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
Friday, January 1, 2010
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.
Wednesday, December 23, 2009
Anna Grace - December 23
Just got home from two doctors appointments this morning. The first was with my regular OB/GYN. They weighed me (I'm officially 50 pounds heavier today than when I started this pregnancy!) and checked my blood pressure (120/80 - looking good!). They also did an ultrasound on Anna Grace which showed that she does still have fluid on her abdomen although it does not appear to have increased. Anna Grace - although she was squirming - was not practicing breathing today which concerned me a little bit because she's uaually a champ at breathing. From there I saw the doc who checked my cervix and said that it was intact and that I would not be having a baby today :) That was super great news! Since today was my last visit there before Anna Grace's birth they asked me to keep them posted on her progress and I said that I would.
From there I headed over to Dr. G's office. They performed another ultrasound which showed the same thing as the first ultrasound. Since she was not practicing breathing they wanted to put me on the monitor for 20 minutes to check out her activity - which of course showed that my daughter's heart beat was steady and normal and that she is a VERY active little girl who never, ever sits still! What a blessing! Dr. G came in to talk with me after that and said that he & his office would be praying for us and asked me to keep him updated on her progreses. All of the staff there came to hug me and tell me goodbye since that was our "final" appointment there. They also asked for our BLOG address and said they would check out our updates on AG here. It truly was bittersweet saying good-bye to them. What a blessing they have truly, truly been to our family!
So, as it stands right now, we are still planning on going to Charleston on Dec 26. I have an appointment with the doctor there on Dec 28 and then she is scheduled to be born on Dec 30 (unless she comes sooner)! This time next week my little girl will be born. I am excited to meet her and yet wish that it wasn't quite time for her yet knowing all that she will have to endure upon her birth.
Thank you all for continuning to pray for us - specifically that things go well for her birth, for God to give her strength & endurance once she is out of my womb, for wisdom and discernment for the surgeons and doctors who will be treating her, for peace and security for Zach while he adjusts to the new home and being away from Mommy & Daddy and for comfort & wisdom for Brian & I. God is soverign and we trust Him - Amen!
From there I headed over to Dr. G's office. They performed another ultrasound which showed the same thing as the first ultrasound. Since she was not practicing breathing they wanted to put me on the monitor for 20 minutes to check out her activity - which of course showed that my daughter's heart beat was steady and normal and that she is a VERY active little girl who never, ever sits still! What a blessing! Dr. G came in to talk with me after that and said that he & his office would be praying for us and asked me to keep him updated on her progreses. All of the staff there came to hug me and tell me goodbye since that was our "final" appointment there. They also asked for our BLOG address and said they would check out our updates on AG here. It truly was bittersweet saying good-bye to them. What a blessing they have truly, truly been to our family!
So, as it stands right now, we are still planning on going to Charleston on Dec 26. I have an appointment with the doctor there on Dec 28 and then she is scheduled to be born on Dec 30 (unless she comes sooner)! This time next week my little girl will be born. I am excited to meet her and yet wish that it wasn't quite time for her yet knowing all that she will have to endure upon her birth.
Thank you all for continuning to pray for us - specifically that things go well for her birth, for God to give her strength & endurance once she is out of my womb, for wisdom and discernment for the surgeons and doctors who will be treating her, for peace and security for Zach while he adjusts to the new home and being away from Mommy & Daddy and for comfort & wisdom for Brian & I. God is soverign and we trust Him - Amen!
Thursday, December 17, 2009
Anna Grace - December 17
The appointment with Dr. G went very well today. I was having some "pains" last night - not sure if there were contractions or what they were specifically, but it was enough to send me to bed and I was scared that we might be having an unexpected delivery in Greenville. Thankfully after some prayers & rest the pain subsided. I mentioned it to Dr. G today & he said that I most likely did too much yesterday and that I needed to rest more. Not an easy task with a very active 2-year old boy at home, but I promised to try :) My cervix looked good & they monitored my tummy for contractions for 20 minutes & there were none - praise God!
As for our little Anna Grace..... she weighs in today at 6 pounds 9 ounces. The amniotic fluid surrounding her looked good and the fluid on her abdomen has not increased - again - praise the Lord! As usual, she was squirming and moving & giving them a hard time as they were trying to look at all of the "things" they needed to see, but what a wonderful sign that she is thriving & comfortable - always a blessing for Mommy to see!
So, since she was doing so well I don't have to see Dr. G again until Wednesday next week (12/23) unless of course I feel a decrease in her movement. That will be my last appointment with Dr. G. He has been such a part of our journey it will be strange to not see him a couple of times each week. He will be one person we will certainly be making a visit to once Anna Grace is home & doing well. What a sweet day that will be!
So, right now the plan is to leave for Charleston the day after Christmas. We will have an appointment in Charleston on Monday the 28th for a final look at Anna Grace before her scheduled delivery on December 30th. I can't believe it's almost time for her to be born - I am excited & nervous all at the same time.
We thank you all for your continued prayers for our family and for Anna Grace.
As for our little Anna Grace..... she weighs in today at 6 pounds 9 ounces. The amniotic fluid surrounding her looked good and the fluid on her abdomen has not increased - again - praise the Lord! As usual, she was squirming and moving & giving them a hard time as they were trying to look at all of the "things" they needed to see, but what a wonderful sign that she is thriving & comfortable - always a blessing for Mommy to see!
So, since she was doing so well I don't have to see Dr. G again until Wednesday next week (12/23) unless of course I feel a decrease in her movement. That will be my last appointment with Dr. G. He has been such a part of our journey it will be strange to not see him a couple of times each week. He will be one person we will certainly be making a visit to once Anna Grace is home & doing well. What a sweet day that will be!
So, right now the plan is to leave for Charleston the day after Christmas. We will have an appointment in Charleston on Monday the 28th for a final look at Anna Grace before her scheduled delivery on December 30th. I can't believe it's almost time for her to be born - I am excited & nervous all at the same time.
We thank you all for your continued prayers for our family and for Anna Grace.
Subscribe to:
Posts (Atom)
