Friday, February 25, 2011


Ella's appointment went well today! She hasn't lost any weight and may have even gained a few ounces, it was a different scale so we don't know for sure, but this is GREAT !!!! That being said... NO FEEDING TUBE, for now anyway! Ella also had an EKG and that looked good! Our main concern right now is her diaphragm. We need God's healing hand to touch her right diaphragm, she will be on oxygen for however long it takes for it to be healed or if for some reason she starts having problems we will consider an additional surgery to tack it down. Until this diaphragm is healed we are cautioned to keep her as healthy as possible because if she was to get sick and get pneumonia it would be REALLY bad. So although Ella is still struggling to eat, she did eat 5 1/2 ounces in about 15mins. when we got home today, and it was taking 1 hour or more to get her to eat 4 ounces!!! THAT IS AMAZING! Thank you for your continued prayers for our family!

Thursday, February 24, 2011

prayers please

We could really use some prayers tonight, Ella is not feeling well at all. We aren't sure what is hurting her but she isn't eating again. It took Jon and I both an hour and a half to force 3 1/2 ounces down her (lots of tears). The bad thing is if we force her too much she will develop an oral aversion and add a whole new set of complications. Tomorrow is the cardiologist appointment where we will determine if a temporary feeding tube is going to be needed. We do not want to go that route at all, it feels like backsliding, but we know the Lord is in control. On a side note I am needing your prayers for myself as well. I am battling multiple physical struggles, nothing compared to what my sunshine has faced but certainly trying for sure. I have not been handling all the stress well lately and my body is letting me have it! So knowing that I tend to get sick when I stress due to it weakening my immune system I am asking you to pray for peace, strength, and health. I am feeling so much guilt lately with all this anxiety, mostly because 1-I know I am supposed to give it to the Lord, and 2- Ella's cardiologist thinks she is experiencing stress due to all she has been through. I guess I feel like if I am stressed she feels stressed and therefore I am ultimately causing her pain! Can you say STRESSFUL! I stress more about not stressing than just about anything else ugh! Anyway long story short BIG DAY TOMORROW and we could really really use the prayers!

Wednesday, February 23, 2011

6 weeks post Glenn!

Well tomorrow is officially 6 weeks post Glenn!!! This is a big praise, the first 6 weeks after surgery is always the most critical! We will be seeing Ella's cardiologist on Friday, please be praying she will have gained weight! After we started her new meds and stopped some of her older meds, her vomiting slowed way down and her eating increased, although she isn't where she needs to be yet, she seems to be doing a little bit better. It may seem silly, but I am so looking forward to giving Ella her first REAL bath! She has never been able to have her whole body in water because of her incisions healing! Unfortunately Ella's diaphragm still has shown no improvement and therefore the oxygen is still on 24/7, this is the main reason Ella is still not being able to have visitors. May is the official end of the flu season, I have no idea what we could be facing at that time, but Lord willing we may be able to begin a few outings with Ella! I finally heard from Ella's cardiologist a few days ago, and Ella's blood work came back all clear! I have been so proud of Ella lately, she has been sleeping so well, she goes to bed around 8 and gets up right around 7:30a! This is great for her, unfortunately I am so accustomed to waking at all hours of the night to check on Ella, give her the passy, turn off the oxygen alarm, fix her nose cannula... etc. that I just don't ever seem to get a full night's rest. I guess at some point I will make it through a full night of sleep without waking with a fear as I quickly sit up to look at her monitor just to make sure her heart is still beating... maybe... but maybe just maybe this is the rest of forever for a heart mom. Well I'll leave you now with a request that feels so repetitive but too important to leave unsaid, please continue to pray for our sunshine, she has so much yet to face and she is just so small. Thank you, your prayers truly mean more to our family than you will ever know!

Thursday, February 17, 2011

A sunshine day and a HUGE PRAISE!

