Tuesday, December 18, 2012

Merry and Bright!

I feel bad even typing the words "Merry and Bright" enlight of the circumstance in CT, what a tragic and horrible ordeal, I cannot fathom the depth of grief those parents are feeling, my heart aches and breaks for them; each time it comes to mind I offer up prayers for God's peace to rest upon their minds and hearts!!

But for us, honestly I feel like these words ("merry and bright") describes where we are. I took Ava Jane to the doctor yesterday for her one week check up after being discharged, and she looked great! Dr. Byrum just reiterated to me that had we lived anywhere else in the state, we most likely would not have made it to the hospital with a living baby...that, based on the information he had received from the hospital, had her PDA closed any sooner, she would have simply died before we could have gotten her to the hospital where they put her on the medicine to hold the duct open. So to look at her now, after these few short weeks from where we were, I'm filled with "merry and bright" thoughts as I think about what "can be" now that her little heart is fixed! God is good!

And as I look around my house I'm filled with "merry and bright" things because my good friend Michele James decorated my house for me! She came into house while I was in the hospital with Ava Jane and decorated for me so that we'd be able to experience a some what "normal" holiday! Literally Adam got down all the Christmas stuff, I ran home and pulled things out so it was some what organized when she got there, but for the most part everything was simply in boxes and she came in and did it ALL! I can't thank her enough for beautifying my home for me! She does this for people at the holiday's so if you're interested in getting her contact information, message me with your email address and I'll get it to you!

Here's the tree...
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My mantle...
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A close up of the mantle...
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3 Tiered trees
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In the Living Room
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Lawson loves to hold his baby sister...her Christmas daygown says it all..."JOY"; that's what I feel these days, pure joy for where we are and what God's saved us from!
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Last night Adam and I sat on the couch counting our blessings and this sweet little one got to enjoy the beautiful lights and Christmas music too. All is peaceful, merry and bright! Thank you Lord for what you've done.

I am singing Him praises, and thanking Him daily!
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And just keepin' it real here on "Head Happenings"...after much fidgeting and scrunching, and a little bit of fussing...the bow won! But somehow, she fell asleep with it across her face, feathers and all...she truly is easy going, laid back and all in all pretty chill, which is a good thing because Emerson keeps me hoppin'!
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Thursday, December 13, 2012

A Scar

Sorry I've not posted anything in the past days since leaving the hospital. I've been up to my eye balls as I re-orient to life. I don't know if its just exhaustion or simply the phase of life that I'm in (it's probably a combo), but I've been tired and honestly just trying to push through. The Christmas season is busy and hectic anyway, but with what's been going on the last few weeks, it's been comin' at warp speed it feels like. Crazy that Christmas is 12 days away, what?! I totally missed Thanksgiving, it's hard to believe we're almost to Christmas! Wow!

I've gotten lots of texts and emails asking how things are going now that we're home...she's doing really well. She's been nursing good and sleeping pretty good too, though I have felt like we're back into the newborn stage just trying to get off the hospital schedule of people coming in every other hour to check vitals or give meds.

I have such a hard time believing that we are where we are...who would have thought that 3 weeks ago I would be out shopping and having lunch with friends today...she's doing phenominally well! If it weren't for scars and meds she takes every 8 and 12 hours (which has taken some getting used to for me...I've never been good at taking medication on a regular basis, but I can't forget these) you'd never know she'd been through what she has!

I looked up the definition of "scar" its any mark left on the skin or other tissue following the healing of a wound; it's a permanent change in a person's character resulting from emotional distress. Well, she certainly has one of those, and I definitely have a permanent change because of the distress. I've never been a paranoid Mother, never been one to flip out about handwashing and antibacterial hand sanitzer; never been one to really worry about the kids thinking "they'll be ok"...so I've found myself in a new position, one that checks her often as she's sleeping (making sure her little chest is still rising and falling) and being so vigilent with hand washing; this is kind of new for a Mom of four!

She has quite a long incision on her back and she'll always have a little indention where her chest tube was...but as I look at the miracle of her, I'm convinced that these "scars" will serve as memorial stones for both she and I. Memorial stones of God's faithfulness!

My Mom has always talked about "polishing her memorial stones" (remembering the times where God has intervened or provided) so that's not an unfamiliar concept, but now it takes on a new meaning for me each time I pick Ava Jane up (one hand under her head and the other one under her bo-bo) and I feel the thick line of scar tissue running along her incision. It is my memorial stone. It is my reminder. God saved her, God protected her, God was gracious to us! I love to think on it, and "polish my memorial stone" as I stroke her hair and pat her little back! God has been incredibly gracious and we are grateful!

