Saturday, August 30, 2008
Better a meal of vegetables where there is love
than a fattened calf with hatred.
- Proverbs 15:17
All a man's ways seem innocent to him,
but motives are weighed by the LORD.
- Proverbs 16:2
Better a patient man than a warrior,
a man who controls his temper than one who takes a city.
- Proverbs 16:32
Better a dry crust with peace and quiet
than a house full of feasting, with strife.
- Proverbs 17:1
A rebuke impresses a man of discernment
more than a hundred lashes a fool.
- Proverbs 17:10
Better to meet a bear robbed of her cubs
than a fool in his folly.
- Proverbs 17:12
Even a fool is thought wise if he keeps silent,
and discerning if he holds his tongue.
- Proverbs 17:28
Friday, August 29, 2008
According to the Huffington Post, "the American Kennel Club® (AKC) announced today that the public has elected a Poodle as their breed of choice for the Obama family.
I can't believe they voted for a poodle when they could have had a North-American, Droop-eared, Brown-spotted Beezer!
Hang in there, Buckley - there is always 2012 . . .
We are currently seeing the PS once a week until the last portion of Annabelle's incision on her back is healed.
To make a long story short, there is a portion of the incision directly above the curvature of the spine that is about the size of a quarter which is predictably having trouble healing.
The PS sent us home yesterday with instructions to change out the bandage every other day. It is really hard to prevent any pressure to this spot on Annie's back since it sticks out prominently. The best thing for Annabelle's back would be if she slept on her stomach without any coverings. But of course, newborns have trouble sleeping if they are left unswaddled and sleeping on their stomach is cited as one of the main causes of SIDS.
So we are trying to keep her lying on her side most of the time.
Next Wednesday, a home health nurse will be coming out to the house to check on us. Thursday is our next PS appointment followed by Pediatrics on Friday.
The doctors appointments are starting to spread out a little and we are grateful for that. We just need to get the incision on her back healed so that we can move forward with orthopedics on casting her legs and straightening her feet!
When words are many, sin is not absent,
but he who holds his tongue is wise.
- Proverbs 19:19
A man who lacks judgment derides his neighbor,
but a man of understanding holds his tongue.
- Proverbs 11:2
A kindhearted woman gains respect,
but ruthless men gain only wealth.
- Proverbs 11:16
Thursday, August 28, 2008
One day my mother was out and my dad was in charge of me.
I was maybe 2 1/2 years old and had just recovered from an accident. Someone had given me a little 'tea set' as a get-well gift and it was one of my favorite toys.
Daddy was in the living room engrossed in the evening news when I brought Daddy a little cup of 'tea', which was just water. After several cups of tea and lots of praise for such yummy tea, my Mom came home.
My Dad made her wait in the living room to watch me bring him a cup of tea, because it was 'just the cutest thing!'
My Mom waited, and sure enough, here I come down the hall with a cup of tea for Daddy and she watches him drink it up.
Then she says, (as only a mother would know... :)'Did it ever occur to you that the only place she can reach to get water is the toilet?
Another thing I have discovered is what a help it is to have friends with you at the hospital.
During our 11 days at the NICU, the wife and I were almost constantly in the company of friends and family who came to bring meals, to visit Annabelle or just to sit with us in the waiting room. I cannot tell you what a comfort it was.
Hospitals are mysterious places. They are full of people who know things about you that you don't know about yourself and every nook and cranny seems to be stuffed with instruments and machines that do stuff to you never knew you needed done.
Sitting there in the waiting room, surrounded that which you do not understand and looking ahead to that which you cannot fully predict, it is nice to be sitting next to a friend. Someone who doesn't have to be there - but someone who wants to be there.
And, speaking for myself, the last thing I wanted was a cheerleader telling me to "look on the bright side" - instead, our friends quietly and consistently gathered around us, celebrating the victories, acknowledging the challenges and praying us through to each and every tomorrow.
So chalk that up as another lesson learned.
Meals really do matter.
Prayer quilts really do matter.
Choosing to be with those in the hospital who have no choice but to be there - really does matter.
Wednesday, August 27, 2008
This is a serious design flaw and all dawg owners should be on the alert to avoid toys with a similar design.
I received the following response from my e-mail to Four Paws:
Thank you very much for your email message. Like you, Four Paws is deeply concerned about reports of injuries suffered by some dogs as a result of a manufacturing defect in some of our Pimple Ball toys.
We want you to know that we have stopped shipping these toys to our distributors and we have asked them to have retailers immediately remove the toys from their shelves and return them at our expense.
We have also stopped all shipments of the toys from the manufacturer, and we are sending Executive Vice President Barry Askin to personally inspect the manufacturer's facility in order to make sure that the defect has been corrected. The ball was designed with two holes to eliminate risk of suction. Unfortunately, in the production of some balls, the smaller second hole became blocked on the inside, thus making it hard to detect the defect with the naked eye.
As a result, in addition to repairing the toy molds, we are also changing the packaging of the Pimple Balls. The packaging change will result in a tie that must clear both holes, thus insuring there are always two clear holes in the toy.
If you purchased a Four Paws Pimple Ball with Bell toy, please immediately take the toy away from your pet. Instructions to return the toy are posted on our website www.fourpaws.com.
Thank you again for your message and your concern. Please be assured that the safety and well being of pets is our top priority and we are doing everything we can to make sure that this problem is solved as quickly as possible.
Four Paws Products Ltd.
About those leg casts to help straighten Annabelle's feet.......this is just a note to let you know Mark and Scott both had a series of leg casts as little ones......to straighten their feet. They learned to walk in them......stumping around like little dictators!!!! My hips were bruised from the casts clunking against them when I picked them up......and I had to turn them in their sleep. But.....................they have straight feet.....can run like the wind....and I have never been able to keep up. Scott, when he was about 10, had bilateral leg casts when his knee joints were wearing out from being the little league catcher. He won a sympathy vote and was elected class president that year from his wheelchair. Of course, he made very good use of his popularity and had Mark and his friends rig up a sling so they could hoist him up to the tree house.
