Flourishing

I haven't had any time to blog lately. Last week Autumn caught a bad virus from VBS. She had a tummy ache and a spiked a temp of 104 degrees! It was hard trying to care of her AND keep her away from her brother during the most contagious period. Whew! Fortunately by Monday she was feeling much better and the rest of us stayed well. Gotta love those zinc tablets!

Isaac is still enjoying the stander and tolerates it for 20 minutes twice a day. He's does well and is good at giving us cues when he's "all done."

Other than standing and staying well, we are enjoying our beautiful backyard. While I can't seem to keep a house plant alive, my husband is very good at keeping the outside plants alive and they are starting to flourish! Here are a few pics.

Swing set.......
Blackberry bush........If you look real hard you can see my cute chocolate lab.A couple of our fruit trees next to the swing set........Grape vines.......

Isaac's Stander

Yesterday we took Isaac to the therapy center so that he could be fitted for a stander. The center is loaning this to us for a couple of weeks. Then hopefully soon we will get one of our very own! This was the first time he had ever been to the center! He has always received home based therapy due to being very prone to respiratory infection. His PT took him for a ride in the stander up and down the hallway so that he could check the place out.

At first he looked like he wasn't too sure what to think.

Then he started playing with his silver crinkly paper and then life didn't seem so bad.

He started coming unglued after hearing some unfamiliar noises. I started singing the ABC song and he smiled right away and started waving at me.

At home he enjoyed standing in it while watching his favorite Baby Einstein video and playing with his favorite toys. This is the good life!!
-Colleen

2 years ago

It seems like it was just yesterday....on April 13th 2007 when our 2 pound 8 ounce, 15 inch baby boy entered the world and changed our lives forever. On April 10th I went in for a routine ultrasound and to my surprise my doctor said that Isaac wasn't doing well and that he wanted to have me admitted to the hospital for a possible c-section. Even though I knew that he would be born premature, he wasn't extremely early and I knew that babies at this stage in gestation usually survived. After being admitted to the hospital my husband and I went to another ultrasound and got the shock of our lives when the hospital Doctor showed us some markers indicating a possible disorder. All I heard her say in that moment was stillborn and chromosome disorder. I couldn't tell you what happened the rest of the day. It was all such a haze. Isaac was born into the world 3 days later by c-section and hearing him cry was music to my ears! The amnio at that point had come back negative for Down Syndrome, trisomy 13 and 18. We were hopeful that maybe the Doctor was wrong and that he was going to be just fine. One week later we got a phone call. Isaac had a deletion off of chromosome 10 and later we found out he also had a duplication of chromosome 14. What does this mean we often asked? We found very little information. As a parent you want to be able to make your child better. I couldn't do that. I couldn't fix his chromosomes or know exactly what lied ahead for his future. He spent 4 months in the NICU fighting infections and struggling to eat. I had no choice but to get on me knees and pray that God would give us the strength we needed to make the day by day. And he did! In July of 2007 Isaac went back for a simple g-tube and fundo surgery and was struggling to breath after that. I didn't understand what was going on. Apparently it took the staff 2 hours to intubate him for the surgery. His airway was collapsing and he was diagnosed with tracheal malacia and tracheal stenoses. I remember signing a paper. The rest of the day was all such a haze. On August 13th 2007 we brought this little man home. He was 4 months old and only weighed 6 and 1/2 pounds. He was smaller than the average newborn! I posted some photo's mr. Isaac in the NICU and right after getting him home. You can see how huge his trach mask is on him because he was so teeny!

Long Day

Yesterday was a long day and Isaac handled the scope and ear tube replacement like everything else.....a champ! The ENT didn't find anything new or unusual going on in the airway that would solve the mysterious oxygen requirements, but since he has had the same trach tube size since he was only 6 pounds, she decided to place a larger sized trach tube. Last night he needed less oxygen, but it would be a long shot to say that the new trach tube did the magic trick. During the ear tube replacement he had wax buildup and polyps inside of his ears (ick!) that she cleaned out. No wonder he has so much hearing loss!

