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Here's the whole crew, sans the dog. Thank goodness we didn't try to shove the dog in the picture too.
Special thanks to my father-in-law for doing such a great job with the photo.
Steve
Wednesday, March 26, 2008
Growing, growing and growing
AnnaSophia was seen by her home healthcare nurse, Deb, today for her monthly Synagis injection. AnnaSophia just loves her, regardless of the fact that she gives her shots. This little one continues to amaze us. She weighed in at 10lbs. 12oz! She is unbelievable! I was a little concerned, because she has slept the entire day. Deb evaluated her very carefully and said that she believes she's fine; possibly a growth spurt? This wouldn't surprise me with the way her weigh-ins have gone. Her murmur sounded much louder today. As Deb said, "Her murmur rocks!".
Friday, we see the cardiologist. She will have and EKG, an echocardiogram, and repeat another 24 hour Holter monitor test. We will also talk about her upcoming heart cath. I have had a little anxiety lately after researching aortic stenosis and valve replacement surgery. I pray for wisdom, and that the Lord will guide us down the right path. Wouldn't it be cool if her little heart could just miraculously pump away with limited intervention? Only God knows the plans for little AnnaSophia. I am content knowing that He is in control.
"Behold, I am the Lord, the God of all flesh. Is the anything too hard for Me?"
Jeremiah 32:27
Friday, we see the cardiologist. She will have and EKG, an echocardiogram, and repeat another 24 hour Holter monitor test. We will also talk about her upcoming heart cath. I have had a little anxiety lately after researching aortic stenosis and valve replacement surgery. I pray for wisdom, and that the Lord will guide us down the right path. Wouldn't it be cool if her little heart could just miraculously pump away with limited intervention? Only God knows the plans for little AnnaSophia. I am content knowing that He is in control.
"Behold, I am the Lord, the God of all flesh. Is the anything too hard for Me?"
Jeremiah 32:27
Saturday, March 22, 2008
Happy Easter
I hear the savior say,
"Thy strength indeed is small:
Child of weakness, watch and pray,
Find in me thine all in all."
Jesus paid it all,
All to Him I owe;
Sin had left a crimson stain,
He washed it white as snow.
Praise you Jesus for loving us so much that you would suffer on our account!
Indeed, I do feel like a child of weakness. I could not walk this path that our family is on if it were not for my Lord and Savior giving me the strength to do so. AnnaSophia is continuing to grow very well. The cardiologist called the other day. After conferring with the doctor who will be performing the heart cath, they have decided to wait as long as possible. The benefit in waiting is that her aorta could level out and not require a cath right now. Also, because her veins and arteries are so little, the doctors would like the chance for her to get bigger. As she gets bigger, her arteries get bigger. Our cardiologist will be watching her very carefully and doing echocardiograms every 1 and 1/2 to 2 weeks to evaluate the narrowing of her aorta. I asked him if I would notice any concerning symptoms if it was too narrow. He said the only way to evaluate this would be by echo. He said that he would not know even by listening with his stethoscope. One encouraging thing he said was that if I was concerned about her in the least bit, he would get her in and evaluate her right away.
AnnaSophia is the Lord's child, and I know that she is in His mighty hands. Please pray for wisdom for us and her doctors to know the best timing for her next procedure.
Thank you all who have been praying for our little miracle girl. We are so blessed.
Happy Easter!
Mary and Steve
"Thy strength indeed is small:
Child of weakness, watch and pray,
Find in me thine all in all."
Jesus paid it all,
All to Him I owe;
Sin had left a crimson stain,
He washed it white as snow.
Praise you Jesus for loving us so much that you would suffer on our account!
Indeed, I do feel like a child of weakness. I could not walk this path that our family is on if it were not for my Lord and Savior giving me the strength to do so. AnnaSophia is continuing to grow very well. The cardiologist called the other day. After conferring with the doctor who will be performing the heart cath, they have decided to wait as long as possible. The benefit in waiting is that her aorta could level out and not require a cath right now. Also, because her veins and arteries are so little, the doctors would like the chance for her to get bigger. As she gets bigger, her arteries get bigger. Our cardiologist will be watching her very carefully and doing echocardiograms every 1 and 1/2 to 2 weeks to evaluate the narrowing of her aorta. I asked him if I would notice any concerning symptoms if it was too narrow. He said the only way to evaluate this would be by echo. He said that he would not know even by listening with his stethoscope. One encouraging thing he said was that if I was concerned about her in the least bit, he would get her in and evaluate her right away.
