Wednesday, September 26, 2012

Prayer request

Ella has an appointment in Dallas on Oct. 18th. We are so ready to have her full care there. One thing about her last appointment that I forgot to mention was that Dr. Ward said that it is possible that she is anemic and that could cause her sat drops. So instead of doing a blood test we are going to increase her iron rich foods for now, hopefully that will help and just be a simple fix.

Prayer request for Ella as she has been having diarrhea today, she threw up, and she is running a fever. At first I thought it was all from her anxiety from the doctor (it's not uncommon for her to have some diarrhea and or vomiting after a doctor appointment due to the anxiety she had) but since she is running a fever it makes me think it is more then likely a virus of some sort. Dehydration is very serious for her condition so I'm doing the best I can to keep her hydrated. We REALLY appreciate your prayers for her to feel better as soon as possible.

Monday, September 24, 2012

Doctor visit update

We took Ella in today to see her cardiologist. To say it was difficult would be an understatement. It's not that we received terrible news, but that it was very hard on Ella and it wasn't that helpful to us. Started out as usual, went in to wait, got called back and started with the weight check (praise the Lord she is continuing to gain despite her lack of appetite!), she was apprehensive and kept saying "okayyy alllll done" in a polite yet shaky voice. We then moved on to the height check where she stood tall and the nurse was kind enough to use her had to mark her height instead of the insainly loud, scary, block that is supposed to screech in place above her little head. She was brave but I could see the fear in her eyes and her little body started to show signs of anxiety. Next we took her pulse ox, although different then the small soft cloth that wraps around her  little index finger at home she was obedient as I placed the large plastic piece that encased practically her whole finger. By this point she really had been about as calm as she could, she was quite afraid and really couldn't hold in the anxiety that much longer, her pleas to be "allll done" increased in number and in desperation, almost a begging more then a question. Last but certainly not least was the blood pressure cuff. Ella despises the blood pressure cuff with all she has, it squeezes her little arm so tightly that it leaves multiple blood blisters in streaks around her arm, the worst part about it is it is all for nothing. They didn't even get a reading. As the machine began to automatically tighten again Jon just took it off and said "no, we aren't going to take it again." I'm always thankful that he is able to step in (he had to step in a few times for me when I was hospitalized too). She was hurting and afraid by this point and we still had the main part of the visit left to go. We were directed into a room to wait for the EKG tech. A man walks in, we had seen him before. Although he isn't particularly kind he usually does a fair job. Today Ella was just having a rough time (didn't help it was during nap time) we just couldn't seem to calm her fears. I put her in my lap as I set on the exam table she grabbed hold of my necklace out of instinct as it seems to be a security to her since I have worn it most of her life. Then the man abruptly starts trying to small talk with her by giving her one of the EKG stickers... she didn't fall for that, she knew what was coming. So like someone who has never worked with children he starts putting the stickers on her as fast as he can, I guess thinking that it would just be over, but instead only added to her hectic fear. He then pulled out all the wires that needed to be attached to the leads that he had just put in place, her eyes were huge with fear and by this point she was all out in survival mode and, in her mind, no one not even mommy was on her side.He began to be unnecessarily rough with her as he put the wires in place, she was thrashing about saying "all done" and "OUCH!!" he pinched her with the clip at one point and when she began to cry harder he looked at her face and said "hey, you need to stop crying okay? If you would just be quiet then I could be done." Or something along those lines. I was furious, I was holding back the angry tears as he treated her that way (feeling mad at myself now for not telling him to just let me do it!) Finally my phone came to the rescue and was just enough of a distraction that although still crying she was still enough for a reading. It was miserable to watch.  