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

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.

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.

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.

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!

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.

Tighten Down With Christ

Today my wife and I had two car seats installed at the Greer Fire Department in preparation for the arrival of Anna Grace coming sometime within the next two weeks. As one of the firemen was installing the base in the back of my jeep I asked what was the most common mistake he see’s with self installed car seats. He said most are installed by individuals, which turn out to be to loose and then went on to tell me this story:

“I pulled a call the other day where a woman was blindsided and hit from the side. The impact sent her child locked in the car seat all the way across the car and the child’s head hit the other side window. The seat belt holding the car seat was not tight enough.”

As I was driving home I thought this sounds like a good analogy with the way most people are in their faith with God. People have the tendency to just tighten up their relationship with God enough to make them feel safe. Attend church sometimes; give once to twice a year if that much, read God’s word maybe a few times a year, pray only when things get really bad or maybe just pray over dinner. They tighten Christ around themselves just enough to feel safe but leave the belt of life just loose enough to not have Him controlling them completely.

Then when life produces some kind of crash they fly across the car of life and smack their head against the realities of this world. They become bewildered and shaken up, sometimes not knowing how they will survive the trial they find themselves in.

Let me encourage you today to allow Jesus Christ to buckle you down tight. Seek Him with all your might while He might be found. Ask God to tighten your life seat belt by enlightening the eyes of your heart and renewing your minds to His overarching sovereignty and control in all things. Ask God to reveal sin, grant repentance and increase faith in your lives. He is faithful and will not disappoint those who seek Him in humility.

I’m no stranger in understanding the need to have a tight seat belt in this life. With Anna Grace’s possible heart issues, I take comfort in knowing that my seat belt is God. Although the road may get rough and I can feel the every bump, I’m securely planted and rooted in my Savior who is the Christ and His name is Jesus. May He receive the glory that is due to Him and Him only through my trials and sufferings.

Anna Grace - December 14

Today was a very good appointment with Dr. G. Anna Grace's heartbeart was strong & steady at 158 BPM. My amniotic fluid looked good and the fluid on her abdomen has NOT increased (Praise God)! While I was there Anna Grace was practicing breathing - apparently this is a normal thing babies at this age do in-utero and it means that she is being a "normal" baby :) She was also so very active that the ultrasound tech could hardly get the pictures that she needed - also a very good sign that she is doing well today. I also had the privilage of looking at her face today which I have to brag on...... she has the chubbiest little cheeks you have ever seen AND we also noticed that she has some little fat rolls on her legs. What joy it brought to me that I just had to share it with you too!!!!

So... things went SO well at today's visit that I don't have to go back to see Dr. G again until Thursday - unless of course I notice a decrease in her movement between now & then.

There is still much to be in prayer over.... that her little heart will continue to sustain her, that the fluid on her abdomen will remain as it is or decrease, that she will continue to gain weight and strength, that she will be able to remain in my womb until December 30. There is also SO MUCH to be praising God for.... truly everything about today's visit was an answered prayer. Thank you all for continuing to be faithful to pray for our sweet Anna Grace!

Anna Grace - December 11

Today's doctor visit was a good one. The ultrasound showed that Anna Grace still has fluid on her abdomen, but that is does not appear to have increased - which is a good sign that her heart is holding steady. On a positive note, my amniotic fluid has increased (praise God)! Dr. G gave us the option of going down to Charleston today to have the doctor's there look at Anna Grace to determine if she needed to go ahead & be delivered or not. He said that most likely what would occur if we did that is that they would want to watch her & do another ultrasound on Monday to determine if she needed to be delivered. So, Brian & I decided to stay in town & we will go back to Greenville on Monday to see Dr. G for another ultrasound and then make a determination at that time about going to Charleston for delivery on Monday. He did caution us that if Anna Grace's movements decreased at all over the weekend that I am to go to the hospital in Greenville - so please join us in praying that she remains an active little girl throughout the weekend and we can go see Dr. G in Greenville on Monday as planned.