AnnaSophia is the Lord's child, and I know that she is in His mighty hands. Please pray for wisdom for us and her doctors to know the best timing for her next procedure.
Thank you all who have been praying for our little miracle girl. We are so blessed.
Happy Easter!
Mary and Steve
Monday, March 17, 2008
Praise and Prayers
Friday March 14, AnnaSophia saw the cardiologist. We have some wonderful news. First, she gained more weight. She now weighs 10lbs. 3oz.! She is now a certifiable "chunky monkey". If there is one thing she knows how to do well, it is to eat--a lot. As the cardiologist said, that is the sign of a healthy baby. We also got the results of her last 24 hour Holter monitor. Her rhythm is doing so well that we were able to stop her Sotalol. Praise God!!!! We were very excited about that. Many praises to our Lord God!
The prayers are needed though for another challenge. Her echocardiogram on Friday revealed that her aorta above her bicuspid valve has narrowed considerably since last month. She will need to go to Children's Hospital in about 3 to 4 weeks for a heart cath. The doctor will attempt to stretch that narrow portion of her aorta with a balloon, going in through her femoral artery. Honestly, we did not expect this to happen for several years. I asked the doctor if her rapid weight gain could have affected this, and he said that it was possible. Her weight gain is good in one respect, but detrimental to her heart in another. He is mostly certain that what they are seeing on ultrasound is the narrowing of her aorta, but there is a remote chance that it could in fact be a thickening of the muscle beneath the valve. If they find this during the procedure, that would then require another immediate open heart surgery. We are praying that the ssue is just with the aorta. Hopefully, the procedure will go smoothly, and our stay will only be for one or two days.
I asked the doctor directly what he thought her prognosis looks like for life span and quality of life. He seemed to think that she will live a good life into adulthood. He also said that she will most likely be able to do things like a normal child (ride bikes, run around with friends, swim). She will most definitely not be an olympic athlete. The one catch is that she will be a person who will always require procedures, interventions and surgery to keep her heart functioning well. Obtaining insurance for her throughout her lifetime may be an issue. I am just reminded to continually give my burdens to the Lord, because I know that He loves AnnaSophia more than Steve and I do combined. He will also provide for her.
Cast your cares on the Lord and he will sustain you; he will never let the righteous fall.
Psalm 55:22
Mary
The prayers are needed though for another challenge. Her echocardiogram on Friday revealed that her aorta above her bicuspid valve has narrowed considerably since last month. She will need to go to Children's Hospital in about 3 to 4 weeks for a heart cath. The doctor will attempt to stretch that narrow portion of her aorta with a balloon, going in through her femoral artery. Honestly, we did not expect this to happen for several years. I asked the doctor if her rapid weight gain could have affected this, and he said that it was possible. Her weight gain is good in one respect, but detrimental to her heart in another. He is mostly certain that what they are seeing on ultrasound is the narrowing of her aorta, but there is a remote chance that it could in fact be a thickening of the muscle beneath the valve. If they find this during the procedure, that would then require another immediate open heart surgery. We are praying that the ssue is just with the aorta. Hopefully, the procedure will go smoothly, and our stay will only be for one or two days.
I asked the doctor directly what he thought her prognosis looks like for life span and quality of life. He seemed to think that she will live a good life into adulthood. He also said that she will most likely be able to do things like a normal child (ride bikes, run around with friends, swim). She will most definitely not be an olympic athlete. The one catch is that she will be a person who will always require procedures, interventions and surgery to keep her heart functioning well. Obtaining insurance for her throughout her lifetime may be an issue. I am just reminded to continually give my burdens to the Lord, because I know that He loves AnnaSophia more than Steve and I do combined. He will also provide for her.
Cast your cares on the Lord and he will sustain you; he will never let the righteous fall.
