Saturday, July 27, 2013

3 years ago...

Today is July 27th. Today is the day that 3 years ago we finished packing up, we turned on a chandelier in an empty nursery in hopes that when we returned, we would bring a baby home. We left our home that day for an unknown amount of time. We moved to Dallas until we would bring our baby home or say good bye. We left with heavy hearts and tears. We left with hope and anticipation. I remember telling Jon that day, that when we came home again, however long it would be, our lives would be forever changed regardless of the outcome of Ella's surgeries. You see, we would either come home with a baby girl who had just gone through open heart surgery and had many special needs or we would come home with completely broken hearts to a quiet home and empty nursery that would never hold our baby. I was so sick and riding in the car was torture. I cried everyday most of my pregnancy, but as the end approached the tears seemed heavier and the joy of meeting her seemed greater. Such a strange mix of emotions. I prayed so so so hard for her life to be spared, I prayed for the chance just to look into her eyes and to tell her that I loved her.

Today, 3 years later, not only do we have a miracle sleeping in that very nursery right now, but I get to look into my two color eyed girl everyday and tell her that I love her, and I get the privilege of hearing her say that she loves me too. That chandelier still lights her room but pails in comparison to the light that shines from our baby girl's sweet spirit. As we made the drive to Dallas yesterday for Ella's post Fontan check up number 2, I couldn't help but reminisce of that drive 3 years ago, the fear that I was feeling. We got a great report at her appointment, Ella is doing amazing, and as we drove through the cloudiness yesterday we came to a spot where the sun was shining through. I pointed the sunshine out to Ella and then she began to sing "You Are My Sunshine", as she sang she insisted that we "sing together" so the three of us sang the song that I sang to her nearly everyday of my pregnancy, (starting the day after we thought we were miscarrying her) and I wished I had been able to see this moment three years ago. I wished I could have known how amazing and beautiful my baby girl would be.

Today, as I reflect on what I was doing 3 years ago, and what I am doing today, I have tears because my heart is so full. Thank you Lord for giving us this amazing blessing!

Last pic at home!

Pictures from ultrasound once we arrived in Dallas... She was being shy :)

My beautiful Girl yesterday! What a difference 3 years makes!

Ella's appointment was great! We got to drop one of her diuretics completely, she had decent sats and heart rate, blood pressure good, gained a pound (!!!!!!), NO tears, great x-rays, just a wonderful report! We go back in 7 weeks for another check up, please pray that all will go well, that the med change doesn't cause any complications, that she continues to gain weight and that her body continues to handle the Fontan circulation well. As we left the hospital Ella said "I am very brave!" it was so cute! She really was so brave, I have no doubt it was in part to your prayers for God to give her peace, so thank you so very much for praying for her! We are just so thankful for your support through this journey! God is so merciful!

Thursday, July 25, 2013

Heading to Dallas tomorrow.

We are heading to Dallas tomorrow morning for a day of tests on Ella to see how her heart is doing since her last surgery. We appreciate your prayers for safety in travel, protection from germs, and good results from the tests. Ella is doing well, but her oxygen hasn't been quite as stable the last two weeks, we are hoping it stables out soon and that the results from tomorrow's tests show no problems. Ella's anxiety is always a concern of mine, I hate when she is so scared, please pray for peace. Also strength for Jon and I, the days we travel to Dallas are long. Ella has been talking about her last hospital stay some at random times. I let her talk about it but I don't bring it up, she has a very good memory and remembers details. It's hard to hear her say things about her stay and about things that hurt her, but she seems not to be traumatized too much while she is talking. She is still nervous when certain things remind her of the hospital and she still has some nightmares every once in awhile where she will say "no hurt, no hurt", but overall she seems to be doing well emotionally. We thank you so very much for your continued prayers for our Sunshine!

Monday, July 22, 2013

Our first post Fontan outing!

