So, I realized the other day that I never did post about Kara's U.G.I. study (upper gastro-intestinal). It was quite, shall we say, educational.
It was about 2 weeks ago, and was phase 1 to get ready for a G-tube (tube going straight through her skin to her stomach). They do this to get a feel for Kara's anatomy so that the surgeons do not have "surprises" when they go to put in a G-tube.
We went to Bellevue Children's (hooray for Bellevue!). Kara needed an empty stomach, so NPO (nothing by mouth) for 3 hrs. They had me change her to a hospital gown and place her on her back on a board, for a chest x-ray. We strapped her chest in, and then 2 straps on her legs (one for thigh, one for calves). Then (here's where I wish I had a picture, it's hard to describe and imagine) we strapped her arms up over her head, by her ears. Poor baby, that made her cry. She got out of her leg straps a few times, and the tech commented that she was quite strong (yes, we know! She kicked me for almost a whole 9 months).
After the initial chest x-rays, the radiologist came in and operated a video x-ray. They gave her barium to drink (shows up on the x-ray) and watched her stomach fill and empty. Apparently different positions help it to empty. So the tech operated Kara's board by a circle near her head and swiveled Kara (upside down, lateral, oblique) as directed by the radiologist. You could say it was her first roller coaster ride. As this was happening (I was above Kara's head, holding her poor little hand), the tech said that we wait for her stomach to empty. He said that if she was older, he would talk to her about food and that would get the system going. Amazing, right!?! God has designed an amazing work of art in our bodies that can produce gastric juices just by hearing about food!
God was gracious and allowed her stomach to digest fairly quickly and the whole process only took about 20 minutes.
We have yet to meet with the surgeons since then. We are going to try another "wean" (meaning give Kara less calories by tube to encourage her to EAT!) starting this week to have more info for the surgeons. Kara actually took an ENTIRE feed yesterday by mouth. (Her normal is about half). So we are cautiously optimistic that she will, in fact, improve.
On a completely different note, ladies' Bible study at church this morning was such a refresher. Great time to be with ladies and connect. I am so looking forward to studying 2 Thessalonians this summer.
Tuesday, June 28, 2011
Some Pics
Connor & Katie playing "sleep" while I'm getting lunch on the table.
Kara's tummy time skills. (Yesterday she rolled over about 5x in a row.
We'll see if her muscle memory still works today.)
We'll see if her muscle memory still works today.)
Friday, June 24, 2011
Feeding Tube Fiasco
So, I am thankful this is the first of its kind. Here's our funny feeding tube fiasco tale.
Last night Kara had a hard time going down. She had her last feed at 9:50. Feeding tube bonus: if it's a full feed (none through bottle) we can set the feeding tube to automatically give her the same amount at 3 a.m., and then I can "sleep in" until I need to pump at 5. Awesome, right? So it was set for a 5 hr 10 minute "interval". We ended up being up with Kara until 11 p.m. when she spit up and burped quite a bit. So, Kara change, sheet change, diaper change and then finally bedtime, hooray!
All was quiet last night until our alarm at 5. Kara continued to sleep until 8 (wow!! She's usually up at 6, this sleeping in was a huge blessing and Mommy was having delusions of grandeur thinking through all she could accomplish today). I didn't think much of her sleeping in this long since she's back on "full calorie feeds" and is probably rarely hungry. Just catching up from last night. At 8:30ish I walked by her room and peeked in, and she was awake and looking around. I went in to get her an noticed a few things:
1) her feeding tube had been pulled out (see pic below)
2) she was soaking (probably wet through) and then...
3) I heard her feed pump going. Yikes! Oh my goodness... she had slept long enough that her NEXT (after 5hr10min) feed was going on. This has NEVER happened that she slept that long for it to be an issue, her feed is supposed to be at 6 a.m. Then it clicked... she was SOAKED because of the milk going through her tube and "feeding" the front of her shirt. Thankfully I had not yet washed everything from the night before (was just about to) so I changed Kara, changed her diaper, and sheets and mattress cover.
Then, the next challenge. Putting in her feeding tube by myself... dum, dum, dum. I prayed for grace and received abundantly. I took a picture for posterity's sake.
Oh, yeah... in the meanwhile? Connor & Katie were arguing, shrieking, pushing, etc. so they are currently in "play alone time".
