I was able to go to the hospital last night for a few hours and see Anna Grace. She was battling an AWFUL diaper rash due to an upset tummy from all of the medication that she is on. I am happy to report this morning we talked to her nurse who said that they rigged up something to blow straight oxygen onto her little bottom throughout the night and that her diaper rash is doing much better today. Also, since her white blood cell count is now into normal they have stopped the antibiotic she was on so hopefully her tummy might start feeling a little better today.
She is still able to remain off the ventilator - PRAISE GOD and not only that she has still been able to remain off oxygen (well, she used oxygen for her bottom, but she doesn't need it to breathe) - this is another huge PRAISE!
Will BLOG more later today, but just wanted to give you the more recent update. Please continue to pray for our Anna Grace :)
Saturday, January 2, 2010
Friday, January 1, 2010
Huge Encouragement
Over the Thanksgiving holiday Matt Chandler the lead pastor over at The Village Church found out he had a brain tumor. Doctors quickly removed it and he is currently undergoing treatments to keep it from coming back. Check out his blog here:
Matt’s strength has been a huge encouragement to me during the last month. Seeing another brother in Christ who is suffering and staying strong in Christ has helped me to push harder into Christ for my all in all. I encourage you to pray with me for Matt’s complete healing.
John Piper recently preached at The Village Church to encourage the congregation during Matt’s and The Village’s trial. It was an amazing sermon and the Holy Spirit touched me deeply while listening to it. I highly recommend it.
Listen to it here!
Matt’s strength has been a huge encouragement to me during the last month. Seeing another brother in Christ who is suffering and staying strong in Christ has helped me to push harder into Christ for my all in all. I encourage you to pray with me for Matt’s complete healing.
John Piper recently preached at The Village Church to encourage the congregation during Matt’s and The Village’s trial. It was an amazing sermon and the Holy Spirit touched me deeply while listening to it. I highly recommend it.
Listen to it here!
Anna Grace - January 1
Today I am resting in the bed at the townhouse and Brian is at the hospital with Anna Grace. I talked with Brian and he said that she has been sleeping comfortbly most of the morning. Her nurse said that she is doing well. It is a comfort as a Mommy to know that she is able to rest and appears to not be suffering despite all the tubes coming out of her little body.
Brian stayed with her last night late and didn't get home from the hospital until close to midnight. It is just so hard to leave her each day. We are thankful though that she has such great nurses taking care of her while we are away.
My plans are to try to go to see her for a couple of hours this afternoon. I know I am supposed to rest, but I just have to at least lay eyes on her today. We haven't been able to hold her yet and that is so hard. We are praying that we will be able to hold her for a little while on Monday morning before she goes into surgery.
I am feeling very weary today - physically & emotionally. The Lord tells me:
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. II Corinthians 12:9
I thank you Lord for your Word. I am weak.
Love in Christ,
Tina
Brian stayed with her last night late and didn't get home from the hospital until close to midnight. It is just so hard to leave her each day. We are thankful though that she has such great nurses taking care of her while we are away.
My plans are to try to go to see her for a couple of hours this afternoon. I know I am supposed to rest, but I just have to at least lay eyes on her today. We haven't been able to hold her yet and that is so hard. We are praying that we will be able to hold her for a little while on Monday morning before she goes into surgery.
I am feeling very weary today - physically & emotionally. The Lord tells me:
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. II Corinthians 12:9
I thank you Lord for your Word. I am weak.
Love in Christ,
Tina
Thursday, December 31, 2009
Anna Grace - December 31
I have some time to BLOG because we are not able to go see Anna Grace just yet today. Whenever a Heart baby has surgery or has a problem they "lock down" the PCICU and no visitors are allowed to go in until the baby having the problem is situated & stable. So... today there is a little baby who had been moved from PCICU to the "7C floor", but for some reason is now having to come back to PCICU. So.... we have not yet been able to see our daughter today. We are hanging out in the PCICU waiting room until we are able to go in... along with all the other parents of the heart babies in PCICU. Everyone wants to see their baby, but we all appreciate that they "lock down" when there is a problem. We have been able to talk with Anna Grace's nurse on the phone and she said that Anna Grace had a good night last night. That's all we know about her right now.
So... I went to the doctor this morning to see him about some extensive swelling I have been having in my feet & legs as well as to have him look at my stiches. He said that the swelling I'm having is normal and that the remedy is to lay down with my feet elevated above my heart. So, I have been laying on the floor in the waiting room with my feet propped on a chair. Certainly not ideal but hopefully it will help. He also said that I have had an "extensive repair" and that if I didn't take it easy I would end up back in the hospital. I can't really do that so I'm going to really try to obey as best I can. It's a fine line to walk because I know I need to take care of myself and at the same time I want to be at the hospital with my sick baby. The good news is that he said that both of these problems should be much better in a couple of weeks so hopefully in 2 weeks I'll be doing much better physically and can be there more for Anna Grace.
