Wednesday, June 30, 2010

June 30, 2010

Cute baby pictures...yay!!!

"I'm doing my Physical Therapy...what?!"
"Has everyone seen the funny face I make...watch, watch..."

Monday, June 28, 2010

June 28, 2010

Now, if I were a bettin' man (which I am neither a man nor someone who likes to gamble) I would say there is finally a light at the end of this tunnel. The exact date is still yet to be determined...your guess is as good as mine at this point; however I'm using this as an opportunity to reintroduce the "Kinloch-Ready Recipes" link showing on the right hand side of the screen. If you've been wondering what you can do to help this family out, that is your one-stop shop for an answer. The new family is absolutely food-less. And, with mom now eating small amounts of real cheese due to neither baby having an allergy, it makes it even easier to cook for them. These recipes are already taste-tested. That being said, if you have another low-carb (sugar-free) meal, please feel free to make that. The recipes listed are just for those of you, like myself, who like easy recipes. And again, bringing a meal over is a great excuse to see the cuties in person (believe me - these pictures don't even hold a candle to what they are like in person...although I may just be a biased Aunt).

Since Will's stomach was not as small as Tenley's, the surgeon went ahead and put him on the compressed feeds with his sister today. That means they will be getting their full feed during a two hour period of time. If that goes well after 24 hours or so, they will reduce it down to 1.5 hours and so on until they are eating all their meals in a normal amount of time. Today they tested out a five minute "from the source" feeding. Both babies did really well although Will stopped after awhile to stare and smile at mommy.

Tenley had a car seat test last week - they have to be able to sit in the car seat for at least an hour with no D-Sat's or Brady's. She passed with flying colors, well, she fell asleep for almost 2.5 hours...same thing. Will is going to have his test this evening. On Wednesday, they have a swallow test to determine if they have any issues still with swallowing or aspirating during feeding.

Sunday, June 27, 2010

June 27, 2010

Babies and parents are both doing well. Tenley is getting ready for her compressed feeds to begin tomorrow and Will is still being a rebel - staying up all day one day showing everyone how cute he is, then being pooped the next day and sleeping the day away.


Friday, June 25, 2010

June 25, 2010

Well, I don't have much to update on. Both babies are still on the 24 hour continuous feeds and are doing well. They got moved back to the Satellite room so they are back to a room they are more familiar with.

Will - before the surgery (sorry, I ran out of pics)
Tenley - on father's day

Wednesday, June 23, 2010

June 23, 2010

Will had a bit of a rough day yesterday. His epidural came out - which isn't horrible because he was due to have it evaluated and removed later that afternoon. So, since his epidural came out, he was allowed to have his crib back and be held (that was the good news). In addition, his IV line closed up and his other 3 limbs had already been tapped so they had to put the IV in a "last resort" spot...his head. So, mommy came in during his physical therapy session (not expecting him to be in physical therapy because he was still supposed to be in his bassinet due to still having the epidural in) and he had an IV line coming out from his head. In addition, he was screaming his head off. The physical therapist said he just started up...he was doing fine in the beginning. So, they checked him to see if maybe he just had a dirty diaper (he had not had a bowel movement since Wednesday). When they went to check, they noticed his G-tube (feeding tube) had come out! So, without having the epidural for pain relief, they had to quickly put it back in. Once it was in, they gave him some Tylenol...he finally relaxed, had a bowel movement, and was able to fall asleep. PHEW! He is currently taking 28ccs/hour of food continuously over a 24 hour period. Next Wednesday they will compress the 28ccs over 2 hours and work their way down from there as long as his stomach handles it ok.

Tenley is on 25ccs/hour of food continuously over a 24 hour period. Next Monday they will compress the 25ccs over 2 hours and work their way down from there as long as her stomach handles it ok. She had an aspirate this morning after they gave her the daily Iron and Vitamin supplements so they are going to give her one at time from now on to make it easier on her tummy.

Tuesday, June 22, 2010

June 22, 2010

I'm not getting my daily baby update until later tonight. Here are some pics of the babies after their surgeries...

