Friday, November 30, 2012

Evening Update...

I realize the last few posts have been lengthy, I apologize for how wordy they've been but I've had trouble condensing it all, there's just been a lot to update on each time.

This afternoon she had several more of her "episodes" where she vageled and her Pulse Ox dropped into the 40's and 50's...but she responded well to being bagged to get her oxygen level back up.

They are doing several things this afternoon:
-They are pulling her Foley catheter out
-They are doing several cultures (of her urine, blood, and respitory secretions) checking for any infections
-They are going down on her ventilator to 8 (so they are weaning her down on that)
-They are going to start her on "hyperale" which is electrolytes, lipids, glucose, potassium, etc...it's like eating a Big Mac and drinking a Gatorade; since she's not eaten since 3am yesterday.

They rotated her this afternoon and it sent her into a vagel episode, but she recovered nicely. They have had to put little "weights" (fabric bags filled with little beads)on her arms to keep her from flailing...her little toes are starting to move which is fun to see...I put my finger in her hand and she held onto it for a bit (the color is back--which is encouraging). Her temp is up to 36.1 so she feels warm again! Her blood pressure has really been pretty stable this afternoon, which is a huge praise! She's able to regulate her own blood pressure, so they took her off both of her BP meds.

Overall, Dr. Gupta says he's pleased with how she's doing and that everything that's going on with the RSV was to be expected and has not caught them off guard at all. He is such a kind Doctor and has been so great to answer any and all of our questions.

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Details from the 1st full day...

My oh my...the last 24 hours have been exhausting...we definitely have had huge praises, but we aren't in the clear yet. Yesterday as most of you know Ava Jane had surgery...here's how it all went:

Thursday, November 29th, 6:00am
They came and began checking vitals and did one last scrub down "bath" before the Anaesthesiologist came to our room and walked us down to the OR. It was excruciating to carry our little girl to the OR. We got to those big double doors and the Anaesthesiologist (who was pushing her IV pole) and the nurse (who was carrying her Oxygen tank) stopped and we handed her over. I cried and felt my heart being yanked out of my chest...it was so hard to walk back to the family waiting room we'd been assigned to. Just a side note, these two men (Dr. White and Michael) her Anaesthesiologist and Nurse could have both played any defensive position on a football team, they are HUGE, they each took up an entire doorway...these 2 big ole' saps carried our precious baby Ava Jane back to surgery and took excellent care of her!

Every hour on the hour Michael came out and gave us an update, they went like this:

9:00am
1st Update: She's intibated, all the lines are in (Central and Arterial Line which will be used to check her blood pressure constantly), they are draping her and getting her already to make the incision and will be looking at the aorta shortly...

Update #2: The surgeon is almost finished with the repair, her stats stayed level for the most part, they are about to unclamp her aorta and see what the pressures are in her extremities, pray that the gradient between the two extremities is closer rather then further apart

Update #3: Surgeon just came and said "I am pleased with surgery"...she is in the CVICU now and they are hooking up all her lines, she has 1 chest tube and they were able to intibate thru the nose (which we prayed for); her gradient (difference) between the upper and lower extremity blood pressures was 8--he was hoping for 10---and its less then 10 so that's huge! Praise the Lord! We will get to go back and see her in 25 minutes, we are humbled and blessed! We praise the Lord for a safe surgery...there are still a few complications that could present themselves, but we won't know for a day or so, so please keep praying! Our God is faithful and oh so good!

Update #4: Please continue praying for our sweet Ava Jane, she's on a double dose of morphine because of the pain, she was on 2 blood pressure meds but just came off 1, so that's good. This RSV virus, is complicating things...they just had ...to “bag her” (take her off the vent) and suction her tube…its so hard to watch her try to cough with a breathing tube in…she’s got a TON of secretions….She’s in a lot of pain which we can tell based on how high her blood pressure is….please pray for healing.

Update #5: She is getting a blood transfusion because her hemoglobin is low...the respitory therapist is sucking her out which is making her blood pressure go up--we don't want it to do that because it puts pressure on the sutures in her aorta...she is having trouble warming up from surgery (so pray for her body temp to increase), they are having to up the blood pressure meds again because its trending up.

That was all the updates from yesterday. I won't lie to you, or sugar coat this...it was touch and go all day yesterday after surgery and throughout the night as well. She keeps having what I call "episodes" where she tries to cough on the ventilator and that sends her into real high blood pressure fits as well as oxyenation problems then she takes a real dive and her bp goes extremely low. Yesterday everything kept going off, it was stressful and difficult to watch...by the evening my nerves were pretty much shot so after several people suggested that I go home (Dr. Garcia included) Adam and I decided to go home and actually get some uninterrupted sleep, which for me, was the first time in a week that I got more then about 2 hours in a night. It is HARD to leave your baby girl in a hospital, lying there with tubes galore, 15 pumps of meds, on a ventilator, etc with the hope that we would not get a call anytime in the night with bad news. And we didn't which was a blessing!

Like I said, her night was filled with several more "episodes" but she is doing ok this morning. These episodes I'm talking about are called "vageling" which is where a cough stimulates the Vagus nerve, which lowers her heart rate...causing less blood to flow to vital organs. Her Oxygen was at 100% (you and I breath air at 21%, so as you can see that's a huge amount of Oxygen on her lungs) Dr. Garcia would like to keep it at less then 60%, when we left last night they'd lowered it to 90% but this morning she's at 40% which is good. Her Hematocrit (or "crit" as they call it) is better, it was at 26 yesterday which is low, which is why they had to give her a blood transfusion yesterday afternoon. She is still not as warm as we'd like her to be, we're praying for her to get to 35 or 36 degrees Celsius. Her little hands look white, there's not any pink in her nail beds, so pray that her body temp rises. Last night her heart rate kept dipping down low (into the 40's) but for now she's holding fairly steady, so that's a praise! They've told us that "her lungs are still sick" so what normally would have been 2 days on the vent (if she didn't have RSV) will probably be at least 4-5 days on the ventilator. Right now they are about to do an Echocardiogram to look at how things seem today, I will let you know about that next time I update.

