Friends

We were so blessed this week by visits from friends from college: Dan & Carlee, and Mary. What a blessing to have the opportunity to slow down and reflect as we caught up on what the Lord is doing in each of our lives.

I am so thankful to peek into their lives, on the outside, and clearly see God's hand, His provision, His leading, and remember that He is doing the same in ours - I just can't see it from the outside but am called to trust on the inside. Even from the inside, we have been privileged to see God's abundant grace. Kara continues to move along, and we are learning to adjust. She no longer sleeps as well on the road, so we're at home more.

Pictures are not uploading at the moment, so I'll have to try again. We have been so thankful for great weather (in my mind that means sunshine!) the last 2 weeks, a few times of blueberry/blackberry picking, Connor rolling down his first hill (who ARE his parents, why is he just now getting to that??), eating at Red Robin - what a treat! - etc.

Moving forward, school starts tomorrow and my tutoring schedule is almost full. I was looking forward to the slow ramp-up, but God has different plans for me this year. My Mom just had a total knee replacement, so we are hoping we can be a help in her recovery for the next few weeks as well.

Campout

Our mini vacation - in our backyard!

Apparently camping is tiring, and "play alone time" turned into "nap time".
Sweet Katie, gotta catch sleep when you can.

My new tube, by Kara

Nothing tastes better than my delicious shirt - not even milk (which is why my Mommy gives me extra through my tummy).

Here's all the stuff for my feed. My port (surrounded by gauze, it's hard to see the actual port), the extension chord that then attaches to the feed bag. The feed bag is put into this automatic pump. The automatic pump is pretty amazing except that Mommy has to add formula to her milk to make it work (bummer!) so we only use it overnight. Although last night it still had alarms and woke everyone up even with the formula... hmm...
Not pictured is the big syringe to rinse out my extension chord after the feed is done. It's a miracle my Mommy is still sane! (Thank you, God!)

P.S. Don't I have cute purple diapers? Thank you, Mimi & Papa! We love them.

Cute Conversation

So, I normally don't blog on Sunday mornings but had to share this before I forget (and will have to write in their journals). Several cute things in the last few minutes. I'll share them all (pardon me if it's too long, proud Mommy!!)

J(Jeremy): We have different places at the table today for Katie and Kara.
(Katie is now next to Connor)
C (Connor): Hooray! I get to hold hands with Katie!
K (Katie): *while running into kitchen* I get to hold hands with Connor!!

then they helped put plates, forks, etc on table and sat at their seats to await "break-swift"
K: Oh, Connor ouch-ied my foot!
C: It was an accident, so, I'm sorry.
K: I forgive you.
C: No, it was an accident, it was not sin. So you don't say I forgive you, you say it's o.k.

A minute late, Katie made some comment, and Connor responded "Good!" Jeremy was chuckling, so I told him that we're working on responding to comments, and I gave Connor good words to use like "good" "o.k." "that's good" etc. Man, guess I am often teaching "Meg's lessons in manners". Never thought I'd see the day!

Two sides to every coin

I just love this beautiful face!

Here is a picture of her "G-tube". For lack of official terminology, I will call this the port. We open it to insert her tube with milk when she needs extra mLs for a feed. The gauze under is to protect her skin (it's very red and "ouchy", but thankfully not infected). We shouldn't need the gauze forever, but we'll see. It's healing a bit "wide" so we are trying to keep it stable so it will heal closer to the tube.

The NG/G tube coin:

We were given the "green light" to go ahead and start using her G-tube at her post-op appointment yesterday. Of course, she had pulled her NG tube out overnight (Wed. morning) and had part of her feed all over her clothes. The other side of that coin is that she slept through it - hooray.

Positives - no tube in the nose and down the throat, no tape on the face. We can now kiss whichever cheek we want. Hope I don't take that for granted in the future! It was quite strange to go to a Doctor's appointment today and not be asked about Kara. A bit sad because I do enjoy sharing what a miracle she is.

Negatives - she can still pull the tube out (she did this morning, first time I fed her). Not the "port" that is in her tummy, but the connecting tube. At least I'm assuming she won't pull out the port! And we have to get her connector primed with milk (so we don't pump her full of air) before she goes down for the night - even if we aren't going to feed her again for an hour or so.