All of that to say......honey bunches.....the story is just beginning.....many adventures to come that will give you the giggles as well as concern. One of the things I can giggle at NOW, is Mark assuring me he could get Scott home from school in his wheelchair......I didn't have to come and get them. Wellllllllllllllllllllll.......I was standing out in the front yard watching them at the bottom of our hill......Mark standing on the little foot rests on the back of Scott's wheelchair.....coming down the hill like a streak of lightning and finally resting on the front lawn in front of me. My heart stopped still, I didn't breathe.....then just went in the house and hyperventilated without saying a word. Next day.....I resumed my after school hike up the hill to get them home safely. Kids are resilient....not as fragile as we think.....sometimes much stronger than we are when we can just watch. They come with their own journey...they are just on loan to us for a little guidance along the way.
One of my main concerns has been the stability / fragility of Annabelle’s spine and I have consequently been asking every doctor from every discipline for their opinion on the matter. All of them have been very reassuring but of course, it is the Ortho folks who specialize in this sort of thing.
I spoke with the surgeons who worked on Annabelle on 8/8 and they assured me that her spine is structurally fine and that there is not any fragility to be concerned with.
One of the interesting things the surgeon pointed out was concerning the lump of deformed spine on Annabelle’s back. He explained that he was hoping that the area of the spine that is sticking out in a lump (the area he worked on) would fuse into one piece of bone which would hopefully arrest it’s growth.
The idea is similar to what I pointed out yesterday concerning the shunt-lump on Annabelle’s head. The bump on Annabelle’s back is about 2 ½ inches long – which seems enormous on a body her size. But if that bump does not expand further due to the surgery, it will become less and less of a factor as the rest of Annabelle’s body grows.
After our appointment, he sent us to Radiology so that they could get a baseline image of the bump on the spine which they will use to track any growth or lack thereof.
Of course the other big question for the Orthopedic folks is Annabelle’s feet and legs. The Ortho doc said she wants to put therapeutic casts on Bella’s legs to straighten out her feet but that she can’t do that until Annabelle can lay comfortably on her back indefinitely. The plan is to get the casts on as early as a month from now but no later that February of next year.
The doc also said that we should expect to see more and more movement in Annie Lu’s legs and feet as time goes by – which of course we are continuing to hope and pray for.
While we are excited about getting Annie’s feet and legs straightened out (literally), the image of my baby girl laying in her bassinet with casts on both legs is not something I am particularly looking forward to (not to mention the empathetic stares of strangers when we are out and about). There seems to be no avoiding it though so we better just figure out how to slap a smile on our faces and deal with it.
One thing that was new information was a concern regarding her hips. The Ortho was not sure whether or not Annabelle’s hips are dislocated.
I know what you are thinking, “What now?!”
The doc assured us that if her hips are dislocated, it would not be causing her any discomfort and that now was not the time to correct them if they are, in fact, dislocated. The doc ordered an ultrasound to check out Annabelle’s hips as well.
So that is the Ortho update:
- Spine is strong and stable
- Hopefully the bump on her spine will become less and less of a factor
- We need to cast Annabelle’s legs as soon as she can lay on her back
- We may have to correct her hips as well.
Our next Ortho appointment is Monday, September 22nd.
Next up? Back to plastic Surgery tomorrow to have her back checked on.
Tuesday, August 26, 2008
Buckley has pretty much been guarding the bedroom all day long. He was sleeping on his bed, and then moved over to my side later in the day. Sean came over to the bedroom and Buckley growled at him, just a little until he realized who it was. Awesome.
Sounds like Annabelle has her big "brother" tied around her little finger . . .
Photos of teeth-barring-protective-goodness to follow . . . .
Life is good.
Life with a big Dawg is better . . .
The wife and I had to laugh when we opened a package that came in the mail the other day which contained, amongst other things, a miniature set of boxing gloves.
They are the perfect compliment to our little champ's nursery door . . .
Okay, I can't resist . . . .
Trying hard now, its so hard now, trying hard now..
Getting strong now, wont be long now, getting strong now..
Gonna fly now, flying high now, gonna fly, fly, fly.
The wife agreed to sit down and I agreed to help hold Annabelle's head still while the nurse pulled the stitches out. I had a front-row seat to a few minutes of unpleasantness. Afterward, little Annie fell asleep (probably from the trauma of it all) and we three adults congratulated each other on not falling apart.
Annie Lu still has the gauze bandage on her stomach where they inserted the shunt into her abdomen but the nurse expected that to come off on its own in the next two weeks.
The sight of the scar on Annie's head is a little tough to deal with but a couple thoughts help:
1) The visible bump on Bella's head where the shunt is placed is about 1 1/2 inches long. While this seems HUGE on her little noggin right now, her head will grow in size while the shunt will not - making it less and less noticeable
2) Annabelle's hair will eventually grow over the spot and no one will know it is there
Although it sounds strange, neurology's part in this drama is largely done. We will go back in January for a head CT and a series of x-rays to check out the shunt system.
Other than that, neurology will not play much of a role for the next year or so unless we see signs of shunt malfunction or developmental issues.
The nurse explained that if there is going to be a problem with the shunt, it will most likely occur sooner rather than later - the longer the shunt is in without incident, the less likely it is that Annabelle will ever develop a problem with it.
Things we are supposed to watch for that may indicate complications with the shunt or the Chiari 2 malformation:
- Swelling around the shunt, head or abdomen
-- Fever over 101.5
- Loss of appetite
So there it is. Annabelle is bright and alert, recognizes voices and tracks sound with the movement of her eyes. With the exception of the shunt, the surgery on her back and the absence of movement (so far) in her legs, she seems to be a perfect little girl and we are continuing to count our blessings.
Thank you for your continued prayers and support!
