A Reflection of the Past Year

Disclaimer: This post is long. And it's a bit more about me, Jacqueline, than usual. And it's personal. I'm praying that God will use my/our story to encourage someone who may be going through a situation similar to what we have/are going through.

"Mama." A couple of days after Isaiah's first birthday he said, "mama" for the first time. I keep having to remind myself that there was a witness and I'm not making it up in my head. He's only said it the one time but he connected consonant and vowel sounds to form a word. His babbling continues to develop. It has purpose. He's not just making noises all the time, although he still does that a lot.

This post is a long overdue reflection of Isaiah's past year. But I have to go back a bit further so you can understand where I'm coming from. I have been pregnant four times. Getting pregnant with Morgan was pretty easy. I didn't want to tell anyone besides immediate family because I kept thinking that something was going to happen. But it didn't. Morgan is beautiful and healthy and vibrant. Before he was even a year old I became pregnant again. The week before the first doctor's visit at eight weeks I had a miscarriage. It was difficult. But I suppose I wasn't very surprised. I knew these things happened to a lot more women than we realize. I knew in my heart that God still wanted me to have children. So two months later I was pregnant again.
Just a couple of days after the positive test I had a morning where I felt very strange. I felt a pang in my side and just laid on the kitchen floor. Gabriel got up and took care of Morgan. I drank a bunch of water and rested and the weird pain went away. Then a couple of days later the same thing happened. I rested and it went away again. Then a couple of days later the weird pain came back but it wouldn't go away. I called my doctor's nurse in the early afternoon and she said if it continued to persist I should come in to get checked out. I wasn't even five weeks yet so they wouldn't be able to find a heart beat but they could tell me that I was ok. Later I collapsed in the hallway so we called and said I was coming in. That night I had emergency surgery for an ectopic pregnancy. I had a ruptured fallopian tube that was causing internal bleeding. By the time they took me back for surgery I had blood as high as my lungs.

Losing two pregnancies within a few months was difficult. It was very hard. My family was very supportive and helped with Morgan while I recovered. Very soon after my surgery we had a women's retreat at our church. There I was able to really come to terms with the pain I was feeling and pray with Godly women over future children and my heart and everything.

A year later I missed the women's retreat because I was giving birth to Isaiah. I went into labor while women at my church were gathered. God's timing is His own. I have no control over anything and I especially feel that in bearing children. I can't pick what color eyes they have or their skin tone or anything. God chooses all of those things. He chooses to give me a baby with congenital toxoplasmosis after losing two babies. I don't share all this for pity. I share it so you can all appreciate how much of a treasure Isaiah is to us.

My whole life has been in preparation for being Morgan and Isaiah's momma. I was the sibling of the child with brain injury and vision problems. (For those of you who don't know about my brother he's a stellar guy who competes internationally in triathlons. You can find out more about him here, Brandon Adame.) I have a unique perspective in raising Morgan as the sibling of a child who will get more attention. I have the blessing of parents who have been the parents to a child who needs more attention. These things don't just HAPPEN.

In the past year I have had to lean more on God than I ever have. I have needed Him more than ever. Gabriel has been an amazing father to our boys. He has led our family through the most difficult choices and he has rejoiced in the progress Isaiah has made. I am so thankful to have him as a husband to me and a father to our children.

As Isaiah has continued to grow we have had every major prayer answered. We prayed that he would just smile and now he lights up when he sees daddy after he's been at work all day. He laughs when he swings at the park. We prayed that he would normalize his tone so he could develop fine and gross motor skills. He can now sit and play with toys without me being worried he'll fall over. He can pick toys up and bang them around. We prayed that he would be able to talk and he babbles and said mama. Isaiah said mama. We prayed over his shunt procedure that it would go well and that there would be no complications. It's not a stretch to say that it is a minor miracle that he continues to be obstruction and infection free.

We continue to pray and trust in God's plan for our lives. Our current prayers are for continued development in these areas and healing in others. Isaiah's last eye appointment revealed a huge change in his vision in his left (bad) eye. His vision went from a -6 to a -11. Some change is normal but this was quite a jump. We go back in a few weeks to check everything again. As always thank you for your prayers and support. Please continue to pray for Isaiah's development and do not hesitate to contact me if you are going through something and would like prayer and encouragement.

