Feelin' the Love

I have the best friends and neighbors ever. Who else could know what it's like to be bound to your house, not able to leave, and tending your kids 24/7, better than a mom? Who knows what will help keep you sane and connected to the outside world and entertained while inside your house, better than a mom? I feel unworthy to have been given one of these and am in awe of how many people really care at all. THANK YOU to all my friends and neighbors who are thinking about me. You've out-done yourselves. The gift was so over-the-top but oh-so-needed.Thank you for just "getting it" and understanding. I LOVE IT! (even though I feel a bit UN-tech savvy, this being my first real "tech-y gaget")

Also, thank you to everyone who has brought us dinner. It's the best thing in the world to have someone show up to your door with food. We've loved it everyone, so thank you!!

Here's the latest picture of Damon.

He's holding one of these:

a WubbaNub he got from one of his NICU nurses.

And last but not least, I had to throw in a pic of these two wild monkeys that have moved in since being home from the NICU. They're really cute, but bounce off the walls all day, every day!

That's the sound of sunshine comin' down

Is it mean of me to post pictures like this?
He's so freakin' cute when he's mad!

If you notice the yellowish tube coming from Damon's nose - that's his nasogastric tube, ng or feeding tube. He gets half of his feedings and important medication through it. Yesterday I had cleaned up his face some and redid his duo-derm (face stickers). The tube had come out about an inch or two and I didn't notice it when I re-taped him or until today.

Today Damon had his first visit with his pediatrician here in town. He agreed that I should undo the tape and push the tube back into it's place so we were sure to get food and meds down properly. I got home, fed him so he'd be a bit happier, and gently took off the duo-derm. He did not love this. He arched his back and screamed a lot. Before I knew it he snorted the whole tube out!

Let's go back to before we left the NICU- We had to replace his ng tube to "pass" going home. It freaked me out then and it still freaks me out now! I tried three times today after it came out and got the tube in, but was nervous that it was in his lungs and not down to his stomach. I called the neighbor girl to sit with my kids and visited his pediatrician again to have him check that it was in the right place. Thank goodness we live right down the street from the clinic! After the whole ordeal we got home I turned on pandora to chill and this was the song that come on....

Yup, I can chill to this.

We still have had an eventful evening - A good friend had pizza delivered to our house, which was like Christmas all over again for my kids. We also had a neighbor bring Buddy's (Italian resturant in town) over. Double the Italiano, yummo! While I was tending to Damon, Mason warmed up some pizza for Marissa on a picnic plate (the wooden basket looking plate stabilizer that you put a paper plate on) in the microwave. I thought there was a fire in the house from all the smoke...Never a dull moment these days, but always looking for the sunshine, shinin' down. :)

Broadhead NICU

We're home! Damon was able to come home with us on Friday evening from the NICU in Salt Lake. Sterling and I had to room-in with the baby Thursday night and take care of him to show that we actually could. At the time it felt like there was too much to remember and my brain was going to explode with information overload. But with some help from Damon's great nurses we somewhat know we're doing (somewhat) and are making it up as we go the rest of the time!

Damon with his night nurse Denise (holding him), and his day nurse Merideth. Seriously, the most wonderful two ladies. They were awesome with Damon and were angels to work with. What cool jobs they have!

Here is the Broadhead NICU.

A little make-shift from the original but it's functional.

Damon wears a feeding tube in his nose. He still is only able to eat 1/2 or a little more of his feeding through a bottle. It's getting better each day, but the rest of his feeding gets put in this bag and the blue pump pumps it through his tube straight to his stomach. We administer most of his medications through his tube as well.

Damon was sent home on a little oxygen. The cardiologist say it's such a little amount - like a whiff of air in and out of his lungs. He wears a probe on his foot that tracks his oxygen saturation and his heart rate. We turn the oxygen off a few times throughout the day because he just doesn't need it. It's like a security blanket really.

All of Damon's meds. To beef him up he takes a multi-vitamin, iron, bananas to thicken bottle feeds and milk fortification. If he is to have a surgery in 3-6 months he needs to be much bigger! To help his heart he is taking digoxin, furocemide, and a sodium supplement.  His meds/feeding schedule is ridiculous and I was nervous about figuring it out. Even after over 48 hours of doing it ourselves it has felt more like second nature.

Mason and Marissa have been so excited to have their little brother home. They've both asked me, first thing, if they could tickle Damon. My kids love tickles!

Life at home has been so much more smooth than at the hospital, obviously I would think. We've all been adjusting so well, like having a baby in the house is nothing new! It goes to show how Damon was supposed to be here with his family and how blessed we are with this new adjustment. We love him bunches!

Best. News. Ever.

First off, happy birthday to my beautiful mother today! I love you!

