surgery is scheduled for tomorrow, November 6th, at 8:15am. God isn't bound by time so if you read this afterwards you can definitely still pray for us :)

I will do my best to post an update once things have settled down after the surgery but I can't promise anything. Check facebook for any quick updates. Thank you for all your support and prayers so far. To God goes all the Glory.

When It Rains...

We got home from our stay at the hospital late Friday night and everyone crashed. We did notice by the end of the week that Isaiah's eye deviations have improved dramatically. He went form looking almost exclusively to the right to looking around and even looking directly at us. It comes and goes, but knowing that sometimes he is actually SEEING us is amazing compared to when he was first diagnosed. We also had some awesome friends bring us dinner and just hang out on Saturday night after we got back. To be able to spend time laughing and eating with friends was amazingly refreshing after spending most of the week in the hospital. Late Saturday night when I was changing Isaiah's diaper I noticed a bump on his little hiney. It was raised and hard. I mentioned it to Gabriel but thought I'd wait and see how it looked later.

The next afternoon Dr. Wootton (Infectious Disease) called Gabriel to check in. (Have I mentioned how amazing all of Isaiah's doctors are?) Gabriel told her about the bump and she asked us to send pictures. We emailed her and she forwarded them to Dr. Conlon (pediatrician) and they decided I should go ahead and bring Isaiah into the office on Monday to see if it was an infection. Monday morning came and I took Isaiah to see Dr. Chia (other pediatrician in the same practice) and she told me it was a staph infection and prescribed antibiotics. She told me in any child, but especially Isaiah, that if it wasn't better in two days that we needed to let her know and might have to go to the hospital for IV antibiotics. I called the office back Thursday morning to let them know that it didn't look worse, but it definitely didn't look better. She told me to take some more pictures and email them and then since we were going to be in the building the next day for Isaiah's ophthalmology follow up we could stop by then. A few minutes later I left to go pick Morgan up from his play date at the neighbors. When I got back Gabriel told me Dr. Conlon had called and told me to go ahead and take Isaiah to the ER.

Having learned my lesson the first time I brought enough stuff in the event that we would be admitted and staying over night. I met my aunt who was going to take care of Morgan and headed over to the hospital. They took Isaiah's vitals and put us in a room. Then a nurse came in and looked at his spot. The nurse told me she thought we would have to stay the night since he had already been on oral antibiotics and wasn't showing any obvious signs of getting better. Then the ER doctor came in. She saw the spot and was surprised with how small it was. Apparently, the staph they usually see in the ER is pretty gross. Isaiah's toxoplasmosis medications require that he have weekly blood tests to check his white blood cell count so they went ahead and did that while we were at the ER and would use his levels to decide if we were staying the night or not. Because Isaiah had been stuck so much at the hospital the week before the nurse had a hard time finding a spot to use. She poked him once and only a drop came out. So then she went and got this cool light that lit his hand up so she could see the veins in it. If I wasn't so worried about them finding a good spot I would have thought it was pretty cool. The light helped and she only have to poke him one more time. When they were finished one of the nurses found out I hadn't eaten lunch yet and got me juice, a sandwich, and a pudding cup. We have had some great nurses at Memorial Hermann. When the tests came back Isaiah's levels were great so they said we could go home! Yay!

So I headed over to my aunt's to pick Morgan up. When we got home Gabriel noticed Morgan felt pretty warm so we took his temp. He had a fever of 102.5. SIGH. I gave him some ibuprofen, checked for any spots that looked like Isaiah's and put a call in to the pediatrician's office. I didn't want to take any chances over the weekend. The on call doctor told me to check his temp again while he was asleep and then bring him in the next day (Friday).

Friday morning we had an ophthalmology appointment for Isaiah and Morgan. Dr. Kumar wanted to check Morgan's eyes to make sure everything was ok and to check Isaiah's eyes to make sure the toxo medicines were doing their job and healing an active lesion they found while we were in the hospital. Thankfully, Morgan's eyes are perfect and he did great at the office and Isaiah's lesion is already regressing after less than two weeks of medication! Afterwards we popped into the pediatrician's office and learned that Morgan had strep throat!

