Happy 6 months Hunter

I love him more and more every day....

Today was a good day

I am feeling good today about everything lately. I know some days won't be like this but for now I am very happy. I know that saying "knowledge is power" is cliche but I think I totally believe it. I have been doing a lot of research all about tracheostomy's and what it is and how to care for it etc etc. The more I read the more I learn. I now "understand" when the doctor is explaining something because I have read about it now. Usually when a doctor is explaining something it goes in one ear and out the other. In general I think I have a good memory but for some reason medical stuff doesn't stick with me well. I partly think it's because my mind is wandering, thinking "I can't believe this, is everything going to be okay, what did that word she just say mean....etc etc". Thankfully though, Jeremy is very good at understanding and listening and remembering what the doctors are saying...without him, I'd be lost! Thanks Jeremy... I am continuing to learn so much about the surgery that Hunter will most likely require to fix his airway. It's quite fascinating that doctors can do all that they do.

This week we were able to clean Hunter's trach area, something we will be doing everyday now. It's a little scary but I know with time and practice we'll have it down in no time. I know Hunter will learn that we need to do this and hopefully it will just come second nature to him-and us. By the time we have it down pat, Hunter won't need his trach in anymore!

Thankful Thursday

I am thankful for many things....one of them being my beautiful baby, Hunter you are such a brave boy! Jeremy, thanks for being such a good support for me and being soooo good with Hunter. You are such a good Dad, it makes me so happy to see you interact so well with Hunter. He is very lucky to have a Dad like you.

Hunter did really well again today! We got some good training on how to care for his trach and how to clean it. We cleaned it while he had Hunter lay down on his back, needless to say Hunter didn't like laying on his back! He never has liked that, he always like to be on his tummy or sitting up. So he got pretty upset since we also had to hold him down with all his wiggling. Tomorrow when he clean up his neck area we are going to try and have him sit up. I think that will work much better...we'll see though. He also got a bath today, he LOVED his bath time. He was splashing his arms and legs, and having a good old time! We finally got to put him in some pj's too, which I like. Makes me feel a little more like we are at home....

smooches from hunter

I stayed home last night to get some needed rest while Jeremy took the "night shift" with Hunter. I had hoped for an uneventful night but Jeremy called me around 7:30am and told me Hunter gave him a couple scares early that morning. Jeremy woke up to Hunter's nurse yelling "I need help!" Words you don't want to hear while in the hospital, especially when it's your baby...Hunter was struggling breathing quite a bit, turns out the humidifier that is hooked up to his trach tube wasn't working properly, therefore not humidifying his new airway and causing mucus to build up. Normally just suctioning the airway would fix this but it took a little more suctioning and clean up of the area since the build up was more than normal. The nurses and Dr. determined it was a faulty humidifier part that caused it to stop working. They are not sure how long during the night the humidifier was not working properly. Needless to say, Jeremy was quite worried and thought I should come back to have a second pair of eyes watching little man. I hurried to the hospital, Hunter was fine and breathing normally at that point. I am pretty upset this happened with the faulty equipment, but I am thankful that it wasn't something with Hunter himself not breathing correctly.

Besides that little scare, the day has been quite uneventful. The main thing that has kept Jeremy and I busy is keeping Hunter from playing bumper cars with the rails of the crib. He gets up on all fours and since he doesn't have his balance mastered yet, he falls right into the railings and whatever else he feels like playing "crash test dummies" with! He does this ALL day! He is also teething, so he sucks/drools on anything he can get his hands on. It seemed like nothing would satisfy him, even his poor Sophie Giraffe teether (which he LOVES) wasn't working at this point. Hunter has never taken to a pacifier but Jeremy thought maybe let's try and see if he takes it. Now we had gone this long without him needing a pacifier and kind of liked that but at this point, we really needed him to calm down and rest so we thought okay let's try this. The nurse grabbed one for us and I put it in his mouth and he instantly calmed down, sucked away and drifted off to happy baby land dreams....zzzz zzzz zzzz. Nighty night sweet little boy...mommy and daddy love you....

