Big Brothers

This is a week overdue, but we wanted to let everyone know the fantastic news! On December 2nd at 4:12 am we welcomed Katelyn Samantha Douglas into our family! She weighed 6 lbs 3 oz and measured 19 1/4 inches long! She is a great addition to our family!

The boys are adjusting pretty well to having Katelyn with us! Bryce, of course loves to play the tough boy and says all kinds of things letting us know he is not happy about having a sister, but then randomly asks to hold her often! Ethan thinks she is too loud when she cries, but gets concerned at the same time! He always has to kiss her before he goes to bed! They are both great big brothers!

Back to school and an Ethan update...

Wow! I feel old! School started for us here in Michigan yesterday and I have a 4th grader and a preschooler! Really? A 4th grader?! Sometimes I wish I could slow time down just a bit!

Bryce was not excited at all about starting school, though Weylin and I both really think he was ready to! It has been a hard adjustment for him actually having a structured bedtime now, but he will deal and get used to it! He also didn’t want to go to school because he says he has a “mean” teacher! He thought this before even meeting her because she used to be in the military. I think I like her already! I don’t know why, but they are even learning some German right now. One of Bryce’s biggest complaints is that they have to read a new biography every week and then report on it. I think he just doesn’t like not having a choice in what he reads! That’s what home is for anyway! All in all, I think he likes it more than he lets on. The new teacher with a new set of rules will just take some time to get used to!

Ethan also is going to school! He will be going to preschool 5 days a week to a PPI classroom. The first day was a little rough for both Ethan and I! We both cried a little as the bus pulled away from the house, but we quickly got over it! The only way that Weylin and I would allow Ethan to go to school is if his nurse could go with him, so it was worked out that way! She rides the bus with him to and from school and is with him in the classroom. Just so he doesn’t get completely gipped on having the whole preschool experience, his nurse is just like another helper in the classroom and is not completely tied to his side. In going to school, Ethan will receive some PT, OT, and speech therapy at school. It seems very odd to not go to outpatient PT on Wednesdays since we have been going for a couple years. However, I have to say the time off is so nice—sorry Dawn!

Healthwise, Ethan is doing so well! You cannot tell that he just had open heart surgery about 2 ½ weeks ago, other than the steri-strips on his chest! We went to Vent Clinic today and he was entertaining as ever! Weylin said he wonders what people think when they walk by our room and we are all laughing with the doctor! Since Ethan has had the surgery, we have just left him on the higher vent settings while sleeping and really haven’t pushed him. Today, we got the orders to go ahead and start weaning the vent again. We are going to start tonight by just taking away the back-up breath rate on the vent and will leave it like this for two weeks. Assuming he tolerates this, which we don’t have any doubt he will, we will just take him off the vent and let him go for as long as he can! The team doesn’t think he needs to be completely weaned down like he was before. Ethan also got another trach cap at clinic and wore it all day long without any problems! He even napped in the van with it on! Just the thought that there may be a light at the end of the tunnel is so exciting! It is still quite a way off, but we can see it! Oh, and we hope to within the next couple weeks start weaning Ethan’s Lasix! I think he is ready for that too! We just have to take it slowly since that is what his body always tells us, but the vent team is great about that and setting up a good slow schedule!

Looooong day...

I think today has given me a new meaning for a long day! Weylin and I have been up since 4 am, and I don’t think either one of us got very much sleep last night! I am just going to give the nitty gritty so that we can head to bed soon!

Ethan did very well through the surgery. Like I said before, the surgery went just as the surgeon had hoped. There was a possibility that he would need some medication to keep his blood pressure up, but so far he hasn’t needed any! That is great news! He also got some blood to help boost his recovery, but it looks like there is a possibility he may need more. His last blood draw showed that his levels may be dropping a little bit. That could also be from all of the IV fluids he got throughout surgery. When we left tonight, there was no plan for sure. Ethan has one incision down the middle of his chest and a chest tube just below his incision. He has all kinds of wires and IV lines—an arterial line they are using to monitor his blood pressure, a couple IVs in his feet, and one in his chest just below his collar bone. He also has some pacer wires coming out of his chest. They put those in just in case he needs them since the surgeon really messed with his heart! So far, so good! He hasn’t needed anything from the pacer wires and his heart has stayed in a nice normal rhythm!

As I predicted, pain has been Ethan’s biggest problem. They started him out on a Morphine drip, but really the amount he was getting was absolutely nothing compared to what he got while in the NICU as an infant for 5 straight months! We pushed all day to get the staff to listen to us, starting in the morning even before surgery. Finally at shift change tonight Ethan got his Dilaudid and has actually been resting comfortably ever since. It is very clear that his body is tired and just needs the rest for tonight! The surgeon was hoping to have him off the vent by today—HAAAAAA! She seriously underestimates our Ethan! Until his pain is under control and we get some of the extra fluid off (via Lasix) he will still be on the vent! We are completely fine with that, especially while he heals!

