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Showing posts with label Adoption. Show all posts
Showing posts with label Adoption. Show all posts

February 27, 2013

How to lose 15 pounds in 20 days.

How to lose 15 pounds in 20 days. The answer is pretty easy.  Go to Africa. Take care of a very sick baby with no medical support.  Be confined to a hotel room because you've been advised to not leave the property with your baby.


Get to the states and promptly make a hospital room your place of residence.  Then... once you're back home and life is normal, a friend will look at you and say, "We need to get some weight on you girl!" And you'll say, "Huh? What are you talking about??" and then you'll feel your jeans, look in the mirror, glance at a picture of yourself, and suddenly realize you're 15 pounds lighter.

This is what happened to me the first month I was home. It wasn't necessarily a good or bad thing.  It was just a fact. Ultimately though, I certainly wasn't pleased to have lost the weight.  I like those 15 pounds of padding just fine. So... lil by lil I've been trying to gain some back. My first tactic was to wildly attack holiday feasts.  Then I decided to just eat with abandon everyday in the name of "gaining it back."  Sugar cookies? Yes m'aam. Sweet tea? I think I will. Wings and Dr. Pepper delivered to my door? You betcha. But then I realized I was feeling super exhausted and crummy. Even though I managed to do it guilt free, obviously I knew I wasn't making the healthiest string of choices.  So now, I'm pursuing HEALTH (more water, less soda, more veggies, less carbs, more pure food, less preservatives, etc. etc. etc.) All in the name of health and energy.  Do I care what I weigh? No. Not really. Do I care if I have energy to make it to nap time? Yes. Yes I do.

So... what do you do to take care of yourself? Are you a juicer? A runner? A zumba-er? (or is it a zumbee?) I'm hoping to take the bull by the horns this Spring and pursue health like never before.  If anything, I hear clean eating gives you a "glow" and if you could see the dark circles under my eyes right now you would know a "glow" is something that sounds pretty darn awesome:) I mean just look at this text... my girlfriend had just confessed her frustrations with the inaccurate scale at the doctor's office when I responded with this:


Aren't girlfriends the best? So, anyhow, carrots, and spinach, and berries, and blah blah blah... Here we come. And seriously, if you're a juicer and you have a recipe that is delightful (anything that doesn't involve holding your nose and chugging is what I'm deeming 'delightful'), I'll gladly take it. Send them my way!

January 25, 2013

Making the new 'normal' normal.

For the past 3 months my mind has been running at top speed… mL, feeding tubes, nitric oxide, granulation, timers, pumps, rate/hr, adoption post-visits, physical therapy, occupational therapy, stretching techniques, sensory input skills, feeding therapy, aspirating vs. normal cough, new hair care routine, appointment, appointment, mL, 15 oz of water, extensions, bolus, night feeds, no night feeds, meds, meds, appointment, appointment, vaccine, meds, appointment, etc.


Anything outside of these parameters takes a great deal of effort to address… laundry, checking my email, dusting the house, eating breakfast… these things are barely on my radar and I have to really concentrate to put them there.  I HOPE we are nearing a stage where things settle… and the “normal” becomes “normal.” 

You may remember how well we were doing with Abi’sfeeding… we still are… however the past few days she has vomited a number of times.  The nutritionist feels it’s due to a virus (even though she feels great and has no fever) since she had been tolerating the new routine/formula for almost a week before vomiting started… I want to believe that’s the case since the new routine was rocking my world.  (In a good way.)  Abi’s pediatrician wasn’t very concerned yesterday, but if it continues she wants to address it- since Abi can’t afford to miss many calories. Sooo, I’m on day 2 of pedialyte and just a little formula… we’ll see how that goes.  Hopefully it will go great and the virus or whatever is gone!  Please, Lord?

Right now Abi should be napping, but I see on the monitor that she’s smiling, staring at her stuffed animals and “talking.”  Oh this girl’s a rock star.

Being behind on laundry, emails, etc. really messes with my mojo. I like to be a super organized, ‘I’ve got pretty-much-everything-in-control’ type of gal and having two weeks’ worth of laundry on my bedroom floor is a good way to make me feel “off.” Due to the vomiting I was able to avoid going to the hospital for our nutrition appointment today and instead had the meeting over the phone… this means I have all day to snuggle up… perhaps order Dominos- again- (Don’t judge- I eat all organic MOST of the time- can you tell I’m arguing with myself here?) and get things IN ORDER.  Step 1: Laundry.  Step 2: Check / organize email. I literally have 2,276 emails in my inbox.  Oh wow.  

BY the end of today I hope to have a vomit free baby, an empty hamper, and an organized inbox… It’s an ambitious dream...

But, here we go. 

mae

PS: There's a very special little boy on my radar who needs a family!  Considering adoption? Know somebody who is?  I'll be posting about him ASAP- so check back soon to learn more about this precious child!!

