Back to normal...mostly

Evelyn continues to improve and her lovely head is deflating each day...and we can sometimes see the complete outcome.  She is soooo amazing, sweet, laid back, happy and beautiful.  Her hair is coming in blonde so I guess Dave and I are going to have a blue eyed blondie after all.  I will post new photos soon.  I hope to keep the blog updated often.

Ella continues to potty train without a problem.  No real accidents and in panties all the time.  She is the best medicine for Evelyn and we are amazed watching them interact.  All is well here and we hope to see everyone soon.

More pics

Here are some of Ella and her biggest accomplishment...loves chapstick as a reward...works for me.  

10 days post-op

We have had a nice time being home.  Evelyn is almost back to herself.  We are trying to wean her off the pain meds and just use tylenol which is going ok.  She is still not eating or sleeping completely normal, but that is to be expected.  She is such a sweetie and I am enjoying every day with her watching her "return".  She loves being close to me so all my babywearing things are getting a work out and instead of moving her to the crib now..she is back in bed with me.  I just feel so protective of her now and I am going to wait to move her.  Ella continues to do great with the potty...day 4 and no accidents.  My girls continue to amaze me!  Here is a photo of Evelyn from today.

A bit about Ella

Ella has decided to make my life a bit easier.  We have been doing a little bit with the potty for a few months now, but three days ago she refused diapers and used the potty all day.  She stayed dry when we went out and has been doing great now day 3.  She got to pick out big girl panties (Dora) and is doing great.  I am so proud of her and less diapers to wash...yeah!!!  We are going to continue to stay in the next few days and do the naked baby thing and hopefully she will continue, but I have committed to this and no more diapers for her.

We are doing great at home.  Ella is amazing with her sister and loves her so much.  Ella is also the best medicine for Evie.  It is still hard to see Evie when I look at her, but she is in there and each day the swelling goes down more and more.

Recent photos of new Evie

We had a pretty good night home.  She started to vomit again, but did keep formula down over night.  We joke that she will now refuse her formula after drinking 38 oz of Aunt Mel's good stuff.  She had a lot more coughing and we went to the doctor today and discovered she has bronchitis.  She started on an antibiotic for five days so hopefully it resolves itself and we don't have to worry about RSV or anything more serious.  I have posted some pictures of her first bath from the hospital before we left and some pictures from home.  It is still hard for me to see Evelyn with her head still being so huge and the baldness is really throwing us.  We think Evelyn got her hair before any organs were developed so it is weird to see her so bald.  She is smiling at Ella all the time and loving being home.  Ella is sooo great with "sister" and is so concerned over her boo boo.  We were worried she wouldn't recognize her, but she immediately kissed her belly and did all her tricks to make Evie smile and they worked.  It is great to have us all together again.  I am sure I will continue to post more photos everyday.  Love to all

It's official...we are out of here!

Evelyn is doing so great that they are letting us go home. We just need to get her prescription filled and we are ready to leave. We couldn't be happier with how she looks and how well she is recovering. The doctors even said that she is doing better and looking better then many other babies do when they leave. Our little Evie is so strong! We will continue to keep you updated as she recovers from home.

We are going home!

Evelyn has made such a recovery in the past 24 hours that they are releasing us today....I can't tell you how excited I am to get her home, see Ella and sleep in a bed.  I feel sad for the moms and dads who have been here so long and will continue to be here.  We are truly grateful.  She is back to her normal eating schedule, laughing when I tickle her and seems to be great on her oral meds.  We are waiting for discharge orders and all the other things that will most likely take all day.  She is a bit anemic from the blood loss, but they are not too worried about that.  She is also coughing now and we will have to wait and see if it is a cold or from the intubation and dry air.  She is sleeping now and I get to give this stinky stinky baby a bath when she wakes up.  The George Clooney doc (Dave just loves when he comes by) wants me to wash her incision really well with soap and water.  I have to find even more strength to do that.  I am attaching a few pics of the nice view from our room.  I couldn't sleep much last night after holding her for hours and then just anxiously awaiting to talk to the docs....so I realized our nice view and attempted to get a pic or two.  AGAIN...thank you all for your support, thoughts, prayers, visits, lunches and dinners...we love you all and I know it would have been so hard without everyone behind us through this difficult week.

More good news

I love today!!!  Evelyn is really interested in anything she can get her one hand on.  She sits up assisted of course and I will probably be wearing her for the next year non-stop...:)  She has taken a total of 6 ozs of yummy milk and has kept it down...thanks Aunt Mel. Don't worry,  I am sure I will remind her one day it was her fault my boobs don't work..I really am just kidding.

She opened her eyes

Minutes with her eyes open and she is going for the wires

What a great 24 hours.  She opened her eyes up at 11:00 today..took a nap and then woke up around 2:30 and grabbed for the wires, talking and played with her toy within minutes.  She pulls the pulse ox off immediately so now we are hoping a sock stops her.  She still isn't eating, but we will see how the rest of the day goes...Enjoy the pictures of her beautiful face and a peak of some pretty blue eyes.

