Fight vs. Flight

It has been a while since I took the time to sit down and update all of you. The last few months have been chaotic  wonderful challenging busy interesting. 

James is over 8 months old now. He loves oatmeal and squash. He's bursting with personality. He enjoys bouncing in his jumper seat, and he would play peek-a-boo (Wheres James?!?) for hours if he could find someone willing to participate for that long. 

Today is our 45th day in a hospital. This is his second hospital stay since our last update and his 5th visit overall. After he recovered from RSV in February, he picked up human metapneumovirus and a touch of pneumonia in April. Now, he has another virus that has landed us back on our usual floor at Cooks. He requires regular breathing treatments and oxygen support when he's sleeping. But, he is taking it all like a champ!

He smiles even when he's obviously uncomfortable. He laughs even after we suction all of the junk out of his brain nose.  He plays even when he's hooked up to tubes and monitors. In short... James is taking all of this way better than his parents are. 

I just read an article about anxiety and how it relates to our natural fight or flight responses. Tonight I have my own version of that theory. Tonight  I am too tied to fight. Tonight I am going to sit and fantasize about taking a flight to an all-inclusive beach resort that serves pretty drinks with umbrellas. 

P.S. We are currently reevaluating James' daycare situation. While we LOVE his teachers, his immune system is just not ready for a classroom setting. If any of our friends and family in our area know someone that Is keeping a small number of kids at home, or might be willing to make some extra money hanging out with an adorable baby during the week, please let me know! You know where to find us! 

See you in 6 months!

"See you in 6 months!".....Is the best news we've heard in a long time.

It's also what the Cardiologist said at the end of James' appointment yesterday! We are slowly dropping specialists off of our list of monthly follow ups, and that makes Mommy's life MUCH easier.

After delaying several times, I'm sure our day care center was starting to think that this day would never come, but yesterday was also James' first day  half-day of day care. His teachers said he was wonderful and they are already fighting over who gets to hold him.

Until next time,
A, L, & J

All Patched Up

James is out of surgery and doing well! They gave him the good drugs, so he will sleep soundly tonight. There are a lot of wires and monitors, but they are planning to slowly remove them over the next 24-48 hours. Throughout the night, they are going to wean him off of his breathing machine and hopefully by tomorrow morning he will be able to breathe on his own. 

So how did the Surgery go? 

Really well. The surgeon said his VSD was very large but they were able to patch it without any issues AND  found nothing wrong with his valves. (YAY!) He will have an awesome battle scar down the length of his chest to show off to all of his friends someday!

And with that, Mom and Dad are signing off for the night after a VERY long day. 

And now we wait...

After a long morning with a hungry baby, he was taken back to the OR about 1:45. We just got our first update from the nurses. All of his lines are in place and they are beginning the procedure. 

Here are a few cute baby pics while we wait. 

4 Months Old!

Hey everybody!

I am 4 months old today! I am 9 pounds and 23 inches long. I like snuggles and my toy fish at Sissy's house. I'm finally starting to tolerate bath time, and I am getting good at going to bed at a decent time. 

Before I forget...I have to tell you about my brother, Rider. He's pretty cool, but he has his jealous moments...

That tie... 😍

Ok.. Enough of this

Eyyyy... 😉

Until next time!

-J

Welcome!

Hi Everyone!

Thanks for following us to our new blogging home! We will be posting updates about everything going on next week here. If you enter your email address on the side panel to the right, you will be notified when there are new posts.

Talk to you soon,
A, L, & J

Normal

I have been moved to write this update several times over the last couple of months, but I haven’t been able to actually sit down and do it. So what stopped me?

Many of you have told me you were impressed by how positive I was in the first few posts. The truth is I haven’t always felt positive over the last few months. Having James home from the hospital by myself, having Alex back at work full time, it was hard. There is no other way to describe it. 

I have spent the past 3 months trying to find this mysterious thing commonly referred to as “normal”. I’ve found myself hearing/using that word a LOT lately.

Doctor XYZ: “What does a normal day look like from James”
Therapist: “The normal range for X developmental milestone is….”
Me: “How is that different from a normal baby…?””
etc.

What I have to keep reminding myself is that “normal” doesn’t exist. James is writing his own story. Yes, we can work to get him on a schedule. Yes, there will be days that are more typical than others. But expending energy trying to figure out how he compares to “normal” is a waste of time and could be a major point of stress if I let it be.

So what have we been up to?

Over the past 13 Weeks, we have gone to 12 doctors’ appointments, and had 12 therapist visits. We will average 1 appointment a week with various specialists through his first year. At that point, hopefully, we will be able to go longer in between visits.

Why so many appointments?

Some were typical pediatrician appointments, some were following up from his hospital stay, some were introductory to help us understand his diagnosis, and some were to prepare us for his upcoming heart surgery.