January 23, 2013

I Would Gain 40 pounds in 3 months...

... if what just happened to Abi's body happened to mine. (Sidenote: just in case you've been saying 'Abby' in your head... that's not how we say it. Abi rhymes with baby.  Thus the reason we say, "Baby Abi" so much.. it rhymes... and rhymes are fun. okay, PHEW: glad we got that over with.) Alright- back to gaining weight.  If I were Abi I would have gained 40 pounds in the last three months. The child has gained 5 pounds since arriving home, which is a substantial percentage of her entire body weight. She came home as a "newborn", couldn't hold her head up, she had no trunk muscles, she kept her legs and arms tightly bent in towards her body, she didn't respond to much other than touch and music (no eye contact, no looking towards a toy, etc.) and she was so very malnourished.  At the height of an average American 2 year old, she weighed less than 15 pounds.  ALL of her ribs were visible, she had no belly, her ankle and her thigh were about the same size, and her knee was the largest part of her leg...soo skinny... and now, NOW I have the privilege of holding a full blown TODDLER.  Last night Sean and I just stared at her... we COULD NOT believe how much she had grown in such a short amount of time.

This was her in October at our hotel in Africa:


And this is her now. I mean just look at those cheeks.


 She's DOING so much more too.  She's gained much more control of her head, she is engaging her trunk muscles and trying to sit on her own, she rolled completely over the other day at my mom's house, she's kicking up a storm, she's keeping her arms and legs straight or at midline most of the time (VERY big deal) she's touching her face, she's recognizing toys and moving towards them, she looks at whoever is talking to her, occasionally she mimics sounds you make, she opens and closes her hands, she recognizes her name, she looks at pictures of a book while you read it, and she RESPONDS to music.  I put that in caps because she REALLY responds to music. She doesn't love all music though. She has her favorites and her not-so-favorites.   Beyonce and Sean being her top 2. Here she is watching Beyonce sing at the inauguration Monday.  Pure bliss.


She'll hear the first chord of one of her favorite songs (even if I haven't played that particular song for weeks) and start laughing or kicking. No need to wait until the chorus, she knows it right away. During American Idol the other night she legitimately cried every time someone who was bad sang and as soon as they stopped singing she stopped crying.  Then a talented vocalist would begin singing and she would start smiling and laughing.  She's got some discerning taste. The other night (knowing how much she'd love it) I took her to the studio Sean was recording at.  The second she heard her daddy's voice coming through the speakers she was in heaven.

Photo: Hanging with daddy at work tonight...

All this to say, MAJOR things are happening in this house.  The eye doctor even said she doesn't need glasses right now... This is the same child whom we thought might be completely blind last December.  Miracles, miracles, miracles. 

And now, I must go feed my 20 lb babe some lunch.  Without the pump. So blessed.

January 21, 2013

Feeding Freedom!!

Last week was a very, VERY happy week because we got our first feed in through a syringe and not the pump.  This means I can now attach the feeding tube to Abiella's button on her stomach and insert a syringe full of formula.  Boom. Easy.  Fast.  The pump, (which allowed the food to insert her belly at a slower rate) took 3 times as long and required bags, an IV pole, etc, etc, etc... Long story short, the first successful feed with the syringe was a HUGE deal in our house. Like a REALLY huge deal.

Photo: 2nd day putting a syringe straight into the feeding tube to feed Abi!! No pump!! (ie no 20 minute setup time, no iv pole, no bags...) SWEET FREEDOM!!!!!!!!!!

Then on Thursday, Abi's nutritionist gave us a higher calorie formula to start using. She suggested we devote three days to transition Abi to the new food while simultaneously increasing her day feeds and getting her off of the night feeds. A pretty tall (but exciting) order. We decided the weekend was a perfect time to do this and other than two minor vomiting episodes it went really well...

Saturday we needed to have a pretty low-key day while Abi's stomach got used to the new situation... So, it was deemed a "palette day."  Few things are better than a good palette. Sidenote: I've discovered that some of my friends didn't use this term growing up. I'm not talking about a wooden palette.  I'm talking about a stack of blankets and cozy pillows that you lay on in the middle of a living room floor... we used to make them during sleepovers, or if you were sick and wanted to be in the living room by the fire, or if you just wanted to stretch out for a Saturday in front of the TV.  Pallets are THE. BEST. and the best place to take a nap. Hands down.


By the afternoon, Abi was feeling good and we decided to take advantage of the beautiful weather.


I was getting serious cabin fever, so 55 degrees and sunny was nothing short of a miracle. (It's now 28 degrees as I type this... warm weather come back!)


