We made the decision before meeting Daria that if she will make it home we will bring her home and we'll worry about getting her heart fixed after that. So I need the help of all those cardiac momma's! We will be bringing her home, but we need advice on whether she will need additional medication and whether this could be a life-threatening trip for her. I will be taking pictures of an EKG and attempting to send it home for Mike's Dad (can you do that for us Cecil? :) ) to contact our cardiologist and get more info from them too.
Ok, so here's the info we have, mostly as translated through our facilitator who does not have any medical background...
Daria's heart issue is with the Mitral Valve. The right side of the heart is enlarged because of the issue with the mitral valve. She has a higher pressure in her lungs but it is stabilized due to medication (not rising, but already elevated). She is on "glicositis" group meds for lung pressure and Digoxin which is to "strengthen the muscle and prolong the time of the muscle that relieves the heart". We were given another paper which, roughly translated, says "combined hypertrophy of miocardic of the right lower part, right upper part, and left upper part. Disorder of circulation inside bottom part".
If anyone can make sense of this please let me know! I have that paper (untranslated) and will be taking digital pictures of it and an EKG they gave me to send on. I just want to know if she will make it home without issue. Then we will do what we need to from there. I just don't want to endanger her further by taking her on a plane.
Thank you all for your continued prayers. I will post more (lots) next time, but this time was unprepared for posting. Daria is smiling and LAUGHING with us and was so happy to be able to go back out with us when we thought we had to bring her back. It is so sad though to see her so hungry. Today she was grinding her teeth a lot and was sucking her three middle fingers so hard. We are sure she was hungry. It breaks your heart! Tomorrow we will bring something with us and we will ask if we can give her something to eat. Maybe some baby food or some little crackers. She has a full mouth of teeth but they feed her nothing but a bottle of mixed gunk (meat, egg yolk, milk.. EW) every 4 hours or so. I'm sure a lot of it is water too and she is 5 yrs old and HUNGRY. I'm sure that attributes a lot to her size.
Ok, off to read the 67 replies to the past two days :) You guys are awesome :)
We are doing well, settled into an apartment with a kitchen, and enjoying visiting with the kids :)
Glad that everything is going good. It does sound like she is hungry the poor little princess. Did they say when you would have a court date yet? You are all in our prayers
ReplyDeleteIt breaks my heart that she is hungry!
ReplyDeleteSo looking forward to when you guys getting home and living your new life!
congratulations to you both.
Dani
Meredith, a lot of this sounds familiar but if you can get a cardiologist's interpretation that will be best! If your father (in-law?) can get your entire post to him that would be great. Along with the EKG they should be able to tell quite a bit. The teeth grinding happens when there is a lack of "input" to the mouth. Not enough to chew on. I see it in my kids with DS when they are on a liquid diet, when they are on steroids, or when they drink soda pop. The meds are probably Lasix (a diruetic) and you already said digoxin, which helps in the beating of the heart. I have three kids with varying heart defects but I am still not an expert. I know that when Joel was in CHF (congestive heart failure) riding on the plane was a very scary experience.The cardiologist should advise you. In the end once again it will be your decision. God knows each of these little ones and loves them. And He has shown much evidence of his love for you!
ReplyDeleteDolores.
Wow, that gunk they feed her sounds disgusting!! I can't wait to hear what she thinks of real food!
ReplyDeleteAnd I can't wait to see how she grows and thrives once she is in your care! It is a joy to know that she is smiling and laughing!
Meredith, We copied the last few blogs for the doctor so he can see how she looks and all the information that you sent. Once we received the EKG we will take it to your doctor. Please send the name and address of the doctor for us. We will do anything needed for little Daria's safe ride to her new home! It sounds like once she has the surgery and some normal eating habits she will grow like a weed. Brianna really changed after her surgery.
ReplyDeleteI am so glad you are able to have alot of time with them both. Do you know yet when you get to sign off on the final paperwork stating that they are YOURS!!
You are covered with alot of prayers so know that you two are not alone in this journey.
Can't wait to see more pictures.
We love you all!
Mom & Dad Cornish
Praise God for smiles and laughter! I will be keeping little Daria in my prayers, that you will get the medical advice you need to travel with her safely. I'll be praying about the lawyer situation too.