A New Day

Evelyn had a pretty good night and is actually still sleeping!  Her swelling has decreased so much and we are starting to see Evelyn in there again...we are hoping her eyes open today.  She still doesn't want to eat so they actually decreased her fluids by half hoping she gets thirsty and wants to eat.  Dave took a picture of her yesterday next to the computer and he wanted me to post it and the other pics are from a few minutes ago...Thank you all so much for the thoughts and prayers.  We truly are blessed to have such amazing support.

Evelyn Update

We had an ok night, she was definitely crankier and not sleeping as much.  We are finding the balance between the right amount of pain meds and her being too out of it.  Her bandage was removed today and they saw she was leaking a lot around the drain.  It continued and they told us it was spinal fluid.  They gave her extra meds, removed the drain and then stitched the opening where the drain was.  They say the fluid should now reabsorb and since they caught it on time, we probably won't have to worry much about infection, but they will check her.  She is looking less swollen today.  She still doesn't want to eat her formula, but handles pedialyte ok.  My wonderful sister has pumped for her and just brought us 20 ounces of expressed breast milk.  The docs say she may tolerate that better...so now we have our very own wet nurse.  She took a 1/4 ounce so far and has kept it down.  Love to all!

Day 2

We had our first night on the new floor and it was much nicer.  She slept most of the night after we figured out her pain management.  She still refuses to eat, but I will try her every few hours.  I hope to avoid a stomach tube if at all possible.  She is exhausted and just sleeps which I am very happy about.  I want to hold her non-stop, but her head is so heavy that she just is a bit more comfortable in her bed.  Our goal for today is for her to keep some food down and keep her elevated.  Her swelling has hit the peak and we should start seeing improvements.  The surgeons said we will not see the final results for up to 12 weeks.  Thank you again for your thoughts and prayers, they mean so much to us.

Update

We have been moved to a shared room on the regular pediatric floor and that is great news.  It will be nice to get sleep next to her tonight.  She has been very agitated this afternoon and is also refusing to eat.  She has gone from having 5 IVs to just 1.  They have all blown so now we are just hoping this one lasts or she starts eating tomorrow so her fluids can stop.  The swelling and bruising continue and we really have a hard time seeing our Evie as she was at all.  She is SO strong and we are happy to have one more day behind us.  We did get some interesting information that she may have something abnormal with her jaw which could be a precursor to TMJ..which most of you know I suffer from terribly.  We haven't heard from the surgeon about it, but came across it on her chart...pays to snoop sometimes.  It is interesting that it may be genetic more than I thought it was.  I hate to think she may have it, but at least we are finding out soon.  I am going to try and get some sleep.  I will post more tomorrow.

Day 1

Evelyn is hanging in there, she had a pretty peaceful night.  She is on good pain meds and I can press a button to give her a controlled amount when it is needed.  She is much more swollen and bruised today.  They said she is on course and may look worse tomorrow and Saturday.  They just took her central line and urinary catheter out.  Dave and I are taking turns holding her...she is soooo puffy and swollen all over from the excess fluids.  She also just had her first 2 ounces of pedialyte and LOVED it.  We are due to move to the regular ped floor tonight.  Her pain is increased some and we think she gets upset trying to open her eyes.  Just one whisper and touch though and she calms down.  Visitors are welcome and we appreciate so much everyone's thoughts.

Pictures

Evelyn with her boo boo bunny that Aunt Mel crocheted for her all day today!!!

She is resting comfortably; IV in her neck, both arms and both ankles just in case one fails...they have plenty.  The pain meds have been started and we are now on the road to recovery.  She is such a strong little girl and we feel blessed to be here in such good care.

She is out of surgery

She is out and just wheeled down the hall into the PICU.  We have to wait 20 minutes to see her....she looks as good as she can and they say the swelling will increase over the next 72 hours.  I will send pics soon.

Before Surgery

Half way there!!

We just got a call from the Neurosurgeon! It was scary since he asked to speak to the family.  He let us know her bones are out and that the plastic surgeon is now stepping in to finish.  We are looking at 3:00 for a finish time.  I am nervous, but so ready to see her.  She is stable and doing great under anesthesia for so long.

Under way

This morning was rough, but we are on track.  Evelyn was up and social as ever so needless to say she never stayed asleep while we waited in the pre-op area.  I took her back at 7:30 and stayed with her until she was sedated.  It was the hardest thing I have ever done, but I know she is in good hands.  The plan is to start at 9:00 and they will update us every two hours.

Preparing for Surgery

I am anxiously preparing for the big day tomorrow.  Dave is working, Ella is continuously out of bed and I have lots of laundry to keep my mind occupied.  We have mixed emotions about tomorrow; we are ready for the road to recovery and yet we are terrified of the trauma she will endure and worry about how she will cope.  We will be surrounded by family tomorrow and welcome anyone to visit if they wish.  I will update this site daily and post updates as they occur.   Please know we love you all and we know your support and prayers are with us as we take our baby girl in tomorrow.  She is so happy, strong and we know she will heal perfectly.  We have had many wonderful phone calls today and I apologize for not making return calls, the night is slipping away and I will be sure to let everyone know updates tomorrow.  

This blog is new and starts with my pregnancy of Ella and up to now...thought I would have some fun as I set this up for Evelyn's big day...Love to all!

Sisters