So, since we have only been in "partial quarantine" these last few weeks a yucky virus has gotten into our home. It is a cold virus and Mommy got it and then Zachary got it and despite our best efforts to wash hands, Anna Grace got it. She started with a yucky cough on Saturday which progressed on Sunday and caused us to take her to the pediatrician today (Monday). So far her lungs are clear of pneumonia - Praise the Lord - but we are on the watch for it over the next 72 hours or so. They have started her on antibiotics which she will begin today. The timing of this is pretty tricky, because if she is sick at all 10 days prior to her surgery (June24) then they will have to reschedule her surgery. So, please join us in praying that (1) this cold does not turn into pneumonia, (2) she is able to fight this cold and be completley done with it BEFORE the 10 day window which would require us to postpone her surgery.
Needless to say we are now back in 100% quarantine until after her surgery. I am a little sad about this, but see the importance of keeping our little one well so am willing to do whatever it takes.
Prayer warriors - we need you!
P.S. - We have a cardiologist appointment tomottorw (Tues) so please be praying that her echo tomorrow will show good heart function despite her cold & cough and that her O2 sats are still holding steady in the 70's.
Monday, May 31, 2010
Friday, May 28, 2010
Heart Angel Maia
Maia and her parents have been on my heart and mind. With her passing I have been thinking about her little life and the brief encounters we had with Maia and her Mommy at MUSC. I first met Maia and her Mommy while Anna Grace was in the PCICU at MUSC. I was there by myself in the PCICU waiting room - PCICU was on "lock-down" for one reason or another so me and all the other parents were in the PCICU waiting room just waiting until we could go back in and see our babies. In walks a beautiful woman with georgeous red hair pushing a stroller with a sweet sleeping little girl in the stroller. I was introdcued to the red headed lady, Shannon (maia's Mom) and she shared with me that they were on 7C (the step-down floor from the PCICU) but that the walls were closing in so she put Maia in a stroller and was strolling her around the hospital and took a walk up to the PCICU waiting area to talk with some other heart Moms. I remember looking at Maia and thinking she looked so perfect - so normal. Shannon was smiling and telling me about their heart journey with HLHS. Shannon was such an encouragement to me that day as Anna Grace laid in the PCICU after her Norwood. It truly was a blessing to me to meet her and Maia. Please continue to keep this sweet family in your prayers. Thank you friends!
Thursday, May 27, 2010
Wednesday, May 26, 2010
Sweet Maia
Please see the most recent post from Maia's family today and PLEASE PRAY for this family as they grieve over the loss of sweet baby Maia.
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Maia passed away today at around noon in the PCICU at MUSC. She was very comfortable, peaceful and in no pain at all. Shannon and I held her very close to us and were with her every step of the way.
We are surrounded by family, friends and our Church, but most of all we feel surrounded by God. Thank you for your support and kind words. We read every single one of them. Details about a service will be posted here as soon as we have them.
You should know – Maia was flat out beautiful today.
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Maia passed away today at around noon in the PCICU at MUSC. She was very comfortable, peaceful and in no pain at all. Shannon and I held her very close to us and were with her every step of the way.
We are surrounded by family, friends and our Church, but most of all we feel surrounded by God. Thank you for your support and kind words. We read every single one of them. Details about a service will be posted here as soon as we have them.
You should know – Maia was flat out beautiful today.
Heart Mom Prayer Request
Below is a BLOG update from the parents of a little girl that we met while we were in Chrleston during Anna Grace's Norwood. This sweet baby (Maia) is just a few months older than Anna Grace with a very similar diagnosis. I am asking all our paryer warriors to include little Maia in your prayers. As a matter of fact, please just stop right now and pray for Maia and her parents. Thank you sweet friends!
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Maia’s vital signs continue to trend in the wrong direction. She is very sick, but the team is doing an incredible job of keeping her comfortable, peaceful and free of pain.
The medical management and surgical options for Maia are very limited and the few available are extreme in nature and have an unacceptably high level of risk for pain and suffering. Shannon and I have placed our role in Maia’s destiny in the hands of God. We are hoping for a miracle, but praying for God’s will to be done. Maia has moved mountains and accomplished more in the past 10 months than I could ever dream to do in my entire life. Today is Maia’s 10-month birthday.