The king went to Gibeon to offer sacrifices, for that was the most important high place, and Solomon offered a thousand burnt offerings on that altar. At Gibeon the LORD appeared to Solomon during the night in a dream, and God said, "Ask for whatever you want me to give you."
Solomon answered, "You have shown great kindness to your servant, my father David, because he was faithful to you and righteous and upright in heart. You have continued this great kindness to him and have given him a son to sit on his throne this very day.
"Now, O LORD my God, you have made your servant king in place of my father David. But I am only a little child and do not know how to carry out my duties. Your servant is here among the people you have chosen, a great people, too numerous to count or number. So give your servant a discerning heart to govern your people and to distinguish between right and wrong. For who is able to govern this great people of yours?"
The Lord was pleased that Solomon had asked for this. So God said to him, "Since you have asked for this and not for long life or wealth for yourself, nor have asked for the death of your enemies but for discernment in administering justice, I will do what you have asked. I will give you a wise and discerning heart, so that there will never have been anyone like you, nor will there ever be. Moreover, I will give you what you have not asked for—both riches and honor—so that in your lifetime you will have no equal among kings. And if you walk in my ways and obey my statutes and commands as David your father did, I will give you a long life." Then Solomon awoke—and he realized it had been a dream.
- 1 Kings 3:4-15
Points of Interest:
- Psalm 119 is the longest Psalm in the Bible
- 1 Kings 4:20-34 gives us a glimpse of King Solomon's wealth and wisdom - hence the term, "The wisdom of Solomon"
Monday, August 25, 2008
Contributions can be made at Annabelle's Circle. The fund is in Annabelle's name and is actually administered by good friends of ours.
Thank you, once again, for all your continued support and especially for your continued prayers - they mean more than you know.
Other than being just an all-around sensible, knowledgeable and compassionate care giver, he mentioned a couple of things that really made an impression regarding Annabelle. His point was that it is very important that we not view Annabelle as this bundle of health issues in the form of an infant but that we view her as a normal healthy child who has a couple of things that need caring for.
To quote the good doc: "Despite the obvious, what you have here in Annabelle is a brand-new car that you are driving off the lot. If you give it the gas, this car is going to go!"
Another thing he mentioned is that we want to watch Annie for an elevated temperature because that could indicate infections associated with her surgeries.
I told him that we were regularly tracking her temperature and, somewhat to my surprise, he said "Stop".
He explained that we need to accept her as a normal child and start acting like normal parents. If she is fussy, turn her over on her other side. If that doesn't work, check her diaper. If that doesn't work, feed her. If that doesn't work, rock her . . . and so on. In other words, once we have exhausted all the normal things that bring comfort to a newborn, only then should we be taking her temperature - just as typical parents of a typical newborn would.
This really was a new revelation for us and I, for one, could feel the weight lift ever-so-slightly.
What a great feeling to have full confidence in your Pediatrician! For the time being, he wants to see us on a weekly basis to monitor weight etc.
Next up? Neurology at 10:45am today followed by Orthopedics at 1pm!
My goodness . . .
They can't foreclose or repossess babies, can they? . . . .
Friday, August 22, 2008
Happy Anniversary to you!! Wow, is it 16? Is that right?
Man, was it really SIX years ago that we attended your 10th party in HB? No, that can't be possible.
Oh, how life is different now, eh? Wonderfully, beautifully, and probably a tad still overwhelmingly different. But oh so good.
Here's to an amazing 17th year for you three!
Please (gently) squeeze that little muffin, yourselves and Buckley for me.
Much love to you all.
In all the hub-bub I had forgotten . . .
"Uh, I'm, uh . . . going to go pull the car around, a nurse will walk you and Annabelle out. I will see you out front."
My wife returned my deer-in-the-headlights look . . . "Okay" she said.
Holly sat in the back seat with Annie and the mother-in-law road in the front seat. I had Annie's "Pray 'til Labor Day" cd in the stereo and no one said a word the whole way home - the only dry eyes in the car were Annabelle's.
The first night home was predictably hard. Tuesday was easier and Wednesday night was easier still. Remember all that talk last week about how Annie Lu is so strong and so obstinate and how all that was a good thing being that she was going through all that her first two weeks of life entailed? heh.
Well our little strong-willed miracle child spent all night shrieking last night. Oi.
I have no idea what the trouble was - we fed her, we changed her, we swaddled her, we turned on the vibrate gizmo on the bassinet - she didn't seem to be in pain or discomfort - and yet, wail she did.
Every time we would pick her up she would quiet right down. Lay her in the bassinet and the crying would begin again. At one point, the wife and I were so tired that we were afraid to hold her just from an exhaustion / safety standpoint. But we all got through it and both the girls were sleeping away when I left for the office this morning.
Such is parenthood, I suppose.
As I mentioned before, we have 6 family members staying with us right now and it has been a godsend. They have handled all the cooking, cleaning, laundry and even acted as chauffeurs to doctors appointments. I don't know how we would have made it through the past two weeks without them.
So the seemingly endless round of doctor visits has begun. First up? Urology!
When the order came from the Urologist to the NICU that Annabelle was to be catheterized every 4 hours, even the nurses were disheartened. They didn't say so - but you could see it in their mannerisms. On top of it all, the Urologist wanted the wife and I to do the cathing.
After one particularly frustrating attempt, I exclaimed, "This is crazy! How are we supposed to do this every four hours?"
(For those of you who have never had the great joy of cathing a newborn baby girl, try threading a needle underwater in the dark for starters)
Shortly after, the order was revised to every 8 hours instead of every 4. Hmmmm . . . That's odd . . . since when does a doctor alter their orders based on an exasperated parent?
Even at 8 hour intervals, the nurses seemed dubious about it's necessity.
To make a long story short, we met with the Urologist on Wednesday and she explained that cathing was not an immediate medical necessity but that in 3-4 years we may need to cath Annie so she thought it would be best if the wife, child and I get used to it now . . . . 3 times a day . . . for the next 3-4 years . . . . just in case it became necessary . . . .