So for now, please keep praying for her lungs to heal from the RSV, it will be the factor that keeps her on the vent. My milk production has increased slightly, so thanks to those who have prayed specifically for that, but please keep praying! They aren't feeding her right now and probably won't for the next few days, so I've been able to start a little stock pile for her which has encouraged me, for when they start feeding her again. They'll start with a 1/2 tsp of breast milk too when they start, so I'll have a little more time to build up my supply. One of the complications that we're still waiting to see, is that milk can begin leaking into her chest cavity, if that's the case, she'll have to be put on a special formula that has low fat in it. But we won't know that until they start a feed which might be tomorrow or Sunday.

Thanks so much for all the prayers, thoughtful emails, texts, FB messages, visits to the hospital etc...We truly feel God's perfect peace resting upon us! We love you all and are grateful for the support!
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Wednesday, November 28, 2012

Details and Emotions

Though Courtney does an outstanding job of blogging and I could never take her place in that role, I thought that I would take a shot at giving a Head update so as to give her a break from her daily blogging duties...so here goes.

Ever feel like you're standing on the edge of a tall cliff, completely surrounded and the only way to move forward is to jump? That's us right now with our baby girl. The danger surrounding us is the coarctation of Ava Jane's aorta in which we have all become educated in the last few days in addition to the RSV that's moving in on us from the side. And, the surgery repair that she is scheduled for first thing tomorrow morning (7am) is the casym below us.

The details of today were doctors - lots of doctors - that spoke to us about Ava Jane's surgery and what we can expect. The procedure itself, potential complications, anesthesia, recovery, and post operative plans were the topics of discussion. Her surgeon was pretty point blank in his description of the surgery itself as well as the associated potential complications. He is Japanese and there is a little bit of a language barrier so the discussion went something like, "She have this problem, she have more surgery".."She have that problem, she have more surgery". We completely respect the guy and absolutely trust that God has placed him in Ava Jane's path right now, but some syrup is always nice.

We also got the low down from the Anesthesiologist, who, though he was concerned about Ava Jane's RSV post-operatively, said he would take care of her and handle it. He said he would discuss his concerns with the rest of the team. Soon thereafter and before the afternoon was over, Ava Jane's Cardiologist came back into our room, along with the surgeon, the anesthesiologist, her APN, and 2 nurses. We wanted to feel that everyone was on the same page and that was what we got. What they had to say put us at ease.

Right now, the evening before, if someone asks if we are fearful, we can honestly say yes, but we're courageously moving forward. After all, courage is not the absence of fear, but moving forward in spite of it. The courage we have only comes from our Maker, who is also the Maker of our 2-month old daughter, who knows her and loves her more than we could ever imagine. Hebrews 4 makes clear that we do not have a Savior who "is unable to sympathize with our weaknesses", so we "should approach the throne of grace with confidence, so that we may receive mercy and find the grace to help us in our time of need". Translation - Jesus experienced every human emotion during his time on earth and he is the same one that intercedes for us when we experience fear, heartache, etc. while we are on this earth and turn to Him. Therefore, we do not serve an emotionally distant God.

I saw a picture in my parent's house recently of a large hand holding a tiny baby and that is a perfect image of our God and Ava Jane. He loves her more than we do. He created her, and Courtney and I want to rest in that.

Thanks for all of your prayers and support!

-Adam (and Courtney)
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Tuesday, November 27, 2012

Gearing up for the holiday...

Last night went really well, she slept good and I did too which was nice since I've only gotten about 2 or so hours of sleep each night since Wednesday. They did have to re-do her IV, so they moved it to her hand which actually went tremendously smooth...they had such a hard time with getting one in several days back but thankfully Chris got it in the first try! Praise the Lord!

As for me, I ask you to pray specifically for my milk production, I currently am pumping exactly what she needs, but I'm only able to stay 1 feed ahead of where she is right now, I'd like to begin having at least a couple of extra bottles for her, so I've begun taking herbal supplements that the lactation consultants suggested (Blessed Thistle and Fenugreek). And if you've ever taken Fenugreek, then you know that a side effect is smelling a bit like maple syrup...guess thats better then some things that I could smell like, but still! Guess that's a small price to pay! As long as everything continues as is, then they will proceed with the surgery on Thursday.

Since everyone else has probably begun their holiday decorating and putting their kids in Christmas outfits, we decided to start celebrating too. We pulled out her cute red Mudpie socks and her Christmas bow that Lisa sent to her, thanks Lis! Doesn't she look festive and cute, even with a feeding tube and oxygen canula coming out of her nose!
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And I have to send a HUGE shout out to my dear friend "Mosh" (Michele Ball James) who so kindly put up my Christmas decorations so that we could have a beautiful Christmas tree and mantle when we bring Ava Jane home! She is quite talented and when I get a chance to see it myself, I will post pictures of her handiwork! It's things like that, the meals people have brought, the offers to rake our yard, to get our mail, put out our trash...its the visits, calls and texts that have made Adam and I feel tremendously blessed. God has given us such great friends and family, we are humbled and blessed!

Monday, November 26, 2012

Plan For Surgery

Well, we finally got word just about an hour ago. Adam and I've been praying so fervently today and honestly felt like we were on pins and needles as we waited for the report from the doctors.

After an early morning of chest x-rays, brain and kidney ultrasounds, talking to two cardiologists who then went back and conferenced with 21 other cardiologists we just waited...waited, waited, waited. All day long it seemed. Finally, about 2:00pm Dr. Bornemeier and the APN came in to give us the consensus. I was very nervous when they slid the glass doors open and stepped into our room.