Last night Kara had a hard time going down. She had her last feed at 9:50. Feeding tube bonus: if it's a full feed (none through bottle) we can set the feeding tube to automatically give her the same amount at 3 a.m., and then I can "sleep in" until I need to pump at 5. Awesome, right? So it was set for a 5 hr 10 minute "interval". We ended up being up with Kara until 11 p.m. when she spit up and burped quite a bit. So, Kara change, sheet change, diaper change and then finally bedtime, hooray!
All was quiet last night until our alarm at 5. Kara continued to sleep until 8 (wow!! She's usually up at 6, this sleeping in was a huge blessing and Mommy was having delusions of grandeur thinking through all she could accomplish today). I didn't think much of her sleeping in this long since she's back on "full calorie feeds" and is probably rarely hungry. Just catching up from last night. At 8:30ish I walked by her room and peeked in, and she was awake and looking around. I went in to get her an noticed a few things:
1) her feeding tube had been pulled out (see pic below)
2) she was soaking (probably wet through) and then...
3) I heard her feed pump going. Yikes! Oh my goodness... she had slept long enough that her NEXT (after 5hr10min) feed was going on. This has NEVER happened that she slept that long for it to be an issue, her feed is supposed to be at 6 a.m. Then it clicked... she was SOAKED because of the milk going through her tube and "feeding" the front of her shirt. Thankfully I had not yet washed everything from the night before (was just about to) so I changed Kara, changed her diaper, and sheets and mattress cover.
Then, the next challenge. Putting in her feeding tube by myself... dum, dum, dum. I prayed for grace and received abundantly. I took a picture for posterity's sake.
Oh, yeah... in the meanwhile? Connor & Katie were arguing, shrieking, pushing, etc. so they are currently in "play alone time".
Kara when she awoke this morning:
Kara on her current feed after Mommy replaced her tube:
Bright spot in a dreary day
I'm so thankful my kiddos enjoyed the rain, it definitely brought a "thank you, God" to my heart in an otherwise dreary day.
Wednesday, June 22, 2011
What we do
Putty the wall with Daddy (good Father's Day activity!)
Go on a walk with Mommy (yes, it's a full body workout). Isn't it amazing we can all fit on one stroller? And yes, Mommy is trying to teach us to actually WALK on walks ;)
Never too early to learn how to cook! Connor put this in Kara's hand at Mommy's request, great job Connor!
Quick! Kara's not watching, get on her wedge!! (Reflux wedge for Kara. Works GREAT for her tube feeds - works great as a tumbling mat for the big kids as well)
Ride around in the Ergo. The solution to Katie's "will you hold-you-me?" question when she was tired at 4 p.m. last Friday.
Tuesday, June 21, 2011
Kara
We met with Kara's feeding therapist last Thursday, and we decided to do a short "trial". She mentioned that at 5 or 6 months, we might try a 10 day weaning process to get her off her NG tube. Since we were going to decide about a G tube this Thursday 6/23, I wanted to do a short trial now to see if the "weaning process" made any difference in her oral intake. (Since then, our surgery appt has been rescheduled for July 7 - again, I am reminding myself to trust our God who does all things well, because I feel like this Thursday would have been better!)
Here are the details, for those who are interested.
1) The norm. Each day Kara gets 7 feeds of 110 mL per feed at 22 cal/oz (it's all so scientific and mathematical!). Before we started, I totaled her daily oral intakes over the past few weeks. She averaged about 120 mL per day by bottle (yikes! Only 1/7!!)
2) The process. The last 3 days (Sun to Tue), we gave her the "normal" 110mL through the tube for her overnight feeds. The 6 a.m. feed, we gave by bottle then added 50mL of water through tube (to help her hydration levels but encourage her hunger). Next feed, 9 a.m. give bottle, then add 45 mL of milk through tube (down from her avg of 80mL through tube). 12 p.m. repeat the bottle, 50mL water feed. 3 p.m. repeat bottle, then 45mL milk. 6 p.m. bottle, 50mL water, 9 p.m. is a nighttime feed all through tube.
3) The outcome. She has eaten way more often (one time 8 bottle feeds during just the day time) because she HAS been hungry. Her oral totals have been in the 200s, with an alltime world record of 100 mL feed today at 3:45 - way to go, Kara!!