Hunter got his other chest tube pulled out today!! That is such good news, he now can feel better with less tubes on him! He is eating every 3 hours, just like he does at home so that is good. He is giving us many more smiles, kind of makes Jeremy and I feel like he is telling us, "mom and dad, I'm going to be just fine!".  We are staying positive and going to educate ourselves with everything we can about kids with tracheostomy's. One of the nurses here even said she can get us in touch with other families in our area who have kids dealing with the same thing. I would love to get support from other local families, as I think they will be a great resource for us.

Hunter is continuing to improve! Other than being sore and of course some pain here and there he really is doing great! He is starting to act like our little Hunter again...We sang his favorite song today, "The wheels on the bus"  as well as read some of his books. He is got on all fours (a little wobbly of course)..I can tell he wants to crawl so bad...

nomz nomz nomz nomz.....

Yay!!! Hunter drank from his bottle with no problems today!!! We don't have to put the feeding tube back in! This was a big relief for Jeremy and I. One less tube on him is great!

A BIG thanks

For some reason my camera is not letting me take longer videos....I will try and fix that but for now here are a couple clips...I also wanted to tell everyone who is thinking and praying for Hunter, THANK YOU SO MUCH! It really means a lot to us to know that there are so many people our there that love him. For those of you that have not met him yet, I can't wait until you can. He is one cool baby...  ; )

I went and slept at home last night, but Jeremy stayed here with him and he said Hunter slept really well during the night. Hunter is doing good this morning...he is sitting in the chair with daddy and playing with a couple of his favorite toys. We even got a little smile out of him. It seems like he is in a small way getting used to having the trach in his neck. Hopefully he will take a bottle today and not have to have the feeding tube in anymore. I can only imagine how different it must feel for him to swallow now. He will get used to this new feeling but sooner than later I hope. I went and slept at home last night, but Jeremy stayed here with him and he said Hunter slept really well during the night.

This still feels unreal to me, I wish I could wake up from the bad dream. As I was getting ready to go back to the hospital this morning, I checked his crib hoping to see Hunter sleeping there...I knew he wouldn't be there, but at least for a few seconds while walking into his room I had a tiny hope he would be there. I know he will be there soon but not for a while.

I still feel bad sometimes, I fear, did we make the right decision? Should we have done something else? Was there something I could have done the prevent this? On the other hand I am thankful though, that we didn't have some scary episode where he got sick and couldn't breathe. I don't know what I would have done. So I guess this is a blessing in disguise because we now know what was causing his noisy breathing and we are working to fix it. I told Hunter when he grows up and is a big boy he will have quite a story to tell his friends. He'll even be able to show a few "battle scars".

Wide awake!

Sleepy boy

Big brave boy!

Yesterday we took Hunter to the UNM Children's Hospital for his Microlaryngoscopy and Bronchoscopy (BLM), the doctor was looking for something that was maybe blocking his airway causing the gurgling noises he makes (you can read more about this in previous posts from Dec. 2010). She thought she would find either a cyst or maybe a hemangioma and would just need to remove it. We waited it the waiting room and it had been past the 45 minute mark they said it should take...I know it always takes longer but still the not knowing what killing us! Finally the nurse came and said everything went well the doctor will be out in a minute to talk to you. So at that point we were quite relieved and just waited the additional maybe 10 minutes for her to come out. She told us that his airway was about 1/5 of what a baby his age should be. She had no idea how he was so happy and thriving so well with an airway so tiny. She told us part of the airway was webbed and she could cut it but then they run the risk of it it scarring over his airway. The other alternative is to do a tracheotomy that way he would have a secure place to breath out of and then at a later point figure a way to make his own airway bigger. This would put him in the hospital recovering for about 7-9 days. She doesn't know how long he would have the trach in, could be 6 months or up to a year or two. Either way the goal is to fix his airway(make it bigger somehow) and get the trach out. She told us this was going to be a long process.  We never imagined it was this big of a issue, we thought we there for a small procedure and he would be able to go home the same day or maybe overnight. We felt we had no option, but we still asked for a few minutes to think about it. I went into shock at first, not believing what I had just heard. What this real? How did this happen? Why my little boy? What did I do wrong?