Also, go me for this being the 6th day in two weeks that I've pumped some iron or gotten down with some cardio. It feels awesome to be in the gym again. It does NOT feel awesome for my legs to kill when I sit on the toilet though... it will take time, lots and lots of time to get any sort of body back. Ouch!

Sterling and I made a decision late Saturday night that I should come home to Pocatello for the week with Mason and Marissa and that he should take the week off and stay with Damon in SLC. Trust me. Hard decision. I wanted to stay and be mommy to baby D but honestly, three weeks seemed to be my breaking point. I needed a change of scenery and needed to feel something of what normal life was like.

I wasn't going to feel guilty for needing a break either, because to be a good care giver and mother to kids, you just need a break once in a while. It's called loving yourself and taking care of you before you can truly love and care for others. Yes, this is something I have learned and I fully believe it is a secret weapon and "trick" for making it all work. There is no guilt in that, mothers out there!

I thought maybe I'd stay in Idaho until this Wednesday or Thursday knowing myself and that I just couldn't stay away. And it turns out, that may just be the plan...

Sterling texted me at 5pm this evening telling me that we can bring the baby home this weekend!!

It was perfect timing that the cardiologist team came for rounds on Damon and that Sterling was there to ask questions, and then that the cardio team stuck around to clear up questions with the attending doctor who was also right there to start his rounds. Both teams of doctors there at the same time? Miracles! I wouldn't have been so clued in to know what to ask like Sterling was, so what a blessing he was there to figure this all out.

Damon will come home with oxygen monitors, feeding tubes...all the equipment that will help him survive. The doctors assessed how he was doing and made sure all his ducks were in a row to head home. They say he passed and we are free to take him, mainly based on the fact that Damon's chromosome issue will make for slow learning on how to eat. It is either slowly teaching him at the NICU or here at home. All other issues like his heart and clubbed feet will be followed up in future appointments.

Big news, right? I feel grateful for Sterling tonight who took work off to help me care for Damon this week and who knew just what to say to assure the doctors that we could take this on at home, and not in the NICU hours away.

Damon, today after he ate a bottle thickened with bananas.
His eyes tell it all  - he's wondering what in the world
made his bottle taste that good!

I am grateful for prayer and I know it works! Damon wouldn't be coming home and be doing so well without prayers and support from you. Thank you everyone!

Balancing Act

Damon had another echo on Tuesday. A cardio echogram is essentially a detailed ultrasound on his heart. It lasts about 30 minutes. I took note of two things: sugar water is yummy to my baby and helps to keep screaming to a minimum, and I kept seeing images other than his heart in the image on the screen. True story, I saw a bunny, a barking dog, and a troll in the shape of the chambers of his heart. It was freaky and weird.

There has been some talk that we'd be able to take Damon home with him on a low flow of oxygen and a feeding or two taken in through a tube. The cardiologists put that nonsense to a stop, saying Damon needed to be completely off oxygen before he goes home. It would be more of a risk to have the large VSD like he does get larger while on oxygen at home. Gave a huge sigh of relief after hearing this. I'm anxious to take him home as it is, let alone with all this life support going on.

 

Damon has been eating more volume through a bottle this week. He ate a whopping 21 ml with his dad yesterday and 27ml today. YES! This well more than half of his every 3 hour feeding. At this rate, if he is able to eat well and put on more weight, but then be able to be weaned off this oxygen, the only thing holding him at the NICU is this heart condition. The cardiologists will be making the final call.

I had some good friends come down from Poky on Thursday. They saw the baby and then kidnapped me to go out to lunch and have some much needed girl time. Best. Friends. Ever. Thank you Nicole and Tonya!

This is random, but I've been "seeing" things, and I swear I saw Rob Pattensen's doppelganger. He was valeting my car at the hospital the other night. I've seen this guy twice now and may have to sneak a pic of him. He's like a baby-faced Edward and I wonder if he gets that, like all the time. :)

Sterling, Mason and Marissa came to Salt Lake Friday after being in Poky all week. Gosh I missed them. It's hard to get back into our groove. Not the kids so much, but Sterling and I. I equate it a little to when he comes back from deployments and trainings with the Air Force. The kids and I have a routine and a way that we deal with life while he's gone. It was like I switched places this week and I had to fit back into their routine and day-to-day. I'm having a harder time balancing my emotions and nurturing instincts! I want to be everything to everyone and it's nearly impossible. I am grateful for Sterling today though, who is up at the hospital right now with Damon while I can take a break and hang with the other kiddos. My hubby picks up the slack and helps keep things in balance when I need it. We're good at tag-teaming it.

So yes, please ask about Damon and we'll try to answer your questions. Thanks for all your love and support!