Yesterday we received a visit from Jim Miles and Josh Surratt, Pastors at the church that Shannon and I attend. Their visit cleared some confusion in our minds and was very comforting and appreciated. (Greg you should be proud!) We have lots of family and friends around us. Shannon and I spent the night with Maia last night and held her very close.
Thank you for checking on us. Please keep us in your thoughts and prayers. Here is a post from Shannon and I when Maia was 4 days old, titled “Thank God”:
Just in case you’re checking our blog, we want to thank you God. Thank you for sending us Maia and allowing us to take care of her for you. Thank you for Shannon’s health and strength. Thank you for our family and friends.
We pray that one day Maia will know you well, but in the meantime we will carefully watch over her and try to raise her to be just like you.
Shannon and Elias
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Maia’s vital signs continue to trend in the wrong direction. She is very sick, but the team is doing an incredible job of keeping her comfortable, peaceful and free of pain.
The medical management and surgical options for Maia are very limited and the few available are extreme in nature and have an unacceptably high level of risk for pain and suffering. Shannon and I have placed our role in Maia’s destiny in the hands of God. We are hoping for a miracle, but praying for God’s will to be done. Maia has moved mountains and accomplished more in the past 10 months than I could ever dream to do in my entire life. Today is Maia’s 10-month birthday.
Yesterday we received a visit from Jim Miles and Josh Surratt, Pastors at the church that Shannon and I attend. Their visit cleared some confusion in our minds and was very comforting and appreciated. (Greg you should be proud!) We have lots of family and friends around us. Shannon and I spent the night with Maia last night and held her very close.
Thank you for checking on us. Please keep us in your thoughts and prayers. Here is a post from Shannon and I when Maia was 4 days old, titled “Thank God”:
Just in case you’re checking our blog, we want to thank you God. Thank you for sending us Maia and allowing us to take care of her for you. Thank you for Shannon’s health and strength. Thank you for our family and friends.
We pray that one day Maia will know you well, but in the meantime we will carefully watch over her and try to raise her to be just like you.
Shannon and Elias
Monday, May 24, 2010
Anna Grace Update
I received THE phone call from MUSC today. It is a dreadful feeling to see MUSC on your caller ID - even though I was waiting for the call, when it finally comes your stomach just sinks.
Anna Grace's surgery (the Glenn) is scheduled for June 24, 2010. We will most likely travel to Charleston on June 21 as Anna Grace has some pre-operative testing which has to be performed prior to the 24th.
Please be praying for Anna Grace, for our family, for her surgeon, Dr. Bradley, and for the whole team (anesthesia & nurses).
They have to stop my daughter's heart, it is scary. I am thankful that the Lord is soverign - He sees us, He comforts us when we call upon Him and His will is perfect. Lord, please strengthen us for this journey!
Anna Grace's surgery (the Glenn) is scheduled for June 24, 2010. We will most likely travel to Charleston on June 21 as Anna Grace has some pre-operative testing which has to be performed prior to the 24th.
Please be praying for Anna Grace, for our family, for her surgeon, Dr. Bradley, and for the whole team (anesthesia & nurses).
They have to stop my daughter's heart, it is scary. I am thankful that the Lord is soverign - He sees us, He comforts us when we call upon Him and His will is perfect. Lord, please strengthen us for this journey!
Friday, May 21, 2010
Amazing Light
I took this picture the other night in front of my house. It was completely dark outside and I had to play around with the camera shutter speed to get the shot. Basically what you’re seeing in the photo are two cars coming down the street and one car moving up the street.
I find it interesting the camera can take the dark and small lights and stretch them out into long cool beams of light – Amazing! But here is something that is even more electrifying…
2 Corinthians 4:6
For God, who said, “Let light shine out of darkness,” has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ.
God takes humans who are “in the dark” because of their sin and by the power of the Gospel “enlightens” their hearts to the glory of Jesus Christ.
John 8:12
“I am the light of the world. Whoever follows me will not walk in darkness, but will have the light of life.”
