We had pictures done!

I neglected to mention that AVALON IS NOW HOME!!!! It's been a busy couple of days and I haven't had a chance to really sit down. We finally hit the 7 day apnea free mark and she came home on Friday the 16th of May. After 50 long days in the NICU. I can't believe it was so long and I can hardly believe she is home now. We are all making the adjustment fairly well. Avalon is waking up more often than she was while in the NICU but I think that has something to do with adjusting to my milk supply (which is too much for her right now so she's getting a lot of foremilk which makes her more refluxy and doesn't satisfy her as long) and that it is quieter in our room than in the NICU. I ordered a white noise machine to see if that will help.

We decided that the risk of going to a small studio for pictures wasn't very high and we wanted to document Avalon when she is still so tiny. We've been waiting to get family pictures done until she could be home. So that is what we did! I absolutely LOVE how they all turned out! I can't wait to start hanging them up :)

A profound thank you to all the NICU nurses.

I wrote this little poem to try to express the emotion and gratitude I feel for the NICU nurses who have helped us through this time with Avalon in the hospital. I can't even being to put into words how amazing they are and the comfort I have felt at knowing that my baby has been in the best possible hands while there.



A profound thank you to all the NICU nurses.

When we were tossed into this unexpected journey,
You were there to lessen all the worry.
You helped us navigate the fragile care,
And eased the burden we had to bare.
You gave comfort when things took a step back,
Your love and sympathy did not lack.
You were there for each step forward,
Cheering with us as she moved onward.
You stayed through all the stress and tears,
And helped assuage all our fears.
You assured us that someday we’d be home,
You stayed and talked when we felt alone.
You’d cuddle our angel when we couldn’t be near,
And tell her we loved her, there’s nothing to fear.
You made sure she got the very best treatment,
And always encouraged our involvement.
We knew she’d always be safe in your arms,
That you’d never let her come to any harm.
You were with us when the last day finally came.
You ensured our lives would never be the same.
And so we thank you with gratitude unable to describe,
Because of you we were all able to survive.

Still on Day Zero

Avalon had another spell last night. So still on day zero of the countdown. I'm doing alright with it today. I talked to her team of doctors during rounds and we went over her progress from the same time last week. She really has improved. It's hard to see the day to day progress but if you compare how she is today to last week she is doing much better. I just have remember that. It's slow progress but at least it's progress.
I enjoyed cuddling with her a bunch today. She just does so well when I'm there. One thing we talked about doing is having me stay a night or two and be able to nurse her all feedings and see if that helps her. But her protein is low so they are adding a bit of protein to her bottles of breastmilk to rectify that so I couldn't exclusively breast feed her right now anyway. So maybe if her protein goes up we can try that. I am also bringing some of my older frozen milk from the days right after she was born because it's higher in protein. Plus I'm going to work hard on eating more protein. Hopefully all those things help.
I'm more hopeful and less worried after meeting with her team of doctors this morning. I hope I can keep staying positive!

I pumped right after feeding her today. She nursed just on one side (what she usually does). Then I pumped both sides. I usually get the same amount on each side so this was a good gauge of how much she is actually getting from me. Pretty satisfying to see how much she is getting! :)

She is still loving the reclining bassinet we got her. It's so nice and cozy and helps her reflux!

She is my little snuggler. I love snuggling with her!

Avalon Today (May 7, 2014)

We had another scare with Avalon having another SVT attack yesterday morning. They were able to get her back to normal with ice again. But now they have started her on beta blockers to help prevent it from happening again. Hopefully she tolerates them well. My poor little thing. They have also decided (with my encouragement) to take the fortifier out of her bottle feeds of my milk to see if this will help her reflux which in turn (we hope) will help her apnea.

She did great during the night and today. She didn't have any significant ABD spells and no more SVT's. She is also having fewer small dips. So that's encouraging. Hopefully the trend continues :)

I got her a special reclining bassinet rocker in the hope that it will help her reflux when she comes home as well. I brought it to the hospital today so she could try it and see how she does and also so the doctors can see what she'll be in once she comes home. I'm really excited about it. She seems to really like it so far and did great in it while I was there with her. Fingers crossed! Day 1 of countdown (again) is today!

You can't really tell from the picture but she is at a pretty good incline. I'll have to take a picture from the side tomorrow.

Sign for door after discharge

I plan on printing this up and putting it on the door for when Avalon comes home. What do you think? Is there anything you would add or change? My goal is to do what is best for Avalon, not offend anyone and help them feel comfortable that they are doing what we need.


Avalon is home!
Now that our little preemie is home we would like to request special care for her.
Please do not ask to hold her just yet. She is still very fragile and requires specific positioning to remain stable.
Please scrub your hands and forearms as soon as coming into the house. Follow with hand sanitizer.
If you or anyone in your household has been sick in the last 24 hours please stay away until all are well again.
Remember that Avalon gets tired and over stimulated very easily so short visits without children are best for now.
Remember that Avalon needs calm and quiet to be able to nurse whenever she needs to and will be taken into the other room.
Preemie’s lungs and noses are very sensitive so please no strong lotions or perfumes.
We appreciate you all helping us keep Avalon healthy and well so she can continue to grow and develop!

Progress

Avalon has now gone 2 days with out having any apnea or brachycardia spells that weren't self resolving. YAY! She has to go 7 days before she can go home. I really hope this is the beginning of the countdown for real and that we don't have to start over again.

She is eating super well. She is gaining weight steadily. She's up to 5 lbs 2 ounces and is gaining about an ounce a day. Her reflux seems to be improving slightly. I think her being kept prone after feeds is helping a lot. This might cause a bit of a problem when it comes time for her to be discharged as there is no protocol for keeping her there because she is being kept prone but it's also not "advisable" either. I'm hoping we'll be able to squeak past anything that would hold us back. I'll probably sleep her on an incline at home anyway to help her reflux.

She is getting so big!

SVT (Supraventricular Tachycardia)

At about 2:30 in the morning Avalon had an episode of SVT. You can read about what that is here: http://www.webmd.com/heart-disease/tc/supraventricular-tachycardia-overview

Her heartrate went up to 323 at it's peak and they couldn't get it down for a while. They tried all kinds of stimulation things to get it down but nothing was working. Finally by putting ice packs on her they got it back into a normal rhythm. They then did an EKG and we are waiting for the results to be read by the cardiologist on that.

They are actually currently doing an ultrasound on her heart as well. Which they will send to a specialist at Primary Children's Hospital and we will hopefully get the results back tonight.

If she has another episode then she will be sent to Primary Children's. I hope and pray she doesn't have it happen again.

UPDATE

Avalon's heart ultrasound showed a small hole between the upper chambers called a pfo. They said it's very small and normally don't cause any problem at all and that it should heal just fine on its own as she develops and they don't expect it to cause any more problems especially because she hasn't had any more events since that one.

Just talked to the Cardiologist again. He said that he will give Avalon a pass on her SVT spell and won't start Beta Blockers unless it happens again.