Lily had her appointment with her new cardiologist on Friday. Again, we have been so blessed with the care we have received since moving to Charleston.
I think we tickled the cardiologist pink. I think she was so happy that she was the one who was able to give us the terrific news that Lily's VSD is almost nonexistent, that it's so small that blood is not getting through it. I've been waiting for this news for almost 16 months, and finally, I got to hear it.
That news is so good, that Lily won't have to go back to the cardiologist for another two years. Two years!
The only reason we would need to contact this doctor is if Lily would need to have surgery for some reason. Lily still has two other trivial holes in her heart, but lots of people have them, and they go through their entire lives with them. Lily would just need a dose of antibiotics before surgery to keep infection from getting into these holes and spreading throughout her whole heart.
I was concerned with the damage the VSD may have done. None, according to the doctor. Her heart is a perfect size and sounds great.
In essence, Lily's heart is healed. What a miracle!
God has been so good to us!
Saturday, August 28, 2010
Thursday, August 19, 2010
Dear "Nana"
A comment from a reader, Nana: OMG'osh! God is sooooo good! Your family is just simply beautiful... from "A Few Pics" August 14, 2010
Dear "Nana,"
I don't know who you are, but I'd like to thank you. Thank you for the sweet comment, but thank you also for not even knowing that you would put a knot in my throat and bring tears to my eyes with the words you had written, and thank you for bringing such a beautiful thought to light at a time when I think I really needed it.
Too many years ago, I lost my "Nana." She was like a second mother to me, and I miss her dearly. Upon seeing your comment, my first thought went to my nana. I know, without a doubt, that she is up in Heaven, and I couldn't help but imagine that she was saying this to me: OMG'osh! God is soooo good! She would know, wouldn't she!?!
I've always wished that she were alive to meet Dave, because I know she would love him and be so happy for me, knowing that I have such a great husband. I believe she would be so proud of Rani and Autumn for their accomplishments, and she would delight with me in seeing them become such beautiful young women. Then there's Gabriel. She would think he is so precious and smart, and I can hear her laugh right now at all the funny things he does and says. And Lily. Oh, how she would have so much praise for our little miracle, and she would be so proud of all of her accomplishments. I've always wished. . .
You wrote your comment, and I imagined her saying to me Your family is just simply beautiful...
I needed to hear that from her.
Dear "Nana,"
I don't know who you are, but I'd like to thank you. Thank you for the sweet comment, but thank you also for not even knowing that you would put a knot in my throat and bring tears to my eyes with the words you had written, and thank you for bringing such a beautiful thought to light at a time when I think I really needed it.
Too many years ago, I lost my "Nana." She was like a second mother to me, and I miss her dearly. Upon seeing your comment, my first thought went to my nana. I know, without a doubt, that she is up in Heaven, and I couldn't help but imagine that she was saying this to me: OMG'osh! God is soooo good! She would know, wouldn't she!?!
I've always wished that she were alive to meet Dave, because I know she would love him and be so happy for me, knowing that I have such a great husband. I believe she would be so proud of Rani and Autumn for their accomplishments, and she would delight with me in seeing them become such beautiful young women. Then there's Gabriel. She would think he is so precious and smart, and I can hear her laugh right now at all the funny things he does and says. And Lily. Oh, how she would have so much praise for our little miracle, and she would be so proud of all of her accomplishments. I've always wished. . .
You wrote your comment, and I imagined her saying to me Your family is just simply beautiful...
I needed to hear that from her.
Wednesday, August 18, 2010
Window shopping
I am ashamed.
Quitting work to stay at home with Lily (and Gabriel) has definitely been worth it, but it has not been super easy financially. We make do, but not without sacrifices. Luckily, we had a little money in savings, along with frequent "surprises" in the mail to pull from during those months when we went "over budget." I try to have a positive attitude about it, recognizing that it's all for the very best, but there are days when I bemoan not having the courage to buy a pair of shoes or not really needing to buy a maternity outfit.
Then, just the other day, I hear about families living here - a child's room having nothing but a bed in it. A bed without sheets - just torn remnants of the plastic liner that comes on a new bed. I heard about roaches crawling around in broad daylight and broken pieces of furniture littering rooms in the house. I think the worst, though, is the concrete floor. I imagine this dull, hard flooring and wonder how much joy you can pull from that.