Our huge news!

Since I have been such a bad blog slacker, I haven't even written anything about how we are expecting a new baby in our house at the beginning of December! This pregnancy has been a hard one mostly based on how nauseous I felt for so long. However, we are nearly halfway through the pregnancy already and the nausea has improved! The ultrasound was weighing heavily on our minds, since when we had Ethan's at 20 weeks he was diagnosed with the CDH. That kind of event just changes everything! We are so pleased to announce that our baby is healthy, happy, and active! And oh yeah, it's a GIRL!!!!!!! We would have been equally as happy if it was a boy, but it's kind of nice to change things up a little! At least I won't be so outnumbered in a testosterone dominant house! Her name is yet to be determined, and we might just keep it a secret until she makes her appearance in the world. Stay tuned!!

Trying to turn a new leaf

I am going to try to keep up with the blog now.....HAHAHA!!! There has been a lot happening in the last couple months and I thought to myself, "I should really write this on the blog!" Have you seen how much has made it here? Yeah, none of it! I even got a new camera for Christmas that I promised myself I would be very conscious with and take more pictures. I have done this halfway, but usually it helps to download the pictures to the computer so I can share those too! One day, I will stop slacking and update about my beautiful family I have!

My Manic Monday...

For those of you who follow me on facebook, you know that yesterday wasn't a very good day for me. There are just times that life just keeps handing me trial after trial and I just feel completely overwhelmed! This is one of those times.

Ethan has been sick for the last week or so. We have spent a lot of time at the doctor's office and even in the ER. I spend a lot of time worrying about him because there are so many little illnesses he could catch that could easily become very serious for him. So much is out of my control, but I have a hard time giving up control! I am just like that!

Then on top of all this, yesterday I went for a return visit to a headache specialist. I have been battling migraines for a while, but they have intensified in the last 6 months or so. He sent me for an MRI a couple weeks ago and I finally got the results yesterday. According to the report, it appears that there may be a growth on my pituitary gland. Right now it is very small, but just the fact that it is there scares me to death. Worrying isn't going to do me much good, I know, but how can you not worry when there is something in your head that is not supposed to be! I am being sent to get some blood drawn and will probably need another MRI in 6 months to watch this "thing." I am really trying to cope with this and trying to learn from all of the trials I have been presented with lately. Let's just say that I have A LOT to learn yet!

Pardon the sentimentality

Wow! My baby is three years old today! OK, I guess he is my toddler now! I am having a hard time with Ethan turning three and I don’t know why! I can so clearly remember Ethan’s birth and the whole day following his birth. I don’t think that I have ever cried so much in one entire day, other than possibly the day we learned of his CDH birth defect. I remember being so afraid to go to sleep that night of January 12, 2007 because I thought my eyes would seriously swell shut! You just never forget having a member of the NICU staff telling you that your child is unstable and he is heading down the road to needing ECMO, which is the absolute last chance for saving his life.

This January 12, 2010, is certainly a great day of celebration for our family! We are at home and we are celebrating Ethan’s birthday as a family! The odds of survival for CDH are 50/50, and Ethan has been blessed to be one of the 50% who has beaten this awful birth defect. We have been extremely blessed to have him be a part of our family. This precious spirit from our Heavenly Father has taught us more than we could have ever expected to learn from such a young child. I know that we have so much more to learn from Ethan, but I am very slow sometimes and need a 4x4 to hit me in the head with what I need to learn, so I am still waiting for that! For some reason, our Heavenly Father has seen fit to bless our family with such a special little boy and I hope that we can live up to His expectations! We are certainly trying our best!

So Ethan is three years old and what is he doing? I personally think that as far behind as he has always been developmentally, he is doing fantastic! He is walking, and even attempting to run! Heaven help us when he gets the hang of that! Ethan is doing great with his fine and gross motor skills and there has been talk of a short break from outpatient OT, and possibly PT too, at some time in the near future. He still has some sensory issues, but is greatly improved from where he was even just 6 months ago. He will sometimes willingly paint with his hands and today he was playing with a sticky rice krispie treat! His lack of eating is still the biggest issue, but that will come sometime. He actually grabbed Bryce’s spoon yesterday with a little bit of yogurt on it and ate some without gagging. This was HUGE! And talking…he never stops unless he is sleeping! His new favorite phrases are “What you doooo-in?” and “I love it!” and he is the most polite toddler you have ever met! Ethan even throws age appropriate tantrums too! Why are we so happy about this? Once you have seen your baby lie in a hospital bed for nearly the first 8 months of his life, all you want for him is to have these “normal” experiences!

I cannot end this post without thanking every single one of you who has helped us in one way or another along our journey with Ethan! There are so many of you, that I refuse to even begin naming names! I would for sure leave people out! So, thank you to EVERYONE! You have helped in more ways than you even know! We are so blessed beyond our wildest dreams and we would not be where we are today without you!