The procedure went well

We are so grateful for all the prayers for Eden, especially yesterday as she went through her procedure. Everything went really well and we could not feel more grateful.

I was a little worried though as the day began because it was off to a rough start even before getting to the hospital. Brad and I left the house yesterday morning in separate cars and I desperately needed to get gas in the truck. So I debated whether or not I should stop, but was worried that if I didn't I might get stuck somewhere with an empty tank. So I drove to the gas station closest to the hospital, filled up and went to leave but all I got was clicking - the truck wouldn't start. Lovely - great timing! At this point I was just so anxious to get to the hospital to be with Eden that I was on the brink of abandoning that darn truck right there at the gas station.

As I was calling Brad to tell him to come resue me, a very nice man came and said he would be happy to give me a jump if I had some cables. Luckily, fate was on my side and I did happen to have some cables in my truck (I will never be without those things). So he got me going again just as Brad was getting back and we made the quick decision to just take it immediately over to the dealership across from the hospital and just leave it there for them to figure out. Turns out it just needed a new battery (the most expensive new battery installment ever) but it didn't matter what we had to do or pay, we just wanted to get it taken care of and get to the hospital with Eden.

So once we were at the hospital the waiting game began. We had no idea when they were going to take her for surgery, we just had to wait until they called. It was a long day and I was like a ball of anxiety for hours on end. They finally came and got her about 2 o'clock and then it became a different kind of waiting game. They brought her back with all good news though so we are just so grateful.

This week will be rough as she recovers and gets used to everything, but then we will be on the path to going home and everything will be so much better. She is currently on the ventilator still but they are saying that once she has recovered and is feeling better they will try to start weaning her from it. Hopefully that goes well and she will not need the vent for too long.

I will continue to post updates as we go along.

So now, what we've all been waiting for - a clean, tape free shot of her beautiful little face.

Eden, we love you so much and are so grateful for you. You are such a strong little girl and you remind us every day to be grateful for all we are blessed with. We can't wait to take you home! Love you baby.

Wow... here's a crazy update

Remember yesterday's post when I said it would most likely be weeks before Eden's trach procedure? Well here's a bombshell - it's happening tomorrow afternoon. Wow... ready or not here we come!

The ENT specialist who will be doing the procedure is currently the only pediatric ENT in the state so we were given a heads-up that she may not be able to squeeze us into the schedule for a while. It took us about a week just to get her over here to meet with me about the trach so I thought for sure we would have a couple weeks.

So she came yesterday to discuss the procedure and answer questions and then we started discussing the schedule. She said, "We could possibly fit her in on Wednesday if I can get a second OR room." It completely took my breath away and I said, "You mean this Wednesday? As in the day after tomorrow?" Yup, that's what she meant.

So needless to say I've had quite the anxiety bubble inside of me since yesterday afternoon and feel as though I may burst at any moment. The good news is that this is the path we feel is right so we might as well get a move on!

So once the plan was in place for her to get the trach Wednesday, the neonatalogist decided that we would try one last extubation today just to make sure. Well, Eden decided she didn't want to wait until today and took the liberty to take her tube out herself last night. They got her stabilized and then put her on the CPAP but again, the problems were immediate and she was not able to sustain her oxygen for very long at all. This is what I was expecting to happen, but I knew I would always wonder if getting the trach was the right thing if we hadn't tried at least one more time. So now we know for sure that the trach is what she needs in order to progress. So here we go!

Today has been a busy day for me with meetings and visits from all kinds of doctors and specialized nurses. The last meeting today was with the trach nurse that will be helping us through the process. I know I'm going to need her a ton so I am glad to know that she seems like a great person to work with.

We have also been receiving a lot of information about developmental programs and home care nursing programs, and many other very useful resources that we will need once we are home and adjusting to life with a "medically fragile" child. This is going to be interesting. I knew life as a stay at home mom was going to be busy, but I think this is going to get a whole lot more complicated!