4) Some thoughts. Tonight before bed she was definitely refusing a bottle, but was hungry - would not stop crying until I started her feed. So, that is a good reminder to me that she simply cannot do it. She does not have the lung capacity. However, I am encouraged that we can babystep her to feeding independence eventually. And that she DOES eat a lot more when she is actually hungry. Which makes me wonder... has she ever been truly hungry until these last 3 days? Taking the long view of things, it's a delicate balance. We would like for her to be 'normal' and off the tube, but for her lung development, it is essential that she grows well. That is the Drs. main concern. Thank you for continuing to lift us up in prayer as we navigate these waters and choose what is better vs. what is good for our daughter.
One more thing... have we mentioned that Kara is now smiling, laughing, blowing raspberries, and making "guh" and "buh" sounds? Ah, the normal baby stuff. Does good to a Mommy's heart!
Here are the details, for those who are interested.
1) The norm. Each day Kara gets 7 feeds of 110 mL per feed at 22 cal/oz (it's all so scientific and mathematical!). Before we started, I totaled her daily oral intakes over the past few weeks. She averaged about 120 mL per day by bottle (yikes! Only 1/7!!)
2) The process. The last 3 days (Sun to Tue), we gave her the "normal" 110mL through the tube for her overnight feeds. The 6 a.m. feed, we gave by bottle then added 50mL of water through tube (to help her hydration levels but encourage her hunger). Next feed, 9 a.m. give bottle, then add 45 mL of milk through tube (down from her avg of 80mL through tube). 12 p.m. repeat the bottle, 50mL water feed. 3 p.m. repeat bottle, then 45mL milk. 6 p.m. bottle, 50mL water, 9 p.m. is a nighttime feed all through tube.
3) The outcome. She has eaten way more often (one time 8 bottle feeds during just the day time) because she HAS been hungry. Her oral totals have been in the 200s, with an alltime world record of 100 mL feed today at 3:45 - way to go, Kara!!
4) Some thoughts. Tonight before bed she was definitely refusing a bottle, but was hungry - would not stop crying until I started her feed. So, that is a good reminder to me that she simply cannot do it. She does not have the lung capacity. However, I am encouraged that we can babystep her to feeding independence eventually. And that she DOES eat a lot more when she is actually hungry. Which makes me wonder... has she ever been truly hungry until these last 3 days? Taking the long view of things, it's a delicate balance. We would like for her to be 'normal' and off the tube, but for her lung development, it is essential that she grows well. That is the Drs. main concern. Thank you for continuing to lift us up in prayer as we navigate these waters and choose what is better vs. what is good for our daughter.
One more thing... have we mentioned that Kara is now smiling, laughing, blowing raspberries, and making "guh" and "buh" sounds? Ah, the normal baby stuff. Does good to a Mommy's heart!
Saturday, June 18, 2011
Good Thinking
I have been reading "A Chance To Die" by Elisabeth Elliot. It is the biography of Amy Carmichael, missionary to India. Amy was a prolific writer, and a sober-minded soldier for Christ. She truly redeemed the time and sought to use her energies in the most spiritually profitable ways possible. Here are some quotes I've read this week that have encouraged my soul.
After many difficult things happened, one of Amy's mentors in her work, a close spiritual friend, died. Elliot writes,
"Kind people, wanting to console, made the usual observation: 'It is very hard to see how this can be for the best.'
'We are not asked to SEE,' said Amy. 'Why need we when we KNOW?' We know - not the answer to the inevitable Why, but the incontestable fact that it is for the best. 'It is an irreparable loss, but is it faith at all if it is 'hard to trust' when things are entirely bewildering?' "
In this same period of life, Amy writes in a prayer poem:
"From subtle love of softening things,
From easy choices, weakenings,
(Not thus are spirits fortified,
Not this way went the Crucified,)
From all that dims Thy Calvary,
O Lamb of God, deliver me.
And another:
"And shall I pray Thee change Thy will, my Father,
Until it be according unto mine?
But, no, Lord, no, that shall never be, rather
I pray Thee blend my human will with Thine."
And this poem hits me, living in modern America, quite hard (especially the last 2 lines). Reminding me to think correctly about what the life if a servant of Christ should look like:
"Hast thou no scar?
No hidden scar on foot, or side, or hand?
I hear thee sung as mighty in the land,
I hear them hail thy bright, ascendant star,
Hast thou no scar?
Hast thou no wound?
Yet I was wounded by the archers, spent,
Leaned Me against a tree to die; and rent
By ravening beasts that compassed Me, I swooned:
Has thou no wound?