ReplyDeleteDear Meredith,
ReplyDeleteI found this website that I think has a lot of very good information on it. http://www.rch.org.au/cardiology/defects.cfm?doc_id=3011 Please copy and paste it, I know it helped me tremendously to understand heart issues more thoroughly.
Prayers for all of you, especially for the PUNK to sign the papers, maybe he would like a "gift"?
Kara was also ravenous when we were in Ukraine, even eating me under the table. Thankfully she has gotten better, and she beginning to eat more of a variety too. Bananas and yogurt are good choices for kids who refuse to chew like ours.
Hugs and prayers,
Kris
I am sorry, I also meant to say that there is a group on yahoogroups called Downs Heart and many of those children have similar issues to Daria. They may be able to answer your questions.
ReplyDeletehttp://groups.yahoo.com/group/Downs-Heart/ They don't seem as active as when I was on a lot for Meghan.
I hope it helps.
God bless
Kris
I would suspect Mitral Valve Stenosis. (Narrowing of the mitral valve). IT can cause the left atrium to enlarge. Also the right side of the heart can enlarge. PH also accompanies this issue. THey would probably do surgery to repair the valve. If not able to do that, they'd replace it. Problem being (only a cardiologist can answer this) this damage can be permanent if not corrected. I'd get extra meds to last until you can get home and see a cardiologist. You can't just stop meds, they'd want you to wean them off anyway.
ReplyDeleteHopefully the cardiologist can answer your questions.
Jan
RR friend.
Meridith, Airplanes are pressurized so it shouldn't make any difference with her flying that I know of. At least that is what I was told with Mercede.
ReplyDeleteI am praying for your quick return! Both kiddos fit perfectly with your other kids. I am so happy you are able to love on the kids everyday. Keep your spirits up and know the prayers are coming. Don't you just hate "nobody's with power."=-)
ReplyDeleteI have only heard of kiddos with heart issues not being cleared for air travel a few times and I haven't heard of it in conjunction with a Mitral Valve defect before, but the previous commenter is right - this could cause pulmonary hypertension which might be an issue. Before Gabe had his second surgery I emailed a few cardiac surgeons through second opinion programs and I will do the same right now. I will let you know what I find out.
ReplyDeleteMuch luck and so much love to you and all your little ones!
One more thing, when my son was diagnosed with Pulmonary Arterial Hypertension with pressures over 100 (normal is way less than 20), they were going to have us fly to a different hospital. Like a previous commenter said, cabins are pressurized. Hopefully a cardiologist can give you a definitive answer. Also, because his pressures were so high, they couldn't do surgery until they could get them lowered. She's got a lot ahead of her but the fact that the meds are working and keeping her 'in check' is a good thing.
ReplyDeleteJan
Meredith,
ReplyDeletePraying here.
Kevin and Joy
Hi,
ReplyDeleteI've been following your adoption--I'm good friends with Wendy Saunders who adopted Macey. Wanted to let you know that the tooth grinding and fingers in the mouth is not necessarily indicative of hunger. More likely she is craving more sensory input to her mouth. When you get home and settle in, please look into TalkTools for exercises to help her learn to use her mouth productively (learning to chew and strengthen her jaw will not only enhance her feeding skills, but will improve her articulation as well). Ask Wendy about this--she's an expert!
My daughter with DS had a clefted mitral valve (as well as several septal defects) and also an enlarged heart.(She had PH too) She had her surgery at age 2.5 and as she has grown her heart has returned to appropriate dimensions. Hopefully Daria will bounce back too! I doubt there would be any trouble with flying--rarely do they limit flying for heart issues.
Praying for you,
Beth Lennox
Hey there, Amy here back in town. The children are just adorable, they look just like your bios!!! Daria, my she does look strong and fantastic-Brianna and she are going to be like twins, and just a hoot together, you just wait and see! Any your son is going to have a little brother to have so much fun with, I can see the massive stack of Hot Wheels that will accumulate over the years already! Don't mind the lawyer, you'll get past him eventually. So glad you have those babies to finally cuddle. FYI, do take plaine crackers or soft baby food, we fed our son daily, just keep it very simple, those diapers can get really crazy!!! Amy O.
ReplyDelete