my mom has some pictures on her blog too.

http://thesegraves.blogspot.com/

you can go here and follow. she might even put up info faster than I do. I'm not good at rememberingto tell everyone whats going on hahaha.

more pics

Thought I had more pics on my laptop but I was wrong so will have to upload some more later :)

Pictures

Pray For Weight Gain (not very often you ask that hahahaha)

Saw Dr. Kirklin this week (the cardiothoracic surgeon). He said Chloe looks great and that we don't even need to make another appointment with him unless we feel like seeing him :) so YAY with that. We hopefully won't have to see him again until they fix the VSD(hole in her heart). and we pray that God will miraculously heal that :)

We see Dr. McMahon this coming up week. So we will see what he has to say. The will most likely do another echocardiogram to see the flow of blood in her aorta, VSD, and the PA band(band around the artery to her lungs to prevent too much blood flow going to the lungs). Will also probably do an EKG, maybe some blood work...we will see.

we go to get weighed again today. she has gotten above her birthweight now but still not gaining weight like she needs to be. so we have to weigh often right now until she is gaining like they want her to. She is up to 6 lbs 4.5 oz was born at 6 lbs 3 oz.

They also have changed her meds up some too. They stopped the sodium chloride, saying really no reason to have it and not sure why they started it to begin with lol. They also changed the lasix(pulls fluid off her) to once a day instead of twice. the Digoxin and enalipril (preventing heart failure) are still the same.

I also want to thank everyone again for all of your prayers, cards, our SS class for the wonderful meals (Which We have both gained weight becuase of them so we will get mad later haha).
We would also like to thank First Baptist of Alabaster (our new home chruch) for their support, visits, etc. Gilgal Baptist Church (our home church in Tuscaloosa) for the cards and visit. and Mount Zion Baptisit Church (my home church in Huntsville) for the cards, and visits as well. and to all of the rest of our famiy, friends, and even people we don't know, we cannot begin to express the peace that God has given us because of knowing that pretty much THOUSANDS of people have been prayinf for us in more than 15 states and 5 or 6 different countries. God has heard our prayers. He has answered them resoundingly and is still continuing to answer them even right now as I write this note looking down at Chloe as she sleeps. (It's 4 AM right now lol. I just fed her)

Thank you, Thank you, Thank you, and may GOd bless each of you as he has blessed us over the past 3 and a half weeks. ALthough stressful, this time has been some of the best "Jesus Time" we have ever had and has strengthened our faith in Him as well as strenthening our marriage and faith/trust in each other.

We Love Yall
John 16:33
The Anchor Holds

lol I just looked at the dates of all my notes I had written

lol I just noticed I left yall hanging on several key days after big events. soooo.... ooooopppppssss on that. but I know yall still love me and understand cause I was a little preoccupied during that time lol.

Also, if and when I dont put up any new posts just assume that everythign is OK. No News Is Good News. :) and as soon as i rememember to put stuff up i will. or i will send out texts to several people and they can forward it on to everyone else. so if you do get a text message from me FORWARD IT hahahaha. no i havent sent any out yet so dont worry you're not out of the loop and no you're not in trouble :)

Oh, Also for any of yall that have friends/family that have the internet but not facebook I have a blog that we are gonna try and keep up as well with the same notes as we do on here so anyone can read/forward anything I put on there as well I believe http://daddysbraveheart.blogspot.com/

We love yall so very much.
Christopher and Jami

The ANchor Holds
JOhn 16:33

"From here on out we will treat her like a regular newborn" our pediatrician. YAY

Chloe had her first appointment outside the hospital lol. Our pediatrician said all is well. Just need to gain a little bit more weight. need to gain about an ounce a day. and we havent gotten there yet. So we have to wake her up every 3-4 hours at night to feed her. she had been waking up about every 5 or 6 hours to eat so not too bad just need to eat a little more often so we can fatten her up lol. We have our appt with Dr Kirklin(cardiac surgeon) next week, and the cardiologist, Dr. Mcmahon the week after that.
We also will have a developmental check-up at 6 months of age because these surgeries sometimes push them back some developmentaly, not sure why but i'm assuming because they have to make them so cold do do the cardiac surgeries. However, our pediatrician says she is looking good in that aspect as well. :) YAY again lol.