Here is what her scar looks like...doesn't it look amazingly well! It's never oozed or drained or anything. It only had a dressing on it for the first 3 days, but after that, nothing!
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And here's a picture including the spot where her chest tube was...
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She truly is the best Christmas gift I could get this year! Thank you for praying and caring about her! We have a follow up appointment on Monday morning and are praying everything looks good. We have another appointment with her Cardiologist on the 26th to do another Echocariogram. Will let you know how things go!

Saturday, December 8, 2012

Getting An Education

I feel like I have gotten quite the education in the past few weeks! Not necessarily learning things that I wanted to know about but certainly learning about things that will make me more empathetic and sympathetic with others who go through similarly hard situations!

I thought there were a lot of accronyms to learn when Adam was in the ARMY, but there are just as many that I've had to learn while here at ACH (Arkansas Children's Hospital). Here's a scenario just to give you an example of what I have learned: Ava Jane was admitted through the ER to CVICU, she had a Coarc and had a PDA that she took PEG's for; she had meds that she took PRN; then there were meds that were DC; toward the end of our stay she was allowed to eat "ad lib", I learned the difference between an RN and a PCT, APN, RT and OT. I learned to "read" heart monitors, ventilators and pumps. I learned what "infusion complete" means and what "pressure increasing" is (on an IV/Central line). I got familiar with keeping record of "in's" and "out's", weighing each diaper she had and timing exactly how long she fed. I learned how to count feeds by mls and I became familiar with both gravity and pump feeds. I know in CVICU they use 5 chest leads and in other areas of the hospital (the PICU) they just use a 3 lead adapter. I've gotten to know day shift and night shift (nurses and doctors) and I don't take for granted the nurses and doctors who work the night shift and the holidays, these wonderful people are who helped our precious angel baby get well so quickly! I've learned how to work 5 different hospital beds-the warmer, Stryker crib and the Midmark 500 (its by far the trickiest to get the rails down on). I've learned to convert the weight they give me to pounds by multiplying by 2.2--as of today she is 4.809 grams. I've learned the difference in a central line, "venus" line and a regular IV; as well as the difference in an NG and a TPT tube. I've learned what CPT is and become quite familiar with the vibrater and "bopper". I now know the difference in a Thoroctomy and a Midline Incision; I've learned that there's a scale from 1-6 on how difficult heart surgeries are (1 being fairly straight forward and 6 being an extremely complex surgery). And would you believe that a heart transplant is actually NOT a 6, I thought for sure that it would be...proves I still have A LOT to learn!

My education over the past 2 weeks has made me more aware of just how many kids are born with heart conditions, its unthinkable that these rooms (36 in total) on CVICU have constantly been filled for the past 16 days, I never realized how common heart conditions are. Many people celebrate the holidays regularly in here, some (like today) have to celebrate their birthdays in here. Adam watched as a little boy in a wheel chair with his IV's celebrated his birthday out on the playground, this should not be!! As we've gotten to know other families whose kids are far worse then Ava Jane, we've realized just how blessed we are to only have one heart defect and its one of the most simple to fix. We've been here a little over 2 weeks and we are truly ready to go home, but some families are here for months on end, we are grateful that we will get to take her home tomorrow or Monday! What a blessing!

Several weeks ago, Mark Henry preached on "Divine Interuptions" and we feel like this was one of those for us! In the weeks leading up to this "Divine Interuption" Adam and I had honestly just been talking about how seemingly "easy" life was for us (moving to Little Rock went smoothly, the last of my pregnancy went well, the delivery of Ava Jane was fast and the recovery was quick, Peyton started school and he really liked it, we were getting into a routine of having a newborn and getting the boys to Mothers Day Out and school) truly things seemed to have leveled out and were going great. Then, Wed, November 21st came and the "divine interuption" happened. The diagnosis was truly shocking and caught us completely off guard. We were surprised and truly stunned. But we were not shaken. We both felt an incredible peace in the midst of this storm.

We both feel like the main thing we learned while living in Birmingham, was our deep, desperate need for time each day with the Lord. It's been amazing how seamlessly everything has fit together, God has truly been our vine and we are the branches, we have been "remaining in Him" and He truly has remained with us, we have been covered and blanketed in His perfect peace, His extra portion of peace, throughout these past 16 days. God has been ever present recalling to our minds verses and songs that have lifted our spirits and strengthened our faith and we are grateful and humbled.

