A Flashback

She loves this mobile - it's been so fun to watch her re-discover it over and over again.


She has lots of room to grow into this shirt!




The antibiotics seem to be helping already because she has had a better day today than she has lately. It makes me so glad to know she is feeling better. She also got a bath today and that was a lot of fun.

On the schedule tomorrow: another eye exam... boo.



So to finish things off today, here's a little flashback:

July 10th...

And today:

They are still good friends. The only difference is that Eden's the bigger monkey now.

Pneumonia... again

Poor little baby. They said they weren't going to try another extubation for four weeks, but that doesn't mean life gets boring around here! It is confirmed that she does have a form of pneumonia again. So she has an IV again and the antibiotics are back... bummer.

I knew something was up because the last couple days she has had a ton more secretions so they were pretty much constantly suctioning her. She has also had a lot of bradycardia spells (extreme drop in heart rate) which was very unusual for her.

We aren't sure why she keeps getting this. Just last week the bacteria/organism in her lungs had totally cleared up, but it's returned fast and strong this time. I have a feeling this is something we will be battling continuously at least until we can get that darn vent tube out.

Depsite this though, she is very happy and alert and as cute as ever. And she also still loves to watch her mobile spin around.

12 weeks old!

6 lb 7 oz! She's like a normal size baby now! :o)

There's her famous "I Love You" sign again. This time she was sleepy though so it's a loose and tired version. :o)


I love her little triangle shaped feet.


Her poor little squished cheeks. But she sure looks cute!


Hanging out with Grandma while I was preparing her bath.


If she could talk, I think she would be saying "No, please no." Despite the way this picture looks, she does enjoy her baths for the most part.


It's so cute to be fat when you're a baby.


Cozy and resting after the bath.



The only thing changing around here right now is her weight! She is putting it on rapidly. They have increased her feeds to 55ccs every three hours now and it's being fortified with extra calories so that explains it! This is exactly what we need though... she needs to get big so we can get her off this vent.

Life continues on here in the hospital. We are on day 84. No, I haven't been counting - they do it for me and mention what day we are on every day during rounds. Thanks for the reminder guys... we appreciate it. :o)

We're in for the long haul...

... as if seven days a week, for three months wasn't already considered the long haul, but now it's really becoming apparent that we have quite the road ahead of us.

We experienced another failed extubation attempt today. This time they tried the Vapotherm machine, and then the regular CPAP machine, and the results were the same as before. She struggled way too hard from the very beginning.

The pulminologist was here today during the time Eden was off the vent so that she could get a good look at her. Going into this today I had the feeling that she would be back on the ventilator by the end of the day but I was just hoping that the pulminologist would be able to find some reason it wasn't working - something that the ENT and the neonatalogist were missing.

Unfortunately, her analysis in regards to the airway came to the same conclusion as the others. She couldn't find anything wrong. She did a bedside scope of both her upper airway and lower airway and she didn't find anything.

The past couple days I have been talking with the doctors and nurses about the possibility that maybe it was her nose that was the problem. I had confirmation about my suspicion the other day when she had her accidental extubation and she was throwing up. I noticed that throw up was flowing out of her left nostril, but nothing was coming out of the right (sorry, kind of gross, but totally relevant!).

So that day we tried passing her feeding tube through both nostrils and there was no problem getting it through which then made me think that maybe there really wasn't a problem. However, the pulminologist tried to put her scope through both nostrils today and it would only fit down the left side. Her right side was much more closed off. The saga continues...

So they were saying they could do a cat scan to get a better look at her passages and see how severe the narrowing is. The thing is though, if there is something wrong with her right nostril it can be fixed by surgery but they won't do the surgery until she is much bigger. So there's really no point in pushing the issue right now. They don't know if this problem is really severe enough to really be the reason for so many failed extubations anyway.

So now we're stuck... we have no where to go and nothing to do except wait until she gets bigger. Maybe it's something she will just grow out of so we will wait and see. Get this... the next attempt isn't even going to happen for 4 weeks. 4 WEEKS! Wow, it's going to be a long month.

Who knows when we'll ever go home. We know we have a month to wait for another trial. At that point, if our prayers were answered and she was able to stay extubated, she could begin to learn to eat, and we realistically would still have anywhere from one to two, maybe even three months getting that down. If our attempt in 4 weeks doesn't work... well I don't even want to think about how long we will be here.

So we're rolling out the comfy chairs and settling in for the long haul. I have a feeling this blog is going to get really boring for a while. We'll try to remain positive and just take it one day at a time and enjoy our home in the hospital with Eden.

