appointment with the cardiologist

Ella's heart continues to do well and blow people away.  I mean her cardiologist even specifically said, "she's the bomb."  Her echo showed that the function has improved since the last time and her heart size is basically normal.  There are only a few trivial concerns, but they are small enough that they are comfortable taking her off of her main heart medication (digoxin).  Also took her off of zantac, which was for reflux.  So now she is down to 1 blood pressure medication, which if she continues to show improvement, they will most likely take her off of it in 2-3 months.  ?!?!  Off all medications by the end of the summer?!  Can't say how amazed and thankful we are.  She weighed 10 pounds 9 ounces at the doctors today.  She's still at the very low end of the growth chart, but she is growing.  Just waiting for some fat rolls!

We also stopped by the NICU today and saw a few of the nurses that Ella had.  It was great to hear the comments about how good she looked since it has been a while since they last saw her.  We hope it brightened their day to see how far she's come and to see the fruits of their labor as they continually work with premature and sick babies.  Forever grateful for the nurses' caring hands and hearts.

We think Ella has probably had cabin fever for pretty much her entire life, and with some nice spring weather finally here, we are itching to get her out more.  She's got so many people to meet & places to see, so there will definitely be more Ella sightings in the very near future!

priorities

trying to juggle, remember, enjoy, simplify.


i really do love my kids and husband, but (going to put myself out there) find myself constantly having to remind myself that it is all a gift and to be grateful.  grateful for breathing, laughing, living, togetherness, just being.  trying not to get stuck on the shallow ins and outs of life, but truly enjoying and remembering what is and has been given....life.

i want to cut back on all that complicates and focus on what matters.  trying to picture what that means and how to do it.....random thoughts.




ella has an appointment with her cardiologist on wednesday.  she is taking different combinations of 3 medications (digoxin, captopril, zantac) 4 times a day.  hoping that she will eventually not need these medications.  she weighs 10 lbs 4 oz.  she has only been nursing and really loves it, but i think i am a little concerned for her weight.  need to make sure she keeps an upward trend.  she has been sleeping really well and is establishing a routine for naps, eating, and awake time.  makes it a little easier to plan our day with her having more of a schedule.  all in all we are still in awe and so thankful for her in our life....for all 3 of our kids.  

ella

elijah

ayden

                    they are little miracles.

my cup runneth over

these past few weeks were such a blessing for many reasons.  a beautiful, thoughtful baby shower was thrown for me and ella by my sister and a group of wonderful girlfriends.  it's funny, but i felt honored to be at my own daughter's shower.  the sheer power of ella being alive and well is still mind blowing to me.  it is still very hard for me to hold my composure when i think about all of my beautiful family and friends and how they were an extension of god's love for me and my family.

me, my sister, and ella

a few beautiful friends inside and out

cookies that looked and tasted amazing by kenz

lovely ladies at the shower where amy was the gracious hostess

i was presented with a photo album from my sweet friend andi of andi mae photography (she's a professional ;) ).  she was able to capture our journey as we packed up at the hospital and headed home with our ella bundle for the first time.  she did an amazing job capturing the emotion and anticipation of ella's home coming.  i will be sharing those pictures soon.....simply amazing.

ella has been reaching great milestones.  she rolled over this past week.  we were beyond excited!

some tummy time to work on rolling over

some of erik's family has been able to visit for a few weeks, which has been wonderful.  to have his sister, niece and nephew, and mother around to witness ella's beautiful life has been so fun for us.

some of erik's family 

dancing with tante sonja

some of my aunts and uncles were also able to visit.  family is wonderful.

thank you, thank you to our jesus, family, and friends.  i really can't say it enough.

my dad, being the musician that he is, also wrote a song for ella and put video of ella's life in the hospital leading up to coming home to his music.  it really brings erik and i back to the beginning and is such a good reminder of how miraculous ella is.  so hard to go back, but good to remember how jesus is so faithful and full of grace.

view the video at my dad's web page.

all wonderful things that jesus has used to fill my cup.  i am overwhelmed and so, so grateful.

Getting bigger!

Ella has passed the 9 lbs mark!  She is gaining weight steadily and doing so well nursing and sleeping.  She is smiling so much more and interacting with us.  She is such a happy baby.  I am pretty sure that I get watery eyes every time she smiles at me.  Such a joy.  Here are a few pics of our growing Ella!  God is so good. 

                           

                                     

                                         Bath time with her brothers

Just loving her

I just can't help smiling when I look at her.  

My heart swells when I look at her.  

God feels the same way, magnified, when He looks at us, His children!

To know that He loves her more than I ever could is so comforting.  

Swing of things

The usual suspects.  