What they said is that as long as nothing changes with her breathing, lungs, heart rate, blood pressure, etc...if it all stays as it is today, they plan to do the surgery on Thursday. They will wait until Wed. to set an exact time, but when they do I'll let you all know. The surgery will take the better part of 5 or so hours. We will get more precise details and sign all the consent forms on Wed. when we meet with Dr. Michiaki Imamura.

He plans to do a Thoracotomy which is an incision into the pleural space of the chest. Thoracotomy is a major surgical maneuver—it is the first step in many thoracic surgeries and as such requires general anesthesia with endotracheal tube insertion and mechanical ventilation. Thoracotomies are thought to be one of the most difficult surgical incisions to deal with post-operatively, because they are extremely painful. Though we hate the fact that she needs surgery, we are glad that she doesn't have to have a midline incision, where they open up her chest and then have to be on a bi-pass machine, we prayed specifically for this!

As far as the procedure, they are going to do a subclavian flap angioplasty. Basically, from what I understand, they are going to take an artery from her arm and use it to make the graft at the site where the narrowing has occurred. They are hoping that by using real, living tissue that it will grow with her as opposed to using a synthetic material, in hopes that she won't have to have additional surgeries in the future. And when synthetic materials are used the patients often can have a re-occurence of coarctation (or narrowing of the aorta), which we obviously don't want to happen again.

After meeting with the cardiologists, Adam and I were so grateful and pleased with what they told us. Honestly, its the most "ideal" scenario for this very unfortunate scenario that we find ourselves in. We truly feel like the Lord has just completely gone before us. First off, He allowed this RSV virus to be caught now which enabled the problem to be found before something horrible went wrong (like her stopping breathing, turning blue, having permenant heart damage, etc). When we needed an IV, after 4 other people tried to get it, there was an IV specialist, Geraldine, who just happened to be on the floor. She's an Irish woman in her mid 60's who was FABULOUS! After 2 hours of trying to find a vein that wasn't blown she used a transilluminator light to find a place in Ava Jane's foot to get her IV in. And when we needed a feeding tube, Val, a wonderful nurse, originally from Barbados but who lived in England, was on duty and she saw the need and proactively took over and put Adam and I at complete ease.

Continually the Lord has gone before us, He's been our Jehovah Jirah over and over and we are humbled and so thankful! Please continue praying for Ava Jane to get strength, and for this RSV to completely go away. As we know more specifics about the surgery time I'll post it and would ask for your continued prayers.

Thanks to Jennifer McHam for the beautiful pictures!
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Me and my sweet Ava Jane...oh how I love her!
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Sunday, November 25, 2012

Playing with the boys

It was so fun to see the boys! Since I dropped them off with Donna on Wed, I've only seen them one time...oh how I miss them! Since all of them have had yucky noses and coughs we've not brought them up to see Ava Jane. And starting on the 28th the CVICU will be "closed" to kids due to flu season. So instead of coming up into the hospital, my parents brought them to play on the playground that's here. When I stepped out onto the patio and said "hey boys" my sweet Emerson came running. He is still so little and his whole routine has been turned upside down (as it has for all of us!) I love my sweet family and can't wait to get back to "normal"!

It was nice to get outside the four walls of her CVICU room and to get some fresh air. I enjoyed chasing Peyton while holding Lawson and getting to slide with Emerson was such fun.
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Lawson didn't feel like smiling for the camera...and that's ok!
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I miss my boys but am grateful that at such a time as this, when Ava Jane is so sick and needs constant care, that God has seen fit to, in His providence, have us back here in Little Rock, where we have two sets of very giving and available grandparents who've just been amazing! They've just taken the boys for us so that Adam and I can focus on Ava Jane and both be here to hear what the Doctors have to say each morning. Thank you Mom, Dad, Bill and Donna! Y'all are wonderful and such a HUGE blessing to me!

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The boys miss their routine, they miss being at home, seeing Ava Jane, and just doing things as a family...though we're on a brief hiatus from all of our normal life...we hope to resume it all in the coming weeks.

We will hopefully know more about how this week might look once we talk to the Doctors later this morning. I will be sure to update with more then. Please continue praying for the RSV to pass quickly, she has a ton of mucus secretions and has run a low grade fever off and on, her coughs do seem to be getting a little more productive which is great! She's done terrific on the feeding tube, her breathing has slowed a lot and has been in the 50's and 60's as opposed to the 80's and 90's, which is a good thing. She LOVES sleeping on her belly so she's slept pretty well tonight, which means I have slept better too. I am waking every three hours to pump, so while I'm hooked up, I decided to write this post. Please continue praying, Adam and I feel your prayers for peace, its really remarkable! We see her taking teeny tiny steps toward improvement, and are so humbled and grateful at the out pouring we've received from everyone! We love you all!

Worship Session in the CVICU

Last night I was overwhelmed a bit. We had a nice long conversation with Ava Jane's nurse. Amanda was wonderful, she was honest and straight forward, she explained, in detail, a lot of what we can expect post-op she answered any and all of our questions and honestly, it was a bit overwhelming.

To think of what's to come is overwhelming, as I have been sitting nursing Ava Jane, my mind has been flooded with songs and I just enjoyed singing over her to our God. The one that I can't get out of my head is Chris Tomlin's "Our God"...its so pertinent to me right now:

Water you turned into wine
You opened the eyes of the blind
There's no one like You
None like You!

Into the the darkness you shine
Out of the ashes we rise
There's no one like you
None like you!

Our God is greater
Our God is stronger
God You are higher then any other
Our God is Healer
Awesome in power
Our God,Our God!

And if our God is for us
Then who can ever stop us
And if our God is with us
Then what can stand against?

What a beautiful song, what a perfect reminder for me! No matter the situation God is still on His throne, He is still in control, He loves me and He loves Ava Jane more then I do! Thank you LORD!