Here is our sweet baby girl without any tubes, praise the Lord! She has been smiling all afternoon and we love to see it!! She is a real trooper, we are so glad God chose to give her to us!!
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Thursday, December 6, 2012

Giving Thanks To God

Oh my goodness, what a difference a few days can make! The song that's been playing through my mind the past few days is actually off the kids Bible memory verse cd, Seeds of Worship. It's Psalm 136:1-7 "Give thanks to the Lord for He is good, His love endures forever. Give thanks to the God of gods, His love endures forever. He spread out the earth upon the waters. His love endures FOREVER!"

I've been reading "Jesus Calling" and the last few weeks have really focused on the idea of being thankful in any and all situations. Here is an excerpt from the night before Ava Jane had her surgery:

"Rest in the deep assurance of my unfailing love. Let your body, mind and spirit relax in my Presence. Release into My care anything that is troubling you, so that you can focus your full attention on Me. Be awed by the vast dimension of my LOVE for you: wider, longer, higher and deeper than anything you know. Rejoice that this marvelous love is yours forever."

"The best response to this glorious gift is a life steeped in thankfulness. Every time you thank Me you acknowledge that I am your Lord and Provider. This is the proper stance for a child of God: receiving with thanksgiving. Bring Me the sacrifice of gratitude, and watch to see how much I bless you."

Honestly, in all that's happened in the past 2 weeks since being admitted to Children's, Adam and I have not struggled with the "why's" of this congenital heart problem that Ava Jane has, but rather, we've just wanted to take away the problem and make it go far, far away. We however, were helpless to do anything, we had to just trust the doctors and believe that what they knew and thought was best for her, but ultimately we had to trust the plan that God had pre-planned for her sweet little life.

In both mine and Adam's quiet times the Lord was impressing upon us to just give thanks for all things and in all situations...so we started recounting all that there was to be thankful for and we were overwhelmed with what God has done over the past weeks. He allowed us to find this problem (in a medical environment, not just at home or out somewhere if she had turned blue or stopped breathing); He enable Adam to have this job that put us back in Little Rock where we could have access to one of the best Pediatric Cardio Vascular surgeons and an excellent Children's Hospital; He kept her PDA open in her heart, which normally would have closed right after birth, which continued the blood flow to her extremities; He gave her RSV so that she'd be pushed over the edge of her Coarctation in such a way that she couldn't compensate for the narrowing in her aorta any more and it's what revealed the problem to us. We feel extremely blessed and truly thankful!!

Just as Jesus calling says, "We are continuing to rest in the deep assurance of God's unfailing love...and we are rejoicing that this marvelous love is ours forever!" We are going to let "thankfulness rule in our hearts...as we thank Him for the blessings in our lives it is as if scales fall off our eyes enabling us to see more and more of God's glorious riches....a life of praise and thankfulness becomes a life filled with miracles!" And truly, Ava Jane is just a little miracle! Our miracle! God has blessed us immensely and we are humbled!

Today has been another HUGE day. They've let me nurse her "ad lib"--whenever she wants. And right now the APN is drawing up the paperwork for her to be moved from PICU out to the floor (step down area)! We are slowly weaning her down off the oxygen, she's currently at 3 liters but is breathing room air (21% oxygen), her blood pressure has been up so they're watching that, but her respitory therapist says she's sounding good and her OT is just checking in once a day to "monitor" her feedings to make sure she doesn't aspirate. She is still hoarse sounding and muffled a bit, but is sounding stronger then yesterday as far as her cry and coughs which is a good thing! Her arm that had the "mottling" from her Arterial Line causing the artery to spasm is looking much better! So over all she's doing great! We have been tremendously encouraged to meet several people in the past day who have had Coarcs just like her, and they have gone on to live a healthy, happy and normal life. We praise the Lord for what He's done in her and how He's saved her life! We are truly blessed and thankful for how God has orchestrated and cared for her!

We had the best nurse yesterday! She truly loves Ava Jane and she actually came by to check on her today even though she wasn't working! Every one of the nurses and doctors up here kept walking by her glass door and commenting on how pretty and cute she is so she got nick named "Little Miss PICU"! Now we just need to find her a tiara, for now, we'll just wear big flowers!
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Wednesday, December 5, 2012

Cuddles and Comforts

I apologize for not posting before now, but yesterday was filled with simply trying to comfort my sweet baby girl...she couldn't be held and she will not suck a paci...it was heart breaking to watch.

Yesterday was a BIG DAY, they extibated her (took her off the vent) early in the morning, it was before the shift change at 7am. We were super thrilled to get that report in a phone call that we received from her nurse. She was doing well, retracting a little and on 6 liters of oxygen running thru her canula, but she was tolerating it pretty well.

