April 30, 2010

My apologies for the delay in postings. Thursday was a busy day and today I was in MD with the babies most of the day. To all those who haven't actually seen Will and Tenley and have only seen them via pictures....wow....they look absolutely adorable. Mommy is a bit tired - with pumping and "source" feeding taking the majority of her 24 hours. Uncle J brought mommy and daddy a bunch of food which they obviously enjoyed, seeing as half of one of the meals is nicely resting in their bellies as we speak ;) We're just glad mommy is finally eating something she likes!

Tenley did really well again with her "source" feedings...her feeding tube was out most of the day until mommy had to leave for the night. She makes the cutest little noises (and I don't just mean the snorting noises she makes because of her nose congestion). She fusses most of the day, generally just wanting 100% of someones attention. Uncle J was more than happy to oblige...she melted right into his big hands and stayed calm for almost two hours! Aunt Rachel got to change a lot of her poo diapers - she's really talented at messing up several diapers during one changing session. We started applying the butt paste today so hopefully the diaper rash will soon be something in the past. She's definitely smaller than her brother, but don't let her size fool you...she has quite the grip!

Will is just such a little sweetie - as long as you aren't trying to change his diaper or take his temperature. He was awake for a majority of our visit today which was quite a treat. Usually he sleeps during the day and is awake later in the evening. He loves to sway from side to side while in your arms. Be careful though, he only poos once a day so when he does....wow...it's pretty impressive. Imagine a cup-size portion of pea soup... He had two really good back-to-back "source" feeds today but he was tired for his third so he got tube feed. The 50CCs all at once seems to be too much for him so they are going to feed him that amount over a 30 minute duration now to get him use to that amount of food.

All in all, great visit. I have a lot of pics to post, but here are just a few for now...

Grandma Lewis and Tenley
Will
Two Cuties

April 28, 2010

Tenley had a great day yesterday. She had her feeding tube out for over 6 hours and was only relying on mommy's food during that time. Her feedings went really well...they only put the tube back in since mommy couldn't be there for the 3am and 6am feeds. She had her eye exam yesterday as well. One eye had major improvement ... they aren't even considering that eye an issue anymore. The other eye down-graded to a grade 1 (lowest there is) so hopefully in two weeks when she has her next exam, that will resolve itself as well. She had a swallow test and a GI X-ray today so we'll get the results for that soon. She didn't really like the GI test and ended up scratching herself on her arm!
Will was pretty sleepy yesterday but was more awake last night. He had a good bottle feed this morning (with the rice in it to thicken it) and ate roughly 20CCs. We're basically just waiting for him to become more awake so he can have more mommy feeding opportunities. When he is alert, his mommy feedings go very well...he's just not alert very often during the day.

April 26, 2010

Tomorrow marks the 100th day of the twins living in the hospital. Geesh!

Here is the homework that the Developmental Therapist gave mommy and daddy... You can view it better if you pull it up on snapfish (http://www2.snapfish.com/comcast/thumbnailshare/AlbumID=2405406016/a=2117318021_4884556/) or save the pic to your computer. As a heads-up, the pic of Will's sign showing his weight was actually wrong. It has since been fixed to show the proper weight, so please don't get confused when you see his weight is under 6 lbs on the sign.

Will had a great mommy feed tonight...he had at least half of his full feed...great improvement. They tried giving him a bottle today and that was pretty successful too. It was mixed heavily with rice to make it nice and thick...he ate it up; however, he ended up eating more from mommy so the occupational therapist thinks he may just be one of those drinking-from-the-source type babies. He was in great spirits today and was awake for about the longest amount of time mommy has yet to witness.

Tenley keeps pulling her feeding tube out...its not really pulling as much as working her tongue around it and having it gently ease out little by little. Although this gives her something to do, she still needs to have her feeding tube in, much to her disdain. When the nurse puts it back in, she turns purple from screaming so loud. It's not painful...she just doesn't want the tube in anymore. Maybe that will give her incentive to bottle/mommy feed! Her rash was still pretty bad on her bottom today so she had some more "air out" time. Aunt Rachel bought her a big 'ol bottle of Butt Paste and is coming to put this diaper rash to an end on Friday.

April 25, 2010 - Part II

A few quick updates: Due to some recent diarrhea attacks, Tenley's diaper rash is back, along with some bleeding from her phisher due to the increase in bowel movements. She had some "air out" time last night for the rash so hopefully that helped out. The official weight for Tenley is 5lbs 3ozs!!! YAY!!! She hit the 5lb mark just in time for her 40 week due date yesterday. Her feeds have now been increased to 45 CCs and they are strongly encouraging that she has a pacifier in her mouth when she is tube fed to help her learn that a full belly happens when she makes the sucking gestures.

