Anna Grace - February 24

Anna Grace had an indepth hearing screening this morning in Greenville. She had a newborn hearing test in the hospital in Charleston and passed it, but it is standard practice if your baby has been on heart/lung bypass to have an indepth hearing screen because apparently that can cause damage. So, off we went to Greenville for a lenghty test. Anna Grace did great for the test - she creid a little at the beginning and then settled down after about 10 minutes and some sweet singing from Daddy :) Then she slept for the remainder of the test. She passed the hearing test in both ears and we were sent on our way. The test lasted about an hour and I am thankful that it went so well for the actual test and that she has good hearing in both ears.

Anna Grace has been extremely fussy these last few weeks because this formula she has been on (Portagen) is quite awful on her tummy. It gives her diareah and makes her throw up. I think it also makes her stomach cramp and I said to Brian the other day that basically if she is awake she is crying. Brian said that was an exaggeration, and it might be to some degree, but she really doesn't tolerate the Portagen well at all and cries most of the time she is awake. So, just to clarify, she has to drink the Portagen becuase she developed a condition called Chylothorax as a result of damage done to her lymphatic system during her open heart surgery. Chylothorax is a condition that means that her body can not process fat. If she eats fat then it dumps the fat into her chest cavity in the form of fluid build up around her lungs. This fluid accumulation around her lungs causes her not to be able to breathe. So, it's not that her tummy can digest the fat, it's that the fat causes fluid build up around her lungs. So, there are only two formulas that are produced - one is called Infaport and the other is called Portagen - these formulas are prescription only formulas and they are made with medium chain fatty acdis as opposed to long chain fatty acids that you find in breast milk or regular formula. The Infaport is designed for babies 12 months and younger and the portagen is for babies 12 months and older. Well, in the hospital we tried the Infaport and she cried & cried and vomited the whole time she was on that one. So, we switched her to Portagen. She has tolerated it better than the Infaport and since there is no other option that is where we remain. Anyway, the doctors said that sometimes the lymphatic system can heal itself if given time so they said after 6 weeks on the Portagen that we can reintroduce breast milk again. So, this coming up Monday (March 1) will be 6 weeks since she has been on the Portagen so, Monday we can reintroduce the breast milk. I am asking you to please PRAY that the Lord has healed her lymphatic system and that she will be able to process that fat in the breast milk that we give her starting Monday. If not, then we have to go back to the hospital for another chest tube to drain the fluid from around her lungs and then she has to go back on the Portagen formula. I hate the Portagen formula - even more than the chest tube. Strong words I know - but it makes her so sick, it makes her cry, it makes her vomit, it is so awful - I dread it each time I have to feed her. She cries because she's hungry and then she cries because she ate the Portagen and it makes her sick. Please join us in praying over this for Anna Grace.

Anna Grace - February 19

Anna Grace had an appointment this morning with her cardiologist in Greenville. It went well and her vitals were "normal" for Anna Grace. She is growing despite being on her fat-free portagen diet - she weighed in at 9 pounds 14 ounces today - YEAH! She sees her cardiologist again in 2 weeks and at that time he will perform a chest x-ray and echocardiogram. The chest x-ray will be our "baseline" chest x-ray before we start her on breast milk again. As soon as we have the next chest x-ray we can take her off the portagen and start her on the breast milk. Then we will follow-up again with another chest x-ray to see if she is having fluid buildup in her chest (due to damage done to her lymphatic system during her open heart surgery she developed chylothorax which has made her unable to process normal fat). If ther is no fluid build up, then she can continue with the breast milk. If there is fluid build up, then she will have to go back on the portagen. Please join us in praying that she will be able to tolerate the breast milk once we introduce it.

So, all in all a very good day today for Anna Grace. We are thankful.

Anna Grace - February 19

Anna Grace saw her cardiologist this morning in Greenville. It was a routine check-up and things looked good! They took her vitals and all was "normal" for Anna Grace. She is also continuing to gain weight despite being on Portagen - she weighed 9 pounds 14 ounces today! We see the cardiologist again on March 2 - he will perform a chest x-ray and another echocardiogram at that visit. The x-ray will be our "baseline" x-ray & we can start giving Anna Grace breast milk in her bottle once the x-ray has been taken. The we will monitor her chest via chest x-rays once she has started taking breat milk to see if her lymphatic system has been healed and her chylothorax has gone away. Please join us in praying that she won't have any more issues with the chylorthorax and that we can introduce her to "regular" food. I think this will alleviate a lot of her tummy problems if she can get off the Portagen.