We were able to take Ella to church on Sunday! What a wonderful day! She was so cute in little pigtails and a big yellow flower in her hair. I was a nervous wreck, but wanted to go so we pushed through the anxiety and Jon was a great support to me. As we pulled into our parking spot Ella happily shouted "Church! Are we going to Church really?" Or something along those lines. She was SO excited! We walked in just as it was starting, which was fine since we planned to sit on the side... but the side we used to set on was full sooo we had to walk all the way across the church... in front hahaha during said awkward walk the worship leader/friend of ours went ahead a said "hi, it's good to see you guys!" from the stage. It felt good to be home, even if our arrival was a little more, shall we say, announced then we expected. :) I was curious how Ella would do sitting still and quiet since it had been nearly 11 months since we had been to church last. During the singing she danced some and beat the chair senseless, but did okay. A few songs in my sweet little girl started doing the "I have to go potty hold", not exactly very good manners to hold yourself, *note to self work on Ella's lady like behavior*, luckily daddy took her and she kept her panties dry.  Once the pastor got up on stage Ella noticed the microphones and asked Jon if she could have one... he explained that she couldn't have one right now, to which she said "can I just have one?" Really she had a valid question since the extra microphones weren't being used, hard to explain why she couldn't sing a song with said unused microphone. I just have to say the i-phone is a brilliant invention. Ella kept asking if she could paint, within a few minutes a new app was downloaded and she was happily "painting". I was able to listen to the sermon and she set stillish for a while. She then decided to set in the chair next to me where she showed off her flexibility by putting her feet straight up in the air over her head. Yes, in a dress. *refer to previous note to self* hahaha Throw in a few random claps and the "forgot to whisper" words and well, there you have it. Ella's first trip back to church! You know what? It was wonderful! No, she didn't sit perfectly still and quiet, but she didn't do too bad for a 2 (almost 3) year old, besides I don't think anyone would expect that of her anyway. It was wonderful because we got to see our friends, we got to take Ella somewhere besides to a doctor, we got to sit together and hear God's word surrounded by fellow believers, we didn't let anxiety keep us from going, we fought to trust God despite the fear. I can't think of a better first outing then to church to worship the King of Kings, the God who continues to give us more then we deserve. It was good to be back home! 

Wednesday, July 17, 2013

6 Weeks post FONTAN!

Today is a special day, a day we have been waiting for, for about 3 1/2 years. Today our sunshine is 6 weeks post Fontan!!!!! This is huge! 6 weeks post op is the point where you get the all clear after a surgery, the time where your sternum precautions are done, the chance for infection nearly gone, the last scab has fallen off, and you have made it past the high danger zone! She has made it past 4 heart cath surgeries and 4 open heart surgeries, she has surpassed all we could have hoped for! The last three days something has been wonderfully different, Ella's body seems to have finally adjusted to her new circulation and she went from satting 78-81 the last 5 1/2 weeks to now satting at 87-90! That is exactly where she is supposed to be! We are over the moon excited around here! I seriously tear up every time I hook her up to the pulse ox and see those pretty numbers indicating that my baby is finally getting the oxygen she is supposed to get. Her little fingers are pinker then ever and I am in awe at God's gift to us!

As many of you know the Fontan was the last scheduled surgery for Ella and we hope the last for a really long time, this basically means that at this point, now that her oxygen seems to have improved, she is as healthy as she will ever be. From here on out we get to begin to live life a little more normal! We will get to see some friends and family more! This new season is both exciting and absolutely terrifying at the same time! Because of Ella's special heart, she will always be high risk and of course her "life expectancy" is not what we would like, we have no idea what her future holds, but we know who holds her future! During this season we want her to really get to live her life and experience new things, all while keeping her as healthy as possible. We will take things slow and there will still be limitations, we know she will get sick and we can only hope her body is strong and will be able to handle sickness well. You can help by continuing to pray for her heart, her lungs, other organs, and her immune system to stay strong. You can also help by remembering to keep your distance from Ella if you or your family have been sick. Also we would appreciate your prayers as we adjust to living a little more outside our comfort bubble, this will be difficult for all 3 of us and just another time that we need to turn our fears over to the Lord and trust that He will protect and lead us just as He always has!

So today as we celebrate being 6 weeks post Fontan we feel pure joy and thankfulness at how the Lord has carried us, how He has strengthened us, how He has protected us. Ella really has made a near full recovery! She is eating better then ever and eating tons of table foods all different textures without gagging, she is drinking water all the time, she has energy she never had before, she also is behaving better again (after surgery she threw some fits and just wasn't herself so much), she is more like her old self everyday! We couldn't ask for more! Humbled and in awe of His mercy. As we start this new chapter our prayer is that Ella will shine her sunshine for the world to see the beautiful miracles of our God! Ella is really and truly a walking talking miracle, God is so good!

                    CONGRATULATIONS ELLA YOU DID IT BABY!!!!!!!!!!