No wound? No scar?
Yet as the Master shall the servant be,
And pierce-ed are the feet that follow Me;
But thine are whole: can he have followed far
Who has no wound nor scar?"
After many difficult things happened, one of Amy's mentors in her work, a close spiritual friend, died. Elliot writes,
"Kind people, wanting to console, made the usual observation: 'It is very hard to see how this can be for the best.'
'We are not asked to SEE,' said Amy. 'Why need we when we KNOW?' We know - not the answer to the inevitable Why, but the incontestable fact that it is for the best. 'It is an irreparable loss, but is it faith at all if it is 'hard to trust' when things are entirely bewildering?' "
In this same period of life, Amy writes in a prayer poem:
"From subtle love of softening things,
From easy choices, weakenings,
(Not thus are spirits fortified,
Not this way went the Crucified,)
From all that dims Thy Calvary,
O Lamb of God, deliver me.
And another:
"And shall I pray Thee change Thy will, my Father,
Until it be according unto mine?
But, no, Lord, no, that shall never be, rather
I pray Thee blend my human will with Thine."
And this poem hits me, living in modern America, quite hard (especially the last 2 lines). Reminding me to think correctly about what the life if a servant of Christ should look like:
"Hast thou no scar?
No hidden scar on foot, or side, or hand?
I hear thee sung as mighty in the land,
I hear them hail thy bright, ascendant star,
Hast thou no scar?
Hast thou no wound?
Yet I was wounded by the archers, spent,
Leaned Me against a tree to die; and rent
By ravening beasts that compassed Me, I swooned:
Has thou no wound?
No wound? No scar?
Yet as the Master shall the servant be,
And pierce-ed are the feet that follow Me;
But thine are whole: can he have followed far
Who has no wound nor scar?"
Thursday, June 16, 2011
My 3 Little Boogs
(We have called Connor "the boog" or "boogie" since day 1, Katie in Utero was "boogie 2", and we frequently call them all our boogies).
Kara's new game/talent is pulling our her tube. She did it 3 x in a row yesterday (of course, during a feed) and also today (last time pulled it all the way out, with gloved hands. Our bad for not replacing her replicare tape which was slightly un-adhered). Hooray for budding fine motor skills!! Boo for now having to glove her hands! (Please, Lord, let us get a G tube in the next few weeks).
Katie asked for a "nother bite of your pantake, please?" I said no, she could have hers. (She had just had one of mine). She responded with sad, big brown eyes and said in a sad voice "No, I cannot eat this pantake." I asked, "why not?" She said "because I'm crying for my bankie (blankie)".
On the blankie note, one of Connor's most insightful comments was at my Mom's house one time. He said "When we're not in our beds, our blankies are crying for us!"
I love my boogs!
Kara's new game/talent is pulling our her tube. She did it 3 x in a row yesterday (of course, during a feed) and also today (last time pulled it all the way out, with gloved hands. Our bad for not replacing her replicare tape which was slightly un-adhered). Hooray for budding fine motor skills!! Boo for now having to glove her hands! (Please, Lord, let us get a G tube in the next few weeks).
Katie asked for a "nother bite of your pantake, please?" I said no, she could have hers. (She had just had one of mine). She responded with sad, big brown eyes and said in a sad voice "No, I cannot eat this pantake." I asked, "why not?" She said "because I'm crying for my bankie (blankie)".
On the blankie note, one of Connor's most insightful comments was at my Mom's house one time. He said "When we're not in our beds, our blankies are crying for us!"
I love my boogs!
Wednesday, June 15, 2011
Pics from TX
Papa is always ready to play with the Grandkids.
Reading with Daddy is a favorite wherever we are.
G.G. (Great Grandma, Meg's Grammy) loved our little Kara-beara.
Aunt Liz (a medical doctor) let the kids give her a "check-up"
Outside in the sprinklers!
3 of Katie's favorites: G.G., red bear (who belongs to G.G.) and sunglasses!
Fun at the Spray Park starring cousins Julia & Jacob with Katie & Connor
Reading with Daddy is a favorite wherever we are.
G.G. (Great Grandma, Meg's Grammy) loved our little Kara-beara.
Aunt Liz (a medical doctor) let the kids give her a "check-up"
Outside in the sprinklers!
3 of Katie's favorites: G.G., red bear (who belongs to G.G.) and sunglasses!