Will is up to 50CCs of milk...his weigh-in was 6lbs!! The rash on his belly and head are much better - skin-friendly detergent seems to be helping - however he will have the rash on his skin where his leads are until he can be discharged. They are slowly working with him on being more responsive to the sound of bells and/or rattles due to the results from the developmental study the other day.

April 25, 2010

Friday the kids were showing off their new newborn outfits to Grandpa Lewis. They have graduated from preemie to newborn size...yay!!!




more pics can be found at http://www3.snapfish.com/snapfish/thumbnailshare/AlbumID=3874170009/a=16759548_72699886/

April 24, 2010 - Twins Due Date

April 23, 2010

As of last night, Mom and Dad are officially the "proud" owners of a silver 2010 Honda Odyssey. A pic will be posted at a future date.

There was a question from the last post: "What is the sticky stuff and what are the leads that little Will is allergic to?" The sticky stuff is on the bottom of the leads which makes them stick to their skin. The leads run signals to the monitors showing their vitals (heart rate, temperature, etc). So, he has to have the leads on in order for the nurses to measure when he's having a brady, when he's cold, etc.

ENT finally came by last night and ran the scope through Tenley's nasal passages. There was nothing wrong medically, however her entire nasal cavity is extremely swollen. They will be treating it with steroids, along with her normal saline drops, for the next few days to see if that makes a difference.

Tenley saying "Hi!"
Will getting a bath
Will licking his sister's head
Cuties and Mommy more pics can be found at http://www2.snapfish.com/comcast/thumbnailshare/AlbumID=3865545009/a=2117318021_72699886/

March 21, 2010

Ok...long blog for you tonight since I wasn't able to get on the computer last night.

Tenley - Yesterday she did a bottle feed with OT (occupational therapy) and she only had maybe 8CCs and then she just couldn't breathe anymore. ENT came by and took a sample of her nasal secretion to test for any viruses which may be causing the congestion. Test results today showed no viruses. ENT was suppose to come by today and do a scope of her nasal cavity however they didn't end up coming...maybe tomorrow. In the meantime, the poor girl is toughing it out with one of the most clogged noses her nurse today has ever come across. Her bottle feed with OT today went a bit better. Slow and steady is the name of her game...in 30 minutes she was able to drink 12CCs out of her full 42CC feed. Keep it up girl...baby steps!

Will - Yesterday was yet another milestone for the new mommy...she was the victim to one of her babies eating too much. Will was drinking from mommy and I guess ate too much so, as I'm sure you now, out it all came...all over his newly changed outfit and mommy. Awwww. They are not going to do the rice in his bottle feeds anymore, it doesn't really do anything. His eye exam yesterday showed improvement (he went from stage 2 back down to stage 1) so he doesn't have to have another one for 2 weeks. Even though his head ultrasound was unchanged, they will not be doing another one for 3 weeks. He is definitely allergic to the sticky material on the leads, but they can't think of any way around it. Everything they try to do ends up not making the leads connect properly. His other body rash comes and goes and is referred to as atopic eczema.

They both got examined by Developmental Therapy yesterday. Basically, they do a bunch of tests to determine the preemies adjusted age. The older they are, the closer to their true age they become. To put it in prospective, at 15 months old they will just be starting to catch up with their actual age...until then, they are considered a negative age. Tenley scored fairly high except for the feeding test (totally expected) and her Tone. This was odd because tone usually isn't a problem of hers...they think she was just upset because of not being able to breathe. They could definitely tell Will had Tone and neurological damage but he didn't score too badly considering. He scored higher than Tenley on being able to make noises (grunts and moans...which is apparently a good thing) and he was also receptive to his Mommy's voice and Daddy's soothing touch in between tests. He didn't respond well when they rang a bell or shook a rattle (he would wave his arms around, tremor, and not look in the direction of the sound), however when he heard mommy's voice he didn't tremor and turned his head and eyes to look right at her. They have another round of tests in 4 months to see their progress.

April 19, 2010

Tenley is still questionable for getting a blood transfusion. She is acting more sleepy than normal and is having random brady's, however her blood levels do appear to be slightly increasing. Occupational Therapy is going to take a closer look at why she is so congested...she has a really short neck (thanks to her daddy!) and her double chin isn't helping her neck look any longer. They are just going to continue with the saline drops and minimal bottle/mommy feeds until her 40 week birthday (the 24th) and then have her repeat the swallow test and have another ENT evaluation.