HUGE PRAISE- Ella didn't throw up at all yesterday and hasn't yet today! Also she has been taking 4 to 4 and a half ounces at each feeding (almost double what she was eating!) The Doctor told us the new meds wouldn't kick in right away, so I really think it's one of the meds we stopped... and of course PRAYER!!! We had a great time this evening as a family and packed up a blanket, some snacks, switched Ella over to the portable oxygen tank, grabbed the stroller and went out to have our first family picnic!!! Thank you Lord for such a beautiful day and such a great day for Ella's tummy!! Have a wonderful day friends! Thank you for prayers, they are working... GOD IS WORKING!

we are still waiting on the results of Ella's blood work.

Wednesday, February 16, 2011

update on the doctor visit

We saw Ella's cardiologist today and had an EKG, an echo on her heart, an echo on her diaphragm, she had to get blood drawn, we were out for 5 hours, but she was a trooper! We don't know why she has a decreased appetite, but she hasn't gained any weight in the last 3 weeks, and she has grown 2 inches. Her cardiologist decided to stop 2 of her meds, and start her on 2 new meds because after talking to a GI doctor they came to the conclusion that she could have gastritis (ulcer) and because of this she could be developing an oral aversion. This could be causing the vomiting as well. If this is the case we may need to consider a feeding tube temporarily to help her gain some weight so that her immune system doesn't become suppressed. Dr. Ward said that when we see him on the 25th we will see if the new meds have made any difference and see if she has gained any weight, if she is doing better we can wait on the tube, if things have continued as they are now or if they get any worse we will have to admit her into the hospital to try to figure this out. Please be praying for her stomach to heal, for her new meds to work, for her to not have any problems because of the meds she was taken off of, for her to gain weight, for her to not develop a severe oral aversion,  for her diaphragm to heal, and for us to find answers! So now we just keep going and praying that this changes soon! Thank you all for your continued support.

please continue to remember Emma, Lyric, Kaelyn in your prayers as well.

Tuesday, February 15, 2011

Ella's Fitst Valentine's Day

Well Ella had her first Valentine's Day. After her bath I was getting her dressed and I wanted something "Valentiney" To my shock I did not own one outfit for her with hearts on it!!! She had some before but she has outgrown them all. So a pink outfit it was! Anyway she still looked adorable of course! In other news, Ella tried cereal for the first time Valentine night, she did great lol it was SO cute! I talked to the cardiologist today and he wants to see Ella tomorrow morning. She is still not eating well at all and has starting vomiting :( she isn't getting her heart meds when she throws up. She still has her paralized diaphragm, and we are praying we don't have to go in for aditonal surgery to fix it. Anyway even with the oxygen and the eating problems she is her bright, smiling self! We ask that you continue to pray for her healing and protection from any sickness!


Wednesday, February 9, 2011

Look who turned 6 months TODAY!!! :)

Ella's birthday Aug. 9, 2010
2 open heart surgeries 1 cath surgery

Ella 1 month old
 no lines and out of the hospital!

2 months
learning and growing at home!

3 months
Our happy girl!

4 months
continuing to get strong!

5 months
1 cath surgery, 1 open heart surgery

6 months
at home on oxygen but doing great!

What an amazing 6 months this has been and what a stamp this little girl has made on this world already! We can't believe she is six months old!!! Please continue to pray for Ella's diaphragm to heal so that she can get off the oxygen, also please pray that her cough will go away soon (this could be a side effect of her blood pressure medicine.) Also Ella is losing weight and still not eating well, we have still a few things to try, please pray that we will have wisdom on what route to take for her nutrition. She has started having some vomiting again and she is getting maybe half of the amount of food daily that she should have so we have no room to lose ANY of it. :( Thank you all for continuing this journey with us in prayer! The Lord is so merciful!!!!!

Friday, February 4, 2011

Our sunshine is growing

Ella is doing well, she is still on oxygen :( We are so ready for her diaphragm to heal, please continue to pray that it will heal on it's own quickly! Ella's eating is about the same, she is eating about 4oz. every four hours. That wouldn't be near enough if we weren't adding the extra calories, but with the extra calories we are getting by. Also some exciting news... this week miss Ella is getting her first two TEETH!!! So exciting watching her grow, but hard to believe how fast it is all happening! Thank you all for your continued prayers for our sweet baby girl :)