When we got there about 8:30am she was crying, but the thing I wasn't prepared for was the fact that I could see her mouth wide open and tears coming out of her eyes but we couldn't hear it at all. Apparently its because the ventilator held her vocal chords open and with her having been ventilated for 5 days, it will take time for sounds to be made...I WAS.NOT prepared for that, it was HEART BREAKING! Several times throughout the day I just wanted to burst into tears because she was so uncomfortable. They took her off the morphine pump in order for her to be alert enough to breath on her own, she only got one dose of Tylenol with codine all day long, so I know she was not feeling well on top of the fact that they weren't doing any feeds in case they ended up having to sedate her again and re-intibate, which they did not!! Praise the Lord!!

A lot of her tubes were out, namely the chest tube and vent were gone, so I was wondering when my aching arms could hold my sweet girl again, after all it had been 5 days...I kept asking, and the answer kept changing: "maybe at lunch", "maybe this afternoon", "maybe after her feed", "maybe after she's rested"....AAAAAHHHHHH!!! Come on, I wanted to hold my baby!! So I finally just sat on the edge of her bed, determined that I wasn't gonna move (she would have to reach around me and over me to get to Ava Jane)...and finally I just got a little bit adament and asked again, "can I hold her now?" And she finally said a hesitant "ok". YES!!

Holding her was such a treat...I love this baby girl, she is a doll baby and I am so thankful for how the Lord has strengthened her and begun the healing process.

This morning she was moved to PICU (Pediatric ICU)and throughout the day they have slowly been removing more tubes and equipment! She's now off of all her pumps, except one (with her Heparin meds), she's down to 21% oxygen and at 4 liters which is great, her stats have been good too, her lungs sound mostly clear, which is good...she's still seeing a Respitory Therapist to break up the secretions every 4 hours and she'll see an OT everyday at noon until her feeds get better. She CAN.NOT.STAND a bottle or a paci, so they did let me try to nurse her and she latched on immediately, but was only able to nurse for about 6 minutes and then she got real tuckered out, which is to be expected, but please pray that she can nurse increasingly more because she has to be supplemented through her NG tube, and we have to improve our feeds and actually gain weight in order to leave the hospital...So, that's the big prayer request now.

Here's a picture of our most precious patient! We've been enjoying our cuddle time this afternoon, we both fell asleep for a bit in the rocker together...it warms my heart to have her near me! Oh how I love this baby!
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Monday, December 3, 2012

Merry Christmas!

Well, she had a wonderful night! Which is a huge praise and a complete answer to prayer! She didn't vagel at all yesterday which is HUGE! They lowered her Oxygen to 30% and down to a 6 on the ventilator settings. She is in Volume Support Mode which is where she's breathing on her own (on the vent) but will be backed up if she holds her breath or doesn't take a breath...she did great on that last night, since I've been here this morning its gone off several times and she's gone into backup mode and had to be bagged one time this morning, but so far, she's doing well. Her right arm has "mottling" its where her Arterial Line was. Apparently its where the artery spasmed with that line in, so yesterday they removed that line and have been having to do nitroglycerin paste on her arm to hopefully help with the splotchy, bruise-like look of her whole right arm. It's caused by capillaries not getting enough oxygen, and it causes her profusion to not be real good...it's looking better, but please keep praying for the circulation in that arm. If all continues as it is, we may be able to try and take her off the vent in the next few days! Right now, its the RSV that's still holding things up, so please pray for that virus to be gone from her body. She's taking the feeds really well, and nothing leaked from her chest tube so they pulled that out yesterday! And they got her back on breast milk and she's doing great! So as you can see we're making improvements! The thing Dr. Gupta and Garcia have been most disappointed in, is the amount of secretions they are sucking out of her lungs, so please join us in praying for those to diminish!

Over the weekend we went to Breakfast with Santa, a fundraiser for ACH. The boys had a blast, they got to eat their favorite breakfast, pancakes and sausage; see the firemen (who served us breakfast) and sit on Santa's lap...what more could a kid ask for?