On another note.... Zachary has been having a big time this week. His Aunt & Uncles & cousins from Charlotte have been staying at the town home along with his Mee-maw & Pops. He is playing all day with his cousins and riding bikes & playing at the playground. He doesn't appear to be missing me too much right now with all of the fun he is having playing with the "big kids". I think his Aunt & Uncle are taking him to the Aquarium today. He's never been to an Aquaarium & I know that he is going to LOVE it.
The townhome that we are staying in has been such a blessing. It is HUGE and really looks like a model home - it far surpasses our needs - God is so good to provide for us what we need and MORE. It's about 15-20 minutes away from the hospital, we couldn't have asked for anything more perfect for our family.
With all that being said we are just trying to hang in there knowing that Monday is going to be one of the toughest days of our life and certainly in Anna Grace's life. It's so hard knowing what she is about to endure. They have been talking with us about some of the details of the surgery, but we haven't talked with her surgeon yet (Dr Bradley). It is overwhelming - especially since she is so tiny. I think we have wept more over the last week than in our entire lives.
Thank you all for continuing to pray for our family and for Anna Grace. Love in Christ - Tina
So... I went to the doctor this morning to see him about some extensive swelling I have been having in my feet & legs as well as to have him look at my stiches. He said that the swelling I'm having is normal and that the remedy is to lay down with my feet elevated above my heart. So, I have been laying on the floor in the waiting room with my feet propped on a chair. Certainly not ideal but hopefully it will help. He also said that I have had an "extensive repair" and that if I didn't take it easy I would end up back in the hospital. I can't really do that so I'm going to really try to obey as best I can. It's a fine line to walk because I know I need to take care of myself and at the same time I want to be at the hospital with my sick baby. The good news is that he said that both of these problems should be much better in a couple of weeks so hopefully in 2 weeks I'll be doing much better physically and can be there more for Anna Grace.
On another note.... Zachary has been having a big time this week. His Aunt & Uncles & cousins from Charlotte have been staying at the town home along with his Mee-maw & Pops. He is playing all day with his cousins and riding bikes & playing at the playground. He doesn't appear to be missing me too much right now with all of the fun he is having playing with the "big kids". I think his Aunt & Uncle are taking him to the Aquarium today. He's never been to an Aquaarium & I know that he is going to LOVE it.
The townhome that we are staying in has been such a blessing. It is HUGE and really looks like a model home - it far surpasses our needs - God is so good to provide for us what we need and MORE. It's about 15-20 minutes away from the hospital, we couldn't have asked for anything more perfect for our family.
With all that being said we are just trying to hang in there knowing that Monday is going to be one of the toughest days of our life and certainly in Anna Grace's life. It's so hard knowing what she is about to endure. They have been talking with us about some of the details of the surgery, but we haven't talked with her surgeon yet (Dr Bradley). It is overwhelming - especially since she is so tiny. I think we have wept more over the last week than in our entire lives.
Thank you all for continuing to pray for our family and for Anna Grace. Love in Christ - Tina
Wednesday, December 30, 2009
Thanks!!!
Anna Grace had a very good day today. Her white blood count came down to within normal ranges, she is breathing very well and is doing some exercising (crying mostly but getting in some ab crunches occasionally). Of course all her exercising is allowing her to get some much needed rest. We are very grateful to the abundance of grace Jesus is pouring into our lives.
We talked with the social worker today about TEFRA. She said that we really can’t complete the application until after Anna Grace’s surgery. After her surgery we will have a complete doctor’s report about her heart. So, as it stands right now we will be completing the application on January 12 and the social worker will help me complete it.
Our family has been wonderful and we are very grateful for them all. From the ones who have been present in Charleston to the ones who can not be here they have all been a huge encouragement to us and we know they are covering us in prayer.
And to the countless friends, most that we know personally but some we do not; we want to say thank you from the bottom of our heart. Please forgive us for not answering all your messages but know we are reading them all. There have been many many messages that have brought us to tears. But most importantly thank you, thank you for your continued prayers! They are felt and the Lord is moving. May you all be blessed for your faithfulness to pray.
Sorry for the short blog tonight but we are both physically and emotionally exhausted.
We talked with the social worker today about TEFRA. She said that we really can’t complete the application until after Anna Grace’s surgery. After her surgery we will have a complete doctor’s report about her heart. So, as it stands right now we will be completing the application on January 12 and the social worker will help me complete it.