New title? Not so fast...

I opened our blog today and read the title. The part about "us, in real life." I got to thinking that the picture behind the title doesn't really match "us, in real life". Our life is not as peachy and perfect as that picture looks. In fact, I've thought I needed to change the picture to depict something less perfect because that would describe our life more in general. Not to discredit my super-great family, but we are a normal, disfunctional family. Meaning we have our issues, our squawbles and arugments, our melt-downs. This is our life and I accept that. Just like I realize that you all don't live a peachy, cotton candy kind of life either. Life is not supposed to be that way.
With that being said I know that we can have peace and joy and even perfect moments in our lives. And I do know that my husband and kids help bring that peace and joy and near perfection. This is because we are a forever family. It is the most important thing to me. Especially right now.

Last week my husband was away from the kids and I, and this week I am away from the kids and hubby, and not because we want it this way, but because of a delicate, tender infant who needs my attention to thrive in his new exsisence. I am torn in a million pieces going back and forth on who needs me more - the kids, my husband, the baby...me, myself and I?

And so today...today was not perfect. I was moody and a bit ticked off that we were splitting up today. I wanted my husband to be there with me while I fed the baby at the hospital. I wanted my kids to not have to wait in the waiting room but finally get to see their baby brother. I wanted to bring the baby and we all drive home together today. I wanted to not get emotional when the nurse asked how my day was going, or to cry so hard when she left while I hugged my baby close and he snuggled so perfectly on my neck. I wanted to feel like in "real life" none of this could really be happening, because "us, in real life" isn't normally like this.

And then I started feeling even more selfish, thinking that I wanted my life back, life before I was pregnant. Before I was pregnant I wasn't feeling depressed or wasn't stressed out about having a child with special needs, not to mention all of the attention a newborn child requires.

All of these thoughts have flooded my mind today, and all the while I keep thinking of our Heavenly Father, granting us the blessings we need to help make this difficult time easier. He is still watching out for us, and hasn't forgotten about us, or the sweet spirit he has sent down to join our family.

As an update on Damon, he is doing so well! He is eating more from a bottle and having less or no residuals between feedings. His oxygen intake is lower and will most likely go down from a high flow to a normal flow after this week's echo on his heart. Damon isn't getting as worked up about things like his cares and checks and will wait patiently without screaming and listen to me talk while his food is warming. You'd be able to tell that he's getting older and more used to his surroundings. It's been a joy to watch him develop in the past two weeks.

Each milestone, as small as it has been, has felt like giant leaps of accomplishment and I couldn't be prouder of this little fighter of mine. The nurses and resident doctors seem to think it won't be much longer that he is in the NICU. But only time will tell.

Thank goodness for wonderful family and friends who have been picking up the slack. Thank goodness for a supportive husband and great kids. Thank goodness for a self-awarness of my own feelings. The blessings are rolling in and our experiences are making us a stronger. And for now, this is us, in real life.

Our Newest Addition

Not many have been introduced in person to our new baby boy:

Damon Sterling Broadhead

He's in the NICU at University Hospital in SLC, UT. He was born on December 27th at 2:15 AM, was 4 lbs 11 oz and was 16 1/4 inches.

Damon has been a champ during his first week of life. It's been emotional and spiritual and just plain exhausting for us. Damon has a few different issues going on that requires him to stay in the NICU:

1) Hole in the heart, or a VSD, which has caused his heart to be large and to pump poorly. He is on a drug called digoxin to help his heart pump and function better. He will most likely need to have a surgery to repair the hole after he has gained some more weight, somewhere around 6 months.
2) Clubbed feet. His are a bit more severe but they will still do treatment of progressive casting.
3) High flow of oxygen. Staying on a higher level could cause his VSD to become larger so the docs are really trying to get him to function on a normal flow. At this point his little body cannot function well on a lower flow though.
4) Feedings. These are difficult for him. He hasn't orientated himself to breast or bottle very well even after a week and gets the majority of his feedings through a tube. He will get upset easily and sometimes is hard to console.
5) Chromosome 15q deletion. This happened spontaneously when he was created. He doesn't have facial deformities, but his heart issue and his clubbed feet could be caused from the deletion. Feedings and getting worked up easily are also most likely due to this issue. We are awaiting results from a micro array test to get more information and maybe know more to help us as he develops.  



Jan 5, 2012 - my original due date
9 days old

This is about it for now. Please ask any questions you have. I feel like we've talked to numbers of doctors and have gotten tons of info in the past week. It's a little difficult to keep it all straight and for it all to make sense. We've been so blessed with this little one in our family and realize that we cannot know all of the plan at this point, as nice as that would be. Just taking it in one day at a time, whew!