Friday, January 31, 2014

update on our little sick girl.

Update on Ella: She is hanging in there, but her oxygen did get pretty low today (low to mid 70's). Since she is not supposed to be below 85, it was obviously startling to see that number post Fontan. We are just watching her to see what she needs, but right now she is doing okay and is able to bring up her numbers with a little rest. If you remember we just had our oxygen supply picked up from the house earlier this month. That being the case, if she does get to the point of needing oxygen we will have to take her to the hospital. We are certainly not there yet, but she needs to keep her numbers higher then they were this afternoon. She is playing a smiling a lot so she clearly is not letting this sickness get her down. Fever is off and on but thankful her heart rate has been down when she isn't running fever. We appreciate your continued prayers for her to get well soon. As "mild" as this is, it has really affected her numbers. This just shows us again how fragile she is despite how healthy she looks on the outside. Thank you all for praying and checking in on her, it means so much!

Thursday, January 30, 2014

Sickness strikes.

It's official, Ella is sick. We took her to the doctor yesterday morning after she complained about her mouth hurting several times the night before. They did a strep test, but it was negative. Our doctor said her throat looked a little red though. Then this morning she has a sore throat, coughing, stopped up, runny nose, fever... :( This is only the second time in her 3 1/2 years that she has been this way, the first time post Fontan. Please pray. So far her oxygen is staying stable, although it was boarder line low this morning, it also hit a near record high! Her heart rate however is high. 150's-160's (normal for her being 108-130). This is the first sickness without oxygen support in our home, I'm nervous. I am encouraged that her oxygen is hanging in there, even if it was pretty low this morning, I'm not crazy about her heart rate though. I'm sure the fever, stuffy nose, and discomfort all are playing a role in the elevated heart rate, but I still don't like it. Her fever is not high at all and I expect it to climb, if it does, her heart rate very well may climb higher as well. High heart rate for long periods of time wear on the heart. With half of a heart that is already going to wear out long before it should, the last thing we want to deal with is something wearing it down even faster.

I am 99% sure I know where she picked this sickness up. At dance class, week 3. I noticed one of the other little girls in class coughing and sniffing quite a bit. I mentioned it to the teacher, and Ella was only near her a few times. Of course we did our usual antibacterial gel, Lysol, and even a bath as soon as we got home, but it wasn't enough. Now we can only hope that Ella handles it well, and that this builds her immune system so she will be stronger later without doing too much damage. We did our best only short of walking out of class altogether. I decided to let her stay. I prayed for her protection. She still got sick. One simple truth remains, God is still in control. He allowed her to get this sickness, I know He could have stopped it. I also know that Ella does have to get sick to build her immune system and that Ella is stronger now then she ever has been so it's time to let her do things like dance class and just do our best and let what happens happen. Is it easy? Absolutely NOT! I've cried, dealt with guilt, knowing I could have made her skip class and she would be well right now. I've dealt with anger towered the parents who chose to send there child to class sick, I've dealt with anxiety for what this means for Ella's future. I've felt fear of continuing on in our journey of letting her participate in group events. It makes me want to curl up in our safe little bubble and never see or touch another human ever again, maybe that sounds a little crazy, but that's just something you wouldn't understand unless you had been through what we have. The truth is I am human and I feel all of these things, but It's also the truth when I say I trust that God is in control. I choose to speak truth to my scared self. I choose to believe truth.

Ella is in good spirits. Smiling as usual. She is self-limiting in play and there are a bit more snuggles. She is breathing a bit heavier plus a little bluer when she plays, but overall she is handling it like a champ. God was good to give her some rest last night with minimal coughing. This whole thing may very well be just as hard on her mommy's heart as it is on hers. My goodness I love that girl. The unknown is so yucky sometimes. Please be praying! I know this is minor in comparison to open heart surgery, but it is scary. We just don't know how long this will stay in her body, and we don't know what all it will entail before it's over. Please pray that we have wisdom, that her body holds up, that her oxygen stays acceptable, that her heart rate comes down, and that this ends quickly. Thank you all so much for the support and prayers. This is a new season, a season of sickness, a season of stretching our comfort, and a season of continuing to choose trust.