Also on the schedule for today was to give Eden a bath so that she is nice and clean and ready for her big day tomorrow. Besides, with the recovery after the procedure I'm not really sure when I'll be able to give her a good bath anyway. I enjoyed that and always love the clean baby smell!

So for all of you reading this today, please remember us, and especially Eden and the doctor performing the procedure, in your prayers tonight and tomorrow.

So to finish up the post, here's some general info:

Eden is now getting 63 ccs of milk every three hours via the feeding tube. They have decreased the amount of extra calories they are adding to the milk too because she was putting on weight so quickly. She is now 8 lbs 1 oz!

An explosion of pink... right down to the bracelet! :o)


We can't wait to be able to see her whole face without all the tape (even though it will be a while before her cheeks can heal).

We Think We've Got a Plan

So as of today we believe a plan is in motion (but it's always subject to change!). We are in the process of getting Eden on the OR schedule with the ENT doctor to get the tracheostomy procedure. It most likely will be weeks before we can get the procedure so the plan is to try one last extubation before she gets the trach. If it works, then nobody will be sad to cancel that OR appointment! If she fails again though, than we will be more than ready to do what we have to do to help her progress.

Obviously a trach is not at all what we were expecting or wanting to happen for Eden. However, we have prayed about this a lot, and couseled with family, friends, and medical professionals, and we feel like this is the best option for Eden at this time.

The good news is that once she has recovered from the trach procedure we most likely will be able to start feeding her by mouth and that just puts us one step closer to going home.

We don't know yet how long she will have to have the trach. In fact, there are still a lot of unanswered questions that we have about it, but hopefully within the next couple days we will get all those questions answered. We have a care conference on Wednesday with the whole team of doctors and specialists so I think that meeting will be very helpful to get us all on the same page.

As far as the heart defect she has, the plan right now is to not go forward with the procedure. The cardiologist says it is not necessarily something that needs to be treated right away, or maybe not even treated at all. It's just unclear what, if any, problems are a result of her ASD. As of right now we don't know if it is playing any role in her respitory problems so we will move forward with the trach and if they continue to see problems in future cardioechograms than we may have to do the heart procedure as well. We will cross that bridge if we get to it.

It's heartbreaking to think of all that Eden is going to go through in the next couple weeks, but it is so good to know that at least we will be moving towards going home. The last couple months have just been waiting around without any progression so we are so ready for the steps we now have to take to get on the trail to coming home.

We love you sweet Eden and hope that we've made the right decisions on your behalf. We just want you to come home with us!

Big news this week...

Some info is brewing and Eden's face says it all. I'm sure if I looked in the mirror mine might look similar. :o)

So we have received lots of new info this week and feel like things are starting to move. Unfortunately we still don't really have an answer in regards to the ventilator, but with the recent discoveries we are finding some other issues that may need to be fixed before moving on (and who knows, maybe these issues are contributing). It's not necessarily the answers we wanted, but we are starting to at least work towards something which is what we've been waiting for.

We are currently in the process of trying to get some clarification and answers to so many questions we have. Right now we are hearing things coming down through the chain, but not directly from the mouth of the person in charge so until that happens and we can know for sure what's going on, I don't want to say too much. I will give the basics though:

In a cardioecogram done last week it was discovered that Eden has an ASD (atrial septal defect), or in non-medical terms - a hole in her heart between the upper chambers. It was also discovered that she has pulmonary hypertension in her lungs which is making her heart enlarged on the right side. The cardiologist is supposed to be coming by this afternoon to meet with us and let us know what's going on and help answer some questions. Sometimes an ASD is small and not a problem at all, in fact many people live with them and don't even know they have it. However, if the hole is large it can possibly be the cause of the pulmonary hypertension and can do some major damage if it isn't fixed.

So that's the basic info on the heart at this point. Once I can get some more clarification from the cardiologist I can post more about what exactly is happening and what the plan is.