A crazy day yesterday, but a relaxing day today...

Yesterday Eden gave us all a little unexpected scare (she's really good at that). I was holding her and enjoying our time together when she began to throw up pretty badly. At that point I hurried and put her back in her bed and the nurse was trying to suction out her mouth and nose. Unfortunately, her oxygen began to plumet and the suctioning really wasn't helping. It became clear pretty immediately that she had accidently extubated and she was no longer getting the oxygen she needed from the ventilator.

It was rather amazing though because as soon as I was realizing what was happening, people were appearing and running to the rescue. Literally within one minute she had several nurses, RTs, and the doctor there.

They were very quickly able to reintubate her without any problems which was such a blessing.

It's unclear exactly what happened and why she was extubated, but I think that over the last couple days the tube was just slowly coming out of place. She had been acting a little different, more aggitated and uncomfortable, but I wasn't sure what was up. They say that she probably began to throw up because it was aggitating her and when she did that it just finalized the removal process.

Fortunately, everything went pretty smooth and she was settled and resting again in no time.

Unfortunately though, the rest didn't last long because she also had to get her first round of immunization shots. Not suprisingly though, she handled that like a champ and was pretty quickly calm and settled again.

The rest of the day we tried to leave her alone to rest and recover.

Today she is back on track and it's been a pretty enjoyable day. One of the developmental therapists came by and showed me how to give Eden a baby massage, complete with massage oil and everything! It was a lot of fun and Eden really seemed to enjoy it.


After the massage was over I got her all snuggled up next to me in her favorite position and she slept really soundly for about 2 hours straight without moving a muscle. I think the massage really relaxed her.


She definitely has the mullet look going on too which scares me. Her hair is getting really long in the back, but doesn't appear to be growing much on the top! Yikes...


So with all the stress and anxiety this little one has put me through, it has made me wonder sometimes how she really feels about me, but she clarifies her feelings for me a lot, and I was finally able to capture it. :o)

Brad's Post: The Top Ten List

We've spent some serious time in the hospital and have met a lot of health professionals. In fact, we've been here for nearly 3 months and have heard some disconcerting things from nurses and doctors. We thought it would be funny to compile a top ten list so we started to keep track of the things that caught our attention.

Here is a list of 10 things we have actually heard that you never want your nurse or doctor to say:

10. "If we don't know, we just guess."
9. "I've never seen that before" and it's cousin "Now that's unusual."
8. "I'm not used to this machine."
7. "I can't figure this out."
6. "How do I make the beeping stop?"
5. "I can never get this breathing mask right."
4. "I spent 20 minutes trying to print these labels."
3. "How do I calculate dosage?"
2. "Oops."

And the worst thing we hear from our doctors and nurses...

1. "I'll see you tomorrow."

A very fun Sunday...

Our bathing beauty...


She really didn't sleep through her bath, it's just that darn bright light that kept her from keeping her eyes open. Once that was gone she was ready to say hi to the camera...


Her eyes are starting to look blue these days. We'll see if that lasts.



I'm so sad that she already out-grew this outfit! It's one of my favorites and she never even got to wear it! You can see that her poor little legs were all squished in there. Oh well... we tried. Suprisingly though, the nurse was telling me that Eden is actually short on the growth charts. I think she said she is around the 10th percentile. Weird... I would have never guessed that she would be on the short side. Unfortunately though, this outfit was apparently made for a baby that's not even on the charts.



Don't mind my freaky red eyes, or Brad's squinty ones. Just focus on the cute little blue ones that are also trying to avoid the camera.


They should make adult size boppy pillows - that looks really comfortable.


The big news of the day is that Eden is now getting 50ccs of milk every three hours - just short of 2 ounces. No wonder she is putting on weight so quickly. As of this morning she forged her way into the 6 pound range. 6 lb, 0 oz to be exact. It's really adding on fast and she just keeps getting cuter and cuter!

Lots of pictures!

My baby is getting so old! Part of me feels like the last 11 weeks have been a total blur - the other part feels like it's been the longest 11 weeks ever!


She's so darn cute...


Another new little outfit to grow into!


Most all the pictures recently have been of her sleeping, but she really is starting to wake up a lot more these days which is so fun!


Grandma has been one of Eden's most frequent visitors since she was born and it was 11 longs weeks before she finally got to hold her!


We were so excited to have Gina and Eric come by and visit. They were two of Eden's nurses over at Lovelace and we really created a great friendship with them. They were so good to Eden (and to Brad and me too) during our time with them and we are glad to keep in touch!