As we stood in the hallway waiting for the elevator, the wife remarked, "I know what you are thinking"
"Oh yeah?", I said through clenched teeth as I held little Annie Lu to my chest . . . "What am I thinking?"
"You're thinking that we are never going back to that doctor again."
"You got that right", I replied. "Our daughter is 9 days old - she has had surgery on her spine and a tube inserted in her brain - we don't need to be 'practicing' cathing her on top of it all right now!"
So we agreed that we would see another Urologist for a second opinion. I took great joy in throwing out all the cathing supplies when we got home.
Next up? Plastic Surgery!
We saw the plastic surgeon yesterday to take a look at Annie Lu's back. the stitches are about 3/4 healed. There is one trouble spot that is taking longer so we will be going back to the PS every week until it is fully healed.
One piece of good news is that, from a structural standpoint, Annie is basically fine. She won't be playing any contact sports but we don't have to worry about her spine every time we drive over a speed bump either. The concern regarding her back is all tissue-related at this point.
The PS did say that Annie will one day be in a normal car seat / stroller etc provided we contour the padding to accommodate the little bump in her lower back.
We tentatively have an appointment with the Pediatrician today and neurology and orthopedics on Monday.
So that is the roundup. Again, I am sorry for not keeping up-to-date as much this past week (having the Internet down at my house isn't helping right now either).
Little Annie is just such a joy. As tough as it is at times, it is a wondrous feeling to go to the bedside of your crying little girl in the middle of the night, pick her up and have her immediately stop crying and snuggle contentedly into your chest as you pace the darkened house.
Thank you for your continued prayer and support - it means more than you know . . .
Hi Matt and Holly,
I am so elated to see that little Annabelle is doing well. I understand that the first few nights were pretty hectic. I don’t know if other parents have share that fact that this is very normal with newborns so hang in there, it should get better.
I was watching the Olympics tonight and Johnson&Johnson had a short ad about heavyweight Deontay Wilde. He is a boxer for in the Olympics. In this clip, he said that he had a daughter that was born with spina bifida and that if you could see her now, you would never know that she was born with spina bifida. So I immediately got on the internet and found some interesting pages.
On the Olympics bio, one of the paragraph goes:
A motivating force behind your jobs was your 3-year-old daughter, Naieya, who was born with spina bifida. How is she doing now?
Most kids with spina bifida are paralyzed from the waist down and a majority of them are in a wheelchair. But for her case I always tell people, "God has something for you to support you." And you can never tell that she has it. She has braces on her legs because she just had an operation on her legs but that's the only thing people ask me about. She's standing up well by herself and even taking multiple steps. I give her a couple more months and she'll have everything by herself. You look at my little girl now and you can never tell. She's the smartest little girl in the world, it's amazing. It makes me proud to say I'm a parent. She's the most beautiful thing in the world.
(read the two paragraphs after this on the website and if you look at the pictures on this web page, the 14th picture is his little girl.)
Other websites about him and his daughter
One of the paragraphs towards the bottom:
“But there are more important things to worry about now. His little girl, Naieya, is 2 and after many surgeries she can move around and play and do almost all the things the doctors said she never would. Deontay is not surprised. "I feel she's got a part of me," he said.”
Another Article Here
Shortly after she was born, she underwent a series of surgeries at Children’s Hospital in Birmingham for treatment of spina bifida, a congenital condition of the spinal cord.
She attends the University of Alabama RISE program for children with hearing, sight and motor skill impairments. Wilder said she has begun to walk and talk, despite the doctor’s early prognosis.
Some other stories about the man Here
Thursday, August 21, 2008
Home Depot is to Home Ownership as ____________ is to Parenthood.
If you said "Beverages and More" - shame on you. It's Babies R Us of course!
I apologize for sort of dropping off the face of the earth the past couple of days. Here is a very brief update on Annabelle and family:
- Baby: Doing Great
- Mom: Tired but happy
- Dad: Busy but happy
- Home: 8 adults and one baby in a three-bedroom 1 bath house (people are actually sleeping on the deck in the backyard)
Monday night was rough -the three of us were up all night trying to get on some sort of a schedule.
Tuesday night was much better and Wednesday night was better still.
Went to the Urologist (who is part of the Dr. Doom camp) yesterday but all is well that ends well - more info to follow.
We have an appointment with the Plastic Surgeons today to look at Annabelle's back.
That's the sketch version - more details to follow. Thank you for your continued prayers and support!
And now I have to get some work done before it's time to head to the Dr. . . .
Monday, August 18, 2008
I can't believe it.
Thursday, August 7th:
Saturday, August 9th:
While I was there, a discharge nurse called the bedside to speak with me and she started rattling off info:
- Catheter supplies are being shipped to our house
- 8/20 - Dr appt with Urology
- 8/21 - Dr. appt with Plastic Surgery
- 8/25 - Dr appt with Neurology
- 9/4 - Dr appt with Orthopedics
- Near future - Two home visits from different nurses
- TBD - Dr. appt with Spina Bifida Clinic
- TBD - Dr appt with Pediatrician
She assured me she would provide all this info and more in writing in a discharge packet (which I will add to the growing stack of urgently-needed-to-be-read packets I have received over the past 11 days).
So that is the status.
After my visit with Annabelly, the wife and I sat in the waiting room and watched a video on infant CPR that the nurses wanted us to watch. I am now back at the office trying to busy myself and hoping for THE CALL.
BTW today is the day we were originally scheduled for the C-section.
There is a certain poetry there . . .
We were all up most of the night for a variety of reasons.
I think the wife and I have all the basic concepts down now - it's just a matter of getting into the routine - which is pretty much going to be impossible for us until we get everyone home for a couple of days.
And the whole cathing thing can be extremely difficult at times. The wife has done it successfully once so far and I have done it twice - we have both given up in exasperation at least once and had the nursing staff take over. We know it is going to get easier with time but right now it is a pretty harrowing experience to go through three times a day.
