4 Months post Fontan!!

Today is 4 months since we took Ella in for her 4th open heart surgery. It seems like forever ago because she has grown and changed and so much has happened since then. Ella is just doing so great post Fontan! We are excited to finally have stable oxygen levels, high energy, and a mostly pink girl! Of course this is not a "fix all" surgery, and Ella's future is still very unknown and she is high risk for loads of things, but we have been told that the next 8 years or so will most likely be the best years of her life so we are soaking up the moments!

 Life has been good, Ella is fully recovered from surgery as far as we can tell, she is full of energy and is back to her sweet self. She is constantly saying the cutest things and keeps us laughing. Today she helped me make some pumpkin muffins and asked me if we could dance together, of course we had to slow dance in the kitchen because moments are precious and time spent dancing with her is time well spent. She is really into holding hands lately which is pretty much the best thing ever! She goes potty all by herself now and she is still always giving lots of random hugs and kisses and "i love yous" out to us. We have a happy little family, blessed beyond measure. Jon and I often just sit and laugh about how amazing Ella is, how kind and smart, funny and imaginative, how thoughtful and sensitive, how neither one of us can ever get enough of her, how she breezed through the "Terrible twos" and so far has only had a very small amount of fits "as in I could probably count them on my fingers" her whole life, most of which came right after open heart surgery and a move that happened back to back. Seriously she is AMAZING! She must have had a dream a few nights ago about her surgery because when Jon got her up that morning she pulled up her shirt pointed at her scars and started talking about the details of her hospital stay. It broke my heart when he told me all the things she said, but I was thankful she didn't seem upset by it, just told the story exactly the way it was. She has come a long way from the crying nightmares that were so bad at first.

 As we have entered the flu season we are nervous! It's the hardest/scariest time of year for a heart mom. Ella has had one cold and she had Roseolla a few years ago, but, by God's grace, those are the only illnesses she has ever faced. Both of them hit her pretty hard. She is bigger now and stronger and she has a higher oxygen baseline then before, so we are hopeful she could fight most illnesses that might get to her, however this is new territory for us and we really are scared to find out how she will do. We know sickness will be harder on her then the average "healthy" child, but we don't know if it will just take her a few extra days to heal or if It will be bad enough to put her in the hospital, or worse take her life. We ask that you do what you can to keep Ella and others like her safe. First please get your flu shot! No, it is not 100% effective but it DOES make a difference. Please WASH WASH WASH your hands, so many germs are preventable if you use proper and frequent hand washing techniques. Remember to cough or sneeze into your arm not your hand. If at all possible stay home if you are sick, if you have to go out, be mindful of those around you and do everything you can to keep your germs to yourself. Lastly, if you see us in public, please don't touch us or Ella. As much as we love you, we don't love your germs ;) You may feel just fine, but you can still be carrying a sickness or disease without knowing it. 

I realize Ella will get sick, and probably sooner rather then later. We have fought to save her life and to protect her life so that she could someday fully live this life God has given her. We have received criticism over the years on how we choose to care for Ella, especially in the germ department, but so far we have truly felt The Lord leading us in our decisions and looking back we have seen over and over again how those decisions may have very well saved her life. We are so thankful for those of you who go out and get the flu shot, for those who remember to keep some distance to make us more comfortable. Trust me, it's not easy making the choices we have to make for Ella, it is especially difficult during the flu/holiday season, but she is worth it, worth it all. We ask that you remember to pray specifically for strong immune systems and good health for our family this year, and as always wisdom as we continue to do the best we can raising this miracle blessing. We thank you all for continuing to pray for us, even when I don't update as much as I used to! Your support and prayers make a difference!

                    

           "I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be!" 

                                   

   I got Ella up from her nap and wanted to surprise her that daddy was home from work, so I asked her "who is your best Friend in the whole world?" her answer, "dad!" I said "guess what? Daddy's home from work!" That was followed by a happy surprised look and a cuddling on the couch watching toons. :) I love them together! 

Update on Ella's appt.

I still don't have my computer yet, but should have it back soon thanks to my dad for working on it! 