Eye Surgery Post-Op, EEG, Hearing Tests and Almost One

Eye Surgery Post-Op

So Isaiah's surgery went well. They warned us ahead of time that his eye would be blood shot and he would have bloody tears. But there's nothing quite like holding your baby and him crying blood from one eye. It was intense. But he has been healing great and his eyes are working together a lot better!

EEG and Hearing Test

After our six month follow up with the neurologist we decided to do another EEG and a hearing test. The EEG was to make sure that an eye movement he does is not a seizure. The eye doctor is very confident it's related to the eye muscles, and since his surgery we haven't seen it much at all. But we wanted to make sure we weren't missing anything. His results came back the same as before. Abnormal. But that is to be expected based on his MRI. So nothing new there. 

The hearing test however was inconclusive. Doing a hearing test on a normal ten month old isn't always conclusive anyway. However, Isaiah was not responding to most of the stimuli on his right side. When they played noises he would often turn his head left (not every time they played a noise on the left though...) but when they played them on the right he never turned that direction. They also put a thingy (super technical right?) that played some higher pitch noises and he wasn't giving normal responses. So instead of waiting a few months and most likely getting more inconclusive results with the same test we went up a level. This requires mild sedation so they can get ear specific information. They will be able to tell us for each ear if there is any range of hearing that he is missing. If he is missing any ranges this could explain his speech delays, but it could also mean he needs a hearing aid(es). So that test is tomorrow (Wednesday) morning. 

Almost One

You guys. Isaiah is almost one. I plan on doing a more involved post in the next couple of weeks about what his first year has brought for us but I can't believe it's coming up already. This month. My baby will be a year old. CRAZY. 

As always thank you all for your prayers and support. Feel free to contact us if we can be praying for you!

Eye Surgery and Neurologist Follow Up

I hope you all are enjoying my super creative titles ;) Isaiah has eye muscle surgery tomorrow morning first thing. It should last about an hour and we should be able to go home the same day. Dr. Kumar, Isaiah's ophthalmologist, will be performing the operation. We have felt confident with him from the get go. Look for an update post-op on how Isaiah's eye is functioning and healing.
We also had a 6 month follow up visit with Isaiah's neurologist last week. Although we almost had to reschedule...that's a post for another day. Dr. Hainlen said Isaiah was looking good. We scheduled an EEG and hearing test as precautionary measures. Isaiah does this thing with his eye that we want to double check isn't seizure activity and we want to make sure his speech delays aren't related to some sort of unrealized hearing loss.
As always, thank you for all your thoughts and prayers!

Follow up MRI and more

Left: December Right:April

MRI
This past week we went for another follow up MRI. The image is one Gabriel took off the computer from his phone so it's crooked but you can see the difference. The image on the left is from December, six weeks post shunt. The image on the right is from last week. The white spaces are the ventricles which were enlarged and putting pressure on his brain tissue. The shunt helps the brain to circulate his CSF (cerebral spinal fluid) properly which allowed the brain matter to expand and fill the space that was once taken up by fluid. You can also see another slice under the picture on the left and compare it to the slice in between the two larger images.
I keep having to remind myself how big of a deal this is. Less pressure generally means more cognitive ability. Not only is this more affirmation that we made the right choice to put in the shunt but it gives us more hope as to how well Isaiah will function in the future. And again, he has continued to be infection and obstruction free. Technically, anything up to six months after the procedure is still considered "post-op" so we aren't COMPLETELY out of the danger zone. But my understanding is that most infections would have presented by now, and we would have seen an obstruction in the MRI if there was one. We continue to pray that Isaiah will be in the minority and never have to have his shunt cleared or replaced.

Leg rolls!

Developmental Delays
With all of that being said, Isaiah is still developmentally delayed. He acts more like a 5-6 month old than a 9 month old. He can sit independently for thirty seconds pretty consistently, sometimes longer. (This has been one of his biggest jumps so far!) He can roll to his side and has rolled to his back from tummy but not very often.
Most children that show delays in gross motor also show delays in speech. Isaiah is still not making consonant sounds although I heard his first "baba" this past Saturday. It was VERY exciting.
Children develop from the top down and the middle out. What this means is first they gain head control, then torso, then legs. And from torso out to hands and fingers. So Isaiah has great head control and is working on his core muscles and torso. The tongue makes such fine motor movements to speak that until he gets better control over his big movements it's less likely for him to make much progress in speaking.