Momo and Will
Tenley

Monday, June 21, 2010

June 21, 2010

The babies are still progressing well. Will has done well on 5ccs of milk an hour and is going up to 10cc's. Tenley is up to her full feeds (continuously...not all at once) and has even had it increased slightly to adjust for her weight gain. Will still enjoys crying for the nurses' even when he doesn't really need anything.. he just likes the attention. As soon as the nurse comes over and gives him a little attention, he falls right back asleep.

Will sleeping peacefully on Father's Day
Tenley finally reunited with her birdies and crib

PS - (Uncle J here...)Pssssst...It's Rachel's 30th birthday today.

Sunday, June 20, 2010

June 20, 2010

Tenley and Will are doing great. Will was doing well on his Pedialyte yesterday so hopefully today he will be going to milk. He slept most of the day but when he was awake he just wanted a finger to grab onto so he could fall back asleep.

Tenley had a good poo (which is a good sign of everything doing what it's suppose to internally). Her feed is being increased by 5cc's every 6 hours until she reaches her full feed. Once on her full feed they will start trying bottle feeding again. She is due to come off her epidural today, which means daddy may be able to hold her for the first time since Wednesday! Happy Father's Day, Bill!

Friday, June 18, 2010

June 18, 2010 Part II

Will's surgery went just the same as Tenley's....successful! It was quite the relief to see his bright, blue eyes after 3.5 hours of surgery. He didn't even go on the nasal oxygen - he went straight from being intubated to breathing on his own. We are still trying not to get too excited with his progress due to his history of quick progress then quick decline thereafter. However, as of 7pm this evening, he was off to a great start. While he was under, he got the "snip snip" taken care of as well.

Tenley is doing well considering her situation. She started on 5cc's of milk per hour early afternoon and so far has done well with that. When she's sleeping, she's out like a light. When she's awake, she has waves of pain but still manages to smile every now and again. She's on Tylenol every 6 hours or so for pain (along with the epidural) however every now and again she puts her lower lip out and pouts...usually followed with a heart-wrenching scream sounding very much like the word "OWWWWW!!" Hopefully tomorrow will be a better day for her...usually the first full day after surgery is the hardest.

June 18, 2010

Grandpop and I are getting ready to head down to the hospital for the day but I wanted everyone to know that Tenley was still doing great as of last night. She is completely breathing on her own (not even on nasal oxygen) and slowly had Pedialyte throughout the night to get her stomach ready for milk. If all went well last night, they will start giving her small doses of milk throughout the day today. Her total operating time was 2 hours, however pre and post-op work made the total start to finish time 3.5 hours.

Will is now up to bat. He has been off food since roughly 4am in preparation for his surgery today. Due to his brain bleed, he may be on the breathing machine (ventilator) longer than Tenley, so mom and dad are prepared for a slower recovery time for him. Good luck, Will!

I'll try my hardest to log on tonight and give the update on Will. Becky and Bill are truly thankful/grateful for all your kind words and support.

Wednesday, June 16, 2010

June 16, 2010

You'll be glad to know that an 8 lb Ms. Tenley is doing a-ok. The surgery went well. The surgeon did note that her stomach had shrunk a bit due to bi-passing it for the last week to reduce the reflux, but thats no biggie. She is currently on some Tylenol and a constant epideral drip into her spine to lessen her pain. Over the last few hours she has started showing a few more signs of discomfort so they are re-evaluating her dosages. For now, the Doctors just have to closely monitor her pain levels for the next few days. I'm headed up tomorrow night so I'll make sure she's taken care of ;)

For the surgery, she had to be intubated - back on a breathing assistance machine. It was stated best case scenario would that she would be intubated over night with the possibility of it coming out the next morning. Well, she is no longer intubated and is breathing just fine on simply nasal oxygen. Good job Tenley! If she can keep this up for another 48 hours, they will begin slowly introducing food.

I hope Will's surgery on Friday goes just as well...he is a whopping 9 lbs!

Tuesday, June 15, 2010

June 15, 2010

Tenley's surgery is late tomorrow afternoon. Please keep her in your thoughts and prayers. I'll udpate the blog tomorrow as soon as I hear something. For now, more cute baby pictures...




Monday, June 14, 2010

June 14, 2010

Soooo many cute pictures....I don't have a lot of updates so what great timing!