I find it interesting the camera can take the dark and small lights and stretch them out into long cool beams of light – Amazing! But here is something that is even more electrifying…
2 Corinthians 4:6
For God, who said, “Let light shine out of darkness,” has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ.
God takes humans who are “in the dark” because of their sin and by the power of the Gospel “enlightens” their hearts to the glory of Jesus Christ.
John 8:12
“I am the light of the world. Whoever follows me will not walk in darkness, but will have the light of life.”
Tuesday, May 18, 2010
Anna Grace - May 18
Anna Grace had her cardiologist appointment today - thank you all for praying for her! She wasn't a happy camper during the visit today (which everyone in the office can testify to), but thankfully we were able to get her O2 sats and blood pressure checked. Her O2 sats are hanging out in the low 70's now (mostly 71 today). Her cardiologist said that he would recommend to Dr. Bradley for her to have surgery in June - not to push it out to July. So, hopefully we will be getting a surgery date scheduled very soon. He said to start preparing for the family to go to Charleston in June. I will keep you posted on a surgery date when it gets scheduled.
Something else to be in prayer about.... Anna Grace is truly a Momma's girl. She gets very upset when people even look at her (hence all the crying at the cardiologist office) and VERY upset when someone else holds her. When we get to Charleston she is going to have to be handeled by lots of different people - nurses, doctors, etc and I am not always going to be able to be with her. Please be praying for the Lord to comfort her and calm this fear in her.
Anna Grace has her 4 month well-baby visit tomorrow (we're about a month behind on this) and most likely this will be her last appointment with her regular pediatrician until after Charleston.
By the way, Anna Grace weighed in today at 13 pounds 2 ounces and is 24 inches long. She is growing at a very steady rate and thus far we have not had to "fortify" my breast milk - which is common for heart babies prior to their Glenn to boost their weight. She is still on straight up breast milk and I am thankful for that! Overall, today has been a great day!
Something else to be in prayer about.... Anna Grace is truly a Momma's girl. She gets very upset when people even look at her (hence all the crying at the cardiologist office) and VERY upset when someone else holds her. When we get to Charleston she is going to have to be handeled by lots of different people - nurses, doctors, etc and I am not always going to be able to be with her. Please be praying for the Lord to comfort her and calm this fear in her.
Anna Grace has her 4 month well-baby visit tomorrow (we're about a month behind on this) and most likely this will be her last appointment with her regular pediatrician until after Charleston.
By the way, Anna Grace weighed in today at 13 pounds 2 ounces and is 24 inches long. She is growing at a very steady rate and thus far we have not had to "fortify" my breast milk - which is common for heart babies prior to their Glenn to boost their weight. She is still on straight up breast milk and I am thankful for that! Overall, today has been a great day!
Monday, May 17, 2010
Anna Grace - May 17
Anna Grace has a cardiologist appointment tomorrow (Tues) here in town. It is a regularly scheduled visit, but as you know these visits sometimes throw a curve ball. Please be in prayer with us about her visit tomorrow - that Anna Grace's heart is functioning as it should and that there is no need for an echo or chest x-ray and that Anna Grace cooperates during blood pressure checks, O2 sats, etc. - most times she SCREAMS and they can't get accurate readings on her. She is a very vocal little girl :)
As of today we have not yet heard from the surgeon in Charleston regarding a surgery date so perhaps we will hear something this week. I will keep you posted.
As for our Anna Grace, she is 20 weeks old today. I can hardly believe it! I remember going to our 20 week ultrasound with her last year and that was when we were given her diagnosis of Hypoplastic Right Heart Syndrome. The Lord has carried us so far since then through this refining fire.
"From the lips of children and infants you have ordained praise, O Lord" Psalm 8:2
As of today we have not yet heard from the surgeon in Charleston regarding a surgery date so perhaps we will hear something this week. I will keep you posted.
As for our Anna Grace, she is 20 weeks old today. I can hardly believe it! I remember going to our 20 week ultrasound with her last year and that was when we were given her diagnosis of Hypoplastic Right Heart Syndrome. The Lord has carried us so far since then through this refining fire.