By Saturday night we had successfully increased all of Abiella's day feeds, so she went to bed withOUT the pump. Oh my gosh- what a feeling.  We just tucked her into bed... no cord attached to her belly... no worries she would roll over and snap the entire button out of her stomach... no 30 minutes setting up the pump, no cleaning the bag, no priming the tubes... just a book, prayers, and tucking her in.  SO. NICE.

Oh sweet freedom!  As I type this I'm staring at the massive IV pole hanging beside her bed... I think I'll move that sucker to the garage today.  Forward motion!  Woohoo!!!

mae

PS- Abiella fell asleep at 9:30 last night!!! Woohoo!!!  (She had been falling asleep near 2 in the morning...)  This did mean, however, that she woke up at 4am - but who doesn't want a little Shel Silverstein and double rainbows in your life before sunrise? I'll take it.

Alright friends- how was your weekend??

January 16, 2013

The Weekend

Last weekend was kind of a big deal.

Reason #1- Our good friends Brooke and Ryan got married. I was a bridesmaid and Sean was a best man.  It was a huge honor to be a part of their special day. We love those two so much.

Reason #2- We left Abiella for the weekend at my mom's.  This was the first time since she'd been home that we'd both been away from her overnight... I was a little nervous about how I'd handle being away from her, but over Christmas I spent two days training my mom how to work the feeding pump, give medicines, clean the g-tube site, etc. etc. and she ROCKED it.

Although I was sad to be away from Abi, Sean and I had an absolute blast at the wedding...the bridal party stayed at the same hotel and basically took over 3 floors...we got to spend two full days with the bride and groom... I got to know some very, very cool people... annnndddd to top it off, Abiella had a BLAST at my mom's farm. These are the pics my mom texted me while I was gone:


I mean seriously.
Abi on the farm... it's almost too much.

I wish I had some pics of the wedding but I was having too much fun to remember to take any... The only one I got was this one from the car...


Lame, I know. As soon as other people's pictures surface I'll share them, b/c you really must see how gorgeous the bride was... absolutely STUNNING. The wedding was perfect and the reception was insane.  Sean's brother James and his girlfriend, Meredith, were there, which made the weekend even sweeter. Also, Sean somehow accidentally found himself in a dance-off and rather than saying, "oh... no... I'm not going to do that..." he just went for it.  And won.  Hello moonwalking breakdancer... I didn't see you come in.

Sunday morning we slept in, drove back to the mountain to pick up Abi and then got home Sunday night. The next day Abiella "talked" NON-STOP.  I'm convinced she was telling me all about her weekend at the big log cabin with the lake and the barn and that one really old cat... (Norman's 25 years old... he's kind of a legend.) In fact I'll be blogging about him soon... 25 years of feline domination needs to be documented.

Alright- Happy Wednesday friends... Hope you're having a good week!

mae

December 16, 2012

Abiella is 2!!!! (almost.)

Too many emotions to put into words right now.  The fact that I will be celebrating my daughter's first birthday at HOME tomorrow is almost too much to take in.  It's been a festivities packed weekend... celebrating with family on both Saturday and Sunday... But Monday, is THE DAY. Tomorrow, Sean and I will cheers to Abi, eat cake, help Abi open presents, do all of Abi's favorite things, and bask in the fact that our first child is having her first birthday in our home... together. 

It's a miracle. 


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I never knew if she would be home for this day
- and she is.
So, SO thankful. 

I leave you with bits and pieces from a card Abi got from one of my best friends... it says a lot of what I want to say... but better. 


Happy 2nd Birthday Abiella!!!!!! WE LOVE YOU!!!!


"2 hands that belong to you, and that you are discovering can do so many great things!
2 hour dvd of Beyonce goodness. Enough said.
2 of your best friends right across the street. Harrison and Preston love you!
2 M's and 2 G's that are going to love you like no other. I'm bringing a picture of you for them to see when Josh and I visit in January!
2 times the grandparents to snuggle you whenever you want to cuddle.
2 ears to listen to your daddy's voice singing to you. Front row seat to endless private concerts? Lucky you!
2 legs to kick, kick, KICK! 
2 buttons to push on your mama's phone to call me whenever you want - "Favorites" and "Auntie Megan". Back when I was a kid you had to memorize 7 digits!
2 baby fat cheeks for me to smooch on.
2 times the bravery.
2 times the fight.
2 times the heart.
2 times the everything."

WE LOVE YOU, ABIELLA!! Happy 2nd Birthday!!!



December 13, 2012

'Round these parts...

'Round these parts we're enjoying the Christmas season...

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We're getting ready for Abi's 2nd birthday this Monday!!!! 

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... we're going to OT/PT and in a few minutes we'll go to the eye doctor... Just read the packet and it said to prepare for a 2.5 hour visit... Surely this can't be right. We'll see.

We're having lots of fun...