I wanted to say, "dude, she is 2 and has more then likely been through more then you can possibly imagine, I'm sorry it is an inconvenience to you that my daughter has severe anxiety at a doctor office, but you chose pediatric cardiology as your profession so get your act together!" I didn't say the things that are on my mind and I guess I'm glad. I wish I had said something, but I know yelling at him wouldn't have gotten me anywhere. Next the doctor came in and he is overall friendly and "the best in Oklahoma" so I trust him more then the others for sure. If he had better staff I'm sure I would think more highly of him, but he is never as thorough or as educated as I would like. We told him all that has been going on and her symptoms. He agrees that it isn't normal, and that it may be something wrong, but he isn't sure what yet. He isn't overly concerned but thinks we should watch her closely. He suggested that he might have us stop giving her one of her medications and see if that helps. Here is the deal on that, the medication he wants her to stop taking, is a medication to help her right ventricle function better (aka keep her alive since that is her only ventricle!) also she has been taking this same medication her whole life, she currently takes it twice a day. He wants me to stop it cold turkey. I immediately got a feeling in my gut that I would not do that without a second opinion from Dallas. He said their is a number of things it could be, but right now he really just doesn't know. His biggest guess would be a rhythm problem. If that is the case she will need to be treated for that (most likely with another medication). Ella has had a rhythm problem in the past, one really scary night after her norwood when we almost lost her. He said it is unusual for that rhythm to return, but it's possible. So (again so thankful for a husband who speaks up) Jon told him that since are visits are several months apart now that we wanted to switch all of Ella's care to the Dallas team and that we will make the drive down there. He told him we just felt more comfortable having all of her care in one place. Since Ella will have all future surgery's/hospitalizations there we are just going to take her there every time. He understood and said he thought that was a good idea and would send a referral for our insurance if that becomes an issue. Instant relief fled over me realizing she was going to be getting better care. After this visit today I never wanted to go back... ever. On the drive home I called Dr. Lemler's office who was Ella's cardiologist in Dallas, the lady that answered the phone was kind and helpful, and within about 15 min. I had called her, hung up, she had talked to the doctor and called me back and she was in the process of starting to get Ella's medical records sent to them, not to mention I'm pretty sure she knew who Ella was from over a year ago. To put a cherry on top she said that Dr. Lemler only sees patients in clinic on Friday, but the Friday we were hoping to get in he was going to be off, so she said he would more then likely come in on the Thursday before that just to see her. Ummmmm amazing!!! I hung up the phone shouted that "I love Dallas" and told Jon "that is the kind of care our baby deserves, and that is the care we are going to get her!" I am convinced that sometimes medical staff just forgets that it may be just a job to them, but it is our whole world. Our only baby, our most treasured gift is sick, she has half a heart and we are terrified. To be treated as an individual human being instead of patient number 100,908,978 is a gift that I'm just not sure how we have managed without for the last year and a half. Thank you Dallas CMC for caring for the individual and for lifting some of the burden that I have been carrying. We don't have any answers, only more questions, but we are relieved that we will be in more capable hands soon! In the mean time I am going to continue her meds as usual (at least until I can do appropriate research) and he wants us to buy a pediatric blood pressure cuff/stethoscope to monitor her blood pressure, heart rate, and oxygen level several times a day. So that is the plan, we ask that you pray that this is a minimal problem and that Dallas will be just what she needs to stay strong until her next surgery! Thank you all for caring so much for our girl!