So here is our current status:
Sleep deprived. Tired of being at the hospital. Hoping that we can all go home today.
I have a mountain of phone calls to make today regarding insurance and SSI and CCS and all manner of programs and organizations with various acronyms that all spell out C-A-N Y-O-U H-E-L-P U-S? Not to mention putting in a full day at the office.
The crew from Annabelle's Circle has been at the house all weekend and we are eager to get home and see what they have accomplished. How do you thank people for such sacrifice? We are just so grateful.
We also have a house full of family sleeping in every bed and spare patch of floor space. We are so thankful to have supportive and helpful family around us at a time like this.
Today is totally up in the air. We generally believe that Annie is going home later today though we don't know what hoops they want mom and dad to jump through to make that happen. I fully expect to be called away from the office at any moment today to meet with Doctors and case workers to go over some nitty gritty before they are willing to let us cut the final wristbands off and walk out into the fresh air of freedom.
"Little Annie, believe me, it does get better. The whole world does not consist of the NICU where people poke and prod you at all hours. There is this restful and safe place called home and an unimaginably big and wonderful place called outside that you will love and spend the rest of your life exploring!"
Thank you for your continued prayers and support. We will keep you posted! :-)
. . . I have been keeping up with Annabelle's progress and she sounds like the strongest baby girl I have ever seen! She really can't wait to go home with her mom and dad...and met her dawg :)
For some words of encouragement, my best friend . . . babysat for a family . . . and one of the girls has Spina Bifida. Her name is also Annie. Annie is now 7 and the strongest, active, and most entertaining little girl [my friend] knows. She is extremely mature for her age and very social. Annie is learning to catheter herself and she has also never had a bladder infection- which is amazing. Annie keeps up with her siblings and if you ask her- there isn't a thing wrong with her. She went skiing this past winter and just did a recital for bible school, a mock of American Idol, with her sister. Annie's mom . . . will tell you that like yourselves, her strong faith in God is what has gotten them thru tough, scary, difficult times. Faith has brought them miracles as well. . . .
Thank you so much - that really helps!
Your dog is hilarious. We have realized that his mental health is as dependant on his routines as his master.
Buckley seemed to have a lot of fun frolicking with Jessie yesterday. Lots of doggie wrestling, running around the backyard, sniffing, and tail wagging. But somewhere between 8 & 8:30pm we heard one very large thud from one very large paw on the screen door. Buckley was ready to come inside. This time I let him.
The more I am aware of his anxieties the more I realize how much he needs his routine, and also that he may be scared of the dark.
So, much to the kids and the dogs delight, we brought Buckley (and his bed) inside. More happy frolicking, sniffing, and tail wagging, but all with good inside doggie manners. Then they both laid down on their beds to rest with us in the living room.
Somewhere between 9:30 and 10 Buckley got up and paced around the living room a couple of times and then walked from the living room to our bedroom a couple of times. (He is doing much better about braving our floors.) On about his third trip to our bedroom Ryan and I realized that Buckley was ready for bed, clearly it was long past the time when his daddy is typically out for the night. So I moved his bed into our bedroom. He happily followed me and then pounced on his bed. I said good-night to Buckley and then went back out to the living room to continue watching the Olympics with Ryan.
I had sat down on the couch for a couple of minutes before we notice Buckley’s head peaking around the corner from the hallway leading to our bedroom. Ryan and I laughed when we realized that Buckley didn’t want to go to bed by himself. I’m not sure if he was lonely or scared of the dark, or both. But he did that a couple more times before we decided to join him, so that he could settle down…but also because we were really tired. Buckley settled down for good as soon as I got in bed. What a funny dog!
Sunday, August 17, 2008
It's about the same speed as when you were a child and slept in a tent with your friends in your back yard for the first time. You were all on your own and yet your parents checked in every so often and if you got scared, hungry or cold, you could always go back inside.
Here are a couple of shots to give you a feel:
So - it went pretty well (and by pretty well, I mean we leaned A LOT).
For instance, you don't need to feed your baby every hour on the hour just because they make a squeek (unless, of course, you want a child who wakes up every hour . . .). Turns out Annie grunts and groans in her sleep for no reason just like her dad does. Poor Holly was up at every rustle and peep and fed Annie so often that Bella stopped fully feeding and just spent the night snacking . . .
At one point, we thought Annie was in pain so we squirted a full dose of liquid Tylenol into a full bottle - which Annie proceeded to drink 1/4 of. We had to throw the rest away . . .
Add to that all the changings and the pumping and you have a pretty long night (mostly for Holly - I slept through about half of it like an all-American dad).
This morning we reviewed last night with the nurses and we think we have the schedule ironed out now. The nurses want us to track all sorts of things - (temperature, time doing PT exercises, whether each diaper is wet and/or dirty, when we catheterize her and how much urine comes out when we do, if/when we give her Tylenol, how much she eats, when Holly pumps etc.) all while being sleep-deprived, of course.
Naturally I turned to my magic bullet for all things complicated - the Excel Spreadsheet. I put together a form for each day that we can hang on a clipboard to simplify things as much as possible.
We are also slowly getting used to the cathing process, I have done it twice now without a hitch and Holly has done it once without any trouble. It's only three times a day and I am sure will become a fairly routine part of the diaper-changing process.
Of course, Annabelle has surprised everyone at every turn and so we are continuing to pray that she will develop bladder and bowel control along with the ability to walk.
All-in-all, our night at the PLU was very helpful and they have offered to let us stay one more night. We will need to return to the NICU before 6am tomorrow morning so that Annie can jump through some last hoops before hopefully being discharged tomorrow evening.
That means we will have had Annie in our care for 32+ hours before we temporarily take her back for her discharge overview.
We received a very encouraging e-mail from another parent who has a child with SB and explained that once you get yourself home and into a routine, your child with SB seems more and more like any other typical child. We are already beginning to experience that and it is a good feeling.