Will's head ultrasound came back unchanged. Mom didn't get too much more information than that but is hoping to speak to the resident tomorrow. His mom feeds don't go so well...he takes awhile to latch and then when he does latch, he'll get milk up his nose and then jerk his head away (ummm....ouch!!!).

Here are some cute pics courtesy of MoMo and PopPop

PopPop and Will
MoMo with Will, Aunt Jen with Tenley
Will
Tenley

April 18, 2010

Not too much going on today. It was a bit of a frustrating day as far as their feeds were concerned. Will only had a few CCs of bottle milk before he started crying pretty badly and Tenley had a mommy feed (although they previously said she wouldn't be having any mommy or bottle feeds for the next few days to help clear her congestion) but she only had maybe 10CCs. Will's feeds are up to 45CCs and Tenley's are still at 40CCs.

Tenley's weight....4 lbs 13 ozs. Will's weight...5 lbs 7 ozs

April 17, 2010 - 3 Months Old

Wow...3 months old...1/4 of a year...wow.

To celebrate, here are some recent pics (you can tell because Tenley's feeding tube is in her mouth instead of her nose)

William

Tenley

April 16, 2010

Well, the mini-van excursion to Bowie, MD didn't turn out as planned (the guy repeatedly lied to Bill, Bill called him out on it, and then they left mini-van-less). So...back to the drawing board on that one. If anyone knows of a good deal on a 2010 or 2011 Toyota Sienna or Honda Odyssey, please pass the info along.

Today was family meeting day with the Doctor/Nursing staff...

Let's start with Will. The good news is that he is packing on the weight...he's almost "busting" out of his preemie clothes! Will had a swallow study completed and they determined he doesn't have reflux, but he does have something called nasopharyngeal - a typically self-resolving issue which causes milk to spray up into the nasal passages. When he bottle feeds, they will thicken the milk by using rice granules and will hold him upright. Since the milk is heavier due to the rice and he's straight up, the milk should flow down. When mom is to feed him, she will pump for the first few minutes then hold him upright instead of horizontal. Hopefully this helps get the little guy more comfortable with bottle/mommy feeds. His eye exams are usually his strong-point but it was found during this week's test that he is beginning to develop a low level of rhetonopothy, so he is being tested every week now. The rash on his head is looking much, much better and the rash on the rest of his body is being treated with hydrocortizone cream. He's only had two doses of the cream thus far but mom feels it is looking better already.

Tenley's nose is very, very, very congested - keep in mind that babies do not know how to breathe from their mouths, so it's kinda scary too. ENT (ear, nose, throat) examined her and determined her nasal passages are swollen. Her nose is very small (much smaller than her brother's) so thats not helping matters either. They decided to move her feeding tube from her nose to her mouth and she will not have bottle or mommy feeds (along with the saline drops they had already been giving her) to see if this helps her congestion at all. She might also need a blood transfusion next week due to having low hematocrite levels for the last week or so. The good news is that her bottom rash is looking much better.

April 14, 2010

Well, both mommy and daddy have to work today and tomorrow so no baby visits for today. They did find out that Occupational Therapy is working with them today to help them bottle feed better. The first attempt today only yielded 10CCs of food for each, and both of them had brady's and d-sat's during that time. I've been told that often times babies just one day "click" to the whole bottle feeding thing so, we're just waiting until that click happens at this point. Will's Dermatologist couldn't diagnose his rash so he is going to have the team evaluate him either some time today or tomorrow.

The big news for the day is that daddy is currently out with poppop getting a minivan. HAH HAH HAH...my sister has a minivan! ;) Although not the most driver- friendly vehicle due to its size, it's for the best given their situation and it will provide extra safety...I'm all for it!

For the two of you which voted for the twins to come home 3/31 - 4/13...it was very optimistic of you but you did not win (not like there's any prize to win here anyway). The majority of you voted for 4/14 - 4/20....the clock is ticking....

April 13, 2010

Will - His Occupational Therapist decided yesterday that the best plan of action for his constant muscle contractions is to put splints on his little arms. He will be fitted for the splints in the next few days or so. As far as the rash which is now all over his body, a Dermatologist has been summoned for an exam tomorrow - simply double rinsing the clothes is not helping the situation any. His eye exam went well today and his headscan will be sometime towards the end of the week. Last night, he had about half of his bottle feed - although he did have some brady's and d-sats.

Tenley - Her diaper rash is doing much better, although she still spends some time "airing out" during the day. I've heard good things about a product called Butt Paste so I couldn't resist passing this bit of new-found knowledge along to my sis today. Her feeds from mom aren't going too well because she has a congested nose, which along with her shortened tongue, is making this task quite complicated. Her bottle feed last night was about the same as her brothers - about half was eaten although there were some brady's and d-sats along the way.