Thursday, September 20, 2012


I wanted to give a quick update on Ella. We really don't have any more information at this time, but I knew you would be anxious to hear. Ella is currently still having her desat episodes when she is active at all. She is still pretty out of breath just trying to do simple things and she is turning all sorts of colors while she plays. We hope to get in on Monday to see her cardiologist, please pray that we are able to get in! It's hard to wait, but we decided to wait and see her cardiologist instead of seeing the on call card this week just because he knows her better and he is the one who usually contacts Dallas if need be. Thank you all for continuing to pray.

I have heard that Cali (after enduring 5 surgeries in a week) is currently stable and it is a miracle. She is far from out of the woods and I'm sure her family would appreciate your prayers to continue as well.

Monday, September 17, 2012

prayers please

Ella has been having some episodes today that are not fun. Her oxygen levels have been dropping into the 50's and 60's. Normal for her is in the 80's anything below 75 is concerning. We have been monitoring her all day and have been in contact with one of her cardiologists and we will continue to watch her tomorrow. Right now it doesn't appear to be any type of emergency, so that is good. This could just be signs of needing her next surgery (even with these signs it could still be a ways away) it could also be something really simple like she might be teething or getting sick. "Simple" things like that make a BIG impact on our baby. We ask that you keep her in your prayers. We know that God is in control and we try to rest in that. Ella has been really out of breath just walking in the house today and when she plays at all she will turn kind of blue and purple and her sats (oxygen) drop significantly. The good news is that after sitting for a minute or two her numbers come back up fairly quickly and her color returns to normal. Also the good news is that despite the shortness of breath and lack of oxygen she acts normal and doesn't seem to be bothered by it at all. I almost didn't post this since right now I don't know much and I don't want to cause worry to anybody, but knowing that you all are here and will pray for her, I just had to share. So please pray for her as we watch her and wait for her heart to show us what it needs. Thank you.

also please keep a little baby girl named cali in your prayers as she is in emergency open heart surgery right now and things look grim.

Thursday, September 13, 2012

2 years ago today we brought her home!

On this morning 2 years ago we were packing up our bags and cleaning our Ronald McDonald house room as fast as we could so we could load up our one month old baby girl and go HOME for the first time!

 It seemed that we had been there so much longer then a month, I guess that since she had gone through a cath surgery, 2 open heart surgeries, transplant evaluation, and feeding/occupational/physical therapy, it was a lot to pack into a month. Not to mention that Jon and I had been there 2 weeks prior to her birth (Doctors orders).

The days seemed so long, everyday was full of unknown, we almost lost her on more then one occasion. But we were finally bringing our girl home, our girl that wasn't supposed to live, our girl with half a broken heart and terribly weak lungs. God is good and today we celebrate His goodness!

 This day 2 years ago is a day I longed for so badly, I just wanted to bring her home to hold her whenever I wanted to, to kiss her all day, to sleep in a bed (not a hard narrow hospital "couch") I wanted to lay Ella in her little cradle beside my bed (the same cradle that most of my family has slept in for generations), I wanted to show her the chandelier her daddy had hung over her crib...

Bringing her home didn't come without fear... what if something went wrong? What would I do without a nurse/doctor at my beckoned call? What if she got sick... even a common cold would have killed her. I was only 21 at the time, but my body ached as if I was much much older. I was tired and recovering from a difficult (to say the least) pregnancy and a c-section. I was pumping every 3 hours all through the night for little miss, who was too weak to nurse, and I had spent the last month in a hospital room standing by my baby's bed.

Oh the emotions that we faced everyday, it was such a difficult time. Thank goodness for a wonderfully supportive husband who is helpful and got up and fed Ella every night while I pumped so I didn't have to fed her then pump and therefore I got a little more sleep.

Hard to believe all of that was real, that it happened, that we have to go back, that it's never going to be over, that her heart can't be fixed, only mended. God has been overwhelmingly good to us in ways we never could have imagined. This blog has been a source of comfort, knowing that so many people are praying for our sunshine, and sharing her story. Every time her story is shared awareness for Congenital heart defects is spread and even though Ella's conditions are very rare, heart defects in general are not uncommon. 1 in 100 babies are born with a CHD. So thank you for reading, for sharing, but most importantly for praying!

Today I am watching my big girl play pretend with her baby doll and getting random unprompted hugs and kisses (favorite!) Saying "I love you" and hearing "I love you tooo!", yesterday I let Ella paint for the first time, she loved it! She is so much fun, so sweet, so pleasant to be around! She is a wonderful blessing every moment of everyday, I have no words to express my joy today. I'm pretty sure that I feel that way every single day, but, wow this feeling never gets old!

Ella girl, I hope you have enjoyed these two years at home! I hope you always love to come home! We love you and thank God for you!

On an unrelated side note, tomorrow is our 5th wedding anniversary! :) So in love with my husband and best friend. I feel overwhelmed trying to write anything about him because it just never seems enough. He is as close to perfect as they come. I can honestly say that I have never met a person that is as kind, as smart, or someone who serves as much as my husband. There is no one that I respect more then the man who has loved me in sickness and in health and who has given more of himself then I even thought possible. He truly loves me the way Christ loves the church. He is my hero. I love you best friend! Happy anniversary!