Some other pretty amazing things occured while we were at our visit with Dr. G this morning. The sweet nurse who usually sees me was there again today & performed my ultrasound as usual. During our time together today, Brian was able to share his testimony with her as well as share the Gospel with her. She began to cry as Brian shared how the Lord saved Him and I of course being pregnant began to cry too. She gave us both a hug and left the room. Then Dr. G came in and asked why we were making his staff cry :) Brian told Dr. G that he was sharing with her how God saved him. At that point Brian thanked Dr. G for waiving our fee for his services (which he has done for our last three appointments) and Dr. G said that this was his ministry and that he was glad to do it. Brian asked Dr. G if he could pray for him and he said yes, so the three of us prayed together in Dr. G's office. Friends, we ask you to please join us in praying for Dr. G and his office - they have truly been a blessing to us - certainly not a coincidence - but a blessing from our sweet Savior :)

Also, on another note - we had some roofers come to the house yesterday to patch our leaky roof. They feel pretty sure that they were able to fix the leaks (at least for the time being). They did not charge us for their services. We didn't share with them our situation with Anna Grace so we're not really sure why they didn't charge us for their services, but we are thankful for their generosity. If anyone needs a roofer we have one to recommend :)

One more blessing to share with everyone.... Crossbridge Ministries is a ministry in Charleston who we met with when we were there in September. They basically minister to families who have sick children/family members at MUSC and are in Charleston from out-of-town. They become your friends & church away from home while you are away from home. They have been faithful to pray for us and for Anna Grace since they found out about our story. I e-mailed them yesterday to let them know that we might be heading to Charleston earlier than expected as well as to let them know the location of the townhome where we will be staying while we are in Charleston. The director from Crossbridge e-mailed me back & told me that that we would be virtually across the street from each other. Truly, that is a blessing and again, not a coincidence. How wonderful to have a Christian support system whlie we are going to be away from home.

So.... we have all our bags packed and I suppose we will just keep them packed as we don't know when we will be heading down to Charleston. But for the time being we are enjoying being home together and our little girl has a few more days of comfort in my womb. Z will be home from his Grandparents in the morning so Brian & I are going to have a quiet evening together tonight.

Anna Grace - December 9

Just got home from the Maternal Fetal doctor appointment. Dr. G said that my amniotic fluid has stayed steady, which is a huge PRAISE. However, he noticed that Anna Grace has fluid build up in her abdomen. He said that this is an indication that her heart is failing and is unable to pump the fluid through her body. He said that he wanted to see me again on Friday morning to look at the fluid in her abdomen. If it has increased he's going to send me down to Chalreston for delivery. There is some concern about her lung development because she is only 36 weeks along, but there is not enough amniotic fluid to do an amniocentesis to check her lung development. So, basically, if there is increased fluid in her abdomen on Friday she is going to have to be delivered whether her lungs are developed or not becase it means her heart is failing. He also said that if I noticed a decrease in her movement today or tomorrow to come right into the office to be checked.

So, please be praying that Anna Grace's little heart can sustain her for a little while longer so that she can remain in my womb as long as possible. Also, please pray for discernment for me - for me to be able to tell if there is decrease in activity and I need to go ahead & go to the doctor. Please pray for Zachary to handle all of these changes well because things could change for him very quickly. Please pray for strength for my husband Brian - being the leader of family is a huge responsibility. Also, not quite as big, but certainly something to be prying for.... with all of this rain we've had we have had several roof leaks so we really need a roofer to come and at least fix these leaks in our roof pretty quickly so that we don't come home to a HUGE mess.

Things I am thankful for.... for Dr. G who cares so much about Anna Grace, for Mrs. L who is so faithful to keep Z for us, for my husband who I can not imagine going through without his love & support and most importantly - for our Lord who promises to "strengthen and help me and uphold me in His righteous right hand".

Anna Grace - December 4

We had an appointment with the Maternal Fetal doctor in Greenville on Friday (Dec 4). Our appointment was early (8:30) so we had an early morning of dropping off Z with Mrs. L to get to Greenville on time.

Let me just stop for a moment here & say THANK YOU to Mrs. L for being SO FAITHFUL to keep Z for us during our many doctor appointments. She never says "no", although there are plenty of times I'm sure she's had to rearrange her schedule to accomodate us. She is truly a blessing to our family and Z just LOVES going to her house :)

So... as Brian & I are sitting in the waiting room of the Maternal Fetal doctor's office in walks Anna Grace's Cardiologist. We did not have an appointment with him and this is not his office. When I saw him I said "Wow, I didn't expect to get to see you today" to which he replied "I'm just here to see you for a social visit". Now, for those of you who may not know, we don't have Maternity Insurance so, if we had an appointment with the Cardiologist the "office" would have had to charge us, so this sweet doctor took time away from his day to come see us away from his office for a "social" visit. So, they called us back & we had our ultrasound of our little Anna Grace. She looked great and appears to be growing normally (with the exception of her heart). She weighs in at a whopping 6 pounds 3 ounces (PRASIE GOD) and was a very active little wiggle worm. We were also blessed to have been able to just look at her little face in 4D. It's amazing technology and we were able to see even the most minor little details of her face. She has chubby little cheeks and a dimple on her chin and the cutest little pouty lips you've ever seen. The also has fat little arms & fingers. So basically I'm saying that she is SUPER CUTE!!!!!! It was a very sweet time to just look at her so peaceful, perfectly content in my womb :)

