Family Update - Isaac

Isaac has become quite the big brother to Elliot. He helps to keep him safe while also being a bit rough at times. I can't believe it but he just started first grade! He's doing really good at reading and is starting to get into math. Right now he's really into legos, especially Star Wars legos. And he's gotten very good at building things on his own. Now that Andrew is working on this side of the lake, closer to Isaac's school, he has been able to start an after school activity - KARATE! He's so excited. It seems like a really good program and is helping with focus and discipline.He's also recently lost two of his teeth, which he was really excited about. Isaac makes us laugh daily. It's funny how observant he is.

On Fourth of July weekend, Isaac had yet another hypoglycemic episode while we were visiting with Tat and Omi. He went to sleep that Saturday night without taking his cornstarch and the next morning, he was seizing. Once again, we found ourselves in an ambulance. This time, spending the night for observation. He followed up with an endocrinologist and nothing was found. Not sure if I shared this but last fall he was diagnosed with a genetic disorder of PTEN sequencing. It's called Bannayan-Riley-Ruvalcaba syndrome. Say that 5 times fast :). In a nutshell, it puts him at risk for noncancerous tumors called hamartomas. He has to have a skin check by a dermatologist and a thyroid ultrasound each year. We're planning on the skin check in October and the ultrasound checked out ok. According to the geneticist, the hypoglycemia should NOT be linked to this disorder. He did find ONE research article that may support a connection. We enrolled Isaac into a study for another cause of the hypoglycemia.

Right now, he still has a diagnosis of exclusion - ketotic hypoglycemia.

Here are some pics from Isaac over time since  my last post. We're gearing up for his 6th birthday party in a few weeks!

 Playing in the "snow" during the big freeze

 

 

 Mother's Day (He insisted on wearing a tie for the "fancy" day)

 

First day of First Grade:

Happy Early Birthday, Elliot!

Hi all :). I'm sure everyone has heard by now that Elliot has graced us with his presence earlier than planned. I wanted to share the story here. Also with him in the NICU, I'll be updating everyone on how he's doing on the blog.

So on Monday, I followed up with my OB and handed in my urine for another 24 hr urine eval. My blood pressure readings at home had been great while on bedrest. They had been running 120s-130s/80-90s for the most part. However when I went in to see Dr. Dutreil, it was the highest it's been. The first reading was somewhere around 170/115. They did my nonstress test in hopes that by lying still for 20-30 minutes, it would get better. When they retook it, it was 210/124. He couldn't believe how high it was, especially considering I had no symptoms and my home readings had been great. We brought in my monitor and took my bp to see if maybe there was something wrong with my machine. It also registered high. He sent me to labor and delivery to be monitored again. I could tell right away we were a little more serious than last time. They actually admitted me this time and he also wanted me to get started on an IV. My bps were still high.

When my doc came up there to see me, he was really unsure about what we should do (as was I). I had no symptoms...I was 32 weeks pregnant...I had gotten the betamethasone to help mature baby's lungs. In the end, he decided that we couldn't take the chance of something severe happening-from placental abruption to a stroke. As they put me in a labor and delivery room and started getting things prepped for the induction, he got my urine protein results: 349. Anything greater than 300 + high blood pressure is considered preeclampsia. So we were sure at that point that we made the right decision.

The first med I was given through IV was hydralazine. It's a fast acting high blood pressure med. I got quite a few doses of this. Next, I was given penicillin. Normally around 35 weeks, pregnant women are tested to see if they have Group B Strep. Without having this done, they gave me antibiotics just in case. Next, I was started on magnesium sulfate. This was rough! This is given with preeclampsia during the whole labor/delivery and 24 hrs after to prevent seizures. While receiving it, I was on bed rest and had to have a catheter the entire time. Also, they had to draw my blood every 6 hours to make sure the magnesium level in my blood wasn't too high. 

To start the induction, they gave me cytotec-just as I got with Isaac. It's a pill inserted vaginally and then they check me 4 hours later to see if I was dilated. I got 3 rounds of this and got up to 2 cm. My doc was hoping for more so we then had to do a bulb foley (same as with Isaac)-its a little balloon that's inserted and puts pressure on the cervix to dilate. They also started pitocin at this point. Not long after, I got the epidural. After waiting a few hours, they checked to see if it had to be adjusted...the bulb came out which meant I was now 3-4 cm. With 6 cm left to go, they told me an estimated one hour per cm to go.

A few hours later, the doctor came to check me and was surprised to see that baby was ready to come out. NOW. haha. Doc's face was pretty funny. They prepped and within10-15 minutes and 2 pushes, Elliot was out. We were happy to hear him crying, which meant his lungs were working. His apgar scores were 9 and 9, which is perfect. We got a quick pic before the NICU staff whisked him away.

I then had to wait until I was off the magnesium to go visit him. That was hard, especially when other people were going to see him. Elliot has been doing great in the NICU so far...I will make a whole separate post about the NICU experience and will keep ya'll updated. People have been asking about exactly what happened...so here it is :).

My blood pressure is now normal while on my regular medication. I am following up with my OB next week for blood pressure and then again in 6 weeks for postpartum checkup. Physically, I am feeling great other than a very sore back which I'm attributing to bedrest and a very uncomfortable hospital bed. I'm so glad to be out of the fog that is the magnesium sulfate. I'm now focusing on getting my breastmilk supply up for my baby boy. As I said before, check the blog regularly for updates on Elliot's progress.

Thank you so much for all the kind thoughts and prayers, as well as for everyone who helped us through this process. With him in the NICU, we're continuing to get great support. Thank you :)

Not Again...