"From the lips of children and infants you have ordained praise, O Lord" Psalm 8:2
Tuesday, May 11, 2010
100 plus Days Old
101 to be more precise but who's counting. Anyway, thought I'd post some pictures of Anna Grace from birth until recently. Hopefully these will be an encouragement to those who have been faithful to pray. And be a testimony of the faithfulness of the Lord to hear His saint’s cries. We thank you.
Minutes after birth....
Minutes after surgery...
About 1 week from getting out of the hospital...
Two days ago....
Father I testify, that this world and all that is under, in and above it, is yours to do as you please with it. Though you cause blessing or grief, you alone are worthy to be praised and are always good. You alone are the Sovereign. The glorious Holy One of Israel. The only true Living God. May Christ be magnified in and though our sufferings. Jesus you are enough and truly your grace does abound. Thank you Lord...
Minutes after birth....
Minutes after surgery...
About 1 week from getting out of the hospital...
Two days ago....
Father I testify, that this world and all that is under, in and above it, is yours to do as you please with it. Though you cause blessing or grief, you alone are worthy to be praised and are always good. You alone are the Sovereign. The glorious Holy One of Israel. The only true Living God. May Christ be magnified in and though our sufferings. Jesus you are enough and truly your grace does abound. Thank you Lord...
Sunday, May 9, 2010
Hands That Tell a Story
I’ve heard it said that a picture tells a story. Well let me share about this photo and what it means to me….
Excellent - Precious - Kind - Hard working - Care taker - Intelligent - Stylish - Strong - Soft - Merciful - Tender - Giving - Brave - Able - Cheerful - Teacher - Graceful - Beautiful - Lovely - Faithful
This photo is a picture of my wife’s hands. I testify to God’s word about her the following…
“Charm is deceitful, and beauty is vain, but a woman who fears the Lord is to be praised. Give her of the fruit of her hands, and let her works praise her in the gates.” Proverbs 31:30-31
To my wonderful wife Tina – Thank you for being a great wife and awesome mother to my children. I love you more deeply today than ever, because of Christ' overwhelming grace that's been poured into my life.
Wednesday, May 5, 2010
Anna Grace - May 5
We are home from Charleston, We arrived home last night about 10:30 pm and are trying to get settled back home. It is good to be home!
Now, we just wait for Dr. Bradley to review the heart cath findings and then his staff will contact us about scheduling a surgery date when Dr. Bradley thinks is the best time. We'll be sure to update the BLOG once a date is set.
Anna Grace is recovering well, she seems to be back to her old self again. She's still marked up with dye from the procedure and can't have a proper bath for at least 2 more days - but other than that she looks like her old slef again. We are thankful :)
Thank you all for praying for us :)
Now, we just wait for Dr. Bradley to review the heart cath findings and then his staff will contact us about scheduling a surgery date when Dr. Bradley thinks is the best time. We'll be sure to update the BLOG once a date is set.
Anna Grace is recovering well, she seems to be back to her old self again. She's still marked up with dye from the procedure and can't have a proper bath for at least 2 more days - but other than that she looks like her old slef again. We are thankful :)
Thank you all for praying for us :)
Monday, May 3, 2010
Anna Grace - May 3 - Update #3
Sorry for the delay in getting this last post out. The heart cath went great today - thank you Jesus! The doctor who performed the cath said that the pressures in her heart look great for surgery #2. He did not have to put in any balloons (aka angioplasty) nor did he have to put in any plugs (aka coils). He said he would make a surgical recommendation to Dr. Bradley and that in his estimation she would most likely be having her surgery in June. Of course, Dr Bradley will make the final determiniation of a surgery date. Dr. Bradley is out this week so I imagine that it will be a few weeks before we get a surgery scheduled. It was great gettng these results today and we sincerely appreciate you praying for our Anna Grace. The Lord has truly shown great mercy and we are thankful.
The delay in this post was mostly because our little one was NOT happy when she woke up from her anesthesia. She creid and cried and finally calmed down being rocked in Mommy's arms - once she fell askeep in my arms I wasn't going to put her down & risk waking her :) Since things went so well with the cath today and Anna Grace did great we were released from the hospital today. We are at the townhouse for the night and getting ready to crash out after a long day.