Sorry this one is blurry...
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Riding in Santa's Sleigh...
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Lovin' on Rudolph...
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Playing on the firetruck...
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This is hilarious...Miss Teen Arkansas tried to take her picture with the boys, Lawson's face is priceless!
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Heading up to the playground while Mom, Dad, Adam and I traded off getting to see Ava Jane because the boys aren't allowed on the floor. They loved getting pulled around in the wagon...it was a great day for them (pancakes, Santa, firetrucks, wagon and playground time), couldn't get any better!
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I couldn't help but celebrate all her accomplishments! She got her NIRS off (it reads the oxygen level to her brain) so we put on a big ole Christmas bow and headband to help cover up the shaved area where they had to put in a scalp PIV. Stink! Doesn't she look festive and cute! And how about those little Mudpie ruffle socks? Too cute!
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We love our little Christmas gift...She's a fighter and is doing so good! We can't wait for her to be all well again! Please keep praying, God is answering and we are humbled by His gracious provision!
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Sunday, December 2, 2012

Rough Night...

Well, we got a call last night at 1:00am. Apparently there was something wrong with her central line (in her leg--"venus line") and the PIV that was in her left hand failed too, so they ended up having to put an IV in her scalp (which means they had to shave a portion of her head). Right now, they are trying to put a Central Line back in because they need a place to beable to give her meds and draw blood...they are doing an ultrasound on her neck right now and trying to get that Central Line there...she has no other options, all her veins are blewn from all the PEG meds she had prior to surgery, so we need this one to take! Also, they increased her feeds from 5mls to 30mls, which is great! But the frustrating thing is that I had been taking all my breast milk (which I've so fervently been trying to stockpile) down to the Lactation Center each day (so that it doesn't take up room in the refrigerator up here in CVICU) and for some stupid reason they close the lactation center after 10pm, so instead of feeding her breast milk they had to start her on formula. THAT.IS.FRUSTRATING! Ughhh! When they called and told us all of this at 1am I was super upset, because there's plenty of frozen breast milk downstairs in the lactation center, but how are you supposed to get the milk if the place is closed?!! So, you can bet your bottom dollar, that I'm gonna start filling that fridge up, some other mom is taking up a whole shelf here in the CVICU, so she's not been taking her breast milk down every morning like they've told me to do. So, I'm sorry, but I think I've decided to not be a rule follower this time, I'm leaving every single bottle from here on out, in that fridge outside her room! They will not run out of thawed milk again!

As far as prayer requests-
-Please pray that once they do start the breast milk again, that the fat doesn't leak out through the chest tube...if it doesn't then they will remove the chest tube later today or tomorrow.
-Pray that they are able to get the Central Line in her neck
-Since they are having to do the Central Line they've had to sedate her more which means she's no longer initiating her own breaths on the ventilator, please pray that they can raise her up off the sedation so that she can begin intiating her breaths again...that would be steps in the direction of removing the vent and that's what we're hoping for.
-Pray for strengthened lungs, they're still really sick with the RSV, they've been suctioning a lot off and its begun to be tinged yellow, so please pray that no infections occur

Saturday, December 1, 2012

Saturday Morning Update

Well, last night was "uneventful" according to Ava Jane's nurse this morning when we came in to check on her. She did vagel many times throughout the night and has done so several times this morning since we've been here, but she's ok.

She has "bradied down" several times, but responds to oxygen, so that's good. They've been able to maintain the 40% oxygen pretty much, so that's a good sign too, they'd still like to wean her down from that though. Her temperature is now at 37.1 which is great! She's still off the BP meds so she's been able to maintain her own pretty well now for 24 hours. They are thinking of trying to do a feed sometime today so you can pray that when they do, it doesn't leak out into the chest cavity (this is called chyle effusion)...see I'm still learning things! It's a milky fluid consisting of lymph and emulsified fat extracted from chyme by the lacteals during digestion and is passed to the bloodstream through the thoracic duct...sometimes that can leak into the chest cavity and we will know this if it shows up in her chest tube, please pray that this doesn't happen and that it all goes smoothly. If it does, they'll have to stop the breat milk (which has a high fat content) and put her on a low fat formula, we're praying that doesn't happen. If all goes well, they may try to remove her chest tube tomorrow!

Now, for a little comic relief, you've all heard the saying, "Don't cry over spilled milk"...well my sister recently told me a funny line that a friend told her..."anyone who's ever said that, has NEVER had to pump!" And I totally concur!! Breastmilk is like liquid gold...and praise the Lord, it's flowing nicely now! I have quite the little stockpile for Ava Jane once everything gets back to normal! So truly, thanks so much for those who've been praying specifically for that for me! This is her little stockpile just from last 2 nights we've been home and this morning...I even ran out of the bottles so I just kept having to dump it into the baggie, PRAISE THE LORD!!
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Ava Jane's 5th Birthday - A Tea Party

I cannot understand how today, September 14th, 2017, we could possibly be celebrating Ava Jane's fifth birthday.  I still vividly rememb...