Psalm 55:22
Mary
Sunday, March 16, 2008
Encouragement for the weary
"As the Father has loved me, so have I loved you. Now remain in my love. If you obey my commands, you will remain in my love, just as I have obeyed my Father's commands and remain in his love. I have told you this so that my joy may be in you and that your joy may be complete.
John 15:9-10
The Lord gave me this verse several times in Steve's and my marriage. Most recently before Steve had his vasectomy reversal. The Lord promises that if we abide in Him, no matter our circumstances, our joy will be complete. This is truly amazing, because we absolutely will have trials. Just because we believe in Jesus as our Lord and Saviour doesn't mean that we will not have difficult circumstances in our lives. But if we obey and trust in Him, He will give us complete joy.
I was reminded of this again when I attended a homeschool meeting at Mountain Springs Church on March 11. The speaker was Kimberley Woodhouse, whose family was the recipient of an Extreme Home Makeover. She was speaking on homeschooling through trials. I thought to myself, I definitely need to hear what she has to say. Her daughter has a very serious and rare nerve disorder in which she cannot feel pain. She also needs to wear a special cooling vest to keep her from overheating. She most recently also experienced a lifethreatening and serious brain problem, which required extensive surgery with an uncertain prognosis. Kim also homeschools her children. She is the most delightful, fun person that I have met, and her love of the Lord just shines through her. She was so encouraging, and reminded all of us what the book of James says about trials.
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.
James 1:2-4
John 15:9-10
The Lord gave me this verse several times in Steve's and my marriage. Most recently before Steve had his vasectomy reversal. The Lord promises that if we abide in Him, no matter our circumstances, our joy will be complete. This is truly amazing, because we absolutely will have trials. Just because we believe in Jesus as our Lord and Saviour doesn't mean that we will not have difficult circumstances in our lives. But if we obey and trust in Him, He will give us complete joy.
I was reminded of this again when I attended a homeschool meeting at Mountain Springs Church on March 11. The speaker was Kimberley Woodhouse, whose family was the recipient of an Extreme Home Makeover. She was speaking on homeschooling through trials. I thought to myself, I definitely need to hear what she has to say. Her daughter has a very serious and rare nerve disorder in which she cannot feel pain. She also needs to wear a special cooling vest to keep her from overheating. She most recently also experienced a lifethreatening and serious brain problem, which required extensive surgery with an uncertain prognosis. Kim also homeschools her children. She is the most delightful, fun person that I have met, and her love of the Lord just shines through her. She was so encouraging, and reminded all of us what the book of James says about trials.
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.
James 1:2-4
Tuesday, March 4, 2008
Last night
We made it through the night at home, Praise God! I am exhausted from being up all night with AnnaSophia, but she did not get critical. I had to keep her elevated all night to help her not to spit up or vomit. I pumped and fed her diluted breast milk from a bottle, which she seemed to tolerate better. She is still uncomfortable and cramping, and I am a little concerned that she has not had but one wet diaper through the night. We have an appointment with our pediatrician's associate this morning, and I pray that AnnaSophia starts to improve. IV's are not something that goes well for this little girl, as her veins and arteries are very very small for even someone her size. The last IV did not go well. A NICU nurse tried for 30 minutes to get one in and could not. The nurse came out of the room with tears in her eyes, apologizing profusely. She said that she always gets IV's in, but she couldn't on AnnaSophia.
All I know is that I need to keep my eyes fixed on Jesus. I am reminded of the story when Peter got out of the boat and was walking across the water to Jesus. As long as Peter kept his eyes focused on Jesus, he was fine. The minute Peter took his eyes off of his Saviour and looked at the raging waters around him, he started to sink. He was overcome by his circumstances. As long as I keep my eyes on my Saviour, I can walk through any circumstances, by His grace. And the times I think that I can't, I know that He will carry me.
Thank you for the prayers.
Mary
All I know is that I need to keep my eyes fixed on Jesus. I am reminded of the story when Peter got out of the boat and was walking across the water to Jesus. As long as Peter kept his eyes focused on Jesus, he was fine. The minute Peter took his eyes off of his Saviour and looked at the raging waters around him, he started to sink. He was overcome by his circumstances. As long as I keep my eyes on my Saviour, I can walk through any circumstances, by His grace. And the times I think that I can't, I know that He will carry me.
Thank you for the prayers.