Will and Tenley were in a stare-down contest during Physical TherapyPhysical Therapy
Will still loves his mobile
Tenley's just chillin'

Sunday, June 13, 2010

June 13, 2010

The babies are patiently awaiting their surgeries. In the meantime, they have been put on continuous tube feeds, the tube itself was moved down past the stomach a bit and there are no more bottle feeds. They were still vomiting/spitting up a great deal so these changes are definitely making life a bit more comfortable for the twins until their surgeries.

Tenley loves her singing birdies

Thursday, June 10, 2010

June 10, 2010 - Part II

Easy news first...both babies did well with their allergy tests. Will had a small trace of allergies for beef, nuts and chocolate but none of these should be an issue since he shouldn't be eating these foods anyway until he's much older. Tenley showed no sign of any allergies.

The reflux test results told a much different story. A PH level of 4 is considered highly acidic. Normal babies reach a PH of 4 maybe 5-10 times in a 24 hour period. Tenley reached a PH of 4 over 200 times and Will reached it over 250 times. All this means is that both babies are now proven to have very severe reflux and will require a three hour surgery to help minimize, if not eradicate, the reflux. They are trying to schedule both babies for the same day but they wont know for sure until somtime later next week. The surgery is called "Nissen" and basically what it entails is wrapping a part of the stomach around the esophogus which then creates a one-way valve to stop the stomach contents from going back up the espophogus. After the surgery, they will need to be intubated again (either over night or for a few days) until they can prove they are breathing on their own again. At first, this wrap around the esopogus will be very tight and will therefore make it difficult for them to vomit or burp. So, they will also be getting a G-Tube inserted which not only serves as a "venting out" mechanism but it will also be used for tube feeding once the babies go home. G Tubes are great for babies who don't take bottle feeding well, however they often times become infected and fall out so it's just an extra something to keep mommy and daddy busy until they are fully on bottle feeds and can have it removed. Some babies have the G Tube in for 4 months while others need it for years

For now, they are off the allergy-free formula (which Will never liked that much anyway) and have every feed via feeding tube except for one time a day when it's a bottle full of mom's milk.

June 10, 2010

I will have a nice, long post tonight....I left my notes at home and I want to make sure I don't leave any part out. There was a lot discussed in their meeting with the surgeon yesterday (allergy test and PH test results) so stay tuned for that update. To tide you over for now, since it's been a few days, here are some cute pics...


Monday, June 7, 2010

June 7, 2010

Tenley and Will are both off their Prevacid (reflux medicine) in preparation for their PH probe tests today and tomorrow. They've been Prevacid-free for a few days now and they pretty much either spit up or vomit after every feeding at this point. This makes mommy and daddy sad, but they have to stay off the med for more accurate test results.

Sleeping babies
Will in his Physical Therapy chair admiring the mobile
Happy Family

Friday, June 4, 2010

June 4, 2010

Tenley had a very successful eye exam. Her eyes are considered to be in a stable status and therefore do not require another exam for a month or so (her and Will are now both on the same eye exam schedule). She decided last night that she wanted to eat a full bottle for the first time in awhile! She weiged in at 7lbs 10ozs.

Will had an EEG yesterday. The reults showed no proof of any seizure activity. They just wanted to test him again since they haven't been increasing his medicine even though he's been gaining weight. He weighed in at 8lbs 7ozs.

Both babies were seen by a surgeon to evaluate whether or not they will be discharged with G-Tubes (a feeding tube that is surgically inserted so they can still be tube fed when they get released if needed). It was determined that they both need a PH probe test (which lasts a full 24 hours) in order to move forward with any decision. Tenley's PH probe test is Monday and Will's is Tuesday. They will meet with the surgeon on Wednesday where they will discuss these results and hopefully the allergy test results (allergy test results take up to 10 days).

Thursday, June 3, 2010

June 3, 2010

I apologize for my lack of blogging. Moving is a bit time consuming and REALLY exhausting.
Not too much status-wise to report. Both babies had blood taken Tuesday to determine if they have any allergies. Due to their age, the test will show true positive results, but could show that they aren't allergic to something when they really could be. It's just worth a shot at this point to see if they do get any true results showing allergies.
Tenley is still really congested...it's only day 7 on the allergy-free formula so there's still 7 more days for improvement. Will is still doing his infamous spree of eating really well for multiple feeds then refusing to take much at all from the next few feeds.