After the scope Dr. A said that Isaac is still next to impossible to intubate so it looks like we're looking at some more growth before we think about a decannulation (trach removal). Sad face. I've been having some minor issues with Dr. A lately concerning Isaac's PMV valve and some other questions where I seem to be getting more adequate information from the respiratory therapist. I'm considering looking into a 2nd opinion. Please pray as I make this decision.

Now that things are settling down (I'll try not to say that too loud) I'm going take some time out for myself while Autumn is at VBS this week. Yes, even supermom can experience a major case of burnout every now and then so I might indulge in a big giant chocolate bar, take a bubble bath or maybe even take a nap!

Here are some photos of the happy guy waiting to go back for surgery.

Home And Still A Mystery

It was a very short stay......only 2 1/2 days and they found absolutely nothing. We still don't know why he needs so much oxygen at night and only needs room air to 1/2 a liter during the day. The hospital shrugged their shoulders, gave us a pat on the back and sent us home on antibiotics. For what I wonder...they didn't find a source of infection.

I moved the Pulmonologist appointment up so that I can discuss the benefit of bi-pap at night. First and foremost we have to make sure that their isn't a structural thing going on and so we are going to proceed with the bronchoscopy on Monday. He will be put under anesthesia, so pray for smooth sailing. The procedure will be at noon. Thanks again for the prayers and the nice comments. You're awesome!

-Colleen

We Have Been Here.....

Yes, we have been in the hospital since yesterday. After troubleshooting the oxygen concentrator, we discovered that it's working just fine and that it actually is HIM. Doesn't he look fabulous? That's what we can't understand!

Here's how it went.....on a typical night Isaac needs 1-2 liters of humidified oxygen while sleeping to maintain an oxygen saturation level of 92% and above. By the time the nurse arrived Monday night I had to crank him up to 8-9 liters of oxygen.....our concentrator only goes up to 10! So naturally we took him up to the ER Tuesday morning. When we got there his o2 sat levels were fine, his color was good, he was his sweet and happy self. Even though he looked good the doctor decided that 9 liters of oxygen was a little too high for comfort to send us on our way home. He was admitted yesterday afternoon for observation. By sleepy time they had to crank up that oxygen....so now we know it isn't just us or our oxygen concentrator.....So it is a mystery. The culture has come back so far as normal flora, which means no major infection is brewing. The chest xray isn't showing any kind of pneumonia.....It is a mystery.....Most likely he will come home within a couple of days......I will most likely postpone the scope that he has scheduled for Monday being that he would have to go under anesthesia.

Some people have suggested that we should look into using bi-pap support at night. I don't know if I want to go there right now....I feel as if this would be a step backwards....it's something to think about and I will be talking to Pulmonology. Thank you for your thoughts and prayers! Thanks Heidi for coming up and bringing me banana bread!

-Colleen

Our Weekend

We had nice 4th of July weekend with family and the little man. Isaac decided that since we didn't take him to see the fireworks that he would make life a little more exciting. His oxygen saturation's dropped during the night and he was needing a whole lot of oxygen! In talking to the home nurse lastnight, we discovered that there may be a mechanical problem with the o2 tank. So pray that that's the case and it's not him! On Friday we had my Aunt Karen and Uncle Dave over from California and then on the 4th we had a BBQ with Sam's family. Here are some photos...the first 2 are of Isaac and his Great Aunt Karen and the last pics are of him and his Grandma Carolyn.

Just Chillin'

This morning I took Autumn to the park and we met up with a couple of ladies from our church group. The rest of the day we have just been chillin' out with Isaac and the air conditioner. It's hot! Friday we are having a BBQ with My uncle Dave and Aunt Karen who are up visiting from California. They will most likey be surprised to see how much both Autumn and Isaac have grown since they saw them a year ago! Isaac's dietitian came by last week and he weighed in at a whopping 23 pounds and 29 and 3/8 inches long.

July we don't have very many appointments, which will be a nice change of pace. On Tuesday Isaac is finally going to the center to be fitted for a stander. Yay! Then on July 13th we have the big scope. Then in August we will have several appointments! I don't even want to think about August...uggh!

Here are some pics of Isaac chillin' out watching his favorite Baby Einstein video. He's so cute....he's SO glued to it.

Have a happy and safe 4th of July everyone!!

-Colleen