When is he having his heart surgery?

This is the (late) update that is going to get me in the most trouble with the public… James is having his heart surgery next Tuesday(1/19). We found out the week before Christmas that the cardiologist wanted to move ahead with the surgery earlier than expected. Everything is fine, but at the slow rate that he is growing, they feel it would be more beneficial to go ahead and fix his heart now rather than wait.

Why is he having surgery?

James has what is called a Large VSD (Ventricular Septal Defect).For those of you who know someone with this defect, it is fairly common. His specific hole is not correcting itself like some others may have, and that is why we are having it surgically closed.

You can read more about VSD  here.

http://healthlibrary.epnet.com/GetContent.aspx?token=83ee77b6-5d7c-451c-b269-7f0bab6eb1f5&chunkiid=223520

We appreciate all of the support and kind words from all of you over the past several months. Keep the prayers and good thoughts coming! I truly believe that they are helping.

Packing our bags

Well unless something goes very wrong, today SHOULD be discharge day! We've done all of our homework and passed all of our tests including the final exam (spending the night at the hospital with no monitors and minimal help from the nurses). James is 20 days old today, and he has spent 19 of them in a hospital. It's time to go home. 


Watch out world, James Alexander Descoteaux is almost free!

The Hungry Games: Mocking-James

This week we have had one goal: Make sure James is eating enough. 

James got to start eating Saturday afternoon. It was a tiny amount (10mL) just to make sure he could tolerate milk in his tummy. He did really well with small amounts, so Monday evening they started upping the minimum amount he was expected to eat. The plan was to add 10 mL at every other feeding until he reached 50 mL. He was doing well and the doctors thought he might be able to go home by mid week. That was until he was expected to eat more than 35 mL. Any more than that, and he was just too tired to finish eating. 


At that point on Tuesday morning, his doctor ordered an NG feeding tube to be put in so they could give him the remainder of his meals through the tube. For those of you who aren't familiar with a NG tube, it is basically a tube that is inserted in his nose and runs down to his stomach. 


At that point it felt like we had taken a couple of steps backward. He was doing so well. He was off of the oxygen machine, and they had taken one of his IV's out, but now we had to be on a feeding tube... When I think of a feeding tube, I think of someone who is really sick, and James looked great! The only problem was that he wasn't eating enough. 


He spent all day Tuesday and Wednesday taking partial amounts from the bottle, but needing the tube to finish his meals. So, It didn't look like we would be making it home mid-week as planned. 


Thursday morning his doctor told me we had a couple of options. IF James looked like he wasn't going to get the hang of eating well, we MIGHT have to surgically insert a tube into his stomach. In that case he would have a port in his abdomen where we would manually give him the remainder of his meals just like we were doing with the NG tube. However, since we live so close to the hospital, we had the option of going home with the NG tube still in place. It would require that Alex and I learn to place, pull, and check the placement of the tube, but it would be easier and less invasive than the G tube. If we chose to learn how to use the tube, we would be able to go home this coming weekend.


So, that's what we decided to do. Alex and I have been thoroughly trained on how to use the tube. And while it's not ideal, I feel confident that we can place, pull, and do any other required maintenance on his feeding tube. 

.............................................................


It is now Friday evening, and it doesn't look like we are going home this weekend. 


Last night I was staring to feel a little uneasy about coming home so soon. I was worried that we would get him home with his feeding tube, and he still wouldn't know how to eat properly. It is common for kids with Down's syndrome to have feeding issues, and I was worried that if we didn't try a little harder to get him to eat in the hospital that we would be stuck using a feeding tube for a very long time. 


I talked to our nurse and his doctor this morning about my concerns, and they agreed that it might be best to slow down his discharge plans. Today, we spent some time with one of the speech and feeding therapists. She helped us make sure he was using the right size bottle nipple, and we experimented with different holding positions to keep him awake longer during feedings. 


So, now we are expected to be at the hospital for a few more days. Even though we are REALLY excited about the idea of having home home soon, I am glad that we are giving him a chance to learn to eat without his tube. 


To make staying at the hospital a little more comfortable, he was given a little room upgrade today. Our new favorite nurse, Lauren, brought him a crib style bed (since he no longer needs to be on the warming bed) and a bouncy seat! I'm sure he'll love having something fun to look at and will love getting to spend sometime out of bed in his new seat.

Baby Steps

Today was a good day. 


When I got to the hospital this morning, James was WIDE awake and acting a little "hangry". (Who could blame him? He hadn't eaten since Monday afternoon!) During rounds just an hour earlier his doctor decided to take him off of the oxygen machine, and had one of his IV's taken out. But the best news of all... He was going to get to try to eat today! 


About 11 this morning, his nurse started getting him ready to eat, and by 2 I got to give him his first bottle. He has since had a second bottle, and seems to be tolerating both of them well.