On a side note, a number of the nurses that have cared for Annie have fallen in love with the little peanut and have been sneaking down to the PLU to visit with us an Annabelle. These visits almost always end in a round of hugs between adults who otherwise are strangers but for being pulled into little Annie Lu's orbit.
She is turning out to be quite a force to be reckoned with . . .
Saturday, August 16, 2008
Thanks to my lightening-quick-cat-like-reflexes, I got the coffee off the shirt before it stained.
No whammies - No whammies . . . ;-)
Friday, August 15, 2008
The doctor says that, barring unforeseen circumstances, Annabelle can go home on Monday! Amazing!
There are a few things that have to happen between now and then though:
1) We are meeting with the geneticist today to go over family histories etc.
2) Annie needs to be transported back to Children's Hospital this afternoon for an x-ray to make sure her urinary track is in good working order.
3) Because children with spina bifida frequently have trouble with bladder control, the nurses want to make sure that we are able and comfortable catheterizing her every 4 hours - just to be on the safe side
4) We are meeting with the urologist tomorrow
5) The hospital has a pseudo-apartment near the NICU where Holly, Annie and I will stay tomorrow night. This will give us the chance to practice being on our own while the entire NICU is just down the hall - these people think of everything!
6) Sunday the three of us will all rest and recover from what just might be a sleepless night Saturday night.
7) We may all spend a second night in the NICU dorm on Sunday - just depends.
9) A family who previously had a baby in the NICU donated three car beds to the hospital for patients like us to take home for free! It is basically what you would expect if someone took the concept of an infant car seat and converted it to a bed. This way Annie can ride in the car laying down as opposed to in a car seat that would damage her still-healing back. We need to have Bella try it on for size to make sure it works for her.
And then we go home Monday!
The discharge nurse will make all our initial appointments with the Pediatrician, Spina Bifida Clinic, Neurologist, Plastic Surgeon, Orthopedics and Urologist so we will be off and running with all the various componants of care for Annabelle starting next week.
So we have the weekend to get the house in order, give the dawg a bath etc. - goodness gracious. Monday never looked so good!
God led me to read this passage in Exodus yesterday:
“Then Moses said, “Now show me your glory.”
And the LORD said, “I will cause all my goodness to pass in front of you, and I will proclaim my name, the LORD, in your presence. I will have mercy on whom I will have mercy, and I will have compassion on whom I will have compassion. But,” he said, “you cannot see my face, for no one may see me and live.”
I read that and was immediately filled with a great sense of awe, joy, and peace. I too have seen the glory of God. He graciously allowed me to be a witness to his almighty goodness as it passed through Mary Birch Hospital for Women on August 7, 2008. And I am forever changed.
There have been several times over the past couple of months that Holly and I have prayed together, through very bitter tears, as we cried out to God, “Why won’t you show your face?!?!?!” Now I can’t help but wonder if perhaps I was praying for the wrong thing. I think in future life trials I have learned trust by faith that God is there and to cry out to Him, “Show me your glory.”
Just a couple of weeks ago I learned in my bible study that the word “glory” in Greek can mean “the luster of the radiance of something: that which displays it.” The author noted, “For example, you don’t see the sun; you see the glory (radiance, outshining) of the sun. The purpose of human beings is to display the life of the Father – to be His ‘glory’.” (Live a Praying Life; by Jenifer Kennedy Dean)
The Glory of God has been present all along these past months through COUNTLESS people (young and old, near and far, friends and strangers, people of all different faiths or none at all). But I think there were times of deep pain and sadness when I looked for the wrong thing. I looked for his face, and missed His glory all around.
God has proclaimed His name to everyone who loves Annabelle and her parents, to the hospital staff, and to the many countless blog readers who have found comfort and hope in Annie’s story. God is both the creator and healer of Annie, not medicine. That’s what makes her a miracle. God’s glory is radiating from the life of a precious baby resting in bed 52 in the NICU at Mary Birch. Just as Moses face was radiant as he came down Mount Sinai and away from the physical presence of God, my face and heart are radiant as well every time I leave her bedside.
To God be the glory, Forever.
Go Annabelle, the sign cheered,
And she did...
no matter what was feared!
Go Annabelle, the shirt said,
And she did.....
no matter what the dread!
Go Annabelle her Daddy wrote with glee,
And she did...
And kicked the wires free!
Go Annabelle her Mommy's heart did claim,
And she did......
Now shes Bella Lu of fame!
Go Annabelle your soul has far to roam...
And she did...
Wow! She's ready to come home!
Way to go Annabelle Lucille!
I got up this morning, dragged myself into some casual-Friday-wear and headed to the hospital.
Annie just keeps looking better and better. I got to hold her and feed her and when she was all done we had our first play date! She was awake and alert and I just held her and we chatted the morning away.
She told me that mom gave her a sponge bath last night and that it was fun! Annabelle also said that nurse Emma took great care of her last night and that she was looking forward to nurse Amy coming back today.
I told Bella that after 7 days of laying on her stomach her noggin was starting to look funny - sort of flat on both sides - and that we needed to figure out a way to get her sleeping on her back so her head will round out.
Annie Lu replied that she was drop-dead-gorgeous-just-the-way-she-is-and-that-everyone-knows-it-and-besides-round-is-not-the-same-as-smart-and-if-anyone-wants-to-disagree-she-would-be-glad-to-give-them-a-perfectly-round-knuckle-sandwich.
I said she had a good point but that violence was not the answer . . . .
The physical therapist is coming by at 11:30 today so I plan on running back to the NICU to meet up with her.
Yesterday, the PT put Annie through the paces with some exercises and I was told that sweet-pea was not pleased with it at all. Which sort of makes me glad - if she can feel discomfort in her ankles it means that there is some neuro-action going on down there.
Still no definitive word on when she might come home "2-days" seems to be the current status.