Isaac had another episode today. The crazy thing is that I was just letting up a bit. I did notice a slight cough and runny nose yesterday though. And he didn't eat a lot of dinner, so I decided to check it at 1:15 am. I got 80 (a good number). Because of Mardi Gras holidays Andrew was staying home with Isaac today. I was worried that they would sleep late and that Isaac would need to eat so I checked it on a whim this morning around 6:45..I was not expecting to see "Lo" on the screen. Because Isaac was sleeping, it was hard for me to assess him. I blamed the glucometer and decided to change batteries. I did, and when I took it again it was 20. Once again, that is severely low.

I yelled for Andrew and tried to wake Isaac up. It's so weird. After every episode like this we get more and more prepared, yet I still feel lost. I knew that we had to give him a serving of carbs (15g) but I also knew that I couldn't just shove food down his throat. I grabbed the glucose gel and started dabbing it on his gums trying to get it to absorb. He woke up a bit and fought back, and I have to say that it made me happy. Then his teeth clenched, and I was waiting for a seizure...it never came.

I knew the protocol: "Give 15 grams of carbohydrates, wait 15 minutes and retest." Well, 15 minutes is a long time. As time went by he started becoming pale and a bit limp.

I called 911. I have a glucagon shot to give if needed as well, but I'm so scared to use it. (Glucagon does the opposite of insulin-it helps to raise blood glucose.) The paramedics told me just to keep giving the glucose gel.

By the time EMS got to us, he was doing a bit better. They couldn't get an IV in him on the way to the hospital, so they kept giving him more glucose gel. He threw up a little bit but he was sitting up in a little carseat. That's when I noticed his eyes not focusing well, like in the past. In the ER his glucose slowly went to 113 from getting his IV fluids. He was discharged and we went to see the endocrinologist right away.

I don't get much from her. All his labs came back normal, and we were told to follow up in 4 months. Gee, thanks. In the meantime, we need to continue the snack at bedtime.

Yeah, got that. Thanks.

I think we'll be going to Children's Hospital for a second opinion. Not that I don't trust this hospital, in fact, I have nothing to complain about. But, they haven't found anything. I'm no expert in this stuff but dropping 60mg/dl in 5 hours seems like a LOT. I just want another opinion.

I'm really starting to feel powerless over whatever this is. I used to think that as long as I can check the glucose then it'll help my peace of mind. I never thought that it would drop so much so quickly. I knew he had a little cold, but I thought that it was under control. I just wish I can make this stop. I hate to see him go through this each time. And I don't know what's scarier...seeing him have a seizure or looking at him pale and limp. Either way, it's a lot to handle! And now I'm not sure how to deal. At this point I'm wondering if sleeping 2 hours at a time will work!

I'm glad that Isaac's stable now and we're trying our best to keep him well.Please keep our family in your prayers. Here's a pic of him tonight after eating his oatmeal+cornstarch before bed.

Another Health Scare

Just wanted to let you know that we had to bring Isaac to the hospital again two weeks ago. He had another hypoglycemic episode overnight, and in the morning he had some more seizure-like activity. He wasn't admitted this time, but we were able to move the geneticist appointment up. He told us that some of Isaac's labs are a little funky and we got some more bloodwork this past weekend. These are genetic, chromosomal tests and need to be sent off. We won't get back results for 6-8 weeks. He did tell us what he's thinking, but he also warned that he doesn't have a lot of information yet. He's thinking possibly a glycogen storage disease or a mitochondrial disorder. I only know about glycogen, nothing about mitochondrial disorders. And I'm not going to kill myself trying to figure it out.

For now, we're just praying for the best and taking care of our boy in the meantime. He's doing great as you can see by all the pics.Now that we've had an episode at home, we're much more prepared. I have been checking his glucose in the middle of the night and if it's already dipping, then we have to wake him up and feed him. Other than that, we're armed with glucose gel that we can rub in his mouth to get his glucose up quickly. I also have glucagon that I can inject in his thigh if I can't get it up and the seizure is not stopping. Hopefully I won't ever have to use that.

Please keep us in your thoughts and prayers. We have trust in God :)

Hospital Stay

Recently we had a major scare with Isaac that resulted in a hospital stay and I just wanted to let everyone know what's going on. One morning Andrew got Isaac up for school and kept telling me how tired he was, and he even fell when he tried to walk. I didn't see the fall and I didn't think too much about it. When we got to daycare, the same thing happened but he was really out of it so I came back home and tried to give him something to drink. We brought him to his doctor and he was getting worse and worse. By the time we were called back, he had a seizure. We took an EMS to the hospital and we found out on the way that his glucose was low...very low. In the ER he was taken care of and then admitted to the hospital to try to find the cause of his hypoglycemia. We stayed for two nights. He was doing well during that time, and they took some bloodwork. In December we have to follow up with a geneticist. They want to rule out metabolic disorders that may be the cause of his hypoglycemia. It may just be a case of hypoglycemia, which is possible. Because of the speech delay, they have reason to think it may be more.

So now we just pay extra attention to how long he goes between feedings. He loves to eat, so this isn't a problem. They think it may have happened since he was about to get sick (two days later he had an ear infection and bronchiolitis). I bought a glucometer and have to stick his finger when I feel necessary. I did it every morning for a week after the incident and only a couple times after that. They've all been normal. I'll keep you guys posted on what the geneticist says. In the meantime, please keep him in your prayers!

Hospital/NICU pics

Here are some pics from Isaac's birthday and from his stay in the NICU.

Happy Birthday, Isaac!

Our newest family member!

Settled in the NICU

Hi daddy =)

All dressed to go home for good this time!