The Katie potty-trained coin:

Positives - Katie loves her "daisy underwear". Is doing a great job all day and night. I only do diaper laundry every other day (instead of every day), and Katie's getting old enough that her diapers were not very pleasant. Enough said.

Negatives - Mommy has to drop whatever she's doing (pumping, feeding Kara, changing a diaper, or eating at a restaurant while feeding Kara) to take Katie potty. She can't get on the potty without help.

The Kara getting older and stronger coin:
(A friend mentioned to me back in May that maybe we should get together in August when things calmed down a bit. Since we came home in March, I have known that for Kara's first year, things will only get harder so we got together in May! I sigh and I laugh when I reflect on the fact that I was correct.)

Kara is now eating much more by bottle:
Positives - Hooray! She's getting stronger, and more "normal" - I don't HAVE to travel with her pump for her to get enough calories to make it a few hours.
Negatives - She used to eat for about 4 to 5 minutes, I'd put her on her pump and I'd pump for her next feed. Now I'm spending the whole time feeding her and then "fitting in" 30 min pumping some other time.

Kara's breathing rate (and therefore her caloric need) has lowered and is close to normal:
Positives - Recovery, she has energy to grow and develop as well as breathe, and can eat better. n She does not need "fortification" (powdered formula) added to her milk. She is eating much better with just my milk, her system is handling it better and she seems hungrier (i.e. more motivated to eat).
Negatives - She sleeps less (about what the average baby does), so I spend more time moving her from place to place or carrying or entertaining her. Our feeding pump does not work on just breast milk, so we have to hand syringe her feed into her if she does not eat everything.
Positive - We are choosing to "fortify" overnight so we can still use the pump. Looking at dropping her nighttime feedings here soon

We are so thankful for each of our coins and will find the positives of the "Kara mobility" and "Kara eating solids" coins when we get there. God is giving us the grace to be thankful for the positives and laugh about the negatives (most of the time!)

Thanks for sharing our journey!

One More Day!!

We can't wait. One more day of the NG tube. She has been using it until her surgery follow up to let her G-tube hole (stoma) heal. She continues to "claw" at her tape and tube. She is also antsy to have it gone. It is looking red around the incision site, and we're hoping that is irritation. It could be from irritation or infection. So we've rigged up a gauze/tegaderm/tape combination to try to keep it off her skin and keep it still.

She is eating well. She was not allowed to eat for approx 32 hrs, so I was SO happy to give her a tiny 1 oz bottle of pedialyte. Just felt like I was actually doing something for my baby. Then we switched to 1 oz milk (3 hrs later) and increased feeds slowly to make sure her tummy could tolerate it. Once we "passed" that test at 9 p.m., we were discharged from the hospital at 11p Thursday night. (I thought that was preferable to another night of being woken up every hour by the baby next door!) Jeremy let me sleep in Fri/Sat which was awesome.

The time at Children's was hard, but God did give some opportunities to give Him credit for His plans in Kara's life, as well as the grace He's given us. I also had some chances to have compassion and look a bit more outward than inward as I heard of very challenging medical situations. We are truly fearfully and wonderfully made, and when one little piece isn't formed just "right" (although obviously in God's plan it is right)... disaster ensues!

Here are some pictures:

The kids love their goggles (wore them to the airport yesterday to pick up Papa and Mimi)

Just happy to be in the room with someone!

Success! Got Kara to go back asleep.

Listening to the "ocean"

Both kids love to have Kara on their lap... look!
Houdini in action, the tube is out! Red alert!

Recovery

Kara is doing well as she recovers from the g-tube procedure. She is enjoying chewing on all the new toys at her disposal, her drain tube, her heart monitor cords, and other tubes that are taped to her. Kara is scheduled to come home tomorrow, Friday.

She has started to receive food at a measured pace per doctor's orders. They want to make sure she can handle food before she is allowed to come home. Her last feed she hungrily took 95 mls by mouth! Her normal feed volume is 120 mls.

Meg is doing well but tired. Kara has not been sleeping as soundly and their 'room mate' has had a hard time sleeping at night. Please pray for Meg that she would get rest and rely on the Lord for strength.

Connor and Katie are doing better, Katie more so. Connor is just now gaining his energy back.

Please continue to pray for Kara's recovery. Also pray for Meg and I that we would have patience and strength to care for all the kids this weekend.