We will update yall as new things come up and after appts etc. And We want to thank everyone again for all the prayers and cards we have recieved. God has really blessed us with so many Godly friends to love on us and support us through these difficult times. Even though I feel like God has been right by our side the whole way so even though it was difficult and trying...It really wasn't. God gave us and still gives us the peace and joy of knowing that He was in control the whole time, He still is now, He always will be.

We love yall!
The Anchor Holds
John 16:33

Praise God our little girl Chloe is now HOME :)

Yes praise God. and keep praying. We just go home and Jami has some pics already posted. We have a lot of appointments coming up with the pediatrician, cardiologist, and cardiac surgeon. will most likely have another surgery before the age of 1. So just pray that God will miraculously heal the hole in her heart. Also pray for her and us during these first few nights as new parents. AHHHHHHHH!!!!! and as nurses lol cause we know to dag gum much lol. but pray that she will continue to do well, to eat, and grow as needed. We are on 4 meds. Lasix (fluid meds), Digoxin (prevents heart failure), Enalapril (prevents heart failure), and Sodium(aka salt lol, this helps pull fluid into the blood vessels...helps the lasix) all of them twice a day.

I would like to thank everyone who has been praying for us. It has been so awesome to see how fast God can move. I have cried 2 good times the past 15 days. once the night before her surgery, the second was the night they reintubated her. Every other time i started crying wasn't from being sad about Chloe, It was always when I heard, saw, or felt the prayers people were praying. How awesome is God that people in 15 states and 6 different countries could all be praying at the same time and probably in different languages as well. It is just so cool knowing that God hears all of our prayers whether we are saying/singing them out loud, in our hearts, or through tears(sad and happy).

"How Great Is Our God?"
Jami and I sang this song throughout our ordeal. God is great in our good times, our bad times, and even during times when we reject Him and turn away. He still loves us and is ALWAYS in control. no matter what.

The worst night we had while we at the hospital was probably the night Chloe had to be reintubated. That pretty much ripped the hearts out of every single one of our chests. It was so hard and so awful. We(Jami and I, JAmi's mom, and my parents) started praying just holding eac other pretty much in a ball on the couch. after praying my mom started talking about Ray Boltz's song "The Anchor Holds." It has been my favorite song since after I hurt my ribs 7 years ago. It has been one of the things that I have held onto in every bad time I have had since then and Jami as well. So I found it on the internet and played it and we sang it. and the words are so so true. in every situation especially the bad ones...The Anchor Holds.

"The Anchor Holds"
i have journeyed
through the long dark night
out on the open sea
by faith alone
sight unknown
and yet his eyes were watching me

CHORUS
the anchor holds
though the ship is battered
the anchor holds
though the sails are torn
i have fallen on my knees
as i faced the raging seas
the anchor holds
in spite of the storm

i've had visions
i've had dreams
i've even held them in my hand
but i never knew
they would slip right through
like they were only grains of sand

CHORUS

i have been young
but i am older now
and there has been beauty these eyes have seen
but it was in the night
through the storms of my life
ohh thats where God proved his love to me