So I feel like we are getting into a rhythm.  A good one.  The last two-three weeks have been pretty good.  You know.... the boys are kind of over the hype of having baby sister home and seem to be as normal as a 3 and 5 year old can be.  I am able to get meds and food to everyone in a timely fashion.  I am able to get kids down for naps or quiet times or whatever seems to be needed that day.  I am able to have people help take and pick up Elijah from preschool.  I am able to keep a pretty decent schedule to train for a half-marathon.

And all the while, Miss Ella seems to be thriving and behaving "normal".  She really seems to be adapting well with having 2 brothers and all the commotion and bustle that comes with it.  She has been strictly nursing and gaining an average of about an ounce a day.  Yesterday she weighed in at 8 lbs 10 oz.  Just the fact that she has enough stamina and energy to nurse has really been amazing and a huge blessing. For me, it has always been easier to nurse than to mix a bottle.  Both of my boys ONLY nursed and did not like a bottle at all.  We have been giving Ella bottles here and there just because she takes oral meds and we need her to be used to taking a bottle every once in awhile.  She really is a sweet, interactive little girl with the most engaging eyes.  I love her.  Love, love seeing her smile and soak in every word I say to her.

She had a cardiologist appointment yesterday.  It went well....heart seems to be doing well functioning at a normal range.  The walls of her left ventricle are still thick, but it is pumping and functioning.  There was some improvement on a 'leak' that she had before that wasn't a major concern, but it isn't there anymore.  The cardiologist said we could take her off of aspirin and ween her off of the coreg.  Erik will have to hop on here at some point and let you know exactly what they said....it has always been hard for me to completely understand everything that's being done and the reasons.  Her heart is doing well is all I really hear and I am happy.  Is that being too naive?

Ella did have a little scare on February 21st.  She had a little spell of a huge spit up, a slightly high fever, and troubles breathing.  We were very nervous and called our cardiologist,  family doctor, and a family friend in the medical field.  She was fine and our cardiologist seems to think it was a reflux issue and it really just tired her out.

It was a reality check AGAIN for me about how fragile our lives are.  It's so funny how we learn lessons and then we have to keep learning them over and over again.  God is so patient and loving.  Love is patient, right?  Right!  I need to remember that when dealing with my kids who are still so young and learning.  This little daughter of mine has been teaching me so much and I am so grateful for every second I have with her.

A mother/daughter talk.

 I really cannot wait until spring shows it's face and cold and flu season tapers off so that I can return to my mom's groups and get out a little more.  As for now, we are enjoying each other at home.  We have been letting people come and visit as long as they have no symptoms of being sick, which has been nice so that we can stay in touch with friends as much as possible.  Thank you all so much for your prayers, meals, groceries, and words of encouragement.  It all really kept us on our feet and going.  We feel like things are settling down and we have a handle on life........until the next "lesson", which we will embrace.  ;)

At home and loving it.

I have to admit that it has been so busy being home, in a good way.  These are blessings not burdens.  ;)  We love being under one roof and not feeling 'torn' between our children.  The boys have mentioned many times that they are so glad we are all together as a family.  Amazing how even at a young age they want to feel that 'togetherness'.  I really love that they love being a family so much.  Or is that too much love in one sentence.  Anyways, we have been having fun adjusting to Ella being home.  There are many things that this entails....let me just list what comes to mind:
medications, kisses on her forehead, washing bottles and syringes, dry dry hands, cuddles, running Elijah to preschool, enjoying Ella's smiles, walking her in the night bouncing back and forth, washing burp cloths and baby girl clothes, sanitizing everything, sitting on our own couch to feed her, washing my hands and little boy hands, listening to baby squeeks, making bottles and normal food, sitting at the dinner table as a family of 5......I really could go on and on.  Like I said, it's a good busy.

We had our first cardiologist appointment (is that what those are called?) yesterday since being out of the hospital.  Ella's heart is doing well.  It is still functioning at a normal level and they have no reason to believe that it will deteriorate.  The walls of the left ventricle are still thick.  Time will tell if it is scar tissue or muscle from the heart remodeling itself.  She was taken off one med (lasix) and given a higher dose of another (digoxin) because of her weight gain.  She weighs in at 7 pounds 6 ounces and is rapidly gaining.  She really put up a fight during her echo, which the cardiologist was happy to see because he said she was too sick to put up a fight before.  She's a fighter, as we all know.  :)

Soooo another issue is trying to stay germ free with 2 young boys also in the picture.

It would not be good for Ella to get sick right now.  I am learning to let this go to some degree.  I can do my best with what God gives me....I will be a good steward, but there is also a point where I just have to trust Him to take care of the rest.  I will not be able to get rid of all the germs in our house 24/7 and I would die trying to.  As with everything, from money to friendships to the physical, spiritual, and emotional well-being of your very own children, we need to do our very best with our gifts from God and He will take it from there.  It's kind of freeing to know that and to be in that posture of 'hands wide open, looking up'.

And that's where we are at.....home and loving it.