Grandpa put together her bassinet yesterday so at least we have a place for her to land when she does come home! (which reminds me, I need to survey the folks and find out what they all want to be called - grandpa, papa, hey old guy . . .etc) ;-)
Thank you for your continued prayers and support!
Thursday, August 14, 2008
When you get married, you resign yourself to the fact that you will never fall in love again. When you have a child, you realize how wrong you were, and you realize it every single day, and you get down on your knees and thank the Good Lord that you were wrong all along.
All that to say, I am trying to get into the hospital by 6am and 6pm everyday so that I can get an update from the person who has been with Annabelle for the last 12 hours. Last night after picking up the dawg from the vet (his annual tune up) I raced into the NICU at 6:15pm to hear what news there was worth hearing.
The nurse was removing the two IV food drips as I arrived. The two tubes are still in Annie Lu's neck but they are just running saline through them to keep the lines open in case they are needed. Annabelle is now getting all her food by mouth. Just amazing.
The PT did not come by yesterday afternoon and tape Annie's feet after all. She said that actual exercises would be much more beneficial than tape and since the doctor told her we would be taking her home in a couple of days, the PT figured she would just hold off on the taping.
We still are in shock and disbelief that there is a possibility Annabelle will be coming home this weekend. I asked the nurse, "I thought that babies who were in the critical section of the NICU were then "graduated" to the non-critical side before being discharged."
Turns out that most of the babies in the NICU are pre-mies (sp?). Once they are stabilized on the critical side, they are moved to the non-critical side basically until they have the whole eating / body weight thing worked out. Since Annie is eating fine and her weight is good, she will probably skip the other side of the NICU when she is discharged.
I was relating this news to a friend and she said, "Let me get this straight, on top of all the physical miracles, now your daughter is a honors student who is skipping a grade?"
Annie is still having the dressing on her back changed everyday by the plastic surgeons. The neurologist has not yet changed the dressing on her head covering the shunt. Annie still cannot put any pressure on her back so how we are supposed to get her home in a car seat is a mystery to me.
I will try and snap some pictures with the camera phone when I go in this morning.
So with all the great news we have had this week, Annie is still in the NICU and, while we can't wait to get her home, the thought of having Annie at home comes with a certain amount of anxiety as well.
It is all I can do to keep from grabbing the nurse and saying, "Let me get this straight - today she is in one of the best NICU's in the country surrounded by state of the art equipment and a round-the-clock staff who had to go to medical school just to be qualified to look after my little girl for 12 hours at a stretch and tomorrow she is going to be AT MY HOUSE? IN A BASSINET? BEING WATCHED 24/7 BY THE FAMILY DAWG? GET SERIOUS!"
I suppose all new parents feel similarly. but still . . .
I know I keep saying it over and over but I am so thankful for all the support we have received in terms of friends and family basically carrying us through all this. But even more importantly, I am just so thankful for all the prayers you have been sending up on Annabelle's behalf.
As I visit three times a day, every time I see her, she looks better and better - I can almost see her healing and getting stronger right in front of my eyes. Amidst all the tubes and wires of the past week, it is as if the most important tube of all has been her prayer IV - picking up the slack where all the others leave off.
Some time ago, it occurred to be that our due-date was August 27th - just before Labor Day (hence the Labor-Day challenge cd in the right-hand column). I would really appreciate it if you would continue to pray us through the next two weeks.
I don't think we would even have her were it not for the countless prayers over the past few months. And I just can thank you enough.
Wednesday, August 13, 2008
These three boys are probably the closest thing Annie will have to local big brothers (in fact they all sported "Big Brother" stickers in order to get into the hospital to visit).
It's a good thing Annie is such a strong little bruiser - she is going to have her hands full . . . .
When I got to the hospital, i went straight to the NICU on the first floor. Turns out everyone was up in Holly's room on the 6th floor. A nurse had just finished feeding Annie and she asked me if I wanted to hold her. OF COURSE I want to hold her but . . . In her condition, I figure that there must be a certain degree of risk every time you pick her up and if we are going to risk it, I would rather the wife get the chance to hold her.
I told the nurse that I was ok with not holding her.
"Nonsense. Sit down", she said while pointing at the recliner near Annabelle's bed.
I sat down and leaned back. The nurse gently cradled little Annie and laid her on my chest and then covered her with a blanket. Annabelle laid there perfectly content, looking around and alternately grasping and letting go of my fingers.
I read to her out of the new Bible I had bought and it was absolute bliss. I pictured us spending an entire Saturday like that - both of us sprawled out on the couch . . . Man o man.
As I have mentioned before, Bella is gulping down her feedings and doing great. It turns out that as a general rule, once an infant in the critical area of the NICU is off all the wires and tubes, is stabilized and eating well, she is "graduated" to the less-critical side of the NICU. We aren't sure when Annie will "graduate" but it seems like it might be soon.
The doctor in charge of the NICU talked with Holly this morning and said that we may be able to take Annie home this weekend. Which just seems too good to be true.
So, just to recap:
1) The doctors did not expect Annabelle to survive very long after birth - we are now going strong on day 6
2) The doctors said if she did survive she would not be able to breathe on her own - she needed a little encouragement to get started but, once she got going she has been doing great
3) The doctors said that if she survived and if she breathed, that she would not be able to swallow - she is powering through the bottles at every feeding
4) The doctors said that even if she did survive, breathe and swallow, she would be paralyzed from her upper back on down . . . .
This morning we met with the physical therapist who came in to assess Annie Lu. I stood there holding my breath as she poked and stretched and flexed and prodded our little miracle. As I understand it, it is hard to assess newborns in terms of their quads and hamstrings and the PT said she was not seeing a lot of action there.
Annabelle's feet are both clubbed which means they are turned inward and upward so that the arches of her feet are touching the inside of her calves. The PT explained that even if Annie does not ultimately use her legs for mobility, it would still be important for her to do weight-bearing exercises in order to develop her leg bones and muscles etc. In order to do that, her feet need to be fixed.