Our family has been wonderful and we are very grateful for them all. From the ones who have been present in Charleston to the ones who can not be here they have all been a huge encouragement to us and we know they are covering us in prayer.
And to the countless friends, most that we know personally but some we do not; we want to say thank you from the bottom of our heart. Please forgive us for not answering all your messages but know we are reading them all. There have been many many messages that have brought us to tears. But most importantly thank you, thank you for your continued prayers! They are felt and the Lord is moving. May you all be blessed for your faithfulness to pray.
Sorry for the short blog tonight but we are both physically and emotionally exhausted.
Tuesday, December 29, 2009
Anna Grace - December 29
So... our little girl's surgery is not going to be tomorrow as we had been told. It is being postponed until either Monday or Tuesday next week. Anna Grace has had an elevated white blood cell count (which indicates a sign of infection) & has ben on antibiotics for this since she was born. Although her white blood cell count is coming down the doctors feel that they want her to have a full course (7 days) of antibiotics before they take her into the OR. So... that will mean her surgery will be on Monday or Tuesday but that Tuesday would be the latest. We know that God is in control off ALL the details in this and are trusting HIM. Because her surgery is now going to be next week, the surgeon on call next week is Dr. Bradley. So, Dr. Bradley, not Dr. Shaw, will be doing her surgery. Dr. Bradley is the most senior heart surgeon here at MUSC and has the best statistics with the Norwood Procedure. God is in control, thank you Lord :)
In the meantime, we are praying that Anna Grace's white blood cell count will continue to come down. We are praying that she will be able to continue to stay off the ventilator until her surgery and that she can remain comfortable and gain strength over the next few days as we await her surgery.
On another note.... I am meeting tomorrow morning with a social worker here at MUSC to complete the application for government assistance called TEFRA. It is like Medicaid, but it is not income based assistance - it is diagnosis based. We believe that Anna Grace's diagnosis qualifies her for TEFRA, so please join us in praying that we will qualify for this assistance and that we can get approval for TEFRA soon. We've known about TEFRA for a few months now, but you can't apply for it until the baby is born. So, now that she is here are are working on getting this application expedited as soon as possible.
I am being discharged from the hospital tonight so Brian & I will be leaving our little girl at the hospital tonight when we go back to the townhouse. Although we knew we would have to do it, it is hard to leave you baby at the hospital and go "home" without her. We are blessed that she has had such wonderful nurses looking after her and know that God is with her at all times.
Thank you all for continuing to pray for us. We will keep you updated each day as we know more.
In the meantime, we are praying that Anna Grace's white blood cell count will continue to come down. We are praying that she will be able to continue to stay off the ventilator until her surgery and that she can remain comfortable and gain strength over the next few days as we await her surgery.
On another note.... I am meeting tomorrow morning with a social worker here at MUSC to complete the application for government assistance called TEFRA. It is like Medicaid, but it is not income based assistance - it is diagnosis based. We believe that Anna Grace's diagnosis qualifies her for TEFRA, so please join us in praying that we will qualify for this assistance and that we can get approval for TEFRA soon. We've known about TEFRA for a few months now, but you can't apply for it until the baby is born. So, now that she is here are are working on getting this application expedited as soon as possible.
I am being discharged from the hospital tonight so Brian & I will be leaving our little girl at the hospital tonight when we go back to the townhouse. Although we knew we would have to do it, it is hard to leave you baby at the hospital and go "home" without her. We are blessed that she has had such wonderful nurses looking after her and know that God is with her at all times.
Thank you all for continuing to pray for us. We will keep you updated each day as we know more.
Monday, December 28, 2009
Anna Grace - December 28
Well, our little Anna Grace has arrived! I type this BLOG from my hospital room at MUSC in Charleston. It was a little unexpected, as we had planned to have her by c-section on December 30 - but the Lord had other plans for our little one.
We arrived in Chalreston on Saturday (Dec 26) and I went into labor on Sun (Dec 27). We ended up not having a c-section as planned, but having her "naturally" because my labor progressed pretty much prefectly. She was born on Monday, December 28 at 3:48 am weighing in at 8 pounds 3 ounces! Once she was born there was a "Stabalization Team" waiting for her so I got a quick glace at her before she was quickly wisked away by this team of doctors. They worked on her for 2 hours getting her stabilized before moving her up to the PCICU (Pediatric Cardiology Intensive Care Unit). That's where she is tonight as I type up this e-mail. It is VERY HARD to not have her with me and it has been very hard not being able to hold my sweet little daughter. I stood by her incubator tonight for an hour singing songs to her and holding her little hand. They are also not feeding her (for various reasons) which is very hard as a Mommy to hear your baby cry for milk and not be able to feed her.