Please also be praying for my niece Brooklynn, she is 7 months old. This is the little heart buddy that Ella has in our family. She is also battling a worse illness and has a very high heart rate (180's-190's) and has a doctor apt this afternoon.

You are all such a blessing to us, thank you for praying!

Tuesday, January 14, 2014

BIG update!!

This last week was huge. The healthcare company came and picked up Ella's concentrator and all of her oxygen tanks! I had so much fear and joy as I watched them load the tanks and drive away. This is the first time in Ella's life that we haven't had oxygen available to us in our home. Although it's been rare, on occasion we have had to use it to get us through episodes of low oxygen. Ella has been stable with her oxygen for the most part and so it was time. Seeing them go I felt like we were losing some of our independence, since if she needs oxygen now we will have to bring her to a germ infested ER instead of being here in our home. At the same time, seeing them leave was like gaining independence. Like they were a weight I had been carrying, and seeing them leave felt so good!! We praise God for this new milestone!

Yesterday was the third anniversary since Ella's Glenn surgery (which was her third open heart surgery that she had at 5 months old) so we celebrated. We celebrated as we took Ella to her first dance class!!!! It was a beautiful day! She is taking ballet and tap!

This was Ella's first ever group activity, this was the first time she has fully engaged with other kids her age, this was the first time for her to hold hands with friends in a circle, this was the first time for so many things! I talked with the teacher before hand about Ella's heart and about our risk of her getting sick and how this was a big step for us and our anxiety was high. She was very understanding and reassured me that they sanitize the bars and have the kids use antibacterial gel before each class and watch for symptoms. She also told me they would be extra mindful with Ella's class.Yesterday was a moment I don't think I'll ever forget. I felt every emotion under the sun while a rush of memories of all that we have faced and hopes for the future flooded my heart and mind. God held me yesterday. He gave me strength as I let my little girl go further from my care in the real world then ever before. I let go of some of the control that I want to hold forever but know that I can't. I cried. I am crying now, just reliving that moment yesterday. It was so much more then just a first dance class, this was a testimony of God's strength in us. This was a pot of gold at the end of a rainbow after a long 4 year storm. This was normal. This was an outing that I stood in the corner of the room, only observing, as my miracle introduced herself boldly to new friends and caught on to the things the teacher was teaching. I just stood there with tears streaming down my cheeks and a smile a mile wide. I felt like we made it. We are post Fontan and now, we get to live this life in a whole new way with her however many days the Lord sees fit to give us, we pray for many more years. Her life is unknown and she is "terminally ill" but I'm not sure I have ever seen anyone more full of life then our sunshine! God has been so very merciful!!!!!

videos of Ella dancing:

You all have walked this journey with us through prayer and we thank you! We thank you for going to the Lord on our behalf as we know He chose to work many miracles in Ella's life and as a result we got to have this amazing experience. Now we pray and ask you to join us as we are venturing out more for God's continued protection over Ella's health and ours as we care for her! For wisdom in finding that balance of letting her participate in the outside world of yucky germs. Pray for her heart, lungs, liver, and immune system to stay strong! Pray for my anxiety as I learn to switch my mindset and for Jon as he strives to lead us in the way that God wants us to go. Your prayers and support fill our hearts with thanksgiving, we are so grateful for you! Seeing these pictures again today, I am reminded of the day I set in the doctor's office at about 25 weeks pregnant, where we found out the extent of the complexity of our unborn daughter's heart, and that she only had a 20% chance to live. That is the day I was offered an abortion. Today I mourn for all the mommies who have received bad news about their unborn child and choose to abort not knowing what could have been. Today I mourn for those who chose to fight for their child but had the outcome that we feared we would face. Life is a gift however long or short it is. Feeling thankful that I was raised with the understanding of the sanctity of life. My child is not a statistic, she is a child of the King perfectly created to bring Him glory! Praise the Lord!