Please continue to pray for Anna Grace - that her body will heal quickly from the cath and that she starts to feel better soon. Also, plese join us in praying for wisom and discernment for Dr. Bradley as her reviews all of this new information and determines a surgery date and a plna of "attack" for Anna Grace's second surgery.
Our plans are to travel home from Charleston either Tuesday or Wednesday - it will really depend on how Anna Grace is feeling - we are flexible on when we travel back home. Thank you Jesus!!!
The delay in this post was mostly because our little one was NOT happy when she woke up from her anesthesia. She creid and cried and finally calmed down being rocked in Mommy's arms - once she fell askeep in my arms I wasn't going to put her down & risk waking her :) Since things went so well with the cath today and Anna Grace did great we were released from the hospital today. We are at the townhouse for the night and getting ready to crash out after a long day.
Please continue to pray for Anna Grace - that her body will heal quickly from the cath and that she starts to feel better soon. Also, plese join us in praying for wisom and discernment for Dr. Bradley as her reviews all of this new information and determines a surgery date and a plna of "attack" for Anna Grace's second surgery.
Our plans are to travel home from Charleston either Tuesday or Wednesday - it will really depend on how Anna Grace is feeling - we are flexible on when we travel back home. Thank you Jesus!!!
Anna Grace - May 3 - Update #2
Just got another page that said...... "They are done with the cath, but haven't removed the catheters or breathing tube yet. We will page you when Anna is back in Same Day." 10:50 am.
Anna Grace - May 3
We arrived in Charleston on Sunday morning - EARLY. As a matter of fact, after Anna Grace woke up Sunday morning at 3:00 am for her bottle we fed her & then threw the kids in the car & headed to Charleston. (We didn't really throw them in the car, don't worry)! The sweet "H" family who owns the townhome where we stayed while we were here for our last hospital stay graciously is allowing us the use of their townhome again. We are SO THANKFUL to the "H" family - it is SUCH A BLESSING to be able to have a homebase while in Charleston. We spent the day at the townhome on Sunday. It was surreal coming back to Charleston. When I walked into the townhome I saw the red couch where I labored with Anna Grace before heading to the hospital to have her. There are such memories for us in that townhome, it is like a second home. It was the first time that Anna Grace has been to the townhouse (outside of my womb that is), for all her stay in Charleston was at the hospital.
So, the doctors told us that Anna Grace was not to have any food or drink after midnight. That's really tough on the little ones, so needless to say there wasn't a whole lot of sleeping last night, but she did pretty well considering. We arrived at the hospital this morning at 5:45 am and got her checked in & then headed to the 6th floor. The nurses took her vitals and then the doctors talked with us about the procedure and the risks. Ugh.....
They took her from us at about 7:30 am. We were given a pager and they will be updating us throughout the procedure today via the pager. It took them an hour to get her anesthetised (sp?) and intubated. We received our first page at 8:30 am stating that they had begun the cath. Most likely they will finish up about 11:00 am and then she'll be in recovery about 3 hours. I'll update the BLOG today as we find out more information. We may or may not be spending the night at the hospital, it all depends on how things go.
Thank you all for praying for Anna Grace and for us. It's a tough day to hand your little one over even if it is only for a heart cath.
So, the doctors told us that Anna Grace was not to have any food or drink after midnight. That's really tough on the little ones, so needless to say there wasn't a whole lot of sleeping last night, but she did pretty well considering. We arrived at the hospital this morning at 5:45 am and got her checked in & then headed to the 6th floor. The nurses took her vitals and then the doctors talked with us about the procedure and the risks. Ugh.....
They took her from us at about 7:30 am. We were given a pager and they will be updating us throughout the procedure today via the pager. It took them an hour to get her anesthetised (sp?) and intubated. We received our first page at 8:30 am stating that they had begun the cath. Most likely they will finish up about 11:00 am and then she'll be in recovery about 3 hours. I'll update the BLOG today as we find out more information. We may or may not be spending the night at the hospital, it all depends on how things go.
Thank you all for praying for Anna Grace and for us. It's a tough day to hand your little one over even if it is only for a heart cath.
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