CHORUS x2
---------By Ray Boltz

The Anchor Holds

~~~I don't promise life will be easy, but in the hard times, turn to Me - you will find Me there ready to hold you while your world shakes. I will protect you. I will carry you if you need carrying.
Dont worry about the possible hard times that may or may not come. When they do come, you and I will face them together(Isaiah 43:2). I will give you everything you need. Though you may stumble you will not fall because I will uphold you with My hand(Psalm37:23-24)~~~ Got this from the devotional journal mom gave me called (-Journey-)

Chloe was extubated this morning before the 0830 visiting time. She is doing very well right now. her respiratory rate is staying between 50-70. which is a lot better than the other day. still want it to be around 30-40s though. but its an improvement. and she's not struggling lik eshe was before. her oxygen levels are great. her blood pressure and heart rate are good as well. they are going to do another echo tonight. so we will see how that looks. she had a new heart medicine started today. Digoxin which helps the heart rate, the strength of the heart, and the cardiac output. they said they would also start a medicine called enalipril. enalipril will help prevent chloe from going into heart failure and help the symptoms as well.

So everything is looking great today. and we will just manage symptoms for as long as possible before they have to go in and fix something else....either tightening the PA band or fixing to hole in her heart.

We love yall and thank yall so much for the prayers.
The Anchor Holds.
John 10:33

Please keep those prayers coming

Chloe started having a lot more difficulty breathing tonight before the 800pm visit. She was breating about 100 times a minute and oxygen levels dropped to the 60-low 70 range and lower at times. Sadly she did turn a little blue. well any blue is too much blue for your little baby but anyways. So they reintubated her and put her back on the ventilator. she is on room air. the ventilator ws to just help manage her respiratory rate and cardiac output since there is a lot going on with her heart and lungs right now. so it's hard for her to keep things balanced.
--------saved for edit lol---------
but anyways she is doing alot better now. pinked all up. sats are better. breathing 30 times a minute(well the vent is breathing completely for her right now). her blood gasses are alot better now as well. We are gonna wait a day or so and monitor her, do another echo tomorrow, and keep check on her oxygen levels, and pH level.

So just keep all of us in your prayers. Praise God for his love and understanding becuase it was HE that gave his son so that all of us can have life and have it more abundantly...even in the bad times we can still be joyful.

The Anchor Holds
John 16:33

Gonna have to quit writing these notes lol

First off let me let yall know that everything is fine. CHloe is still doing very good. They did another echo and said that structurally everythign still looks good (besides the VSD being there and having surgery haha) but even those look fine lol. He said her cardiac output and left ventrical are just a little wimpy. which will all get better with time. It kinda broke me a little cause I have been able to be so strong this whole time but I just feel let down cause we thought we were fixing to go to a room and now we have to stay another night in the ICU. just so they can monitor more closely but still just like another knife in the heart to me. I know God is here and with us. I know God is incontrol and that He will prevail. I know that God will get glory, honor, and praise out of our situation. It is just so so so hard. Please pray for strength for Jami and me. Please pray that we will seek God's will and lean on him. So that we don't make ourselves feel like we are alone. Cause we know we are not alone. We know that God is right here with us guiding our every move, word, and even our every breath. Help us to remember that the anchor of God has always held for us in the past and that we will always overcome with God leading us. and that the Anchor of God will always hold forever and ever amen.

As my mom always told me "it's just character building"...and like I said to her everytime "I have enough character". lol
I love you all. thank you agian for yalls continued prayers

Chloe is extubated YAY

Chloe is doing very well. She is off the ventilator and breathing well on her own. She is also off of the blood pressure medicine dopamine. YAY again hehehe. I will add more to this after lunch. I accidently deleted my first note i wrote this morning. haha. so will finish later.

ok so now its a day later lol. I was kinda distracted lol. but anyways...

Chloe has been breathing kinda hard and they increased her oxygen from room air to 30% which they say is very normal after this surgery. We are waiting for the cardiac surgeon to come by to release her from the ICU to the floor. but they have already taken out the art line, and chest tubes. So we are very excited and hopeful.

