Eden's Baby Blessing

On November 29th Brad was able to administer Eden's baby blessing. We got some great pictures, we were surrounded by loving family, and Brad gave Eden an amazing blessing.

Here we are getting Eden dressed and ready in her beautiful blessing dress.


I love my family more than words can explain.


Eden has the BEST grandparents on both sides.


We were so fortunate that my brother Michael was able to be there and stand in on the blessing. This was his last visit home before leaving to Afghanistan.


Here's the group after the meeting. Unfortunately Greg's family had to leave right after Sacrament meeting and weren't able to be in this photo.


I was able to get one with Greg and his family before we left to church though.


Thank you to all our family who were there with us (especially those who traveled in from out of state) to celebrate Eden and the blessing she is in our lives. We love you all!

Brad did an amazing job with her blessing, and is such a wonderful daddy!

Life in the past week

She is just so much fun, that's all I can say.


Today I was feeding Eden and she was probably only about half way done when the phone rang, so I just layed her down on the rug to jump up and grab it really quickly. I think I was only gone about two minutes tops but by the time I came back she was totally asleep so I just layed a blanket over her and left her there for a little nap. Is that mean? :o)


Every day we have to brush her teeth... just kidding she doesn't have any teeth (that would be a little freaky). Brad is actually brushing some of the thrush off her tonge. Gross I know, but it helps and we are desperate to do anything that helps with this darn yeast!


She was a little sad the other night because we were trying to keep her awake until her next feeding so Brad entertained her with a little piano music.


Now that I am a homemaker, I am trying to work on my domestic skills (when I can actually get the time for extra things). I was pretty impressed with the cinammon rolls I made from scratch. I have never made anything like this before so it was a total gamble, but they turned out great (and huge!).


I love her gummy little smiles.


Her nurse was here on Monday and Eden had gained a few ounces (she was 9 lb 12 oz). She has another weigh-in tomorrow so hopefully she will continue to gain so that her pediatrician won't be concerned. So other than the thrush she is doing great!

Our little baby is 5 months old!

To celebrate this milestone we did a little photo shoot using a cool new feature I found on our camera. I have a feeling we will be doing lots more of these little photo shoots in the future. There were so many cute ones I couldn't pick out just a few, so I posted them all! I couldn't resist....












As of today she weighs 9 lb, 10 oz and is such a huge joy for us. We sure love this beautiful little girl.

Happy Halloween! and Other Random Updates...

That's right... our little goblin has a purple mouth again. Yes, we are still battling the never ending thrush *sigh*.


So the Halloween festivities began with carving the pumpkins.
Here are the carvers hard at work...



And here's the supervisor sleeping on the job...


We each got our own pumpkin - Eden's even complete with a trach and a purple mouth.


Eden didn't think it was very funny...


Then Brad had to carve one extra pumpkin as a tribute to one of his favorite movies...


Unfortunately we didn't have a costume for Eden this year, but she was still very festive in her Halloween attire, complete with Halloween socks from Jade.



So even though we weren't able to go out this year to all the fun parties because of our little pumpkin, we still had a very enjoyable Halloween at home with Eden and our great friends Chad, Annie and Lydia. This was the first year in many years that Brad and I have been home for the trick-or-treaters. We were prepared with lots of candy, but didn't actually get as many kids as we thought we would. Oh well, with our sugar eating habits, I'm sure that candy won't go to waste.

Other random updates:
Eden finally got to meet some of her cousins. Here's Jade, her only girl cousin on the Malarsie side.

Brody was also there to meet little Eden but I wasn't able to capture a picture with him. He definitely gave us a good laugh though when he first walked up to Eden and heard her breathing through the trach he said, "tissue, tissue." She definitely could have used a little suction, but he was right, it sounds just like she has a stuffy noise and needs a tissue! It was too cute.

Grandma and Eden taking a little cat nap...


Eden still loves her swing and hangs out in there quite a bit each day.