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We're dealing with the unexpected.

Facebook status from Tuesday:

This morning at Occupational Therapy Abi's G-tube site began to bleed... a lot. The therapist called a paramedic. The paramedic came, changed the gauze and then we drove her straight to the hospital (all while she's giggling to Beyonce) We then rush to the 7th floor surgeon's office and have a nurse look at the site- Consensus: It was scar tissue that can easily bleed...other than irritating the skin around it, the actual tissue isn't painful. So we cauterized the tissue, (which does sting apparently...), threw on some "If you're happy and you know it" and then headed back home. Now it's 12:30 and we're finally finishing our morning coffee. Sean just said, "Well that was a good morning." and I nodded, 'yes.' Annndd we weren't being sarcastic. Funny how quickly things change... 2 months ago that episode would have really stressed me out... now I'm ecstatic. Bleeding scar tissue? Psshh... We'll go on with our day now, thank you very much. We've got songs to sing and Christmas specials to watch...

We're gaining constant support and inspiration from other families in similar situations... (Thank you Audrey and Jenni) AND we're feeling VERY BLESSED this morning because our OT found an amazing chair that we can use for FREE until we order our own.  It doubles as a stroller and a chair for inside the house.  It supports Abi in all the right places, allowing her to sit-up, look around, use her arms, and see the world from an upright perspective. Woohoo!!!! Christmas came early! 


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Hope you're enjoying the holiday season!

Blessings,
Mae

December 3, 2012

Final Verdict

Abiella is doing MUCH, MUCH better.  Thank you so much for your kind words and prayers... They mean so much.

We are back at home.  Final verdict?  A small skin infection near her surgical site AND a stomach virus. The vomiting threw us all off because we were concerned it was related to her new G-Tube.  But x-rays, a cat-scan and a few nights in the hospital later we know the tube is working perfectly and the vomiting was due to a stomach virus.  Praise God!!!!

Now we're back home- taking things slowly...

Enjoying the fresh air... (70's in December? We'll take it.)

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Playing like a champ...

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And watching a LOT of Christmas specials...

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Time to relax... Praise God for healthy bellies, happy hearts, and a few nights of restful sleep.  This week we've got 7 doctor's appointments... (follow-up with the surgeon, more vaccines, yada yada yada) but I don't even care.  A healthy baby makes everything look like a walk in the park. We're happy, healthy, and home and that makes me one very happy mama.

(Thank you again for the prayers!) 

mae mae

November 27, 2012

Surgery-Thanksgiving-And Back in the Hospital...

The surgery.  One of the worst nights of my life.  I don’t even know where to begin.  Bottom line: the surgery went great… but the aftermath was a nightmare.

The day started out promising.  Abi couldn’t eat past 6:30 am, but she was doing fine.  Her surgery was scheduled for 2:30. We got the hospital at 12:30 and by 1:30 we were back in the pre-op area, separated from all the other patients by thin curtains. We waited and waited and waited. The surgery ahead of us ended up taking much longer than expected so Abi was on the pre-op bed for 2 hours longer than expected.  She was VERY hungry at this point, but still kicking and having a good time. 

At 4:30 they finally took her back and the real wait began.  Sidenote: doesn’t matter how easy the surgery is supposed to be, seeing your child look at you with a confused look on her face while being carried away by a bunch of strangers is parental torture.  

At 5:30, they call us in the back, the surgeon meets with us and tells us she did great and I finally begin breathing again.  We go back into the main lobby and wait for the recovery team to come get us.  I call Sean and my dad and tell them the good news and wait….

And wait…

And wait…

Eventually we were the only ones left.

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Finally I see a nurse walk in and speak quietly to the assistant left in the room with us.  She whispers, “McConnell” with a worried look on her face.  My heart sinks.  The assistant points to us and I brace myself.  The woman came over and said, “She’s inconsolable.  We don’t THINK she’s in pain, but we’re not sure.  Is there anything you think might be the problem? Would you like to come hold her and try to calm her down?”  We immediately run to the back and as we’re walking past patients in beds with curtains for walls I hear Abi screaming.  I run up to her. She’s in the hospital bed, face swollen, closed eyes 4 times their normal size, wailing.  I pick her up and start speaking to her.  She calms down a little but continues to cry.  As I hold her, we begin the process of brainstorming:  Pain? = We give more pain meds.  Acid reflux? = We give Acid Reflux medication.  But nothing was helping.  Eventually I ask- “has anyone even seen her eyes open??” Nobody had.  It became obvious-she wasn’t even awake.   I felt the grip on my emotions start to weaken and as I realized something was really wrong I worked hard to hold her and not totally panic.  I’m the person who got her wisdom teeth ripped out of her gums WHILE AWAKE because I refused to be put under… I’m deathly afraid of anesthesia and now, my daughter (to the dismay of all medical professionals) wouldn’t WAKE UP.  BUT it was worse.  It wasn’t that she was just asleep, she was asleep (we think?) and screaming! 