Now that he's got his bowels working properly, James is not wasting anytime with his recovery. He wants to eat, sleep, poop, and pee just like a healthy baby his age should. He seems bound and determined to get home as soon as possible. He was only home for 23 hours before all of this, so he never had a chance to unpack his bags and settle in. 


As for mom and dad, we are relieved to have gotten over this first hurdle. Everyday he gets a little better, and for that we are extremely grateful.

The first week: We make plans and God laughs

Our precious baby James turned one week old yesterday. We celebrated with his grandparents, his Aunt, and a couple of close friends in the OR Waiting room at Cooks Children's hospital. 


James was born on Thursday, September 17th, at 8:07 pm. Mom and baby came out of the C-section looking great. James got to meet his family, and then he, Mom, and Dad settled in for their first night in the hospital. 


The first doctor to walk in our room the next morning was the hospital pediatrician. He was there to let us know that he believed James showed signs of Down syndrome, and wanted our consent to send some blood off for genetic testing.


In that moment I was barely awake, and didn't know what to make of what he was saying. Down syndrome?!? Seriously?!? Surely this guy was wrong. My baby was perfect. Alex and I were worried that the test might come back positive, but we were just sure that the pediatrician was being overly cautious. Surely we had nothing to worry about. We got through the rest of our hospital stay, and headed home Sunday afternoon. 


Monday morning I called and scheduled all of our follow up appointments. His pediatrician wanted to see him that afternoon, so we packed the diaper bag and set out for his first outing. We were only going to be gone for an hour, so we packed lightly. 


All snuggled up in an adorable outfit, we headed off to the doctor. We were taken back to a room pretty quickly, and I started filling out a mountain of paper work while Alex helped the nurse check James' vital signs. The doctor walked in, introduced herself, and that is the moment that our world completely changed. 




The crazy hospital pediatrician was right. The test was positive. James had Down Syndrome. 


I was completely devastated and overwhelmed by the number of questions I had swimming around in my head. Will he stick out at school? Will he be able to make friends? Will he be made fun of? Will he ever be independent? Will he have to live with us for the rest of his life? How do I raise a special needs child? Can we do this? Where do we start? What do we do now?


I was trying my best to silence the questions so I could listen to what his doctor was saying, but it was really hard to concentrate. I tuned back in when Alex started asking questions. Apparently the doctor had been giving us a list of basic things to watch in newborns. She was saying that we needed to go to the emergency room if his temperature ever was higher than 100.4 or lower than 97.6. Alex pointed out that when the nurse took James's vitals, his temperature was 97.5. Dr Wallace got out her thermometer and said we better double check his temp. This time it was 97.4. 


I was already a mess, but that is when the bad news really started spiraling out of control. After several minutes of trying to raise his temperature, it only continued to drop. We were told that the next step was to take him to the Cooks Children's emergency room, but that they didn't suggest that we take him ourselves. The ambulance was on its way to transport us. 


... Ok wait a minute... We just came here for a quick check up. Now we are leaving in an ambulance?! This can't be real... People have normal healthy babies everyday. What were we doing wrong? 


The transport team showed up. They checked his vitals again, and took him in the hall to load him into a warmer while Alex and I signed the first of many consent forms and gathered his things. I stepped out in the hall and saw him hooked up to several monitors and strapped into the warmer. It was hard to watch. How had we gone from having a happy healthy baby to this? 



Sometime during the trip to the hospital, it was decided that James would be admitted directly into the NICU. We were skipping the emergency room entirely. We spent the next several hours running tests and waiting on the results. They left no stone (or organ) un-turned. He was given an entire work up from head to toe, and they were checking specifically for Down Syndrome related complications. By that evening it was determined that he most likely had a disease called Hirschsprung's disease (a defect in his colon) and a hole between the left and right chambers of his heart. James was 4 days old, And it looked like he would be facing two major surgeries. 


The next morning we had a plan. We were going to start by fixing his colon. That surgery would take place within the next 48 hours. We were going to continue to monitor his heart, but ideally they wanted to wait until he was at least 4 months old to perform the procedure to close that hole. 


After a couple of days spent making sure that the Hirschsprung's diagnosis was correct and evaluating the extent of the problem, James had the surgery to fix his colon. The surgery went really well, and he is currently resting and recovering. If all goes well over the next 48-72 hours, he should be able to start feeding. 


Alex and I are extremely grateful for all of the love and support we have received so far. We still have a long way to go, but James is proving to be strong and resilient. 

We will do our best to keep this blog up to date with his condition for anyone that wants to follow along as we are introduced to our new reality. 



P.S. For any of you that are avid "googlers", like me, and want to do some research on James' condition, I highly suggest you start by using the resources on the Cooks Children's website. There are a lot of scary, non-factual websites out there.