After all the "pictures" the Cardiologist came in for our "social" visit which he informed us that her heart looked the same (Hypoplastic Right Heart Syndrome) so we can still expect to deliver her in Charleston & she will still be having her first surgery most likely when she is about 2 days old. He also wanted to be sure that we knew how things would "play out" once she was born. She'll have to be put on a ventilator immediately and will have a feeding tube inserted as well as other "lines" run. She will be in the Pediatric ICU - unless there is no room there - in which case she will be in the Neonatal Intensive Care Unit. They will start doing testing on her immediately once she is out of the womb to confirm the findings of her "in womb" echocardiograms. Then the surgeons will come up with her specific "surgery game plan". It's all going to be pretty quick. At the conculsion of our meeting with the Cardiologist, Dr. R, he prayed for us and for Anna Grace. We won't see Dr. R again until after Anna Grace is home from Charleston. He will be her "regular" cardiologist in Greenville. I am truly thankful that God brought us to Dr. R. He has certainly ministered to our family and we are grateful that he will be Anna Grace's doctor.

After we met with Dr. R - then we met with the Maternal Fetal dcotor, Dr. G. He told us that my amniotic fluid is low and that he wants to monitor it closely. He said if it drops below a certain point he will go ahead & send us to Charleston to have Anna Grace delivered early. So there is a possibility that she will be born BEFORE December 30th. Please contunite to pray with us that this does not hapen and that she can be born on December 30 as scheduled. As uncomfortable as these last few weeks of pregnancy are, I really want my little one to get as big & strong as she can be before she has her first surgery. Dr. G said that everything else about her looks great and normal. Dr. G was also very generous with us and did not charge us for his visit on Friday. It truly is a testimony of how God is taking care of all these details for us through this journey. Thank you Lord :)

So.... as of today, I am trying not to be anxious, although I have to admit it is difficult for me. She's going to be here very soon and we don't know what her future holds. We are TRUSTING GOD that whatever plan He has for our family is perfect. We are also TRUSTING GOD that He will give us the strength to make it through each day of this journey. Thank you friends for continuing to pray for us & encourage us & love on us. You will NEVER KNOW how much it means.

Bread of Life is the Word of Life that leads to Eternal Life

There are some text in the bible that are just plain tough to wrap our minds around, but nevertheless they are still God’s inspired written word, and they do need to be dealt with if we are to grow in the Lord and help others grow as well. John chapter 6 has some of these texts. I encourage you to listen to John Piper preach and try to deal with these text as he moves his church through the Gospel of John.

Unfortunately, to really get up to speed you need to listen to November 22nd's message (50 minutes), and then to his most recent message on November 29 (50 minutes)

I hope you enjoy!

I Weep Not For Myself

I’m currently reading A Pilgrim Who Made Progress – The Life Story of John Bunyan Author of the Pilgrim’s Progress by William Deal. Mr. Bunyan was put in jail for preaching without a license in 1660 and one year later his wife Elizabeth Bunyan went before the judges to argue for her husband’s release. Here is a small excerpt from the book:

Elizabeth, now quiet upset, replied (to Judge Twisden), “He preaches nothing but the Word of God!”

At this, Twisden, white with rage shouted, “He preach the word of God! He runneth up and down the country and doth harm too many people!”

Standing firmly, Elizabeth looked at him with tender eyes and replied, “No, my Lord, it is not so; God has owned him and done much good by him.”

Twisden replied, “God! His (Bunyan’s) doctrine is the doctrine of the devil!”

Elizabeth standing calmly replied, “My Lord, when the Righteous Judge shall appear, it will be known that his doctrine is not the doctrine of the devil!”

Elizabeth weeping went on, “I weep not for myself, nor for John Bunyan; our case is in God’s hands. I weep to think of what a sad day it will be when you poor creatures who have so treated him today shall stand before the Judge of the universe to give an account of your deeds!”

John Bunyan was released from prison 11 years later. One main reason he stayed in prison so long I believe is because of comments like this:

John Bunyan being led away by the bailiffs turned and shouted to the justices, “If I were out of jail today, I would preach the Gospel tomorrow!” John did continue to preach from the jail to prisoners and some outsiders each Sunday; So much for silencing God’s Word which will never happen.

Lord thank you for John and Elizabeth Bunyan!