So things haven't really slowed down here much. Isaiah and Morgan are both on antibiotics and Gabriel and I are trying to catch our breath. Thankfully, we serve a God who never has to catch his breath and who is always there for us. God has definitely blessed me with a peace in knowing that he gave Isaiah to us for a reason and that we just need to lean into Him. Please continue to pray for peace and that we rely on God in all the decisions we make with Isaiah's care.

Hospital Stay

Holding a sleeping bubba during his EEG

Our Stay At Memorial Hermann

By the time we got to our room it was close to six on Tuesday so we knew we wouldn't be getting into MRI until the next day at the earliest. The first night was rough. They poked poor Isaiah. A lot. Between an inexperienced nurse, an incomplete list of what they needed, and a lab that let his blood sit for too long before testing it (TWICE), Isaiah got poked quite a bit. They actually had to have three nurses to do his I.V because he was moving and bending his arm so much. One thing we do know is Isaiah has great muscle tone. As in, he's already trying to roll over when he does inclined tummy time. Like I said, he's a strong one.

The next morning rolled around and as lunch time came we learned that Isaiah was not going to get into MRI that day. Someone at some point (things are a bit blurry) said something about the whole hospital being full? I'm not sure. But there was nothing we could do about it so we were definitely staying another night.

The blood draw they did came back as elevated for toxoplasmosis. We spoke to doctors from infectious disease, neurology, pediatrics, and ophthalmology. They told us along with the MRI they would be doing a few other tests including a lumbar puncture and EEG to make sure that all bases were covered. One of the doctors from our pediatrician's office came by thinking the MRI would have been done already. When she learned how long we had been waiting she sprinkled her magic MRI dust and got us scheduled for 8:30 the next morning. We knew this wasn't a guarantee but it was a lot better than hoping we would get in at some point. So we spent another night in the hospital (Wednesday night) with people waking us every few hours to check vitals and such. Hospitals are terrible places to sleep.

Thursday morning we walked down with Isaiah (it's a good thing they have a whole unit of transport people because that place is HUGE) to meet the anesthesiologist that would be monitoring him during the MRI, eye exam, and lumbar puncture. He was a blessing. Even though he was a bit eccentric (aren't we all) he got my cell phone number and personally texted me updates as Isaiah went through all his testing. I can't imagine having to sit in the room for the four or so hours it took not knowing anything that was going on. Isaiah did great. No complications. Came back up to the room and ate like a champ.

Not too long after, we spoke to the neurology team about Isaiah's MRI. Isaiah is missing brain tissue and has calcifications in his brain. The amazing thing about a developing brain is that it has the ability to compensate. We just don't know how badly his brain injuries will affect him. He could have some minor developmental delays or he could be mentally handicapped. This is something we are praying over.

The EEG was going to give us a picture of how his brain was handling the deficits so far. It would tell us if there were any extra electrical discharges going on. These extra charges can disrupt his learning, his sleeping, or cause seizures. Then we learned that since they didn't get the EEG scheduled before he went under sedation for the MRI we would have to wait until the next day to make sure the test wasn't skewed. Fortunately, we had an amazing nurse who bent the rules and brought a small crib in our room for Isaiah to sleep in (as opposed to on top of me). I learned I could have them take the vitals when Isaiah was already awake to eat. Instead of him eating, me getting him back to sleep and then 30 minutes later they wake him up to take his temperature. That night Isaiah slept six hours straight. Poor guy was worn out.

After a much better night of sleep for everyone we took Isaiah down for his EEG. He was not a fan. It involves using goop to stick 25 or so electrodes to his head. Once we were able to get things started Isaiah did great. Getting information while they're asleep is the most important and we were able to get Isaiah passed out pretty easily. The results from his EEG indicated two things. Slowing on the right side and extra electrical discharges. We were able to go ahead start some medication that should help with the extra discharges.