Ella's appt went well, she has gained a little weight and is almost back up to her pre Fontan weight! Ella chatted it up with everyone and was pretty good during all of the tests. The tests all looked so good we don't have to go back until the beginning of April, unless we have concerns before then. That is nearly 7 months!!!!! That is by far the longest we've ever gone between appts., so we are thrilled about that! Ella's appt. was on the 13th which is also the same day 3 years ago that we brought our baby girl home for the first time! It was neat to drive that same drive three years later to the day and just think about life then vs. life now. Ella did have a nightmare last night, but they are far less frequent then before. Overall we got a great report and Ella is doing very well! Praise The Lord! 

Jon and I celebrated our 6th wedding anniversary on the 14th and got to go on a date while Ella got some much enjoyed time with Nana! Ella also got her first big girl haircut at the salon! She was so brave about it all. I'll try to post some pics once I get my computer back! Jon also took Ella on her first "daddy date" and oh my goodness they were cute! he took her to get ice cream and then shopping where she got candy, jewelry, and a new hair bow! Ella is really blossoming in her personality, and I love sharing her sunshine with others and seeing the happiness she brings to them!

As hard as it is to believe that it's already that time of year, it is mid September and it's FLU SEASON. I heard today that there have already been some cases of the flu in the city. We ask that you PLEASE get your flu shot, if not for yourself then for all of those around you that the flu could be fatal for. Also if you are sick, stay home. Another thing you can do this season to help you and others stay healthy, is to remember to wash your hands often and use your arm to cover a cough not your hand! 

We really appreciate your continued prayers, especially during the flu season and as Ella is being exposed to more germs then before. We know that something can go terribly wrong at anytime with Ella, so we always cherish your prayers. 

Heading to Dallas on the 13th

Sorry again for the lack of updates. All is well with Ella! Our computer was hacked and is needing a pretty major rehaul so I don't have an easy way to update right now. 

We will be heading back down to Dallas on the 13th to have Ella's next check up. We don't anticipate any complications, but we will be dropping one of the doses of lasix she is currently taking on the 6th. At her appt. she will be getting some x-rays to check for fluid build up in her lungs. Please pray with us for strong lungs and no fluid! Also, as always, we ask that you pray for safety in our travels to and from Dallas, and also from germs while we are there. 

I'm so proud of Ella! She is a remarkable person. As she grows I am starting to see glimpses into the girl and woman she may one day be and I am humbled. She has so much strength and she is so smart, she isn't afraid of others, and she is kind. I know God has already used her life in great ways, but I can't help but think about the possibilities that He may have for her future! As her mom I feel the weight of the responsibility that is ours as Jon and I seek to raise her to be the woman God has created her to be. We know that God is the reason she is doing so well. It is ONLY by His mercy and grace. 

She can now count to 30 with only a little help, can do very simple addition and a few other early math equations, knows all of her letters and sounds (mostly), knows all shapes and colors, can undress herself and mostly dress herself, she is day potty trained and mostly dry at nap, she is eating so many more solids since her last surgery... Etc. the list goes on and on and she just turned 3 last month. I am in awe of just how far she has come.

I am enjoying Ella growing up so much and at the same time missing her as a baby. She was such a wonderful perfect baby! Always smiling, happy, content. Now that she is older and has so much energy from surgery she isn't always as easy as before, but still happy and wonderful, just in new ways. My mom always taught us to treasure every age because they all are special in their own way. That is so true. Ella may not be as easy every single moment of everyday as she used to be (although I can honestly say she is still a VERY easy child), but it is so rewarding to have a conversation with her and to hear her heart and mind. They aren't long detailed conversations, but they are enough for me to get to know who she is and how she is feeling. I love that about this age. We have had more moments of disapline then before, but with that comes the strengthend relationship when the lesson is learned. The chance to snuggle after the hard part of the lesson. To confirm my love for her and to see her love for me grow. She told me the other day in the sweetest voice as I was cradling her and looking into her beautiful eyes "I'm not a baby anymore, I'm a big girl Ella" oh how true that is. Of course she is and always will be "my baby", but she is no longer a baby. 

Thank you all for continuing to pray for our Sunshine! 

Ella is 3!

 It's been a long time since an update, sorry about that, life has been busy! We moved into our new home on August 8th and we are loving it here. Ella has adjusted so amazingly well! August 9th we celebrated our miracle's 3rd birthday and it was just SO much fun! Before I post all the birthday pictures, I'll give a health update.