The other song that keeps playing through my mind is:

Jesus, lover of my soul
All consuming fire is in your gaze
Jesus, I want you to know
I will follow you all of my days.

No one else in history is like You
History itself belongs to You
Alpha and Omega
You have loved me and I will spend eternity with You!

It's all about YOU Jesus, and all this is for You
For Your glory and Your fame.
It's not about me,
As if You should do things my way
You alone are God and I surrender to your ways!

God is in control and we are not...I'm so very grateful for His perfect peace in the midst of this storm...and for the fact that He's walking this road with us! What comfort, there is in that!
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The update for this morning is that she is breathing so fast and so hard that they put a feeding tube in so that she doesn't have to work so hard tob breath and eat. So, for now, please pray that I am able to pump as much as they want her to be having, and to be able to keep up with that demand so they don't have to supplement. She had a low grade fever as well when they checked her vitals this morning. We were hoping she was on the down hill side of the RSV but we aren't sure of that. The Doctor scheduled a chest x-ray so they can get a better idea of how her lungs look; we will see about that later today. So, we are still in the waiting game, I will keep updating with more info as we know it. Thanks for all the emails, texts, Facebook messages and visits; we really appreciate everyones support, encouragement and prayers!

Saturday, November 24, 2012

Sticks and Pokes and Prods...

Oh our poor baby girl had a bit of a rough day. Apparently these PGE meds that they have her on are hard on her veins, which made keeping an IV in, very difficult. Originally the IV was in her left hand, that vein along with another in that same hand blew, then they tried her right hand and right foot to no avail, finally after 4 nurses, two of which specialize in IV's, they got it to stick in her left foot...We are hoping that one will continue working, so they don't have to do a central line yet.

We've begun seeing the Respitory Therapist every 4 hours and they are doing an updraft treatment to help with her labored breathing. What has honestly shown to be the most helpful thing is this suction device (it looks like what they use at the dentist to suck out saliva). We can use it in her nose and mouth (its like a bulb syringe on steroids!) We've gotten a TON of mucous out with that and it helps so much with her feeds and her coughing when we do this!

This morning we spoke to the doctors and they will continue to round on her each day but will wait until Monday morning to re-evaluate her to possibly schedule a surgery date. We are praying for remarkable improvement so that we can proceed with the hard stuff, the heart surgery. I've been talking to many people and learning so much about heart defects/problems/etc that I had begun feeling much better about this heart problem, the surgerical solution and was/am hopeful about the prognosis. Today I spoke to someone who was kind and encouraging, though, he did tell me some more information that we'd not heard before. He said that it really was such a blessing that she had gotten this RSV illness because honestly, we think its what pushed her over the edge and allowed the heart problem to be discovered sooner rather then later. Because the PDA (the duct that is being kept open by the PEG meds) helps to get oxygen to the body, if this condition had continued to go unnoticed, she would have turned blue or just stopped breathing all together. Thankfully we have been in a medical environment under close watch and care and I wasn't home with her and the three boys when I found out, that would have been shocking. I told him how encouraged we were to find out that of all heart surgeries this is one of the most straight forward procedures to do and that this condition (coarc) is one of the most "fixable" kinds. He responded with what we already know to be true and fully believe is right, "that God is ultimately in control, and that we are just stewards of these kids God has given us..." He said that if she had have gone much longer she would have been a candidate for a complete heart transplant...that was sobering, that brought back the reality, the gravity of the situation for sure. Praise the LORD this was caught when it was and that no more damage has been done to her heart or body!

It's crazy to think that three days ago we thought we were just dealing with a bad respitory infection (which, in fact we were) but it's so much more then that...so much more serious. Life is fragile, it is precious and I've thought about that fact each time I pick her up or change her diaper, wash her body or feed her. It's a priviledge. God's given Ava Jane specifically to Adam and I. As Mrs. P pointed out today during her visit, Ava Jane IS the little girl that we so fervently prayed to God for, she IS the baby that God gave to us and we are so grateful...what a priviledge to have been given this precious little bundle of joy to love on and enjoy!

She was able to get a sponge bath and have her hair washed this evening, that always feels good to get clean and have some good smelling lotion put on you. Right now she's resting comfortably. Isn't she a doll?
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Friday, November 23, 2012

Waiting...

We are in a waiting period...waiting for the RSV virus to pass, waiting to speak to the surgeon, waiting to see the outcome, waiting...

"To wait in the biblical sense means to gather, to watch, or to expect. It is never passive; it is active. Such waiting is never wasted, but productive." I must say that we are gathering (with friends and family), we are watching (sweet baby Ava Jane), and we are expecting (big things, full healing, complete wholeness). This waiting is forcing us to rely fully and completely on the Lord, it's requiring us to dig deeply into the faith that we hold fast to, and its so good to be there, in that place of sole reliance because things are completely out of our control, but completely in control in the hands of God.

Tonight, a pastor friend came and annointed Ava Jane and prayed the most precious prayer over her...what a blessing that was! He read from Psalm 27:14 "Wait on the Lord; be of good courage; and He shall strengthen your heart." How amazing is that? How perfectly worded specifically for us, is that verse? We have a little girl who we are most certainly waiting with and who needs her physical heart strengthened...we are waiting, and expecting God's great provision for her.

I got an email today with a precious prayer that said..."Truly praying with you all; also reminded of two things: one, for the LORD to reveal this at Thanksgiving, He has His goodness in store for this precious family; and two, I love how Ava means "life." Be encouraged that the Giver of Life is giving her new life. I bet Courtney and Adam truly had no idea how prophetic her name would be, but God chose it through them."