Mary
Monday, March 3, 2008
Prayers needed again, trying to avoid the hospital
For our friends who are still reading the blog, please pray for little AnnaSophia tonight. We think she is sick again, this time with some kind of intestinal virus. She is spitting up frequently, is very fussy and has diarrhea. Dehydration is a huge concern tonight. Dehydration on top of cardiac issues is more than scary.
We've been in contact with AnnaSophia's home health care nurse and we are trying to keep her comfortable and hydrated at home. Obviously, this is a stressful time for us. Another trip to the hospital is not a pleasant thought as we're hearing reports that all three of the city's emergency rooms are packed with sick people.
Please pray that God shows up in a mighty way tonight and heals our little girl. Also, pray for peace for the family, and that my tendancy to feel angry and frustrated about the circumstances is lifted. I just want to be angry and I don't want anyone telling me why I shouldn't be -- have you ever felt like that? Yet, I know God has a plan for me and for my family, and I continue to put my trust in Him for it is through Him that I find whatever strength I can muster to lead my family through these trials. Without Jesus, my Savior, I'm nothing more than an angry, weak mess. I can't imagine life without Him.
Steve
We've been in contact with AnnaSophia's home health care nurse and we are trying to keep her comfortable and hydrated at home. Obviously, this is a stressful time for us. Another trip to the hospital is not a pleasant thought as we're hearing reports that all three of the city's emergency rooms are packed with sick people.
Please pray that God shows up in a mighty way tonight and heals our little girl. Also, pray for peace for the family, and that my tendancy to feel angry and frustrated about the circumstances is lifted. I just want to be angry and I don't want anyone telling me why I shouldn't be -- have you ever felt like that? Yet, I know God has a plan for me and for my family, and I continue to put my trust in Him for it is through Him that I find whatever strength I can muster to lead my family through these trials. Without Jesus, my Savior, I'm nothing more than an angry, weak mess. I can't imagine life without Him.
Steve
Saturday, March 1, 2008
Test results
Despite the fact that AnnaSophia studied hard for her overnight pulse ox test, she didn't do so well. I spoke with the doctor on call for our pediatrician yesterday afternoon, and she was desatting over 13% of the time. When she desatted, her oxygen sat levels were in the low 80's. The doctor wanted her numbers at least over 90, and as a result, her oxygen was increased from 1/32 of a liter to 1/16. I asked the doctor what could possibly be causing this since her lungs are clear and the RSV seems to be completely gone. He said there is a possibility that her oxygenation is still not great due to the RSV or it could be cardiac. He asked if she had a VSD (ventricular septal defect) still, and I told him that it had been repaired, but she still had a small hole in one area by her patch. He thought that the small hole could be causing residual oxygenation issues, but we would need to talk to her cardiologist further regarding this.
We are hoping that the 24-hour holter monitor that she completed today goes better than the pulse ox test. If we do not hear from the cardiologist before her next appointment on March 14, that means good news. If we hear from him sooner, there could be issues with her rhythm. We are praying continually for healing for her heart.
As much as I want to have a "No More Oxygen Tank" celebration, I clearly want her to get what she needs. Little inconveviences like carrying around a portable tank or tripping over 50 feet of tubing seems like nothing next to knowing that your child is getting the oxygen that they need. The only concern at this point is that her heart is ok. She has been healing so quickly, I think we tend to rush things a bit at times. As the doctors and nurses have told us, how she recovers and heals is all up to her. We can't rush her or put her on our arbitrary time table.
We are hoping that the 24-hour holter monitor that she completed today goes better than the pulse ox test. If we do not hear from the cardiologist before her next appointment on March 14, that means good news. If we hear from him sooner, there could be issues with her rhythm. We are praying continually for healing for her heart.
As much as I want to have a "No More Oxygen Tank" celebration, I clearly want her to get what she needs. Little inconveviences like carrying around a portable tank or tripping over 50 feet of tubing seems like nothing next to knowing that your child is getting the oxygen that they need. The only concern at this point is that her heart is ok. She has been healing so quickly, I think we tend to rush things a bit at times. As the doctors and nurses have told us, how she recovers and heals is all up to her. We can't rush her or put her on our arbitrary time table.
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