Yet I sit here in my carpeted, three bedroom, two and a half bath, two-story apartment. The one that has a dishwasher, a washer and dryer, our beds with sheets, more space than I need even when it might not be the amount of space that I want, and I wonder What in the heck am I complaining about?
I guess complaining about what we have (or don't have) is easy. . .until we see what life could really be like. If I think about it, I have everything I need, and even though it may not always sound like it, I am thankful. But when I certainly know it could be worse, that thought causes me to look around, suck it up, and stop wishing my life away on all that unnecessary stuff my longing heart window shops for.
I'm sometimes in that same situation with Lily. I see children with Trisomy 18 who are sitting up or walking or able to eat "normally" or who are reaching for their toys, and for a very quick moment, my heart wishes for more for her. But I know there are other children out there with her condition who suffer their own problems, many that are more severe than Lily's. That's when I stop and remember that I love Lily for who she is, not what she does or doesn't do, and I stop my longing heart from window shopping again. What AM I complaining about?
PS--I spoke to Dave about how we might provide families in difficult situations without hurting their dignity. We worry about the balance of helping others without insulting them. We have just received so much from friends and family, and we want to pay it forward to others who are less fortunate.
Quitting work to stay at home with Lily (and Gabriel) has definitely been worth it, but it has not been super easy financially. We make do, but not without sacrifices. Luckily, we had a little money in savings, along with frequent "surprises" in the mail to pull from during those months when we went "over budget." I try to have a positive attitude about it, recognizing that it's all for the very best, but there are days when I bemoan not having the courage to buy a pair of shoes or not really needing to buy a maternity outfit.
Then, just the other day, I hear about families living here - a child's room having nothing but a bed in it. A bed without sheets - just torn remnants of the plastic liner that comes on a new bed. I heard about roaches crawling around in broad daylight and broken pieces of furniture littering rooms in the house. I think the worst, though, is the concrete floor. I imagine this dull, hard flooring and wonder how much joy you can pull from that.
Yet I sit here in my carpeted, three bedroom, two and a half bath, two-story apartment. The one that has a dishwasher, a washer and dryer, our beds with sheets, more space than I need even when it might not be the amount of space that I want, and I wonder What in the heck am I complaining about?
I guess complaining about what we have (or don't have) is easy. . .until we see what life could really be like. If I think about it, I have everything I need, and even though it may not always sound like it, I am thankful. But when I certainly know it could be worse, that thought causes me to look around, suck it up, and stop wishing my life away on all that unnecessary stuff my longing heart window shops for.
I'm sometimes in that same situation with Lily. I see children with Trisomy 18 who are sitting up or walking or able to eat "normally" or who are reaching for their toys, and for a very quick moment, my heart wishes for more for her. But I know there are other children out there with her condition who suffer their own problems, many that are more severe than Lily's. That's when I stop and remember that I love Lily for who she is, not what she does or doesn't do, and I stop my longing heart from window shopping again. What AM I complaining about?
PS--I spoke to Dave about how we might provide families in difficult situations without hurting their dignity. We worry about the balance of helping others without insulting them. We have just received so much from friends and family, and we want to pay it forward to others who are less fortunate.
Monday, August 16, 2010
Perspective
Over the weekend, we met some friends of ours at the beach. They recently moved to the Charleston area, and it was such a nice time to be around these friends of ours--Sarah, Ward, Ethan, Wyatt, (twins) and Sylvie. Sylvie is around three months old, maybe a little closer to four, but seeing her beside Lily really puts things into perspective. (Note: Sylvie is a cute, big baby, but she's not THAT big. She is THAT cute, though!)
Saturday, August 14, 2010
A Few Pics
Lily doesn't like the bright sun, but she loves the water. The waves scare her a little, but she relaxes as soon as they pass.
I cannot describe how much Lily adores her big brother. And he adores her as well. He'll just go up to her and cuddle with her. "She wants my 'battention,'" he'll say.
We went crabbing for the first time the other day. I had so much fun. Truly, it's better than fishing! I can't help but think how much of a little beach boy my little boy looks in this picture.