Ella is doing better then I could have imagined. She is having no issues at all. We are loving being post Fontan! Ella's energy is amazing. We knew that she was supposed to feel better post Fontan but we also knew that with her mystery problems she may have been much worse post Fontan. My girl who used to just walk across a room pick up a toy and walk back and desat is now able to walk until I wear out bending over to pick things up constantly. The other day I took her for a nice long walk outside and she never once got tired or turned blue. When I got her home I checked her oxygen level just to see what it was after so much activity. She was at 85! The other day I checked her at complete rest and she hit 96!!!!!!!! By far the highest I've ever seen her oxygen level!

 She is for the most part hanging around 88, which is perfect. The other day she looked blue to me so I felt her hands and they were really cold, once she started running around she warmed up and turned pink again. I told Jon, that's the first time activity actually made her pinker!! :) We go back for her next check up on Sept. 13th and since Ella is doing so well we get to drop one dose of her lasix starting Sept. 6th. Ella did have 3 shots yesterday to start catching back up on her immunizations and her little legs are really sore, but she is a trooper.She also had her first trip to Braums after shots and it was such a fun moment! Ella hasn't been many places, and starting to step out into the world a little bit is scary, but going for ice cream was worth it! Once we got home she was extra cuddly so we snuggled up and watched "Finding Nemo". I loved the cuddle time.

 Overall we truly couldn't ask for more, God has once again blown us away by the results of this most recent surgery. We are excited for her future, and we pray it's long and full of life!

Now on to the fun party pics! 

             (Last pic with my 2 year old 2013)  (Last picture with my 1 year old 2012)

We always sing happy birthday to her as soon as she wakes up :)

Ella's cake was donated through the Icing Smiles Organization! This cake was done by https://www.facebook.com/SugarBakersOK she did such a great job! We are so thankful for her kindness to our family!

 It was so much fun to watch Ella really interact a play with other kids!

We had some special heart friends that we were so happy to see! 

 Ella got to hold a baby for the first time!

We took the opportunity to take a pic of all the grand kids and their favorite Nana! 

Happy 3rd Birthday Sunshine, you really do make everyday SO much brighter! 

Thank you all for continuing to pray for Ella's heart to stay strong, for her immune system to be strong, for her other organs to hold up despite the hard blood flow, for good results at her upcoming appt. and for wisdom for Jon and I as we make decisions for her now and in the future!

I owe you an update!

So much to share! So many pictures, but I don't have Internet right now so it won't be today. Just wanted to let you all know we are here, Ella is doing well, and I will be updating with more details and pictures as soon as possible! Thank you all for your continued prayers! Ella had a wonderful 3rd birthday! 

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!

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!

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! 

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!

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>

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!

update on Ella's cardiology visit yesterday

We went to Dallas yesterday for a check up, and it went pretty well. Ella's blood pressure is stable, so we are hoping to lower her blood pressure medication next week, also her x-rays are still stable so we also got to drop one dose of diuretics a day! We are down to 3 doses of diuretics a day now! Her weight is still down, but she is eating a little better so we are hoping that picks up soon.

Our biggest concern right now is that her sats are still a little lower then what we were hoping and expecting. She is satting 78-81 for the most part, and while that is a little low for post Fontan, we are thankful she is no longer dropping dramatically with activity. They told us it could take 2 to 3 months before Ella's sats completely settle out so we are praying they come up by then. If they don't come up in the allotted time we may be looking at another cath surgery to just make sure everything is functioning properly since surgery. We would love for you to pray with us that this is not needed!

Ella still has a small cough from her blood pressure meds, but it's not nearly as bad since we lowered the dose, she is still having some nightmares, but not every night, she is still vomiting some, but that has also gotten better. She has vomited more then she was since our appt. yesterday since it is typically fulled by anxiety, but overall she is doing very well!

God has been so merciful to give us a smooth post op recovery so far, please continue to pray with us that she stays healthy while her immune system rebuilds and also that her lungs will stay dry enough, that her blood pressure stays stable, and that her appetite will increase! Thank you all so much for continually praying for our sweet sunshine!

                                        She was worn out after her big check up!

                           

Improvement!