We began considering the possibility of a condition called “emersion delirium” which can cause patients to react strangely when coming out of anesthesia.  The anesthesiologist came and told us she was screaming from the second she woke up… she didn’t know what was wrong but didn’t think it was pain… she left.  No problems solved.  Just gone.  Eventually the nurses came in and said they’d spoken with the doctors and they were going to give her a medicine for pain and emersion delirium- even though they didn’t think that’s what it was.  As the nurse went to give this medicine she discovered that the IV  was kinked.  She said, “Hmm… okay- well maybe it is pain b/c now we don’t know if any of the pain meds actually got to her… Not sure when this kink happened.”  Oh. Dear. Lord.  I could feel my spirit spinning.  As the minutes passed my mom held Abi and she eventually started to calm down.   The new meds seemed to be working… (Or perhaps the original pain meds were finally reaching her? Who knows.) However, despite a break in the screaming, she still hadn't opened her eyes.

I took the opportunity to go to the bathroom, call Sean, and ask him to start calling family and friends.  We needed prayer.  Big time.

I took a few deep breaths and walked back to our curtain.  When I walked in, my mom looked up at me and said, “Mary Susan.  Go get a nurse.” 

“Why?”

“Mary Susan.  Go get a nurse.”   I looked at Abi and I could tell she was fighting for air.  I ran out of the curtains looking for a doctor or a nurse.  I found them and I interrupted their conversation and told them frantically, “I need you NOW!”  They ran with me back to my mother and when they looked at Abi, the nurse said, “Get her on the table!”  She grabbed an oxygen mask and I watched as they tried to help my daughter breathe.  Abi looked like a fish out of water.  Her eyes were still closed but she was gasping for air and clearly not getting any.  The nurse said, “We normally don’t like parents to see this.  Are y’all okay?”  My mom nodded yes and I said, “No. I’m not okay.” And started bawling.  The nurse said, “Go sit in that rocking chair over there.  Go sit. We don’t want you to see this. It can be traumatic for parents.”  So I went.  I sat in the rocking chair and looked up to see a dozen other families, looking at me… Everyone’s curtains were wide open.  I crumpled in the rocking chair and started to bawl.  Before I knew it another nurse handed me a box of tissues, and a cup of apple juice.  She said, “Take all the time you need” and closed the curtain.  I call Sean.  I could barely get my words out.  “Abi can’t breathe.  They put her on the oxygen machine.  They told me to leave.  They can’t get her to wake up.”

Finally I gained the composure to go back.  At this point, the nurse had Abi on her side and she was breathing fine… but still on the machine.  The nurse told me that the last medicine they gave her must have been too much for her little system and it sedated her so much that her airway closed.  She said, the medicine would be wearing off shortly.  The second it wore off we knew it, because Abi started screaming.  Again.  We held her, we talked to her, we played her music.  She would scream and then stop and then start screaming again.  There were no answers.

The nurse told me they were considering taking her to the ICU.  She also told me some people were there to see me, and even though only 2 adults were allowed, they’d let them in if I was okay with it.  I wasn’t expecting anyone but I said, “Sure send them back.” It was my sweet father.  Sean had called him and he and my sister and step mom had rushed over right away.  It meant a lot.

EVENTUALLY-  Abi’s vitals were steady enough that despite the fact she hadn’t woken up yet, the nurses felt comfortable sending us to a room.  On our way out of the area Abi started to barely open her eyes.  I immediately put my face near her ear and began speaking to her.  For the next hour she would open her eyes a little, and then close them again.  She couldn’t keep them open for long.  BUT THEY WERE OPENING!!

For the rest of the night, she would sleep soundly and then suddenly start screaming.  Because of the surgery starting late, she couldn’t get any food for an entire 24 hours. I was certain she was painfully hungry.  Eventually, I climbed up into the crib with her and slept there.  By 8 am she FINALLY looked AWAKE.  She was clearly uncomfortable, but at least she was AWAKE!!!

Despite the anesthesia nightmare, Abi’s tube was working well and she was finally awake, so we were discharged in the late afternoon.  (Thank GOD!) Amazingly enough, this was the weekend my sister Maddie had planned to come meet Miss Abiella.  She had come all the way from Denver and was waiting at the house when we returned.  (Actually she stayed at the house the night we were in the hospital and took care of our dogs, went to the grocery and got fancy creamer (a big treat for me), and prepared the house for a cozy first few days of Miss Abi’s recovery.)  For the next few days Maddie, Abiella, and I recovered at the house, watched TV, went on walks, drank pots upon pots of coffee, and laughed… a lot.