The doctors spent pretty much the entire day doing tests on her. There are a multitude of tubes and lines going into her little body, the have done 4 echocardiograms today as well as ultraounds on her brain and kidneys. This evening we talked to the cardiologist who told us that our little girl has Hypoplastic Right Heart Syndrome, but more specifcaly Tricuspid Atresia, Transpoition of the Great Vessels and a CoArch. The tests reveal that she will be having the most complex open heart surgery there is called the Norwood Procedure. They are also going to be unable to wait to do the surgery and as it stands right now her surgery is scheduled for Wednesday morning. Dr Shaw will be doing her surgery and it is a very long open heart surgery as well as risky. However, if we don't do the surgery she will die within 48-72 hours so the surgery has better odds than that. It is a very hard place we are living in right now. Brian and I cried over our little girl today - true gut wrenching sobs. We have also spent time in prayer over our little girl and the doctors today. Please join us in praying that Anna Grace can remain off the ventilator until her surgery and that the Lord will show mercy on our daughter and give her the strenght to make it through the surgery. Also, that the Lord will give us the strength we need to care for her and make tough decisions on her behalf. The doctors have warned us that the next two weeks will be very difficult ones. Lord help us. Please pray for Brian & I over the next couple of days that we are able to get some rest because we are so very tired.
Things I am thankful for today.... That Anna Grace weighed 8 pounds 3 ounces upon her arrival, that despite having to be put on Prostagladin which is a drug that she needs to stay alive but will often times cause babies to "forget" to breathe she is still breathing on her own like a champ and is able to remain off the ventilator, that we have family that traveled to Charleston to take care of Zachary and to be here to support us, for Crossbridge Ministires here in Chalreston who have reached out to us and ministered to us since we have been here, that I had a textbook perfect labor & delivery of Anna Grace, that we have so many friends & family who are praying for us and our sweet girl.
We arrived in Chalreston on Saturday (Dec 26) and I went into labor on Sun (Dec 27). We ended up not having a c-section as planned, but having her "naturally" because my labor progressed pretty much prefectly. She was born on Monday, December 28 at 3:48 am weighing in at 8 pounds 3 ounces! Once she was born there was a "Stabalization Team" waiting for her so I got a quick glace at her before she was quickly wisked away by this team of doctors. They worked on her for 2 hours getting her stabilized before moving her up to the PCICU (Pediatric Cardiology Intensive Care Unit). That's where she is tonight as I type up this e-mail. It is VERY HARD to not have her with me and it has been very hard not being able to hold my sweet little daughter. I stood by her incubator tonight for an hour singing songs to her and holding her little hand. They are also not feeding her (for various reasons) which is very hard as a Mommy to hear your baby cry for milk and not be able to feed her.
The doctors spent pretty much the entire day doing tests on her. There are a multitude of tubes and lines going into her little body, the have done 4 echocardiograms today as well as ultraounds on her brain and kidneys. This evening we talked to the cardiologist who told us that our little girl has Hypoplastic Right Heart Syndrome, but more specifcaly Tricuspid Atresia, Transpoition of the Great Vessels and a CoArch. The tests reveal that she will be having the most complex open heart surgery there is called the Norwood Procedure. They are also going to be unable to wait to do the surgery and as it stands right now her surgery is scheduled for Wednesday morning. Dr Shaw will be doing her surgery and it is a very long open heart surgery as well as risky. However, if we don't do the surgery she will die within 48-72 hours so the surgery has better odds than that. It is a very hard place we are living in right now. Brian and I cried over our little girl today - true gut wrenching sobs. We have also spent time in prayer over our little girl and the doctors today. Please join us in praying that Anna Grace can remain off the ventilator until her surgery and that the Lord will show mercy on our daughter and give her the strenght to make it through the surgery. Also, that the Lord will give us the strength we need to care for her and make tough decisions on her behalf. The doctors have warned us that the next two weeks will be very difficult ones. Lord help us. Please pray for Brian & I over the next couple of days that we are able to get some rest because we are so very tired.
Things I am thankful for today.... That Anna Grace weighed 8 pounds 3 ounces upon her arrival, that despite having to be put on Prostagladin which is a drug that she needs to stay alive but will often times cause babies to "forget" to breathe she is still breathing on her own like a champ and is able to remain off the ventilator, that we have family that traveled to Charleston to take care of Zachary and to be here to support us, for Crossbridge Ministires here in Chalreston who have reached out to us and ministered to us since we have been here, that I had a textbook perfect labor & delivery of Anna Grace, that we have so many friends & family who are praying for us and our sweet girl.
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