After tears and talking for a while we gave them consent to do the put the trach in his neck. After she left the room, I felt terrible. I felt like I had just betrayed my little boy. He came to the hospital happy and calm, and is now on a operating table about to have a hole cut in his throat. The worst part is that you can't explain why this is happening to him. He was in there another hour I think when the doctor told us he did fine and once they get him over the to ICU and stable we can see him. After what seemed like eternity a nurse told us we could come on back. We were about to walk into the room and saw him obviously struggling on his bed with nurses and a doctor around him. We were told they were just having trouble getting him stable, and that we could stay or leave. We went back to the waiting room for almost an hour, so far that point was our lowest. I tried not to think the worst but not hearing anything make my mind go all over the place. It was heart wrenching. I wanted to see him so bad it was almost unbearable.

Finally, Jeremy went and asked a nurse if we could see him. They brought us back and we  got to see our baby. What a relief that was. To be honest I was scared to see him at first because I didn't want to see him with tubes everywhere in a hospital bed. Once I saw him though, the biggest sigh of relief came to me. His adorable tiny little face looked as gorgeous as ever. They explained to us that his lungs started to collapse after coming out of surgery and they had to put tubes in his chest. They think that after taking him off the ventilator in the OR and putting him on a new one in the ICU he probably got agitated and wasn't handling it well which caused his lungs to collapse.

Once some of the medicine was wearing off and he was waking up, his eyes opened and looked at us. I could tell he knew it was mommy and daddy. One of the hardest parts at that point was when he started to feel the pain again and he was crying but you can't hear him because of the trach, and I about died when a little tear rolled down his cheek. He just stared at me as if he was saying "mommy help, I hurt"...I felt so helpless for him, I wanted to switch places with him so bad it hurt. Later in the day he was getting fussy and we could tell his was feeling his pain pretty intensely, so the nurse gave him some fentanyl(a pain drug), within a few seconds he started to turn purple and bluish. The nurse immediately called for help and about 8 nurses and doctors rushed in. We stood outside the room. I thought this can't be happening, I was  about to lose it. Jeremy kept telling me it was okay, he's going to be fine. Within probably less than a minute, we saw him turn back to his normal color. They said he just had a bad reaction to the drug. They decided to keep him on Tylenol and morphine. He was calm and content quickly after. Wow, another scare like and I don't know what I will do.

Since then he has been a little trooper and is doing as good as can be expected. They want to slowly wean him off of meds. We tried to give him a bottle since he had not ate in quite a while, but the new feeling of swallowing was strange to him and he was having a hard time. So to get some food in his belly, he now has a feeding tube. We are going to try and give him a bottle again tomorrow so he can get that feeding tube out. He also had a x ray today and his lungs looked good. He will get another one tomorrow and if they still look good, most likely he gets the tubes out! 

We are hanging in there as well as can be expected. It's the hardest thing I have ever had to deal with in my life and I still think I am dreaming. I just can't wait to have Hunter back at home, sleeping in his own crib and enjoying life again. As hard as this is, on the flip side, if he didn't have this procedure, his airway would have been a ticking time bomb. If he were to get sick and his airway swell even a little bit, it could close it up. It would be very scary to have to call 911 for my little boy. He will still be able to crawl, and play and enjoy life, depending how long his trach is in, he may have a speech delay. However, he is so young and kids are so resilient, I know he will be just fine. By the time he's a little older and walking and talking, he won't even remember all this. So that makes me happy. Of course Jeremy and I will remember this forever....it's sure taught us in a short time how precious life is and to appreciate every single day. We love you Hunter, and we will all be in this together getting you feeling better in no time. You have soooooooo many family and friends that love you. 

Hunter before his surgery

Hunter resting after surgery

Oh and I forgot to mention the other day, we got our tickets to go home to Seattle!!! I am beyond excited! First off, all our friends and family get to meet Hunter and also we are finally traveling together! Usually when I go back home it's just me and Jeremy stays back. So we get a whole 9 days of vacation together!! It's not until mid March but hey that's just around the corner!!!

Bath time

Hunter had a good time in his new little ducky tub tonight...he was kicking his legs all over the place. He has never done that before, it was so cute!