Then Sunday morning Sean returned and we all went to our Framily Thanksgiving across the street that evening. 

A few days after that, James (Sean’s brother) drove up from Georgia and joined us for Thanksgiving...

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5 holiday movies, tons of food, and 2 days later, James hit the road and headed back home.

Today, we’re busy eating leftovers, decorating for Christmas, and helping Abiella venture through teething AND post-op tenderness… quite a double whammy.
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I wrote the above a few days ago but never posted.  Since then Abiella became increasingly sore and generally miserable.  On Sunday night we noticed a hard spot near her incision site. We immediately suspected infection.  We called the nurse and she told us to wait until morning and then go see the surgeon.  That’s what we did.  The surgeon felt the site could be infected, but that it didn’t look bad enough to know for sure. Since the surgeon felt it was no big deal, I told Sean to go ahead and leave town as scheduled for work, and that I’d start Abi on the antibiotics prescribed by the surgeon.  My super mom had also offered to come down and help me.  So by 3 o’clock Sean was on a plane out of town, by 5pm I was giving Abi antibiotics, and I thought things would slow down.  But,  Abi continued to feel worse and worse.  By 8pm she started vomiting. A lot. Her belly looked completely distended and the hard spot had grown substantially. I freaked out, considering she had never vomited before and she seemed SO MISERABLE.  We immediately loaded her up (after I called 911 and asked for an ambulance and then quickly decided against it… new parent syndrome?)  And by 9 o’clock we were in the ER waiting with about 50 other families.  By midnight we were in our own room in the ER and 21 hours and 37 minutes later we’re still here.

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In the wee hours of the morning we got 2 x-rays done, both of which came back normal. They started her on IV antibiotics and by midday today she began throwing up again.  A lot.  BUT after she was done, she immediately went back to her hold self. Finally.  Smiling, kicking, wide awake, looking around, less tender…Now we’re waiting it out…

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We just started small amounts of pedialyte through her tube now... praying it goes well and stays down... 

November 6, 2012

Update

It is 2:10am and I’m wide awake. I’ve become a regular companion of this unfortunate hour the past few weeks. Fall asleep at 11, wake up at 1, back asleep at 1:30, up again at 2:00, asleep again at 5:00, up again when the feeding pump alarm goes off at 5:30…Despite my frequent meetings with insomnia, Abiella (thank God) is typically sleeping 7-9 hours a night.  So why am I up then? Because the feeding tube is driving me crazy, that’s why.

Before we left the hospital, a nurse said to us “Keep a close eye on her at night.  If this tube gets pulled out a little and the food is still pumping through, it can go into her lungs and cause her to choke.” Hmm… is that so? Well then, I guess I won’t be getting any sleep EVER until this tube is history. Every single cough, sneeze, movement, grunt, or snort has me hopping out of bed, standing by the crib, listening for breathing, making sure the tube is still in the right place and double checking that all is well. Is this overkill? Maybe. But can I do it differently? No.

So- tonight- (this morning?) for the umpteenth morning in a row- I woke up from a noise I can’t even recall and now I’m lying awake, dogs at my feet, listening to Abi snore three feet to my left and Sara (the pup) snore three feet below me.

Am I happy? Yes.  Very. Am I tired? Uh-huh.

BUT these maddening battles with sleep are only a portion of our world.  In 2 hours I will disconnect Abi from the pole hanging above her bed, carry her on my chest to the kitchen, hit BREW on the coffee pot, and hang out with my favorite gal beside the fire…reading books, playing games, and singing songs. 

Life is good.  Very, very good…

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You know what else makes life good?  The fact that my other mama (Sean’s mom) came to visit this weekend!!! Woohoo…. 

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Meeting Abiella for the first time.
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Too beautiful.

mae mae

October 30, 2012

Feeding Tubes, Bonding, and Being Home

First: Before I get into today's post... We're thinking and praying for those affected by Sandy.  I was up all night watching the story unfold and the pictures of babies being evacuated from the hospital (due to power outage) absolutely broke me.  Having just been in the hospital with my baby for 8 days, I can't imagine the scene inside that dark hospital and the weight and worry of every family member involved in that situation.  Thankful for the spirit and bravery of those assisting during this disaster. As more and more devastating reports surface, we are praying for those who have lost so much... 

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Now... onto the regularly scheduled programming...

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Oh blog, how I have missed thee. I’ve been busy being many things… a new mom, an even newer nurse, and a really, really tired gal.

First, life here has been amazing.  Abiella is bonding with us really quickly (it seems) and she LOVES being home. It’s like she just KNEW this was her home… as soon as we put her in her crib again she just kicked and smiled.  