Praise God for all he is doing.

Chloe's surgery went well

Just talked with Dr. Kirklin, the cardiac surgeon who did Chloe's surgery, Chloe did well and we will be able to go see her any minute now. They had to do a little bit of reconstruction with the subclavian artery(the one that feeds the left arm) and it went well. put the band on her pulmonary artery(artery from heart to the lungs) to decrease the flow to her lungs so she doesn't get fluid on her lungs.

The blood flow had to be interupted to the lower half of the body for about 15-20 minutes so they decreased her temp to the low 90's to decrease damage done to the spinal cord and other organs. This made her heart a little more irritable and the putting the band on her PA sent her into A-Fib and SVT(different heart rhythms) and had to cardiovert her(shock her heart) 3 times. but was just from him aggitating the heart.

She is on dopamine at a low dose(expected), intubated, has an Art line(continuous blood pressure monitor), central line(big IV), 2 chest tubes, and is doing very well. pulses are all great.

God is good...all the time....all the time...God is good.
The Anchor Holds

Took Chloe to surgery at 0830

well should...you know how hospitals are. dont really wanna talk long but surgery should take about 2 hours. then she will be on the vent until she wakes up. because they dont reverse anestesia on babies(they said they arent mean to babies liek they are to adults lol). but anyways she should be on the vent for at least a day or until she fully wakes up. then they will extubate and she will stay in the CICU until she is eating without any respiratory or cardiovascular issues. then be on the floor for another few days. so we should hopefully be home around 4-7 days from today.
keep us in your prayers. and know like we do that God is with us. and his name is being glorified through our situation.

thank yall and bless yall for all your prayers. I will write another note after the surgery is over and we see chloe

How Big is our God?

First of all I would like to say "How big is our God?" well I know he is bigger than one new little family because people are praying in the states of alabama, arkanasas, mississippi, texas, virginia, west virginia, oklahoma, florida, arizona, washington st., tennessee, south carolina, and the countries of Canada, England, Guatemala(Huehuetenango and Guat. City), Portugal, and Hungary. All for one little girl. and the families that we have come into contact with while we have been here. How awesome is that?

Next I wanted to give an update on Chloe. She is still doing well. but the doctors have decided that waiting to do any kind of intevention has no benefit for her. and the risks are too great to wait. so tomorrow, Friday, January 29, at 0830 Chloe will have surgery to fix her aorta and to put a band on her pulmonary artery. she will likely have to have surgery later on on the hole in her heart to fix it. but there is no definite timeline on when that will be. most likely before she turns 1 year old though.

I will write a little more later. it is feeding time for chloe.

Keep her and us in your prayers tonight and esp. tomorrow at 0830-1200ish.

Thanks again and we love yall

I need my Prayer Warriors to get on their knees

The cardiologist just came and talked with us about an hour or so ago. He told us that after looking at her echo this morning, that the pulses in her legs and blood pressures in her legs were getting worse. He is going to have a confrence with all the cardiologists and cardiac surgeons in his group on friday morning. We will probably be having surgery to fix her aorta on Friday if possible and if not then monday. This pretty much just went ahead and ripped the hearts out of our chests. They will also most likely have to have surgery to fix her VSD (hole in her heart).
One of the cool things was that that hole in her heart was probably what was keeping her from not getting so sick so fast. cause the pressure was just pushing the blood back into the pulmonary circulation. Within the next week or 2 she would probably start going in to pulmonary edema from the extra circualtion. so they are going to put in a band in her pulmonary artery to decrease flow to the lungs.
then after a while(im not sure how much time) they will have to fix the VSD if it hasnt resolved itself or at least gotten better.
So continue to pray for Chloe. FOr God to heal her. Pray that he will give her peace and hold her tight in his arms. Pray for Jami and I so that GOd would give us strength, courage, peace, and the will to keep going. Pray for us to also have joy. Knowing that God is here with us, that he never will leave or forsake us, and that he won't give us more than we can handle.

Also, please keep baby emma in your prayers and also pry for the family of James Sellers, a coworker of mine who died this week. He was a great friend, and a true leader. He will be greatly missed and I pray that he is with God right now rejoicing in the presence of the Lord.