All in all, a good day!

Anna Grace - February 16

We had a really great night last night - Anna Grace only woke up once last night (2:30 am) to eat. She was awake for about an hour & then back to sleep. She woke up again at 6:30 am. So, all in all Mommy is feeling pretty good today since I had a few hours of sleep. I've also had 2 cups of coffee this morning :)

Praying for a smooth day today! Maybe I'll even get a shower today :)

Anna Grace - February 13

Anna Grace had her check-up yesterday with the pediatrician. Since he is strongly encouraging our quarantine he has made special provision for us when we come to his office. I just call him on the way there & then I come in through the back door & they have a room waiting for us. No waiting, no check-in, no mingling with others. We also don't have to check out, just back out through the back door. It is making our frequent doctor visits much easier :)

So, he listened to her heart & lungs yesterday & said they sounded good. He also weighed her - she weighed in at 9 pounds 8 ounces. So, she has gained some weight since the last visit - that is good news. We go back again in a couple of weeks for him to continue to monitor her. Thank you Lord that we have been able to see her grow and get stronger. Thank you Lord that we have been able to remain home with our daughter. We are so blessed!!!!!

I followed Anna Grace's appointment with my own appointment - 6 week post-partum follow-up (oh, fun)! When I got there they asked me if I was "breast or bottle feeding". I said bottle and it made me a little sad. I have a love/hate relationship with breast feeding (as those of you who know me know about), but I am sad that I don't even have the option with Anna Grace. I am still pumping in hopes that on March 1 we will be able to reintroduce breast milk and that she will be able to tolerate it, but I won't actually be able to nurse her because we won't be able to see how much milk she is taking. So.... it's going to be the bottle for Anna Grace. Other than that it was a good appointment - I still have 15 pounds left to lose and I got the green light to resume normal activities.

Thank you all for continuing to pray for us and for ministering to us this week with meals, notes & calls. We love and appreciate your faithfulness :)

Are You Suffering or Facing Trials

1 Peter 1:6-7

6 In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials,

7 so that the tested genuineness of your faith – more precious than gold that perishes though it is tested by fire – may be found to result in praise and glory and honor at the revelation of Jesus Christ.

Servant of Christ who is currently experiencing suffering or trials let the above verses bring you hope. We can take heart that God has a purpose for our trials and is in control of our circumstances.

Notice how verse 6 tells us to not to be down and in despair because of where we find ourselves in life, but to rejoice. Why rejoice? We should rejoice that while in the midst of the fire of our trials we can take heart our circumstances will “be found to result” result in what? Result “in praise and glory and honor at the revelation of Jesus Christ.”

Our trials are used by God to set a stage and platform for us, for people to see our focus is not on our (sufferings-trials), but on Jesus Christ. Doing this causes our faith to be seen as a true shining light in a dead dark and dying world.

Rejoicing in the depths of our suffering says to the world - "Christ is enough - Christ is enough!"

Anna Grace - February 10

So this week we have been trying to get adjusted and get on a schedule. The schedule is not going too hot really. I did Babywise with Zachary and so I thought with my second baby I would do the same thing, but Anna Gace is special and Babywise is not really working for her. So.... I am trying to do a "modified" version of Babywise to fit Anna Grace's needs a little bit better. We'll see how it goes. So, as for now - I have my hands full with a newborn & a three year old who hasn't seen his Mommy for 6 weeks - needless to say my kids BOTH need me a lot right now which means not a lot of time for blogging.

We had an interview with the TEFRA representative on Tuesday. TEFRA is an insurance we are applying for for Anna Grace which - if she gets approved will help tremendously with all of her doctor & hospital expenses. Please join us in praying for this. We know that the Lord will provide for us - if not through TEFRA then another way. But, it certainly is a need that we have.