But before I talk about life at home, here are some pics from the hospital I never shared:

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Abi is officially obsessed with Sean playing the guitar.  (I can relate.)  Anytime she's really upset, I'll yell to Sean, "Go get the guitar."  9 times out of 10 she calms down immediately. 

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This was Abi's favorite part of the day. She loved watching the sun come in through the blinds each morning. 

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Abi's FIRST vegetable in America :) Hello, Sweet Potatoes; Abi's a big fan.

Finally, after 8 days in the hospital, we were sent home! 
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Soooo now we’re now doing a full healthcare routine at home…  What does that look like?  Well for now, it looks like a big feeding tube hanging from an IV pole above Abi’s crib. 

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We hook her into that sucker 3 times a day (and during the night) and pump necessary nutrients into her body.  When she’s not hooked up to the pump, I feed her by mouth 3 times a day too.  It’s fair to say that our entire day is scheduled around getting food into Miss Abiella’s belly… and I’m MORE THAN FINE with that.  I’ve wanted to get this baby healthy and fat since I held her for the first time 11 months ago.  THIS is a blessing…

HOWEVER, this new health care routine comes with a few unfortunate side effects, including the fact that this tube can come out by accident (and did Saturday morning) and we have to replace it (through her nose, down her throat, and into her stomach)... by ourselves. Oh my.

Thankfully we received great training at the hospital and have a nurse and doctor on-call should we need anything... 

Despite the fact that I can not WAIT until this tube is in the history books, we are THANKFUL for the tube because it is HELPING our daughter.  However, we have a doctor’s visit in 2 weeks to discuss the future of “The Tube" and my hope is that the tube's future doesn't exist. 

For now, I'm going to go have another cupcake (thank you Sara!), finish my iced coffee, and make Abiella a snack.  Peas, don't fail me now. This chick's not exactly a huge fun of green veggies... but I can relate... no garlic, no salt, no cheese?? No thank you. 

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But before I sign off for today, let me thank you from the bottom of my heart for all of your prayers, encouraging comments, and sweet emails.  I have read them over and over again during the challenging moments. They've meant so much. 

Blessings, 
mae 

October 21, 2012

Day 6

Today, I stepped outside the hospital doors for the first time (since brining Abi to her pediatrician’s appointment 6 days ago. ) For days, Sean has been saying, “You have to get out.  For your sanity, go walk outside!” But I never did… until today. This morning, I woke up with Abi at about 4:45am, by 6 am, we had met with the doctor, by 7am I was showered and feeding Abi breakfast, and at 7:15 I said, “Okay.  I’m ready. How about I go to Target?”  So Sean, cheered me on, I grabbed my wallet, kissed my baby, and headed out the door. I took my first breath of fresh air in 6 days at 8:30 am.  It was colder than I expected.  Woohoo, Fall is upon us!

Target was good and when I returned, all was well and I was glad I had gone… however… I got a taste of freedom and now I CRAVE it.  I want to leave again… but WITH ABI! (Although we remain SO THANKFUL for the assistance and health care we are receiving… we are ready to live life without 18 cables attached to our baby, the incessant beeping of a heart monitor, and the constant intake of people looking at (scaring) Miss Abiella.

But before, we leave (hopefully on Tuesday) I must share with you a few random miracles that have happened (among many) since we’ve been here. 

First- one of our nurses came in and said, “I had to come meet you.  I lived in Ghana for 2 years!”  Huh?!?  Really?!? Turned out, at the age of 16 she moved to Ghana as an exchange student, lived in a home without running water, went to public high school there, and fell so in love with the culture that she stayed an extra year.  Throughout our stay here, she has come in to our room periodically and we’ve shared stories of our beloved daughter’s birth place.  So amazing.

Second- One of our night nurse’s whom we love so much noticed we were awake in the middle of the night and leaned over to us and with a shaky voice said, “There’s such a difference in this baby already.  I’m weeping. What a miracle!”  So reassuring to see that someone else saw such a difference too!

Lastly, (are you ready for this?)  We had a different nurse come in yesterday and from the second I met her I loved her.  She was kind, fun, hilarious, and around my age.  I noticed right off the bat she was exceptionally good with Abiella.  Near the end of her shift, she came in and said, “Is Abi going to be going home with the feeding tube?”  I said, “Yes, I believe so.”  She replied, “Would you like me to start teaching you how to use it?” I quickly agreed and she told me she’d come in that evening and show me a few of the basics. So an hour or so later, she returned and as I watched what she was doing, she looked up at us and said, “I adopted a child with special needs who had to go home on a feeding tube…so I know how you’re feeling. It’ll get easier.”  Oh my gosh.  My jaw hit the floor. 