Fun at the Spray Park starring cousins Julia & Jacob with Katie & ConnorMonday, June 13, 2011
Grandad
We had a good time in TX remembering Grandad (my Dad's Dad). He lived to age 96, and by God's grace was ready to go. He was able to be at home during his last days in his earthly body. It was a blessing to remember his generous heart and be amazed at how many will miss him. I remember:
*When I was young (apparently just 5 or 6, I don't remember being THAT young...) Grandad let me drive the golf cart. That was a mistake he only made once, as there were disastrous consequences.
*Grandad would always let me help pick the figs. Figs and Grammy's fig preserves were one of the highlights of seeing Grammy & Grandad in the summers.
*Grandad patiently taught me how to play Kings on the Corner and Skipbo and 42 (a domino game).
I am thankful that the Lord gave me such a wonderful Grandad. He will be missed.
*When I was young (apparently just 5 or 6, I don't remember being THAT young...) Grandad let me drive the golf cart. That was a mistake he only made once, as there were disastrous consequences.
*Grandad would always let me help pick the figs. Figs and Grammy's fig preserves were one of the highlights of seeing Grammy & Grandad in the summers.
*Grandad patiently taught me how to play Kings on the Corner and Skipbo and 42 (a domino game).
I am thankful that the Lord gave me such a wonderful Grandad. He will be missed.
Thursday, June 9, 2011
Texas Update
We are having a wonderful time in Houston, TX. I am particularly enjoying shorts, tank tops and feeling warm! My sister has the same family we do: boy-girl-girl, same spacing, except she had her first child 18 months before we did. Our 2 boys are loving playing together, and Katie and Julia (3 weeks apart in birth) are also enjoying each other. We can definitely tell Katie is 2nd born. She's doing her best to do everything the boys do whereas Julia is more content to just do her own thing (Julia's older sister Lydia stayed home with Daddy. Lydia is the one to hang with Jacob at home). We will definitely upload some pictures when we get home.
We are enjoying time with my Dad's brother and his family, and we'll see some more cousins and extended family tomorrow morning and in the afternoon at Grandad's funeral. We have been abundantly blessed by Grammy's friends and my Aunt & Uncle's friends. More pies than I can count have been delivered and lots of delicious food. I am REALLY looking forward to the BBQ for dinner tonight, can't wait! We had some delicious tuna fish sandwiches for lunch yummy mayo).
Jeremy made it through is red-eye and arrived here this morning. The last time he took a red-eye it was his first time to meet my parents. That time he had the misfortune to sit next to a sun-burned body builder who radiated heat and "squished" Jeremy during the flight. This time, however, he was able to catch some sleep. While I haven't acquired too many other details, I did ascertain that a sunburned body builder was not next to him =)
Kara is doing well, and many who have prayed for her are thankful for the opportunity to let friends and family see her.
We are off to go swimming with the kiddos, so I'll have to post pics and more updates later.
We are enjoying time with my Dad's brother and his family, and we'll see some more cousins and extended family tomorrow morning and in the afternoon at Grandad's funeral. We have been abundantly blessed by Grammy's friends and my Aunt & Uncle's friends. More pies than I can count have been delivered and lots of delicious food. I am REALLY looking forward to the BBQ for dinner tonight, can't wait! We had some delicious tuna fish sandwiches for lunch yummy mayo).
Jeremy made it through is red-eye and arrived here this morning. The last time he took a red-eye it was his first time to meet my parents. That time he had the misfortune to sit next to a sun-burned body builder who radiated heat and "squished" Jeremy during the flight. This time, however, he was able to catch some sleep. While I haven't acquired too many other details, I did ascertain that a sunburned body builder was not next to him =)
Kara is doing well, and many who have prayed for her are thankful for the opportunity to let friends and family see her.
We are off to go swimming with the kiddos, so I'll have to post pics and more updates later.
Tuesday, June 7, 2011
We made it to TX
We are in TX . Hooray! Thanks to my Mom, who traveled with me and the kids, we did great. It was a fast trip (30 min layover, yikes!). God orchestrated all our feeding/pottying/pumping needs beautifully, and now we can relax and enjoy being here.
Our children are being loved on by our extended family, and we are loving it. Jeremy flies red-eye Wednesday night and will be here Thursday. Hooray!
We are going to take full advantage of the (hot) weather. Connor and Katie already made good use out of my Grandma's birdbath (splish, splash) and sprinklers. We've heard rumor of a few spray parks, so we'll see what the next week holds. Thanks for your prayers.