The first time we went to the beach, Lily fussed the whole time we were there. That was pre-thumb. Now that Lily's found her thumb, she uses it to our advantage!
The other man in her life whom she adores--Daddy.
Friday, July 30, 2010
Shock
Lily had another renal ultrasound today. I walked out of that appointment, speechless, but tickled pink nonetheless. As the sonographer was looking at her kidney, I mentioned that they thought Lily had a pelvic kidney, in utero, but that a previous ultrasound (after she was born) had determined that there was no pelvic kidney, that Lily only had one kidney.
The sonographer said she'd give a look just to make sure. Sure enough, no kidney in the normal back area, but to my TOTAL surprise, she found that Lily has a pelvic kidney, fully functioning! I could not believe what I was seeing! Understand, Lily had an ultrasound when she was a few months old. There was no evidence of a second kidney. And now it's there! The sonographer said that she saw that Lily's known kidney was a normal size according to her age. That gave her reason to believe that another kidney was there. Otherwise, her kidney should have been bigger.
I know this sounds unbelievable. I still can't believe it. Some may chalk it up to misdiagnosis. It happens. I know what I believe. Praise God! But here's the rub: Lily's main problems included a VSD that is healing and giving the doctors a reason to believe that it will eventually heal itself and one kidney. Sure, there are other smaller issues, but do you see what I'm saying?! It is possible that these main problems will not even be there. If that's the case, and everything else remains status quo, our only other worry will be warding off sickness. Now, T-18 scares me. There is always that fear that some major organ shutdown or some other drastic thing could occur. We've got it good right now, but I'm always looking over my shoulder for that to change. Then I turn around and see this beautiful little girl, smiling and growing and being so precious, and I focus on today and what we've been given to be so, SO thankful for. It renders me speechless.
On a different note. . .please pray for Erika and her unborn little girl Hannah Joy. While an amnio recently revealed that Hannah does not have T 13, 18, or 21, there are some concerns, including a two-vessel cord and heart defects. Erika's blog is http://psalm139wonderfullymade.blogspot.com/. Please pray for this family as they deal with the uncertainty of what's ahead.
The sonographer said she'd give a look just to make sure. Sure enough, no kidney in the normal back area, but to my TOTAL surprise, she found that Lily has a pelvic kidney, fully functioning! I could not believe what I was seeing! Understand, Lily had an ultrasound when she was a few months old. There was no evidence of a second kidney. And now it's there! The sonographer said that she saw that Lily's known kidney was a normal size according to her age. That gave her reason to believe that another kidney was there. Otherwise, her kidney should have been bigger.
I know this sounds unbelievable. I still can't believe it. Some may chalk it up to misdiagnosis. It happens. I know what I believe. Praise God! But here's the rub: Lily's main problems included a VSD that is healing and giving the doctors a reason to believe that it will eventually heal itself and one kidney. Sure, there are other smaller issues, but do you see what I'm saying?! It is possible that these main problems will not even be there. If that's the case, and everything else remains status quo, our only other worry will be warding off sickness. Now, T-18 scares me. There is always that fear that some major organ shutdown or some other drastic thing could occur. We've got it good right now, but I'm always looking over my shoulder for that to change. Then I turn around and see this beautiful little girl, smiling and growing and being so precious, and I focus on today and what we've been given to be so, SO thankful for. It renders me speechless.
On a different note. . .please pray for Erika and her unborn little girl Hannah Joy. While an amnio recently revealed that Hannah does not have T 13, 18, or 21, there are some concerns, including a two-vessel cord and heart defects. Erika's blog is http://psalm139wonderfullymade.blogspot.com/. Please pray for this family as they deal with the uncertainty of what's ahead.
Tuesday, July 20, 2010
Results of the 1st Trimester Screening
The 1st Trimester Screening cannot tell me whether or not my baby has Down Syndrome or Trisomy 18 or 13. But it can give me a risk factor.
They start by giving me a number based on my age. For Down, that risk factor began at 1 in 131. After the screening, my risk factor lowered to 1 in 1008. For Trisomy 18 or 13, my risk factor began at 1 in 95 due to the fact that I've already had a baby with Trisomy 18. After the screening, my risk factor lowered to 1 in 1881.
I know there is still that chance, but I like these numbers.
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