Mrs. Woodruff, we had no idea how prophetic her name would be...that makes me want to cry just thinking about it! He is the giver of life, the giver of all good things, we are blessed beyond measure and so grateful for a God who gives life over and over again. He is mighty to save and He is the great Physician. We look to Him today and in the days to come.

ava jane


Thursday, November 22, 2012

Update on our sweet patient

Boy am I getting an education...what a whirlwind the past 24 hours have been. Adam and I have been discussing how quickly things in life can change; change priorities, change plans, change outcomes...We are so thankful that though this situation has snuck up on us, it does not and has not surprised God. He is in control and for that we are so grateful and at peace.
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This afternoon we were told she definitely, in fact, does have RSV. Her retracting is still going on (where her body shows visible signs of indentation around her ribs/lung area) with each breath that she takes as she struggles to breath, she still has a terrible cough and wheezy sound, but its not due to lack of oxygen its the RSV virus running its course, her pulse ox has stayed at 100% since late last night which is great!

There is something called patent ductus arteriosus (PDA) which is a heart problem that affects some babies soon after birth. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary artery.

Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation. Within minutes or up to a few days after birth, the ductus arteriosus usually closes (which is normal), but it hasn't for Ava Jane.

For Ava Jane, the ductus arteriosus has remained open but it actually is a good thing in this case, because there's medication that they can give her called PGE, prostaglandin E. The medication isn't used to repair coarctation of the aorta, but it can be used to control blood pressure before surgery. And right now, Ava Jane's blood pressure to her lower extremeties is very low, they can't find a femoral pulse or one in her foot (which in normal babies they can). This drug helps keep the ductus arteriosus open, providing a bypass for blood flow around the constriction, until the coarctation (or narrowing) is repaired. She is on this medicine and must be closely watched so we are still in the CardioVascular ICU. When they did the second Echocardiogram it showed that this medicine is helping, they didn't think it would be effective because technically, usually the duct is closed by the time babies are her age, but thankfully, hers is still open! And the meds are seeming to help, so they're keeping her on it, which should help her prepare for surgery by not making her heart work as hard as it has been to pump to the body.

Her number of breaths per minute have been good, the pulse ox has been great and the heart beats have been within the normal range too, which we are very grateful for. They are still allowing me to nurse her as long as she doesn't get too out of breath, so hopefully up until surgery we can continue doing that.

She will have a breathing tube and a feeding tube for several days after surgery, so once she goes in for surgery we won't be able to hold her for several days which I will certainly miss! I plan to continue pumping so that we can feed her breast milk through the tube until she's able to begin feeding again normally. They've told us she will have at least one chest tube, probably two, that will help remove fluid/blood from her chest. As far as the specifics of surgery we still don't know whether it will be through the middle of the chest (open heart surgery) where she'll have to be on a bi-pass heart/lung machine or on the side of her chest in a thoracotomy (where they go in between the ribs on her side)...we are praying for the second option, so please pray that way with us. We hope to speak to the surgeon in the next day or two (depending on how quickly she can get over this RSV and the fever).

The nurses are constantly commenting on how big she is (all the babies up here are teeny tiny little shrimp) so our 11 lb. 3oz, 2 month old seems gynormous, which is another thing in her favor! Thank you LORD for your provision! God continues to be our "Jehovah Jirah" our Provider, we are so grateful for a God who cares, who knows Ava Jane's in's and out's perfectly, He created her--He knows the number of hairs on head, He made her, He knows her better then we do and He holds her strongly in His mighty hands! We feel quite confident in the care that she's getting here at ACH and have been impressed with everyone we've encountered, from the CVICU nurses we've had (Lauren, Sarah and Lindley) to all the Doctor's we've seen. Everyone has been tremendously caring, supportive and encouraging! Though what Ava Jane has is critical, and extremely necessary; meaning we will not leave here until she's had surgery; the Doctors here, along with several other prominent Cardiologists (Dr. Murphy and Dr. C.D. Williams) have all confirmed that what we're dealing with is fairly "simple" as far as heart surgeries can be and that it is a very "fixable" condition, so for that we are thrilled! As we know more I will post it on here. Thanks again for joining us in prayer!

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Ava Jane's Heart Surgery

Yesterday was quite the day, Ava Jane was still wheezy and rattley so I called the doctors office to have her seen again. We did a chest x-ray and that was clear, we did an RSV test and that was negative, we did an updraft and that didn't change anything in her breathing, so because she was "retracting" and still had wheezing sounds Dr. Byrum said to head to the ER at Children's Hospital.

We arrived here about 4pm and things really got going...when we checked in at Triage and were headed back to an ER room her pulse ox registered at 64 (anything in the 90's is good and 100% is perfect), needless to say we had tons of people in the room trying to get her hooked up to the oxygen canula, and get an IV flowing. We told the story of what's been going on with her over the last several days to at least 5-6 different people, and I was confused the whole time on why we never saw a respitory therapist that they said was coming...because I still thought all her problems were respitory related, that made sense to me since all 3 of the boys have spent their fare share of time in the ER doing albuterol updraft treatments.

Well, each doctor and nurse that listened to her said they heard the heart murmur, and that seemed to be the utmost priority to them...I didn't realize how bad the situation was. The guy came in and did an EKG (where they hooked her up to 12 leads), that was fast and easy...then the respitory therapist came at the same time as the Doctor who was going to do the Echocardiogram. Instead of having the respitory guy come in they had us go get another chest x-ray, which looks terrible by the way. They sat Ava Jane on this thing that looks like a bicycle seat that has this clear plastic that wraps all the way around her little body while her hands are stretched up to the ceiling...truly it looked like a torture device and she did not like it! After that we headed back to the ER room where they did the Echo. I thought, that it would be quick and easy too...but I was sorely mistaken!! I had NO clue!