~Happy report today~

Ella is doing well! We are so thankful her cough is decreasing, it is still there, but lowering her dose of blood pressure meds has helped significantly. As the days pass her cough should continue to improve! When we lowered her dose of medication we had to start checking her blood pressure everyday to make sure that it stayed low enough. Praise the Lord it has been stable! Her nightmares seem to have dropped off too, I guess she could still be having them, but they aren't waking her up anymore every night. She is still vomiting some, but her appetite is a little better. She is drinking lots of water so that is good!

 We are nervous as we wait for July 17th which is 6 weeks from surgery and typically the highest risk for something to go wrong with her new circulation. It is also the time frame it typically takes to rebuild her immune system from being on bypass.

We are just so very thankful for how well Ella is doing, of course we have had our setbacks and bumps in the road, but it seems that things are finally smoothing out a little! As of right now we plan to head back down to Dallas on the 28th for her next follow up, but I will be calling to them tomorrow just to touch base on how she is doing.

Please continue to pray that she doesn't get sick, that her cough completely goes away, that her vomiting stops, that her incision remains infection free, that she will begin to gain weight soon, and that we will have wisdom as we continue to learn and care for Ella and her new circulation!

We are so blessed that you all continue to life up our sweet sunshine in prayer as she heals!

Home again!

What a long day! We drove to Dallas this morning, had our appt. and then drove back home! That's 7 hours just driving time, but it's good to be home!

Because Ella was having such high blood pressure after surgery, they had started giving her a higher dose of her blood pressure medication to lower it. Today her blood pressure was too low, so we think what might have happened the other day is that her blood pressure was way to low and caused some problems. Also a side effect of this medication is sometimes a cough. When Ella first started this medication she was a baby and it did give her a cough, but it wasn't near this bad and eventually her body adjusted to it. We are hoping that her body will adjust to the higher dose. That being said, we are lowering her dose some to hopefully help her cough and regulate her blood pressure a little better.

Also we are lowering her dose of diuril (which is one of her diuretics to dry out her lungs) since her x-rays are still looking stable! This is a huge praise! The wet lungs can be such a hard battle! Ella is on 4 doses of diuretics a day to try to keep them dry, she is so dry, her eyes are a little sunken in. So we are glad we get to cut back some on that. Prayer request will be that her lungs stay stable even with the lower dose of diuril.

Ella is still losing weight due to the vomiting and lack of appetite. She is also having lots of gagging and dry heaving, from her oral aversion from being on the ventilator, she is also still dealing with the bad cough, all of which are very painful just after surgery. We would love for you to pray with us that her vomiting/gagging/dry heaving/coughing all subside soon and that her appetite will return!

As well as Ella is doing, she is only a little over 2 weeks out from major open heart surgery and her body needs a lot of adjusting still. God really is helping her along the way and we are so thankful! Please keep her in your prayers as her mind and body continue to heal! Thank you!

Our friends decorated our house for our homecoming the other day! 

Heading back to Dallas

We are heading back down to Dallas first thing in the morning to see Ella's cardiologist. We packed a bag just in case he wants us to stay in town for awhile. To say I'm disappointed to be going back just two days after getting home is an understatement, but seeing Ella with sats in the 50's, blue, low energy, and coughing so badly she vomits we certainly know it's the right thing to do. As always, we appreciate your continued prayers so much more then you can possibly know! 

Special prayer request that Ella gets some much needed rest tonight and a break from the coughing please! 

update

Ella scared us a little, but seems to be stable now. We have only been home about 24 hours and we nearly had to go right back. With Ella's new circulation, they would like Ella's sats to be above 85, they are okay if it is 80 and above, with lots of activity they will allow 70's (even though they don't like it) as long as it comes back up fairly quickly. Today, in addition to having less energy, Ella dropped her sats into the 50's. She was really blue and had only walked from the bathroom to the living room (in our super small house). They are definitely concerned, but after some time resting on oxygen she stabled back out. With the approval of her cardiologist, we are going to wait until Thursday to go back to Dallas, unless of course things get worse tomorrow. At this point she is back to her low baseline and off oxygen. We were supposed to go back on the 28th, but under the circumstances her cardiologist felt like it would be best to see her sooner. We ask that you continue to pray as we face this scary part of learning her new normal. Also her cough is really bad, prayers for that are also appreciated, between that and her nightmares, her sleep is not as restful as we wish it was. Again thank you all!

Pray

Please pray, Ella is having some low oxygen right now. Thank you!