Tuesday, May 22, 2012

Great report!

I just have to start this post with a huge PRAISE THE LORD! Ella had her cardiology appointment yesterday. It was the first appointment we have had in 6 months,  which is the longest we have ever gone between appointments by a few months! We heard such wonderful news! Ella is "doing better then any hypoplast at this stage that he's seen!" Giant squeeeeeel! This is amazing because he is the most experienced cardiologist in Oklahoma and Ella has a complicated case that makes her higher risk!

Also our sweet sunshine weighs 27 1/2 lbs. and is 33in tall!!!!!!!!!!!!!! That is in the 80th percentile!!! He told us " heart babies are usually small babies, we just don't see babies here in the 80th percentile!" The whole appointment was filled with "guys she looks just great" and "I mean really fantastic".

Not only is Ella in the 80th percentile of weight and height, but she has done this all by mouth, she has only had the feeding tube after the norwood and glenn for recovery!! Most of these sweet babies struggle with eating so much that they have to have most of, if not all, of their feeds by tube. We have been so very very thankful for this gift!

 Also, Ella's oxygen  had been in the low 80s, which is just fine, but lately on our home monitor she has been upper mid 80s. Yesterday when they checked her she was staying right around 88-89 and even hit 90!!!!!!!!!We are amazed and humbled by her AMAZING journey!!

Ella usually has SEVERE anxiety with all of her appointments, I mean literally shaking badly and full blown anxiety attack. Yesterday when we walked into the room where she is to be weighed /measured/ blood pressure checked/ oxygen/ heart rate, we braced ourselves for the usual melt down and Ella surprised us all by happily stepping on the scale and standing still with a slight smile, we moved on to have her stand against the wall for her height where she stood with slight concern while the man lowerd a board on her head but still no tears or "all done's", then we moved on the checking her oxygen, thinking to myself "this one shouldn't be too bad since we do this at home all the time", then I saw that they had a big plastic clip to put on her finger verses the small soft cloth that wraps around her fingertip at home. I thought "oh boy this isn't going to go well" I said "can mommy put this pretty on your finger?" she slightly hesitated, and then, like a big girl she went for it... no tears, just curiosity. Last of all was the blood pressure cuff, in other words her enemy. She HATES the blood pressure cuff. Well this one was too much, she started to cry and say "all done" we tried forever to get that stupid machine to work, but alas it was taking too long and the blood pressure cuff had to come off without a reading. But she never lost control like usual, she just continued to ask us to take it off as she cried. (side note, today she is playing with my knee brace and wrapping it around her leg and saying "pressure" )We were SO very proud of her being SO brave!

Next we moved on to the room where we had to have her EKG. There were some tears again with the cold gel stickers, but once the EKG was in progress, pictures on my iPhone of Ella kept her occupied (she sure does like to see her own pictures hahaha) then when it was time to take them all off, more tears... those stick very well and they hurt, but she was still very brave and thankfully it was done quick.

Next we visited with the cardiologist, he was very impressed and asked if we thought Ella would be up to doing an echo, because these kiddos at this age sometimes have to be sedated for Echo's because it's hard to get them to be still and not cry. We said we thought she could do it, and so we went to the echo room. She wasn't thrilled about laying down on the table, but I laid beside her and bribed her with my iPhone (thinking it will be a lifesaver for future visits :) ) Again I started her birthday video that her uncle Brandon made for her, and she laid there like a big girl content watching her life flash by in pictures. As I laid by her side watching her pictures and giving each picture an animated narration, I was thankful for how far we had come, God is so good!

After the echo was finished and reviewed, it was another visit with the cardiologist. More good news, "the echo looks GREAT guys"!! I was able to ask all my questions that had had written down to bring with me (yes I'm THAT mom) He was patient, and thorough when answering every question. He told us that Dallas would like her to be about 30lbs for her next surgery. Since she is almost there he told us he would text her surgeon in Dallas and let him know how great she looks and give him all the details that He will need to make the decision on when we will be going in for her next surgery. Because of how well she is looking her cardiologist thinks we are looking at next spring/summer but although unlikely it's possible to do it this fall if the surgeon thinks it needs to be that soon. That will give Ella time to get bigger, the bigger the better as long as her heart can stay strong until then! Her next appointment is going to be in Sept/Oct. he told us we could wait another 6 months, but we want to get her seen again before the flu season hits and also in enough time that if we have to go in for surgery she would, Lord willing, be out before the flu season hits (they don't want these kids in the hospital during the flu season if at all possible). So unless for some reason she can't make it to next year, we are looking at about a year until we have to go back!!!!!!!!! As ready as we are just to get  this last "scheduled" open heart surgery over with, we want what is best for her, and we are just fine with waiting.