So the Doctor started the Echo and she said it'd probably be about 45 minutes, I thought "ok, no biggie", it looks like an ultrasound machine, I thought it'd be quick and easy like the EKG, it WAS.NOT. I started watching the clock and it was 7:25pm, when it got to 8:30 I leaned over to Adam and said, "this is taking forever" (I was beginning to feel that something had to be wrong)....about that same time the Doctor said, "I am about half way thru...." ARE.YOU.KIDDING me? Anyway, to make a long story short, Dr. Abraham finally said, "well she does have a problem, and she is going to need surgery." Wow, I WAS.NOT.PREPARED for that! Turns out, our sweet baby girl has a congenital heart defect called Coarctation of the Aorta...I'm still learning exactly what that is...but basically its a narrowing of the aorta. The aorta is what supplies blood to the rest of the body, and since her's is narrowed so much it's caused the left ventrical to thicken because its having to work overtime. Here's a picture of what we're dealing with...
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There are so many details but right now, for one, we found out that she is RSV positive and she's still running fever. They'd planned to do the surgery this morning but because of these complications we will wait a few days to see if her little body can get better before we complicate things with heart surgery. We're still waiting to hear from the surgeons. On this Thanksgiving morning, we are so thankful for a precious little girl and for a God who is big enough to carry the fears we have. If you'd join us in praying for her we'd be ever so grateful! I will post again when we know more!
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Adam and I did get to have a Thanksgiving meal and had the chance to pray for our sweet Ava Jane. Wish we could've been with family to celebrate the holiday, but we're enjoying getting to cuddle with Ava Jane without any interruptions, that is except for the blood pressure checks, echocardiograms,

Tuesday, November 20, 2012

Crazy, Wildman Emerson!


Ok, so yesterday I made mention of wildman Emerson…oh my goodness, I’m hoping its just a phase! My goodness, this little guy, whom I affectionately used to call “Easy-going Emerson” has turned into a crazy, wildman! And I mean that with all sincerity! When I say he’s into EVERYTHING, I mean this little boy is IN.TO.EVERYTHING! He’s literally turned into a Tasmanian Devil over the past few weeks. The child WILL.NOT stay out of the pantry, he routinely pulls out all our snacks and his recent favorite is the Nilla Wafers, they regularly go rolling around on the kitchen floor. I wish I had pictures to document every time he gets into things…just to prove how, pretty much every moment of the day, I’ve got to have my eye on him!

A couple weeks back he managed to get the lid off of Adam’s after shave bottle and proceeded to splash it all around the bathroom, all over himself, inside his little shoes…IT.WAS.EVERYWHERE! And even after several washes in the laundry and several bathes himself, we still were smelling the after shave!

The other day I was planting flowers in pots on the back deck…I got up to go inside and feed Ava Jane, only to come back and find Emerson having dumped out several pots of potting soil all over the hot tub lid…he was COVERED in black dirt and it was spread all over the deck…I had pictures, but somehow, in the midst of downloading them and going to get something for one of the boys, Emerson managed to cancel the download and somehow erase the said pictures….see what I mean?!! Lesson learned, I cannot leave the computer open in a spot that he can reach.

I do have pictures to document this next faux pas. He got under my sink in our bathroom and managed to throw a bottle of coral pink finger nail polish as hard as he could and naturally it burst into smither-ines and coral paint went all over the bathroom tile and walls…oh lovely…what a joy! After using 2 bottles of remover, we still have a tinge of coral paint in our grout…and of course it ruined his cute turkey appliqued shirt and gingham pants...oh stink!! I hate when perfectly good clothes get ruined beyond repair, that's super frustrating!

Sorry about that nastey runny nose...
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Sitting on the tub step...while we tried to get him and his mess cleaned up...
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Ahh...gotta love it...yet again I had to say my life matra over and over..."joy in the journey, joy in the journey!" He may be a stinker, but he sure is a cute stinker!!
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Monday, November 19, 2012

2 Months...and headed to Children's Hospital

Well, I took Ava Jane in to to see the Doctor this morning because she's had a real rattley cough and sounded very wheezy, I was thinking that she probably had some kind of respitory infection or pneumonia. The Doctor said, "has anyone ever said that she had a heart murmur?" I said "no"...then he proceeded to continue to listen to her for quite some time (I wasn't really all that worried about that because as a baby Peyton had had a heart murmur off and on throughout the first 6 months of his life.) Dr. Byrum said, as far as the breathing problems, that we needed to do an RSV test to rule that out, then that we needed to take an x-ray of her heart, which really what alerted me that this might be something more. Anyway, so we (being Me, Lawson, Wild-man Emerson and Ava Jane) headed back to the lab/x-ray area of the clinic to sit and wait for our turn. They called her name and I lugged all 4 of us up to the lab door, I had Ava Jane in her seat, Emerson flailing on my hip and Lawson trying to crawl around on the floor...needless to say I was in a hot sweat! So when the nurse said, "why don't I just take her and do her x-ray...I'll bring her right back," I was ever so grateful!

We then made our trek back up to the front of the clinic to sit in Dr. Byrum's office while we waited for the results. I pulled every trick I could out to try and keep Wildman Emerson at bay...we did "Here is the Church, Here is the steeple", "The fuzzy caterpillar" along with counting any and all objects in his office as well as reading every kids book that was in there. Finally, he came back in and gave us the results. She was negative for RSV and did not have pneumonia, which is good, she just had a bad cold and needed an inhaler...we've got two of those at home, we're quite good at using Albuterol and Flovent, so that was no biggie...we can do the 2 puffs every 4-6 hours no problem.