Eyes
We have held off on the muscle surgery for Isaiah's lazy eye until he is developmentally closer to six months. He was also still making improvements from what we could see so we wanted to wait until we felt like his eye was functioning as good as possible. We will probably schedule the surgery after our next appointment which is next week. I will for sure post an update if that is the case so you can be praying for it to go well.

Here's a link to Isaiah playing with his laptop, which I promptly left in a hotel :(

As always, thank you all for your continued prayers and support. As you may have noticed, I'm not super great about updating so if you ever wonder how we are doing please feel free to facebook me or send an email!

Progress

Huge grins :D

Answered Prayers
First and foremost, Isaiah continues to be infection and obstruction free in his shunt!!
Isaiah laughs. He looks at us and smiles and if you tickle him or shake his legs he'll laugh at you. I remember praying that Isaiah would just smile at us. And now he laughs multiple times a day. Definitely an answer to prayer.
Isaiah met one of his goals for ECI. He was able to tolerate ten minutes of tummy time without getting super upset. Considering he couldn't even do a minute when we first started, this is pretty exciting. You always hear that tummy time is important for development, and that's because it really is. Especially in Isaiah's case when he has muscle hypertonicity (tight muscles) in his arms.
He has also started gaining weight well again. Since my last post Isaiah slowly fell down to the third percentile in weight. Even though I offer a bottle pretty much every day he is NOT a fan. I've never been able to get more than half an ounce in him. Well, a couple of weeks ago we started solids. Isaiah LOVES solids. He will kinda grunt at you and sit there mouth wide open waiting for the next bite if he thinks you aren't shoveling it in fast enough. I'm continuing to nurse and Isaiah is getting formula mixed in with his rice cereal. I'm looking forward to when he'll actually drink from a bottle so Gabriel and I can leave on a date before 9pm :)

ECI
Isaiah is doing pretty well with all of his therapies. He is now reaching out for things more often, especially crunchy toys and books. He is not rolling or sitting up yet but he is showing signs of both. In terms of speech, he's still not making a variety of consonant (mamama, bababa, papapa are usually first) sounds. Starting next month we will increase his speech therapy to twice a month to make sure we are doing everything we can to help encourage him.

Isaiah's pirate patch

Ophthalmology
Isaiah had an appointment with his ophthalmologist, Dr. Kumar, early last week. The main purpose of the visit was to assess if Isaiah would need surgery to fix his left eye which has amblyopia (lazy eye). We will most likely be going forward with surgery in the next two weeks. They will try to help fix the muscles that are causing Isaiah's eye to turn in towards his nose.

Christmas Morning Kisses

In the interim, we are patching Isaiah's good right eye to encourage his brain to take input from his bad left eye. Because his right eye is so much better, his brain was starting to ignore his left eye. You could cover the eye and he wouldn't care. Patching forces the brain to take input from the bad eye and make connections that it would not do otherwise. It's amazing how much better his left eye moves when his right eye is patched. We also ordered glasses to help the brain see clearer from the left eye which will give it another reason to make connections. We are trying to maximize what the brain is receiving from both eyes. So Isaiah is patched for half of the time he's awake every day. When I take the patch off he fusses for about three seconds (because it's like pulling off a bandaid) and then he opens his eyes and you can see his brain realizing, oh hey this eye is working again.

Prayer Requests
-That we make the right decision regarding eye surgery
-That Isaiah will continue to move back up in percentiles for his weight (as of today he's back up to 9th percentile)
-That Isaiah will drink happily from a bottle (so momma can go places :) )
-That Isaiah's speech will develop and he will make consonant sounds regularly

And finally, a video of Isaiah chuckling when I tickle him. Enjoy! :)
http://www.youtube.com/watch?v=NaQIt_8_9mE

Thank you for all the prayer and support you have given us!

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.