Valentine's goody bags

Oh and here are the little Valentine's goody bags that Hunter handed out to everyone at his Valentine's playdate...I forgot to mention these on the an earlier post. The tags are from Etsy of course..my favorite! They're from a shop called ciaobambino, http://www.etsy.com/shop/ciaobambino love her stuff!

Early Valentine's for me! Yay!

Jeremy gave me my Valentine's gift early this year. I got a beautiful candle and some fun soaps from a couple of sellers on ETSY. He know I love handmade things, so he couldn't go wrong getting me something from there. The soaps had such yummy scents, and one even looks like a popsicle on a stick! How fun is that? Anyways, thank you Jeremy...love you tons!

Yep, I'm a Mom alright.

Boon Flair

It's so funny how a year ago I all I would want to go shopping for was a new purse or new makeup. Now when I shop, I can't help but look at all the baby stuff, even if I was just at the same store 2 days ago ie TARGET!!! Now I check out all the coolest baby stuff online and read the reviews on them etc etc. I mean, I wouldn't want to miss out on the latest and greatest new baby gadget would I? I don't want Hunter to miss out on something new and cool that all the cool babies have right? It's a little addicting, so I have to remember to stop and think before I just buy something for him, do I really need this? That being said there is something I really will need in the near future. I would like a high chair(using the Bumbo to feed Hunter right now). There are a million ones out there of course so I have been doing my research on those lately. I like the Boon Flair or the Graco Blossom. A few others too but those are my top ones. For now I will continue my hunt for the great high chair that will last us for a good long while!

Graco Blossom

Baby play date

Hunter had a fun little Valentine's play date....too bad every time I tried to take a picture he would roll over!!!!!

Frozen pops

After learning that Hunter likes popsicles ; ) hehe,  I decided to freeze some of his baby food in ice cube trays. Once they are frozen I can put a cube in his little food feeder and he can enjoy some yummy frozen fruit safetly!

Funny video taken tonight....

Lately I can tell Hunter has been wanting to crawl,  but of course, I am in no hurry for that!!! But at the same time, it's exciting seeing him more mobile and trying so hard to move around. He was moving more but by the time I got the camera ready he was about done with his "crawling"...Enjoy!

Baby food

I am going to try and be ambitious and start making some baby food for Hunter. I want to stick with organic foods so I went to Whole Foods the other day and got some Peas and Carrots. I also got some baby food freezer containers to keep them in. They are basically just glorified ice trays but I like that they have a lid on them. I still think I will buy baby food but I wanted to at least try making some. I will probably do half and half. I sure like the convenient packages that Plum Organics makes and I just got some made by Happy Baby Organics so hopefully Hunter will like those too. I will update once I have made some food!!

Yesterday I took Hunter to the Doctor for his cough and stuffy nose. I just wanted to make sure that's all it was. She said he has his 1st cold...poor guy. Luckily he is still is a great mood, but I can tell at times he is annoyed with his cough and snotty nose. So hopefully this cold will pass quickly so we can get out of the house and do something fun. I've been home last few days since it's freezing outside and I don't want him outside right now. He's been napping longer than usual, he's on his 2nd nap today at almost 2 hours long already. And the last 2 nights he's slept from about 11pm to 7:30am! Yay!! Thank you Hunter for letting me get some much needed consecutive sleep..

Good deals!!!!

I've mentioned Amazon Mom before on a previous post and I just wanted to give another tip on how to save even more. You may or may not know this but if you subscribe to Parenting magazine and American Baby magazine they offer either 20% on diaper and/or a $10.00 off coupon from the Amazon baby store! Amazon even lets you stack the coupons! I got 160 Seventh Generation diapers for $9.95 total! That's cheaper than buying a package of 30-35 diaper at say Target or Walmart. Parenting magazine has really cheap subscription rates I've seen as low as $2.00 in the magazine itself or $5.00 online. So even if you pay for the subscription it pays for itself right away and you get a cool magazine. The American Baby magazine subscription is free, just sign up online. I haven't got my first issue of my magazines yet and I happen to be at the Dr.'s today for Hunter's appointment and they have both those magazines there and so I just got the coupon codes there. Thank you Amazon for being so Mom friendly and helping out with this normally big expense!