Eden has recovered pretty well from the extubation attempt this week. She continues to have gobs of secretions that need to be suctioned quite frequently though (sorry, that's kind of gross).

As of right now, we are hearing that the plan is to try another extubation this coming week. The only thing that will change from the last attempt is the machine they want to use. The plan is to use a Vapotherm machine instead of CPAP. Basically, it does the same thing as the CPAP machine, but it's much more comfortable for Eden so the hope is that she will stay more relaxed and calm. I'm not really sure if it's going to make a difference, but at this point it's just about ruling things out.

Poor Eden... I hope that soon we will be able to find out what's really going on.

The good news is that her eye exam last week went well. The doctor said her retinas are still premature and not fully developed so she will have to have another eye exam in two weeks, but he didn't see any retinopothy (damage to her retinas) which is a very common thing for preemie babies. We are grateful for this good news for sure!

So we will just continue to push forward and hope for some helpful and postive information in the coming week!

I'm so proud of my hubby!

Despite having the most stressful and crazy summer of our lives, Brad had a very successful summer at work and was one of the top financial reps in the summer sales competition they have each year. So because of his hard work and success, he was awarded a vacation for the two of us to Grand Cayman Island in the Carribbean.

There are several offices that participate in this type of sales competition so all the reps from many different states all go on this vacation at the same time. This is the same experience we had last year when we went to Puerto Rico and the trip was so much fun.

Oh how we could use a vacation...

The problem is that the trip is mid-October. Looks like we would need a miracle to have our little baby out of the hospital by then. I don't think we are going to be able to make the trip - I guess we'll see what happens.

Eden needs a vacation too so we just can't go without her! We all need to celebrate together.

The point of this post though is to tell Brad how proud I am of him. I don't know how he pulled it off - I know he is just as stressed and exhausted as I am. Babe, you're amazing! You help me pull myself together and keep on going. Thanks for all your hard work and support. We love you and are so proud of you!

Same story, just another day...

Getting in some snuggle time before the extubation.


I'm sure you can tell from the title alone that the extubation today was not successful. She lasted about 5 hours off the ventilator, about an hour longer than the last attempt. The story really was the same though. She struggled... a lot... and she just got too tired and had to stop.

They tried everything they could think of. She was even sedated to help her relax and stay calm. Unfortunately though she was pulling too hard and gasping for air.

The ENT doctor came to do another broch test on Eden while she was off the vent. She got her scope down in there and looked around and still didn't see any significant upper airway problems. She said everything looked open, with little secretions, and she didn't see any malasia (folding of the airway).

So it doesn't appear to be an airway issue...

The neonatalogist doesn't think it's a lung issue though because she is on such low settings, with low oxygen requirement, while she's on the vent. It wouldn't make any sense for her to be on such low settings if she had a lung problem.

So it doesn't appear to be a lung issue...

We are all extremely confused.

The neonatalogist said this is very rare and he's never seen a case like this before. He thought for sure today would work because they were prepared and ready right down to the smallest detail.

I hate to see pictures like this but feel it's important to document for Eden. This is during her time on the CPAP while we were waiting it out.


Fortunately, he was able to reintubate her without too much trouble. Luckily that went smoothly this time. We have had some pretty traumatic experiences with reintubation in the past so we're grateful that this went better for her.

I can't even begin to express how I feel right now. I'm looking over at Eden and she is so exhausted and sleeping so deeply that her mouth is hanging open and her arms are limply laying at her sides. She is extremely worn out physically and hasn't moved in about 4 hours.

This is exactly how I feel emotionally. I feel like I need to just shut off for a while. There's just no break from the stress, concern, fatigue, worry, fear, pain, guilt, anxiety, and sadness. I'm not sure how much more I can take...

What choice do I have though? This is my baby. For some reason she was chosen to come to us, and she was chosen to come this way. I don't understand it... it's not fair. I hate that she has to be the one to struggle and hurt. I wish I could trade her places - or at least just be able to hold her and tell her I can fix it. But there's nothing I can do except love her, support her, and wait.

So Eden, here's my message for you - I love you more than I can ever explain; more than I thought possible. Someday you will read this and understand what a fighter you are. You continue to amaze me with your strength and determination to fight your way through whatever comes your way. You tried hard today and really gave it your all. There's somthing not right and we are working to figure that out. We continue to pray for you daily as your battle continues. We will always be right here by your side. We love you and are so glad that your ours!

I was right, she loves it!