Also, tomorrow (Friday) Anna Grace has a doctor appointment with our pediatrician. Just a routine visit which for her will be every other week for the next 4 months or so. I am praying that she will have gained some weight since her visit last week. This is a big deal for her - that she is gaining since she is on the "fat free" Portagen diet. Poor little thing really does not like the Portagen - just a few more weeks until we can try introducing breast milk. I can't WAIT....

I am also going for my 6 week OB/GYN follow-up appointment on Friday. I can't beleive it has been 6 weeks since my baby was born. Wow, it has been a whirlwind!

I also want to say how happy I am to be home. It is so good to be home, it is so good to be home - I am so thankful to be home! We are blessed... tired.... but blessed!

February 7

I was able to go to Church this mornig and worship. Brian stayed home with the kids. It was so nice to be a part of corporate worship today - in the Lord's house. I am thankful that I have a husband who was willing & encouraging me to go, truly I am blessed.

I didn't realize that today was the superbowl until it was talked about at Church today, I am so out of touch......

Anna Grace - February 6

I want to take a moment and post a "thank you" note to all of you. There have been so many people who have mailed gifts to us, to Anna Grace and to Zachary over the past 6 weeks - who have brought us food, care packages, sent notes, made visits, given us gift cards and have ministered to our family in a number of ways. Since I have been at the hospital with Anna Grace during most of that time I am sorry to say that I have been negligent in sending thank you notes to many of you. In the hustle and bustle of the hospital and now getting back home I just haven't been able to do it. I want you to know that we REALLY APPRECIATE everything that has been done for our family - the gifts, the prayers, the notes. Truly, we are thankful - I hope this post in no way dimishes our gratitude to you and I hope that you know that we are grateful and humbeled as a family to be loved and cared for by so many people. Thank you for loving us and for ministering to us. We certainly couldn't have made this journey without the support and encouragement of our friends and family.

Love in Christ,
Tina

Anna Grace - February 5

Today Anna Grace an appointment with her cardiologist, Dr R. The appointment consisted of vitals, an EKG and an echocardiogram. It all showed that everything looked thae same as it did in Charleston so that was good. No medication changes & no activity changes (I thought that was funny since she is a newborn)! It was great to see Dr. R again and formally introduce him to Anna Grace. He was following her while she was in-utero and it truly was wonderful to finally get to present her to him outside of the womb! We are thrilled that he is the doctor who is going to be helping us take care of our daughter. So, we see him again in 2 weeks - and that will be our pattern until her 2nd open heart surgery - see Dr. R every two weeks - unless there is a problem in which case we will see him sooner. Praying that is NOT going to be the case :)

So, after her doctor appointment & the family was settled at home I thought I would take advantage of Mee-Mee's last day with us & run an errond. I needed to go ahead & have her prescriptions transferred from MUSC to a local pharmacy. So, I went by CVS and they told me they couldn't fill her prescriptions. They told me to try Ford Drugs. So... I went to Ford Drugs and they told me they couldn't fill her prescriptions. They told me to try the hospital outpatient pharmacy. So, off I went to the hospital. After talking with the pharmacist there, she ASSURED me that they would be able to fill her prescriptions there and I was thankful to have found a place close by that we could get the needed prescriptions for Anna Grace. Since her prescriptions have to be "compounded" just not any pharmacy can take care of us. We are SPECIAL :) So... to any & all heart Moms out there with new single-ventricle babies (rare as we may be).... go straight to your hospital pharmacy to get your prescripstions filled - your local pharmacy will probably NOT be able to do this for you :)

I am home now, Mee-Mee has left to go back to her home so it is just me and the kids here. I have to admit, it is a little intimidating. I'm in charge????????? Glad today is Friday & Daddy will be home with us for a couple of days :)

Why Good Theology Is Important

Watch this short 2 minute video about why theology is important. The video was made by Tristan Carnahan for Joshua Harris' contest about his recent book Dug Down Deep. There were 5 finalist and this one was my favorite. My favorite line is "We are all theologians." How true, how true this is....

Enjoy!

DugDownDeep_Carnahan.mov from Covenant Life Church on Vimeo.