We went to the peditrician again last Thursday and unfortunately Eden didn't gain any weight in the week since we were there last - not even one single gram. The doctor was concerned so we are back to fortifying her milk to add extra calories. We have to go back again this coming Thursday for another weigh-in. Hopefully this time we will have some positive results so I don't have to go back in the following week!

Eden has some granulation tissue growing around her stoma (the hole where the trach goes in) and it's starting to get pretty big so we have to take her in to get that looked at again. So that means we will be taking our first trip back to the hospital this week to have an appointment with Eden's trach nurse. I'm not really looking forward to going back there. I guess part of me fears they won't let us leave again! :o)

Overall everything is going really well and I think we have adjusted nicely to having her home. She is still pretty unpredictable with her schedule everyday, but I think that's probably pretty normal with any new baby coming home. Each day she gets more fun though and she gives some pretty cute smiles these days. We just love her to pieces.

So here's one more picture to close out this post - just because it's cute.

Being Home is Wonderful!

It has been so nice being home and not having to go to the hospital! Surprisingly though, there are a few things I miss about it. One, the time I had to keep up with the blog. This has definitely become harder now that we are home. I have a hard time finding the time or desire to do such frivolous things now. :o) The second thing I miss is the high speed internet. I was definitely spoiled by how quickly I was able to upload pictures and do updates. Now I’m back home where a blog post seems to take WAY too long because our internet connection is oh so slow…

Eden seems to have adjusted nicely to being home. At times over the first day or two, it seemed like it was a little stressful for her though when it was really quiet. I find that she actually seems happier and sleeps better when I have some noise in the background. Fortunately, noise isn’t too hard to come by now that we have her breathing machines which I would rank pretty high on the sound scale of annoyance. It has been more of an adjustment for Brad and I to get used to NOT sleeping in peace and quiet. I think we both breathe a little sigh of relief when we turn her trach collar machine off and switch her over to the oxygen concentrator. The trach collar machine is the obnoxious one – it literally sounds like an air compressor on steroids or a small helicopter preparing for take-off. We are getting more and more used to it though.

Eden and I had our first outing on Thursday to visit her pediatrician and I have to be honest when I say it was a little overwhelming. It took forever just to get us both fed and ready to leave. The most stressful part of it all though was making sure I had everything I needed. I had to make sure the diaper bag was packed with the essentials that most moms must always have: diapers, wipes, extra outfit, extra blanket, pacifier, etc. but then on top of that I had to make sure I had all the necessary trach supplies and this is where it got stressful. You see, it’s not a big deal if you don’t have an extra diaper on hand, the baby can just suffer through the car ride home – but run out of suction catheters and you’re really in trouble! :o)

In addition to the normal mom bag supplies, I needed: an extra trach in both her current size and a size smaller, extra trach collar, split sponges, saline bullets, sterile water, suction catheters, suction machine, resuscitation bag (let’s hope we never need that, but I’ve been instructed to always have it on hand!), extra HME, a bulb syringe, and an extra oxygen tank. Whew… I think that’s everything. It was quite the production and I sure had my hands full walking into the doctor’s office!

Everything with Eden checked out ok though and she even gained a few more ounces since leaving the hospital. We have to go back for another weight check next week though – hopefully this time it will be a little easier since my bag is already packed. :o)

So overall it has definitely been an adjustment having her home, especially when it comes to sleeping. She is great and has gone as long as eight hours without waking up to eat, but I am still up a couple times in between to pump, suction her trach, and refill the water in her machine. It’s amazing what your body will adjust to though.

She is so much fun though and I wake up every morning to a new adventure. Every day I find myself staring at her in amazement because of the miracle she is. We are so fortunate to have her in our lives and so grateful that the Lord preserved her young life. I know that I will always have a special bond with her that I don’t think I will ever feel with anyone else because of what we went through together. I just can’t put into words how much I love this precious child of God.



She loves her little bear blanket.



She does the funniest things with her arms sometimes when she sleeps - like this for example:

It wasn't resting on anything, it was just totally suspended in the air! Such a cutie.