We also got permission to.... drum roll please... start entering the world with her!!!!!!!!!!! I told him that I was concerned for her to get sick since she has been healthy for the last 21 months, he said "she looks so strong, I think she will handle it great". I told him of my fears of her sats dropping into oxygen distress ranges as with her 2 ear infections that she has had. He said he wasn't worried, and since her sats are so high right now she will be fine if they drop some. We are so excited to begin life with these new freedoms, but we are scared too! So for now we ask for your prayers for wisdom and protection as we SLOWLY begin the process of allowing her to get sick :( We will not purposely let her get sick of course, and she will still be sheltered some until  after her Fontan... who am I kidding, I think she will always be a little bit sheltered! hahaha.

So for those of you that will begin to see us more, remember that just because we are out does NOT mean that Ella should be touched ;) Also if you or a family member is sick I ask no BEG you to keep your distance! This is a HUGE step and adjustment for us as a family, and even though we are thrilled, it will take some time.

 We have poured everything we have for the last nearly 3 years into keeping this miracle alive and well, learning how to readjust our thinking is going to take time. We ask that you spare your judgement, and cover us in prayer and support. Just for the record if you feel the need to walk up and touch Ella without permission you may just get a fist in the face or a foot in the pants :) We will not be comfortable for quite some time, but just like every other hard choice we have made to protect her up until this point, we will continue to make the hard choices for her.

We aren't in this to win a popularity contest, we are just trying to be the best parents we can possibly be to the amazing gift we have been given. As we take our time easing into this new lifestyle, we ask that you don't push us to move faster then the pace we set. We ask that you don't take liberty to "help" us into the world by making us uncomfortable on purpose. We need prayers for strong immune systems, and strength.

Seeing my baby sick is going to break my heart. I will question our decision to have let her out, I will feel like a bad mom. I know the truth is that letting her test her wings (with the cardiologist's approval) is not being a bad mom, it is actually the best thing for her. I am truly EXCITED to see her become all that God has created her to be, and I know that every decision we have made to protect her up until this point is absolutely worthless if I can't trust God with her now. Her cardiologist thinks she is "so strong", he has faith in her ability to face this world and as her biggest cheerleader I will choose to let her live a full life despite my fears! She deserves every chance she gets to have more experiences! I never want my fear to cripple my judgement when it comes to her care. We do have fear, but we also have common sense and MANY doctor's consulting when it comes to her, sometimes limits have had and will have to be set to protect her, but the older she gets, the more freedom she will get to push her boundaries and fly beyond expectation!

She is a "pioneer setting the way for the babies that follow her with her rare condition". We are proud of her and we know that she will provide hope for those facing this journey behind her. It is so surreal to think back 7 years ago she wouldn't have even had a chance. They would have told us that our baby girl would die and we would have left empty handed. Surgery wasn't even an option... wow. We are so thankful that science has come so far and that we have an amazing team of doctors at CMC in Dallas.

So dear, dear friends, please rejoice in all of your answered prayers and don't let up, she will be facing a new mountain as we really test out the strength of her precious heart. May the Lord's will be done as we trust Him in a new way this season! Blessings on you our sweet prayer warriors! PRAISE THE LORD FOR HIS GOODNESS!


  1. What excellent news for an amazing little girl! She has definitely been the exception to the rule when it comes to HLHS. :) Enjoy your time OUT as a family!!!

  2. LOVE LOVE LOVE this update!!!!! You guys have done AMAZING with her!! Seriously! I totally understand the "no touching"... it's so so hard, and I'm not nearly as good at telling people "no" as I should be. Partially because I think "good" touches, emotionally, are super good for her (although she gets PLENTY of hugs from Momma!) I have steered her away from people with overactive hands before though,a nd told a few kids not to touch because of her special heart.

  3. Love this post!!! I am so happy she is doing so well and hope your family and friends understand about the no touching and all and if they don't maybe when you give them a good kick they will get it. :)

  4. OUTSTANDING news! You must be bursting with happiness. I like how the doctor in the photo actually looks like a doctor. And just for the record, I don't care much for the blood pressure cuff, either. :)

  5. Wonderful update. She is so cute in the photo with the dr. You all are doing absolutely the best for her. Just do what you feel you can do with the "out in the world" situation. Whatever you do will be right and just remember, some people have to be reminded about the "no touching" situation. That is just people and sometimes they just don't get it. Prayers continue for all of you. SHE IS A DOLL!!!!!!!!!!!!!!!!!! (I don't like the BP cuff either) But, I don't cry since I am a grown up!! HA!

  6. GO ELLA!!!!!!!!!!!!!!!!!!!

  7. Praise to God!! What amazing progress your little angel has made! So happy for you all! What wonderful news! Love the picture, too.

  8. I loved reading your blog Jon and Amy. I cried as I have lived through it all too. Our daughter is also a "heart" child and we have done all you have. She's tough and has never cried during anything. We have almost lost her several times. She is now 27 y.o. and had her annual cardiology ckup yesterday. Don't have to go back for two more years. Prayers always being said.

  9. What wonderful news! I know this has been a tough road for all of you. God knew that Ella was going to need special parents and you have both done an amazing job. Ella is a beautiful, curious, smiling child. You should be very proud of her. I am praying that God's blessings continue to rain down on you.

  10. OK Jon, get the weapons ready. SHE IS A DOLL. Poor daddy


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