He did however say that the x-ray showed that she has an enlarged heart. Honestly everything after that might as well have been "Blah blah blah" partly because I was a little stunned that we'd not known this before, coupled with the fact that Emerson was flailing around like a crazy child in my lap...I had trouble understanding all 4 reasons that could cause something like this and honestly can't recall much of what he explained to me. The only two scenarios that I can some what recall him saying is that it could be because of a valve issue (that is supposed to close by the time they're 2 months old) or a chamber issue...I know that's very vague, but honestly that's all my mind can remember....next time I have 3 kids with me and I've been in the clinic for 2 hours I'll just have the Doctor write it all down because I know I won't beable to recall much of what they're telling me!! Anyway, to make a long story short, they came in and checked her pulse ox and that was good and strong so that was encouraging. Basically, he said we need to go to Children's Hospital and see a Pediatric Cardiologist to see what's causing her heart to be enlarged and the murmur. So, we'll be there one day next week, still haven't heard from the clinic to get that scheduled yet, but if you'll join us in praying for our sweet girl, I'd sure appreciate it!

She turned 2 months old on November 14th and I neglected to get this picture of her up on the blog. Isn't she such a doll?!! She's precious and we love her so! At her appointment today she weighed 11 lbs and 3 oz and is in the 50th percentile. She's begun staying alert a lot more, in the evenings from about 6:00-8:00 she's wide eyed and bushy tailed. And honestly, unless she's got a dirty diaper or is hungry, she's the most content, easy-going, laid back little one that I've ever had. She's been sleeping from about 11pm-4:45am regularly and sometimes evens sleeps til 6:00! She's just truly so easy and thankfully so, because Emerson's about to do me in! : ) We are so in love with her; Adam and I were thanking God for her last night and just COULD.NOT.IMAGINE life without her! We are blessed!!

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Sunday, November 18, 2012

Yo Ho Ho...It's a Pirate Party for Peyton

It's been a fun weekend celebrating Peyton's 6th Birthday. His real birthday was Friday the 16th, we fixed his favorite breakfast which is pancakes and sausage then he headed off to school; he got to have lunch with his Gigi; then I took all the kiddos with me up to the school to take a treat to celebrate with Peyton's class. He was super excited to get to leave school a little bit early! We ordered his favorite pizza, ate cake and watched a movie! It was a great day!

Yesterday, we celebrated with friends and family at a Pirate themed birthday party. It was quite a hit, the kids seemed to have a great time!

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Everyone was greated by "CPT Eugene Sparrow" (according to Adam, that's Jack Sparrow's long lost brother...) Got to love that walrus mustache...and those side burns...looks pretty real huh?
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And there's our birthday boy! It's hard to believe he's 6!
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Here's the dessert table; made to look like a ship...
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These pirate marshmellow pops were super easy. I used red melts from Michael's and a black edible pen to draw on the face and eye patch, the boys loved them.
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The carribean colored "ocean water" was a tastey punch, the ring pops and whoppers aka "canon balls" were a big hit too...and how about those fondant cupcake toppers, how cute are those? I got them from here, off Etsy. I loved them!! I used a printable from here to do the banner, invitation, labels, water bottle wraps, etc. I loved how it all turned out!


All the kids got to dress up like a pirate...there were pirate hats, eye patches, swords and compasses for everyone...I got all the dress up stuff from Oriental Trading Company and the compasses from Hobby Lobby. I also bought a bunch of burlap and a roll of twine that was on sale at Hobby Lobby and wrapped moving boxes to look like crates on a the deck of a ship…
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CPT Eugene Sparrow told the kids, in his most piratey sounding accent, about his hidden treasure...the kids were given 4 clues that were hidden all over the house that led them to the treasure chests...

Here were the clues...
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If you’re hearing this you’re on the right path
To finding me hidden treasure at last.
I hid it near here many long years ago
When without me booty I had to go.

Those swashbucklers they chased me never cutting me slack
But the treasure I robbed, they’ll never get back!
It’s yours for the taking no doubt about that
But to find it you’ll need me treasure map.

So listen up well, its hidden near here
If you follow the clues, it soon will appear.
Here’s your 1st Clue—go to the room where we watch tv
Under the oval table, that’s where she be!
Look under that table, I’m happy to say
You’ll find Clue #2 to point out the way

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Here’s Clue #2-Go climb the stairs
Walk down the small hall, that is if you dare.
You’ll find a small chair, that is where you sit,
You’ll find Clue #3 when you sit down in it.

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You’ve found Clue #3, you’re proving quite clever
But you’ll need Clue #4 if you’re looking for treasure.
Out on the deck there you’ll see a table
You’ll find Clue #4, if find it you’re able.

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Aha, you are smart ones, you’ve found #4
Now look for some stairs and our basement door.
Way down at the bottom you’ll see boxes for digging
Fill up your sacks then go help with the rigging.
We sure do hope your adventures been fun
Now GO, find your treasure the hunting’s almost done!

We turned our deck into a ship’s deck…
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They used their sacks to hold all their hidden treasures: gold coins, necklaces and rings…
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After that we blew up the bounce house…
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We sang happy birthday and everyone chowed down on all the sugary goodness!
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Then it was presents time…he LOVED everything, in fact he’s been playing with all his new things non-stop since the party yesterday! He told me this morning, “Mom, I loved my pirate party!” I think it was huge success!
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Thanks so much to everyone who came and helped us celebrate!!

Monday, November 12, 2012

Tapping into the Power...

Recently I've become more and more aware of my GREAT need for the Lord. I've always known that I needed Him...but I've become supremely aware of my desperately deep need for Him. It's interesting because this has been a recurring lesson or thought in my quiet time each morning, our pastor preached on it yesterday, and it was the topic of the book we're reading for our Community Group study last night...ya think He's trying to teach me something?!!