Just as I suspected, she loves her new mobile. It was so cute to watch her discover this fun new toy. She actually watched it go around and around for a really long time! Like 20 or 30 minutes (which for her is really long because she hardly ever is awake for more than 10 minutes at a time)! It was really cute and I'm so glad we have this for her. Thanks Jen!!!


She also loved the cuddle time she got with daddy...



She is already a pro at doing fish-lips!


The shocking news of the day is that her weight last night was 5 lb 10 oz! I think I must have heard the nurse wrong on Friday when she said 5 lb 1 oz because there's no way she gained 9 oz in three days - that's just crazy! Oh well, all I know is that she is getting big really fast!

Unfortunately, it's going to be a crazy week for little Eden. Today she will be getting her 2 month immunization shots - ouch - as if she isn't already going through enough already!

Tomorrow she will have her third eye exam - those are always stressful and painful for her.

And Wednesday is the day they are planning to extubate her. Need I say more about this day? Oh man... I'm nervous.

We will pray extra hard for her this week and hope we see some progress and get some answers!

A Fun New Toy!

Take a look at that - her first totally awesome toy! So far she hasn't been awake to actually see it, but she enjoyed the music it played while she slept! We are excited about it though and think she will love it!


Look at that chin! Wow... she sure is getting round!



She got a bath this morning which was great. Other than that there really is nothing to report. She continues to grow and fight her infection so as soon as that gets better we will have a better idea as to what the game plan will be.

Here are some pictures from yesterday that I didn't get a chance to post.

5 lb of pure cuteness!

Yup... that's right, she's now a whole 5 lbs!

So to celebrate, she got a new outfit! So here she is before... she knew the outfit change was coming and was trying to hide.


And here's the new outfit! She's a total cutie! It's so much fun because she is starting to fit in more preemie clothes now!



So back to the really important news - we found out this morning that she still has some sort of organism growing in her lungs. She has been getting antibiotics for this infection for a long time now, but that bug is not going away! So unfortunately, this will most likely delay our plans for extubation next week. The doctor doesn't want to try until she is totally clear of anything going on in her lungs. She will start another round of antibiotics, maybe something a little stronger this time, and next week the doctor will re-evaluate the plan and decide what to do next.

The good news is that the way they tape her ET tube here is much more secure so I'm able to hold her everyday. As long as that's happening I can be a little more patient. :o)

She will also be getting her 3rd eye exam on Tuesday. Those are never fun for her. Hopefully we will continue to get good results there.

Answers....Kind of

First, I'll start by saying that the news is good. We were prepared for the worst case scenario and we definitely are hearing that the results show that her situation is not as bad as we had thought. The problem is that I feel like we are pretty much right back to where we left off... confused.

So here's what the ENT had to say:

There is definitely some swelling going on (which we knew), but not enough swelling that would prevent her from staying off the vent. The swelling though does make her airway smaller which could be one of the reasons why it was so difficult for her to be reintubated each time in the past.

She also said there may be some tracheal malasia (which is a soft airway), but again, it didn't seem bad enough to prevent her from breathing on her own. This was hard for her to know for sure though because Eden was under anesthesia so she wasn't breathing like she normally does. It is possible that her airway is collapsing a little more when she is off the vent and trying to breath on her own. This is something they can't know for sure though until they can evaluate her off the vent and breathing on her own!

And that's about it. Her opinion is that from her evaulation of Eden today while she was under anesthesia, there really doesn't appear to be an airway issue that's preventing a successful extubation.

So now we will be passed back to the neonatalogist to determine the next steps. We haven't had a chance to talk to him yet, but in our discussion with the nurse and the ENT, the next step will most likely be for the neonatalogist to try to extubate her. At this time they can evaluate her and see if they can hear any weezing in her airway, or see if maybe it's more of a lung issue.

So we are back to square one - waiting for another extubation - but at least we know she doesn't have a significant airway problem! So I guess, in a way, it is like we just took another step forward!


Here are some pictures from today's events:

Eden in the transfer bed waiting to head over to the operating room.


Thank goodness she got some girl bedding back...


She's such a cutie...


Look at those cute little chubby fingers


Love that lip!


Sorry... all the little things are just especially cute to me today.

This doesn't look very comfortable to me, but she seemed pretty content!


She also got a visit from uncle Michael today too. And he even got to hold her... how spoiled!



Whew - big day. I think that's a wrap for now. Hopefully soon we will get a chance to meet with the neonatalogist to find out what the game plan will be. Until then, we will continue to hang out and make new friends.