First Importance

1 Corinthians 15:3
“For I delivered to you as of first importance what I also received: that Christ died for our sins in accordance with the Scriptures,”


Sometimes we get bogged down in the worldly way of doing things. What will get and hold peoples attention? Am I culturally relevant? How can I relate to my kids? How do I handle my money? How do I better my marriage? On and on I could go with example after example of how we try to fix our lives with everything other than the only thing that has power - The Gospel of Jesus Christ.

The fact is the apostle Paul had one answer for all the above questions. Preach the Gospel! Preach it all the time. Live the Gospel out loud and speak it out loud. It was of the “first importance” Scripture tells us being brought to the Corinthian church. Why? Because it’s the only message that can change, fix, repair, and save from all the damage caused by sin.

The Gospel is all we have and all there is. But the real questions we should be asking ourselves are these: Do I really know what the Gospel is? And if I think I know it, why is it not transforming my life? And if I believe it's transformed my life, why am I not trying to help others be transformed by speaking the Gospel into their lives?

Anna Grace - February 4

Things are going well today - Mommy is tired from middle of the night feedings - but, such is life with a newborn! Our Mee-Mee has been such a big help this week, I am going to be SAD to see her go tomorrow! Zachary still can't let me out of his sight for fear that I'm going to leave him again - I am praying that with time this will pass for him. ALso, praying that we won't have ANY reson to go back to the hospital before our scheduled Heart Cath on May 10 :) Quarantine, quarantine, quarantine!

I wanted to also let you all know Anna Grace's "official technical" diagnosis. There were some more additional things wrong with her heart than we thought before her surgery. Our daughter is truly a living, breathing miracle - may I NEVER take her for granted or forget how merciful God has been to our family.

She does have "Hypoplastic Right Heart Syndrome" - but that is just the broad general name of her diagnosis. Specifially, listed below are Anna Grace's heart defects.

Diagnosis:
Tricuspid Atresia
Transposition of the Great Arteries
Aortic CoArctation
Ventricular Septal Defect
Pulmonary Stenosis
Patent Foramen Ovale

Whew..... truly a miracle that we are home with our daughter! Praise be to GOD!

Anna Grace - February 3

We made it to the pediatrician's office this morning :) We are so blessed to have a Christian pediatrician who has been praying for Anna Grace through this journey with us. He was thrilled to see us there this morning and we were thrilled to finally be having our first "regular" doctor's appointment. So, our little one weighed in this morning at a whopping nine pounds even!!!! Other than having a "special heart" she is a very normal baby. We will be visiting him again next week for a follow up, but so far so good :)

We had a pretty good night last night too. Mee-maw & Pos as well as Mee-Mee all came to visit and help. It was much appreciated and Mommy got to have a shower AND blow dry her hair :) Anna Grace slept well last night and went right back to sleep following each feeding. I'm hoping to catch a nap this afternoon as well as continue to put my house back in order - it's crazy how much unpacking there is to do after bring gone for 6 weeks!!!!

So... Cardiologist on Friday.... other than that I am hoping it will b e a pretty uneventful week!

Anna Grace - February 2

We are home. Had a good first night at home together, I think the whole family, including Anna Grace, is happy to be home and all together. Now, to just find our new routine & our new normal..... it's going to take some time I think.

Anna Grace has an appointment with her pediatrician tomorrow (Wed) and an appointment with her Cardiologist on Friday. Thankfully, Mee-Mee is staying with us this week to help watch Zachary and to cook for us as we are getting used to having a very special baby #2. We are so thankful for all of the help all of our parents have given us throughout this journey - we wouldn't be able to do it without them!!!!!

So, now just trying to get our new routine and stay well :)

Anna Grace - February 1

Well, the doctors just made rounds and we have the green light to go HOME!!!! So, they are making sure we have all of our dicharge papers, medications, formula prescription (because you have to buy Portagen from a pharmacy) and I am gathering all my things from a hospial room I have lived in for weeks.

Just think, tonight our duaghter will be home for the very first time. We will be a family of four all under one roof - together. Praise the Lord, truly - I am thankful!!!!

So, once we get home we'll have a flurry of doctors appointments - the cardiologist, the nephrologist and the pediatrician - whew!!!!