So on to the breathing issue. It looks like the plan now is to move forward with a tracheostomy. This is something that was mentioned to us a couple months ago so it hasn't come as a complete shock. The fact that we have been stewing over it for the last couple months helps make the plan seem a little more managable. That, and the fact that we have been extremely blessed with such amazing friends who's baby has a trach and they have already helped us so much with getting used to the idea. We are currently waiting on a meeting with the ENT specialist to get some questions answered in regards to this plan so right now there's not really a lot I know about this either.

So to sum it all up - we are waiting for the doctors to help us clarify her issues and what the plan is to get this all going. I can post more about it when I know more.

In the meantime, here's some fun pictures from yesterday:

She has always been a fan of getting her hair washed.


And once it's washed and dried, she most definitely needs it combed. Again, she's a big fan...


She loves to hang out with daddy - he tells her all kinds of fun stories.

Labor Day in the hospital

The poor little babe is starting to learn that having that tube down her throat and her face covered in tape is not the most pleasant thing. She is getting really good and pushing against the vent connector and arching her head back at the same time. The result is not good because it just means she has to get retaped more frequently to make sure the tube stays in the right place (and that we don't have any unplanned extubations like we did on Saturday). So she got retaped last night, and they had to do it again first thing this morning. Her poor cheeks... ouch.


Don't take your bracelet off! It's still a little big so sometimes I find it wrapped in her blanket somewhere. But it's perfect, she's got room to grow into it!



Usually holidays are so fun and something different that breaks up the routines of daily life. Back in my previous life, the one that was very normal and routine, I used to really look forward to days like today when I would get the day off. I didn't think I would miss much once I was no longer a career woman, but today has made me realize that I do miss something about working - the day off for a holiday. Sigh... there are no days off around this place when one has a sick baby. Holidays are actually somewhat sad these days.

Oh well.... time will pass and these types of things will be fun again. And the biggest plus of all, they will be fun because Eden will be ready to celebrate with us!

Happy Labor Day Everyone!

3 months old!

I must also make note that she is now 19 inches long!

Happy birthday Eden! Mommy loves you!


So I had some fun celebrations in mind for her "birthday" including a bubble bath, and some good cuddling. Those plans were quickly changed when I got a call at about 9 this morning from the doctor. (I should know better about making plans anyway, right?) Apparently early this morning Eden decided she was going to get the tube out on her own... and she did. The result = drama. They were able to reintubate her pretty quickly, without too much trouble I hear, which is really good, but now she's completly wiped out and will need a day to recover.

Everything went ok though, and it actually is probably a good thing because the vent tube she had in was a little old and starting to get very floppy and squishy. She now has a clean, very firm new tube and it's even a size bigger. So far everything is going well.

So back to the pictures:

We did some new footprints for her three month card. Luckily we did these yesterday before all the drama. We wouldn't have been able to do them today given the crazy morning circumstances. I couldn't resist the picture op though when I saw those cute little inked feet!



She is the most patient baby despite all that she has to go through.


I tried to get her to look at the camera and ended up taking about five different pictures - her eyes were looking in all directions except where I wanted them to! Oh well... this turned out cute still.


I hear the songs from this mobile in my sleep. Those songs and beeping...

It's here...

Eden's original due date is today - sigh. You can see the weariness in my face (I'm not sure why I even posted that horrible picture... oh well).

Think positive - think positive...

Here's the way I see it, I've had 89 extra days to touch her, kiss her, snuggle up next to her, look at her cute little face, and watch her grow and develop so much right before my very eyes. Yes it's true, life would be so different had she come today, or any day close to today, but I'm grateful for her and the many lessons I've learned because she came three months early.

What a journey it's been, and will continue to be as we take it day by day here in the hospital. We just can't express enough how much we love our little miracle.

And here she is in her 6 lb, 14oz glory....

Thanks for the bracelet Grandma M! It's hard to see it because of all the tape "bracelets", but it looks adorable and she gets lots of attention because of it. :o)