Our children are being loved on by our extended family, and we are loving it. Jeremy flies red-eye Wednesday night and will be here Thursday. Hooray!
We are going to take full advantage of the (hot) weather. Connor and Katie already made good use out of my Grandma's birdbath (splish, splash) and sprinklers. We've heard rumor of a few spray parks, so we'll see what the next week holds. Thanks for your prayers.
Monday, June 6, 2011
Whirlwind
This weekend was quite full. Saturday I went to the chiropractor (hooray! Long overdue) and then to a soccer game in Redmond. The pastor who married us (from Albuquerque, we were married in So Cal) was in town with his wife and son for the son's soccer tournament. The son has given a verbal commitment to play for UW, so this was high level soccer. It was a gorgeous day, and we were so thankful to spend it on the field with our good friends. The kids did great despite the lack of naps (God was gracious in allowing Connor a long nap Fri and Katie to sleep in Sat.)
We then went to McDonald's to spend our "extra time" before a Sunday School activity. This is the first time they've been to the McDonald's Play Place. Highlight for Mommy: $1 sundaes. YUM!
Saturday evening we were at a church good-bye BBQ for the Abrams family. We will miss you but are excited for what God has for you just around this bend in the road.
Sunday morning, Kara woke up to eat at 6 (actually she woke up because her nose was too full of boogers. She ate a tiny bit but went back to sleep). We heard Connor go potty at that time and get back in bed. Later, when we all got up for reals (8:40... unreal at our house!! 6:30 is usually sleeping in). We asked Connor (knowing the answer) if he had gone potty already this morning. He answered "No, I went potty in the middle of the night." Somehow we succeeded in communicating that in the NW daylight does NOT mean daytime. What a huge achievement!! =)
Then it was to church and home again. We were hoping our friends, the Schmidts, would be abe to come to our home for dinner, but that did not work out. I felt like a kid who could not understand why Daddy said "no" for an ice cream cone. "Why, God? Isn't his a good thing?" Thankfully, unlike a child, I can KNOW for certain that my heavenly Father knows what's best (while we earthly parents do our best, we do fail)
Tomorrow early a.m. the kids and I are going to Baytown, TX for a Memorial service for my Grandad. He was 96 years old and has been ready to "go" for a while, so we are thankful for that. We are thankful to have the opportunity to see my sister, Liz, and 2 of her children. (They live in Asia so we do not get to see them often). Please be praying for anything and everything you can imagine. Particularly traveling with Kara, her breathing on the airplane (she is getting over her cold in the nick of time, thanks God!) and all her and my paraphernalia with NG tube, pumping gear, etc. I'm sure you can imagine... Thank you!
My Mom graciously stayed in Washington so she can fly down with me, and Jeremy will join us on Thursday.
Kara ready for a sun-filled day!
We then went to McDonald's to spend our "extra time" before a Sunday School activity. This is the first time they've been to the McDonald's Play Place. Highlight for Mommy: $1 sundaes. YUM!
Saturday evening we were at a church good-bye BBQ for the Abrams family. We will miss you but are excited for what God has for you just around this bend in the road.
Sunday morning, Kara woke up to eat at 6 (actually she woke up because her nose was too full of boogers. She ate a tiny bit but went back to sleep). We heard Connor go potty at that time and get back in bed. Later, when we all got up for reals (8:40... unreal at our house!! 6:30 is usually sleeping in). We asked Connor (knowing the answer) if he had gone potty already this morning. He answered "No, I went potty in the middle of the night." Somehow we succeeded in communicating that in the NW daylight does NOT mean daytime. What a huge achievement!! =)
Then it was to church and home again. We were hoping our friends, the Schmidts, would be abe to come to our home for dinner, but that did not work out. I felt like a kid who could not understand why Daddy said "no" for an ice cream cone. "Why, God? Isn't his a good thing?" Thankfully, unlike a child, I can KNOW for certain that my heavenly Father knows what's best (while we earthly parents do our best, we do fail)
Tomorrow early a.m. the kids and I are going to Baytown, TX for a Memorial service for my Grandad. He was 96 years old and has been ready to "go" for a while, so we are thankful for that. We are thankful to have the opportunity to see my sister, Liz, and 2 of her children. (They live in Asia so we do not get to see them often). Please be praying for anything and everything you can imagine. Particularly traveling with Kara, her breathing on the airplane (she is getting over her cold in the nick of time, thanks God!) and all her and my paraphernalia with NG tube, pumping gear, etc. I'm sure you can imagine... Thank you!