After checking Annabelle out, the PT remarked that she thought much of the straightening process could be accomplished just by taping her ankles with athletic tape and she said she would come back this afternoon to tape her up.
Then she said something interesting. She said that it appeared that Annie's feet were turned in part due to her muscles contacting and pulling her feet inward - which means at least some neurological signals are being received in her lower legs.
Then she ran her finger along the outside of Annie's right foot and the wife and I stood in wonder as we watched Bella wiggle all five of her toes. The PT did the same on Annie's left foot and two of her toes flexed.
The PT also went on to explain that the swelling along Annabelle's spine due to the surgery might be suppressing some of her nervous system and that we might see even more "action" once the swelling has gone down.
It was just amazing. We aren't going out and buying her first set of track shoes just yet but it was so encouraging to hear that they were going to work on straightening her feet today and I just can't explain what it was like to see those little piggies flex.
Just before the PT left, she asked if anyone had checked to see if Annie could hold her head erect. We said no one had checked yet and the PT gently sat her up and let go of her neck. "Whoa!", the PT exclaimed. "That's really good - this baby is really strong!"
That's my girl.
So that is the latest - every day brings new hope and even more fervant prayers. She is our miracle baby and when I say "our" I mean all of ours - all those who have been hoping and wishing and praying and crying and checking in for the past few months.
I can't tell you why God answers some prayers the way we want and not others - I am just so grateful for the joy and relief he has graciously given us these past few days. I joked with a friend that we had so many little children praying for Annabelle that God's didn't dare take her from us - he was at risk of losing too many disappointed future congregants.
Please keep praying - there is healing left to do and miracles yet to be realized.
And GO ANNABELLE!
Tuesday, August 12, 2008
(lyrics to the song my buddy used in his video - scroll down to 8/11)
Well I just heard the news today
It seems my life is going to change
I closed my eyes, begin to pray
Then tears of joy stream down my face
With arms wide open
Under the sunlight
Welcome to this place
I'll show you everything
With arms wide open
With arms wide open
Well I don't know if I'm ready
To be the man I have to be
I'll take a breath, I'll take her by my side
We stand in awe, we've created life
With arms wide open
Under the sunlight
Welcome to this place
I'll show you everything
With arms wide open
Now everything has changed
I'll show you love
I'll show you everything
With arms wide open
With arms wide open
I'll show you everything ...oh yeah
With arms wide open..wide open
After the C-section, I followed Annie down to the NICU and stayed until she was settled. Then I hurried out to the waiting room to update whomever might be there. As I came around the corner, it seemed as if our friends were filling up half the room.
The first person I locked eyes with was my dear friend Wendy but I wasn't in earshot yet so I just cracked a feeble smile to let her know things were okay and she immediately burst into tears.
The following day, after Annie came out of her 5-hour surgery and I got the news that she had pulled through like a champ, I called my wife in her room and gave her the good news - it sounded as if everyone on her hospital floor was bursting into tears of joy.
Nurses, doctors, doctor's spouses, other patients, friends, family and an army of people we don't even know but whom have been e-mailing and commenting on the blog have all been praying and pulling for us. We are so utterly grateful. I don't know how we could get through this without all your love and support.
Not to mention things like this (you may have to scroll down to the video posted on 8/11) - good lord in heaven above. I told my wife that we are going to spend the rest of our lives trying to be worthy of the great friends we have.
That being said - I am sure you would rather hear about the girls so here is the update:
Holly was discharged from the hospital yesterday but they let her stay in her room one more night for free. When I arrived at the NICU at 5:30am this morning, Holly was sitting in the waiting room - clearly upset.
It turns out that Annabelle was in pain a good portion of the evening and did not get any sleep. they put her back on pain medication but Holly was told that she was not allowed to nurse her until Annie had gotten some rest first.
I took Holly upstairs to her room for some breakfast and she fell asleep in short order after that. I went down to the NICU and checked in on Annabelle (who was sleeping soundly) and chatted with the nurse who confirmed everything Holly had told me.
When the doctors told me they were taking Annie off her pain meds Sunday night, I was both relieved and trouble at the same time. The fact that she didn't need a bunch of drugs in her system was good news but you would think that after two major surgeries, a person would be in pain. Why wasn't she in pain? Was the neurological damage that extensive?
The doctors assured me that any discomfort would show up as an elevated temperature, blood pressure and heart rate - not to mention her little expression. I spent most of my time in the NICU yesterday with my eyes glued to her digital read-out but never saw any indication that she was anything other than comfortable. That all must have changed last night.
So while I am saddened that wee-one had a tough night, I am also relieved that she has the ability to feel discomfort.
It was a tough night for my girls but they are resting and regrouping for the next assault.
So what is the next step?
Barring any unforeseen troubles, it is all about recovering and going home at this point. Holly and Annie are bonding and nursing just fine for the most part. Holly will be going home this evening for the first time which I expect to be difficult on her to say the least ( I am considering sleeping in my clothes for the inevitable 2am "Let's go back" nudge from the wife).
Yesterday I asked the plastic surgeon when we could expect to have Annie's stitches removed and he said, "A week from Thursday when you come to the office for a check up".
Apparently he is under the impression that Annie will be an outpatient by next week. Of course, he can only speak for the plastic surgery portion - we will still need the thumbs up from the neurology and orthopedic teams - not to mention the doc in charge of the NICU.
I don't see how you go from THIS last Friday:
To going home a week later.
Then again, our little girl has been full of surprises ever since she arrived.
On a side note:
On my drive home last night I pictured dancing in the kitchen (me and my wife's preferred home dance floor) with little Annie in my arms. Then the thought struck me - "What if she isn't able to use her legs?"
"Then we will dance twice as much until she can" was the thought that immediately followed.
Then I log on this morning and find this video posted by my niece.
Thank you for all your continued prayers and support - we aren't out of the NICU woods yet but we are making progress!