We were able to come home Friday evening after our extended stay in the hospital. It was definitely a whirlwind of information and tests. Overall, the prognosis is still up in the air. He's just so young, and the brain is so malleable, that we don't know how affected he'll be from the physical limitations he has. Please continue to pray that we rely on God during our decision making process as we move forward in Isaiah's treatment.
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Toxo Fact: There is actually no correlation between cat ownership and being infected with toxoplasmosis, especially in indoor cats.

Discovery

Eye deviation at nine weeks old. Also lots of cuteness :)

Disclaimer: I am not a writer. This blog will have two main purposes. The first is so that friends and family can be up to date on Isaiah's care without us having to tell the same story fifty times. Second, so that I have a place to record hospital/doctor visits and how Isaiah is progressing. Do not expect this to be anything fancy or any kind of literary genius. I'm sure I've already made five grammatical errors in this paragraph alone. Moving on..

How We Discovered Isaiah had Toxoplasmosis 

Last Monday, September 23rd, my dad and Gabriel finally convinced me to call the pediatrician about Isaiah. He had turned 10 weeks old and wasn't making eye contact, tracking, or smiling. Most of these skills happen in the 6-8 week range. We also noticed some time after Morgan's birthday party (around 7 weeks old) that Isaiah looked to the right. Almost exclusively when his eyes were open he was looking right. So I called the pediatrician thinking they might say, oh wait a few more weeks and get back to us. But they told me to go ahead and bring him in and that's when I first started to worry. By the time I actually got a call back we couldn't go in until the next day, Tuesday. So I had a whole night to try not to think about why my kid didn't want to look straight.

Tuesday came and Gabriel and I took both boys to the doctor. Gabriel actually took a separate car because he was planning on going into the office after we left the pediatrician. Not so much. Our normal doctor was out of town so we saw one I'd never talked to before. Dr. Conlon immediately noticed the eye deviation. Isaiah's pupils reacted to light but he didn't want to look straight. That, paired with a lack of social smile, led to a call to an ophthalmologist three floors down. Dr. Kumar allowed us to come right then, which later turned out to be a huge blessing.

So down the elevator we went. One of the first things Dr. Kumar told us was that some babies are just slower developmentally and that eye deviation in a two month old isn't worrisome. Then he discovered Isaiah wasn't responding to light at all in his left eye. They did some dialation drops (which take 45 minutes to work) so Dr. Kumar could look at the anatomy of Isaiah's eyes. He said if nothing was physically wrong we could just come back in a few months for another check up. At this point we were 30 minutes PAST Morgan's nap time. He was obviously tired but was such a trooper. They had a movie on in the waiting room and he sat in Gabriel's lap, leaning back on his daddy's chest. No fits or tantrums. Such a good big brother.

After the drops had time to work we went back in for a more thorough exam. Right eye looked good. Then when Dr. Kumar was looking in Isaiah's left eye he asked us if we had any cats. We have two indoor cats. He then tells us he sees scars on Isaiah's eye that look like classic toxoplasmosis. After looking some more he said Isaiah had three scars in his eye. One of them in the middle of his 20/20 spot which would prevent him from ever seeing perfectly. Nothing looked like an active infection but toxo almost always affects the brain as well as the eyes. Dr. Kumar suggested we get a CT or MRI as well as blood work as soon as possible. He rode the elevator with us back to see Dr. Conlon to tell her what he saw. After a very quick discussion, Dr. Conlon said the most efficient way to get all of the testing done quickly and easily was to admit Isaiah as a patient at Memorial Hermann across the street. Cue the tears. While I fed Isaiah (it was past three at this point) Gabriel and I called our parents to let them know what was going on. More tears. We arranged for my parents to take care of Morgan so Gabriel and I could stay at the hospital. Our 11:30 appointment eventually turned into a four day hospital stay. To keep from having the longest blog post ever I'll post about the hospital later. (Since this post is past tense I do want to say that Isaiah is not in any immediate danger and we are officially home from the hospital.)
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Super Basic info on Congenital Toxoplasmosis