My Mom graciously stayed in Washington so she can fly down with me, and Jeremy will join us on Thursday.
And to close, isn't Katie's hair just adorable? This is fresh after a bath. I couldn't resist taking (and sharing) this picture.
And our Kara-beara, if she's tired, she sleeps. I have to be QUICK to get her in her bed.
Thursday, June 2, 2011
Kara, 3 months
We can hardly believe it's been 3 months. Wait a minute, YES we can! What a journey.
Kara continues to grow. She is smiling, "talking", can hold her head up for a few seconds during "tummy time", and sleeps like a dream. This week has been a tad bit tougher in the sleep department because she has a cold (and I'm sure many of you can remember or imagine how frustrated a little baby is when they can't sleep due to their boogers). Jeremy and I have been using the booger-bulb frequently.
Health-wise, she just needs to grow. Her oral feed volume is not improving and is fairly sporadic. We continue to keep feeding her so she will still "get" eating and not develop food aversion. We are thankful we can give her the calories she needs, regardless. I think that Kara, due to her limited lung capacity, only has a certain amount of energy (lower than most her age). If she did choose to eat all her food (and she could), I don't think she'd have energy to push up, move her head, chatter with Mommy and Daddy, etc. We can give her extra calories, we cannot help her muscles and brain develop. So God is graciously enabling her to "choose" to do the latter on her own, at the expense of the former. Blessed be the Lord!
Jeremy and I continue to navigate the new normal. I am running (o.k.... plodding!) about 10 min 3x a week, and that has gone a huge way to improve my outlook. We are also heavily dependent on the Word to fortify our defenses against frustration, depression, and exhaustion!
Thanks for your support these 3 months (and long before, when the CCAM was first found). We are abundantly blessed.
Katie has just started to ask to "hold" Kara and help bottle-feed her.
What would I do without my helpers?
Ask Daddy... not sure when or why... =)
Wednesday, June 1, 2011
How many...
How many times have we changed Kara's NG tube?
Including yesterday morning, at a friend's house on the way to a doctor's appt (thanks for helping and for watching Connor and Katie, Megan!!)
- 8 times in 2 months. This does not include the times we've simply "put it back in" after being pulled out (if the facial tape still has good adhesion).
How many ketchup packets does it take for Connor and Meg to share a small Burger King french fry? (Hint: it's the same as the # of times Connor dips a single fry into the ketchup).
-8 ketchup packets. Jeremy went to Burger Master while we were at Children's, got his burger and condiments, sat down and realized... he got probably 3x the ketchup he needed because he's used to getting ketchup for both of us since we've been married.
How many times do we use a syringe to put different liquids (not milk) in Kara's NG tube each day?
- 12 times. 7 syringes of water (1 after each feed). 2 doses of Renitadin. 2 doses of prune juice (beats suppositories!). 1 dose of poly-vi-sol... oh yeah! NG tube bonus! Not in the mouth =) But it does still get spit up occasionally.... =| Technically when we give a med we're supposed to "flush" with water before and after, so we should be giving even more than that. Just a "day in the life"
Including yesterday morning, at a friend's house on the way to a doctor's appt (thanks for helping and for watching Connor and Katie, Megan!!)
- 8 times in 2 months. This does not include the times we've simply "put it back in" after being pulled out (if the facial tape still has good adhesion).
How many ketchup packets does it take for Connor and Meg to share a small Burger King french fry? (Hint: it's the same as the # of times Connor dips a single fry into the ketchup).
-8 ketchup packets. Jeremy went to Burger Master while we were at Children's, got his burger and condiments, sat down and realized... he got probably 3x the ketchup he needed because he's used to getting ketchup for both of us since we've been married.
How many times do we use a syringe to put different liquids (not milk) in Kara's NG tube each day?
- 12 times. 7 syringes of water (1 after each feed). 2 doses of Renitadin. 2 doses of prune juice (beats suppositories!). 1 dose of poly-vi-sol... oh yeah! NG tube bonus! Not in the mouth =) But it does still get spit up occasionally.... =| Technically when we give a med we're supposed to "flush" with water before and after, so we should be giving even more than that. Just a "day in the life"
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