Update on my sweet niece Brooklynn~~~~ Brooklynn is doing very well!!! She is off the ventilator and her lungs look good too! Please continue to pray for her to heal quickly so that she can go home!! We are so thankful for your prayers!

Saturday, July 13, 2013

Please pray.

Today I'm asking prayers for a new heart baby, someone very dear to my heart.

 Yesterday we got a call letting us know that my 5 week old niece, Brooklynn, was being taken by ambulance to Children's with a severely high heart rate of 280 bpm. Once she arrived doctors determined that she has something called wolff parkinson white syndrome (wpw). This is a congenital heart defect. This defect was causing her heart rate to sore to unsafe levels. When this happens it is called supraventricular tachycardia (SVT). She had an echocardiogram that showed her heart was only functioning at 15%. She continued to have problems through the night and all day today, then this afternoon things got worse and after giving lots of meds and trying to get her heart rate down, Brooklynn crashed and her heart rate dropped dangerously low. They had do to some chest compressions and put her on a ventilator. They started a central line but were unable to access an arterial line. She is stable now with a resting heart rate and she is on light sedation/pain meds. This is a defect that is usually outgrown and doesn't usually require any surgery, for that we are thankful. Please pray that God puts His angles around her and our whole family as we are dealing with yet another one of our babies fighting a CHD. Please pray for wisdom for the doctors and for my sister and brother in law as they advocate for their tiny baby girl. Please pray for her three big sisters to be comforted and at peace. We have no doubt that God is in control, but this is still a scary time. I'm so thankful that God prompted my sister to take Brooklynn to the doctor when she did, by following that gut instinct that the vomiting was more then a tummy bug, she saved her daughters life. Right now we just have to wait, wait and pray that her heart makes a full recovery from damage the SVT may have caused and pray hard that she doesn't continue to have these episodes of SVT. We don't take lightly the power of prayer, God is big, God is strong, God is faithful.

Please pray for Brooklynn <3>

Tuesday, July 9, 2013

Update with pictures!

Sorry it's been awhile since my last update! We are just over 1 month post Fontan! That is crazy to me since we planned to be in Dallas still! We were prepared for weeks to months in the hospital recovering and now it seems like we have been home a long time. I talked to Ella's cardiologist office this morning for our weekly phone check up. Overall Ella is doing very well, but she is still on the low side of oxygen. She is just about 80 all the time, but this last week she has gone as high as 89 which was super exciting to me since she hasn't hit that number since we left Dallas, but she also hit as low as 75 and is still about 80 most of the time. We are hoping we can avoid another cath surgery, but she really needs her oxygen to come up to avoid that. Please please continue to pray for her oxygen to come up soon!

Ella still needs to gain weight, but she is eating well, so I hope it's just a matter of time. She is sleeping better, and since we lowered her blood pressure medication again last week her cough is much much better. It is still there, but it is mild and doesn't seem to bother her any. Also her blood pressure is staying stable! Praise the Lord!

Please also continue to pray for her immune system to be strong, She will be venturing out more in the coming weeks and with her oxygen still being low, a sickness could mean a hospital stay.

We can't thank you enough for continuing to pray for our sunshine, we have officially made it past her last scheduled open heart surgery, but we are FAR from out of the woods. Ella will have future surgeries and possibly a transplant, we just don't know what or when and we hope they are in the far future. She is still very sick and always will be, we are just so thankful that despite the "terminal" future, God has blessed us with so much time already and we are hoping and planning on many more years together. Doctors say that this time is the best time of her life and the older she gets the more problems we will start to face. We are continually reminded to cherish everyday. We are blessed to know so many of you love and care about Ella as well!

Today is 1 month from my sweet Sunshine's 3rd birthday!!! We are just SO thankful that the Lord has blessed us with so much time with our miracle girl! Can you believe it?!? THREE! Just crazy that we are so close to her birthday. We are busy planning a princess party for our princess, and in general just living life together!

Ella had a visit from her new cousin on the 4th of July!

Then we went to watch some Fireworks! Ella just kept smiling and hugging us she was so happy!

"Daddy, let's dance together!"

She clearly is feeling better :)

She asked me to take her picture yesterday and it made me SO happy! She hasn't liked pictures since surgery because she associated it with x-rays (the nurses and techs call x-ray's pictures). She has started slowly asking for pictures again and it makes me so happy to know she is healing mentally as well as physically from surgery! 

Not sure how this is comfortable hahaha she forgets she is supposed to still be in pain from open heart surgery you know ;)

We have way too much fun together!