“What?!?  You did?"  She proceeded to tell me a story that was similar to ours… (adoption first, biological kids later…etc. etc.) Main difference? They adopted 3 siblings at once!  The child with special needs was suffering from seizures, vomiting, lack of mobility, and considered blind and deaf.  As she told me her story I felt as if God had sent me an angel straight into my room.  She looked over at Abi and said, “She’ll do great.  You have no idea. We were told our son would only be able to suck his thumb.  Two years later (age 4) he can roll over, see, hear, say Mama, laugh, his seizures are gone and his vomiting has ceased.”  Her attitude, her light, her joy, and her knowledge were such gifts.  She had been in our shoes… I told her, “You’re an angel! I just told Sean how we needed to meet some parents in our same position… (adopting a child with special needs) and little did I know God had already sent me someone. The very woman treating our precious daughter all day!”  Unbelievable.  She told me she wasn’t even supposed to take that shift and that she had never even worked on our floor.  Unbelievable!!!  She’s our nurse again today and I’m learning so much, gaining so much strength from her unbelievable outlook, and basking in the joy of sharing a similar experience.  Do we know if our children will ever communicate fully? No. Do we know if our children will ever walk? No. But we cheer at the victories we see.  The way she put it, “Everyone says, ‘You’re crazy. What if he can’t do this? Or he can’t do that?' And I always see the opposite, Look at what HE CAN DO! Look at what we didn’t know was possible… becoming possible!”  Such a light.  Such a gift. And such a needed blessing when our spirits were tired, jet lag was rumbling, and hospital air was stiff and stifling. What a reminder that God loves US.  Not just Abi.  But US.  When we needed a boost, he sent one before we even knew how to ask. 

Blessings :)
source
mae mae

October 19, 2012

Why We’re Still in the Hospital…

Malnutrition is no joke. It affects every function of your body and serious malnutrition can rock your world when you try to correct it. That’s why we’re still in the hospital.

Abiella came home weighing 15 pounds. She is almost 2 years old. For the majority of her life she ate (best we can guess) a no-calorie, “porridge” type filler, that was probably void of any nutritional value. She probably received 2 or 3 feedings a day with perhaps no liquids (other than what was in her porridge.) Because of this, she is at a high risk for what’s called, “Refeeding Syndrome.”

Refeeding Syndrome is when a body is SO malnourished that consuming nutritional substances can cause a number of serious complications, including cardiac failure. You can read why here. This phenomenon is commonly seen in starving children, those recovering from anorexia, etc.

This means it is not safe for us to begin feeding Abiella a balanced diet until we’ve maintained a successful transition under strict supervision in a hospital. What does this transition look like? Well, it means feeding her nutritional formula through a feeding tube that runs day and night, and letting me feed her two small portions of rice cereal a day by mouth. In the meantime, blood is drawn every 8 hours to look at her electrolytes, potassium, magnesium, etc…. These labs tell us how her body is reacting to the new diet and if the “refeeding syndrome” is showing its head. Depending on each lab result, doctors either increase the amount of food she can receive (via tube) each day and/or supplement her with additional vitamins. They also have her hooked up to a million electrodes to monitor her heart and observe how it is handling the new diet. It’s a lot of mumbo jumbo that I could continue to talk about, but the bottom line is it has been hard.


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Abi is a real trooper but MY GOSSSHHHH. Adoption studies show to try not to leave your home for 2 weeks and to not take your new child to places with major stimulus (malls, grocery stores, etc.) for months! Now, 2 days after landing in America, baby girl is getting poked and prodded by a bunch of white people, woken up every 4 hours to have a cold thermometer stuck under her armpit, and gone through a series (as in 9) tests sending her through x-ray machines, radiation, etc., etc. ,etc. Since I walked in this building Monday morning for Abiella’s first doctor’s visit, (Our pediatrician’s office is in the hospital) I have not walked back outside…

To say Abiella's had a few hard days is an understatement. She’s bruised, and sore, and working hard to maintain her spirits. However, despite some major blows, she's still finding some time to be happy...

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…which is saying a lot… Over the past few days, she’s blown through 4 IV’s b/c her tiny veins can’t take it and now they’re just pricking her every time they need blood (and sometimes THAT doesn't even draw blood…and they have to do it again) Someone literally mentioned to me today about the idea of putting an IV in her scalp… Um yeah- you’ve got to be kidding me.

BUT Abi’s marching forward. Luckily we have had an incredible team of doctors and nurses and PT and OT come in each day and give her baby massages which she seems to adore… and today, despite the 15 chords attached to her body (feeding tube, IV, and 10 electrodes) we managed to get her in our laps and hold her… all day.

She responded quickly and loved the affection… which is a blessing.

…So if you think about it, pray for our little one. Her first week in America is turning out to be quite a challenge…

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However, we remain exceptionally grateful that we're here in America together, getting her the health care she needs.

Let's just hope we can get healthy and back home quickly :) 

Signing off from the children's hospital...
mama mae mae