Take the Baby and Run!

Seriously - that's just what we did. As soon as they said we could go home we packed up immediately and headed for the door before they could change their minds! They were hesitant to say yes but really didn't have a good reason to say no! Our two nurses were so sweet and helpful in convincing the doctors that there was no reason we needed to stay another day. (We have decided our nurse Alana needs to be a lawyer because she definitely convinced the jury to buy her argument! :o) We owe her big time.)

So it came as a shock that they were really letting us go. I thought that at best we would be able to take her home mid week, but to our amazement we actually brought our baby home yesterday!

Here's the grand exit:







136 LONG days spent in the hospital... and now we are home.

When Eden was born I thought this day might never come. Once some time passed and things began to stabilize, I knew this day would come but couldn't imagine it because it always felt so distant. Yesterday the day finally came and we brought our little miracle home with us.

I finally didn't have to say goodnight and leave her in someone else's care. I said goodnight and quietly tip-toed just a few steps over to my own bed. It was more amazing and exciting than I was expecting. I had a hard time falling asleep last night because part of me felt like a child waiting for Christmas morning! :o)

This has been the most wonderful, stressful, happy and sad 136 days I've ever experienced. It was a crazy roller coaster ride, but one that taught me all about what is really important in life. There are so many things that I will never take for granted because of the lessons I learned with this journey.

I hope we are never given this type of trial again, but I am so grateful for all the many lessons I learned throughout these four and a half months.

I am so amazed by all the outpouring of love and support we have received. We are truly so blessed and this experience has helped me to realize that more than I would have ever expected. Words cannot express the gratitude we feel for all those who have helped us.

We are blessed to be in such an amazing ward and have been blown away by all the service we have received. I have never been in a position in which I felt I needed help, and I've never been the type to be good at asking for it when I do need it - so we are so grateful for the many members of our ward who helped feed and take care of us the whole entire time Eden was in the hospital. The service has been so amazing and it made the burden so much easier to bear.

Now I'm sitting here on the couch in my living room with my sweet baby lying beside me. I thought this day would never come. This whole experience has been so surreal and I think it's going to take a while for it to sink in that she is actually home with us now. I just keep staring at her in amazement because she is here. My baby really is home…

She is such a miracle and I feel so blessed that our loving Heavenly Father chose me to care for this amazing and strong baby girl. She has already changed my life, and my outlook on life, in such a positive way. Wow… I don’t have any other words to express how I feel right now – I’m just so extremely happy.

Our Purple Plum

Ok, I have to start this off by saying this looks much worse than it really was. Desperate times call for desperate measures and we are getting desperate to get rid of this persistent thrush she has in her mouth.

After receiving Nystatin in her mouth four times a day for almost two weeks without positive results, we had to turn to the olden day remedie - Gentian Violet. This stuff is crazy and they told us it would be messy so we prepared ahead of time to try to keep it as clean as possible. The stuff dies the skin, and basically anything it touches so we tried to keep her from drooling and getting freaky purple streaks down her chin. Considering the way it could have turned out, I think we did ok.

I don't think the stuff had much of a taste, she just didn't like the big coated sponge we stuck in her mouth. Poor baby...




This was on day two - as you can see it wears off pretty quickly...


We were told from the doctors that this stuff usually works the first time around, unfortunately she's got a stubborn case (as we know). Looks like she still has the thrush. Her tonge is still a little purple so they think it might still be working on it. The plan is to check it again tomorrow and if it still looks like it's there then she is going to have to get the sponge and purple dye again.

Oh man... all these interesting stories that keep coming along with this whole experience.



Over the past couple days Eden hasn't been eating quite as much as they would like her to. Unfortunately she also lost a little weight which is never a good thing when you're on the home stretch. I hope that she picks back up over the next couple days.

Right now they are saying that she can go home as soon as all her supplies and equipment arrive so we will just hope and pray that she starts eating more and gaining weight by the time that all gets here.

The roller coaster ride won't end until we are speeding away from this place with little Eden in the back seat!!