We've been going through a study with our Community Group at church called the Gosple Centered Life, I highly recommend it, it's quite challenging, but last night Adam and I were reading our chapter for this week and it was talking about the power that God has made available to us if we'd only tap into it. And I had to stop and ask myself, "Why don't I tap into it more?" "Why is it so hard to do regularly?" "Truly, if God has made it available, why, then is it SO incredibly hard for me to do?"
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These questions have run through my mind a lot lately...when I'm struggling to keep my tone of voice from reaching a screaching sound with my kids, when my frustration level is about to hit the roof and I end up going off on my innocent husband (who, may I add, takes it without "returning evil for evil"---what an example he is for me, I LOVE him!!) In those moment when I've asked my child twenty-five times to get his shoes on, get his juice cup, get in the car and strap himself in...why do I loose it? Why don't I just stop and ask the Lord for help?!! He says if I ask Him He will help me...He will keep me in perfect peace if only I'd keep my focus on Him instead of thinking on my ever increasing and lengthening list of "to do's"...I seem to get lost in the weeds of trying to be a Mom, a friend, a teacher, a chauffer, a piano instructor, a chef, a laundry specialist, a party planner, the bill payer, the grocery shopper, an all the time list maker...the child of God who truly does want to follow Him, listen to Him, learn from Him and ultimately tap into the power that He's offered to me...if only I could "plug" myself into Him more!

Well, I do have an answer, its not rocket science and it's not real deep, you probably know the answer yourself, but sometimes things just have to hit me in the face...the power that I'm talking about, the power that I need, comes from meditating on the word of God, truly knowing, and hiding God's word in my heart so that I might not sin against Him, it's so simple yet so hard sometimes! If I'm meditating on His word, I've found that tapping into the power is so much easier and He truly does provide it, because His words are buzzing around in my brain. So I've begun memorizing scripture again...when I've done this in the past, it's been tremendously helpful. God's word is like a grid, a filter, that helps us to choose and to act according to the way God wants and desires us to. So, though I'm certainly not perfect at this, I'm in a long, long process, but I'm inching my way forward! The verse I've begun memorizing is Psalm 105:4 "Look to the Lord and His strength; seek His face always!" It's perfect, in those hairy, rip your eyes out moments when the kids are screaming, the bread is burning, the water's boiling over and the baby needs to be fed...I'm gonna "look to the Lord and HIS STRENGTH"...I know He's provided it, I need it, and I'm gonna take Him up on it!

A friend of mine in Birmingham once told me that in those moments of weakness she literally starts praying outloud for God to help her...she said the first couple of times her kids would look at her like she was a crazy woman, and wondered who she was talking to, but really, what a great example she is setting for them, to show them how to daily, moment by moment, walk with the Lord and ask Him to give her strength. Funny thing is, that's exactly what His word tells us to do. So my challenge to you, and to myself, start talking to God, outloud, in your moments of weakness...at the height of frustration, call upon the Lord and ask Him for help! In Jesus Calling this morning, one of the verses to look up was Deuteronomy 33:25 "There's no one like the God of Jeshurun who rides on the heavens to help you..." My God rides on the heavens to swiftly and quickly swoop in and help me, I need only to ask. "Ask and it will be given to you, seek and you shall find, knock and the door will be open to you..."

I'm finding that the more scripture I memorize the more freely and quickly His word flows into my mind. Praise the Lord, O my soul! Help me Jesus, I'm desperate!!

Friday, November 9, 2012

Busy Busy Fall

My, oh my, this Fall is flying by! I can hardly believe that Thanksgiving is just two weeks away! Life seems to be in warp speed, at least this past week it has been. I’ve told several friends along the way that I feel like a ping-pong ball because it seems that so much has been going on that we literally go from one event to the next, bouncing back and forth. It’s not a bad thing, it’s actually been lots of fun things, it’s just been a week of “go here…go there…” You know how it is, its those days where, when I leave the house with the kids at 7:50 (which is quite the feat) and don’t return home til 4:30 or 4:45, if I forget anything when I leave it sends the whole day into a tailspin, so, no pressure, but DON’T FORGET ANYTHING!!

Honestly, the other day I took a look at my passenger front seat, which looks like Hurricane Sandy hit it, and thought, I’ve got to slow down a bit! I’ve had four bags that I keep up there that basically hold my life together…you know the kind filled with snack traps with Goldfish, Capri Suns for when the boys are thirsty in the carpool line, Bible study books for when I have a chance to read while in the carpool line, notepads with running lists of things to do or to buy, and of course the proverbial trash that piles up in my car! Life has been crazy busy, but full of good times and truly great conversations with friends. Here’s a little bit of what we’ve been doing…

We did go Trick or Treating with our Community Group, it was lots of fun, thanks for hosting us Carol and John!
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We were quite the crowd going from house to house!
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They had such fun...our little lady bug hung in there...it wasn't quite as enjoyable for her, but she was a trooper for sure! Is he not the cutest astronaut you ever did see?!!
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I took the boys to play with Aunt Molly and Jojo at a park...
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The boys LOVED playing in the leaf pile!
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Big sticks and a leaf pile, what else could little boys want?!
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Yesterday, since Peyton had the day off from school, I asked my Mother In Law to get the little boys from pre-school and to keep Ava Jane so I could have some one on one time with him. What a trooper she is! Since my life has been so busy, I'd neglected to change the clock in my car or on my watch, and when I unknowingly dropped Ava Jane off a full hour early (10:15) she didn't say a word...not until I got to the theatre (which wasn't open) did I realize what I'd done! Thanks so much for your help Donna!

Needless to say, we got to spend more time together, which was really fun! We went to Chick-Fil-A for breakfast, then to Wal-Mart to let him look at toys that he might like for his birthday or for Christmas...
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He really has his eye on this 4-wheeler...
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He had fun riding the Shark...
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And because we were an hour early, we played in the arcade...he had a blast shooting the moose and wild turkeys as well as riding the motorcycle!!
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We went to see Wreck It Ralph in 3D...I loved my date! He is precious and I was so glad to have gotten to share popcorn, mnm's and a drink...just being with him was such a treat!
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Lakin' it with friends

We have gotten to know the Livers over the last two years and truly enjoy their friendship. Two years ago we were one of their boys Sunday ...