We love yall very very much, And thank yall so much for your prayers.
Christopher and Jami

Doing Better

Ok so we have some good news and some not bad but not great news. Had another echo today and the pediatric cardiologists are saying that as of right now Chloe will not need to have surgery for the narrowing of her aorta. So thank God for working that out. They are also saying that the narrowed part is not as bad as they had originally thought. again thank God :). However, they are saying that something is not adding up. Because her oxygen saturation in her lower body is good. and the blood pressures on her legs are good and all of her labs are good. But her pulses in her lower body are not good (but apparently they are not terribly bad becuase her blood pressure and sats are good enough down there so very wierd). So...they were gonna let her leave tuesday afternoon/night but have now decided to keep her till at least thursday and possibly later into the weekend. They are going to do another echo i think wed/thurs. cant remember right now. and they are going to have another cardiologist look at it. so this will be the 3rd cardiologist to have a look at her scans lol. (you can really tell that chloe is my daughter cause when we decide we are gonna have something wrong with us we do it 110% lol). Please continue to pray for her because as you can see, God is working bigtime and is holding her in his arms at all times.
but anyways Jami and I are doing ok. This has been a huge rollercoaster. I still cant believe I am a daddy now(I think most people are sayign that haha). and Jami is still being an amazing mother and an amazing wife. She is a natrual :).
So now for another amazing part of the family of God... so far I know of 7 states praying for chloe(alabama, arkanasas, mississippi, texas, virginia, oklahoma, and florida, and 2 other countries, Canada and England). I am sure there are more cause I have not read all of the messages I have gotten.
For those of yall that have responded on my wall, facebooked me, called me, texted me, or did somethign else that i cant think of a name for lol, and for everyone that is praying for us, Jami and I deeply and gratefully thank yall with all of our hearts. And Chloe thanks yall too.
I will be sharing updates as soon as I get a chance. We just now figured out how to get on the internet at the hotel we are staying at lol.
Also I would like to take a quick second and ask yall to pray for another little girl Emma and her family. She is the baby next to Chloe. I have talked to their family several times and she has the exact opposite problem as Chloe. where her Aorta is too large which is just as bad and they are most likely going to have to have surgery on her in the next few days. This might be one of the reasons God has led us into this situation because I have already had a chance to get to know them just a little bit and was able to pray with them the first time I spoke with them. So pray that God will use us to a shining light and be able to share God's love with them. (dont know if saved or not but will hopefully to share with them anyways).

Updates on Chloe

Ok. I know all of yall are praying and wandering whats going on so i'll try to explain it short and sweet. Chloe has a medium size hole in her heart or a VSD(ventricular septal defect) which is ok not causing any issues right now. However, she also has a coarctation of her transverse and descending aorta. which means that there is a narrowing in the main blood vessel that leaves the heart to take blood to the whole body. there is a possibility of surgery. but she is doing ok. they are just monitoring her right now. We know that God is here with us and Chloe and that He is in control. It was a miracle that our pediatrician heard a murmur and decided on some more tests that caught this otherwise there possibly could have been a devestating effect on Chloe. So we are in good hands. Just please keep Chloe in your prayers that she stays ok. That God will heal her through his hands or by using the hands of the physicians. That Chloe will not have pain and will be comfortable and peaceful. Please also pray for Jami and I. That God will give us peace and know that He is in control and with us. That he will never leave us or forsake us. and also pray for Jami's parents Her mom is here with us and it has been very hard on her. Jami's Dad is unable to be here cause of his Job and it has been very hard on him as well. Pray for my parents cause i know they are hurting with us as well. thank you all for your prayers and we will try to keep yall updated on here. If anyone wants more information, please call my family instead of Jami and I as we dont get phone service here in the hospital. you can also e-mail me on here with quetions. and i will try to answer with a group e-mail or on this status page. I am going to try and find a blog type thing so it is easier for us so I will keep yall updated. "In this world you will have trouble but take heart for I have overcome the world" John 16:33............The Anchor Holds...........We love yall.