April 11, 2010

Mr. Will was having a bit of a poo back-up issue on Saturday so he got a nice dose of some kind of suppository and out it all came... three times. Good boy, Will. His rash is acting up so his clothes are now being washed in the double-rinse cycle. He has being doing ok on the bottle feeds thus far...he'll take about 1/3 of the full feed and then have the rest fed via the feeding tube after some brady's and d-sat's. His first meal-from-the-source yesterday went really well but then he was tired for the second one, which is to be expected.

Ms. Tenley has her own poo issue, although it's the complete opposite of her brother's issue...she poo's so often that she has a bad rash on her bottom. To help her out with this, they have her lying on her belly - without clothing - with her bottom elevated up in the air. Directly under her is her diaper where (with the aide of some ointment) the poo slides down into. Poor girl...I hope this rash heals up soon...if not for anything but for the poor girl's dignity ;) She's also now on Prevacid because she displays some mild irritability and discomfort after eating. So far, it seems to be helping a bit.

April 9, 2010

Ronald McDonald House fed mommy and daddy well tonight. Phillips (a really tasty seafood restaurant) donated the dinner for this evening. There was lots for them to eat and they both took full advantage of this yummy opportunity.

Update on William's lethargic demeanor....it was not, in fact, due to high Phenobar levels as previously suspected. It was due to having a very low blood count (low hematocrit level). Typically, at this point in time, they wouldn't give a blood transfusion so that his body can get use to making blood on its own, however with as low as his level was, they decided to give one today at 4:30pm and another 12 hours after that. The good news is that even with his hematocrit level that low, he did a full 40 minute feed directly from the source! This made a mommy very happy and a certain baby belly very full .... he now weighs in at....5 lbs 2 ozs!!

You know that little string that connects your tongue to your lower jaw? Well, Tenley's is not as far back as it should be, making it very difficult for her to stick out her tongue (Will is going to win those battles I suppose). This also makes it even more difficult for her to drink from the source as it takes a lot of strength / energy with the shortened tongue range. Once she gets accustomed to drinking from a bottle, that will be her primary source of food...not mommy (although the bottle will be full of milk from mommy). This way, she will hopefully pack on the pounds quicker since it is easier to drink from a bottle-top as opposed to mommy. About two days ago they started adding oil to her feeds to help expedite her weight gain....speaking of which ..... 4 lbs 7 ozs!!

April 8, 2010

William seems to be causing problems today. He has been really lethargic all day and didn't even take his "fresh from mommy" feeding. They are currently doing a blood test to see if maybe his phenobar levels are too high, which would easily explain the lethargy. He is finally up to his full feed of 40CCs every three hours.

Tenley is part of a four-session study group for massage therapy. After the four sessions, mommy and daddy will take a survey to see how effective the sessions were. Her bottle feeding last night went OK. She downed half of it but started having a few little brady's so they fed her the rest via her feeding tube. They will attempt doing another bottle feeding again this evening.

April 7, 2010

Well, it must be a busy day at the hospital since I haven't heard from sis yet. In the meantime, I will post some additional pics for your viewing pleasure...

This is where cuties sleep
This is a cutie William sleeping
This is how a cutie Tenley yawns
Tenley waking up
A loving father
A loving mother
Tenley and Grandpa Lewis

April 6, 2010

Wow!!! How cute were those Easter pics?!!! What a great surprise...thanks for posting those.

Both babies had their eye exams and got good results. No more eye exams for two more weeks. Also, twice now (with some assistance) Mom has breastfeed both of the babies at the same time!

Will - Today was a big testing day for him. He had his EEG and head ultrasound. The ultrasound showed improvement, the clots are dissolving! The EEG showed zero evidence of seizure activity however his brain has an overall decrease in activity due to the brain bleed. So, they are keeping him on the Phenobar and actually raising his dose due to his weight increase. If they notice him being more lethargic then they will consider lowering it back down again. Once the brain bleed resolves (all the clots dissolve) then taking him off the Phenobar will be reconsidered. Until then, he has to stay on it. He's now off Zantec for his reflux and is on Prevacid and Arithomycin (sorry for any type-o's there) which is definitely helping...he can do big, full gulps of milk now without having any brady's (he almost gets 1/3 of his full feed during his sessions with mom!). He's off the continuous feed and is now getting full doses of 38CCs every three hours. During his last physical therapy session, they determined he had "tone" (common with brain bleed preemies) which means he likes to constantly contract his muscles. He was quite receptive to physical therapy though so we're being optimistic. Today was also his last day for being on the inhaler (Flovent) to assist with his breathing.

Tenley - She has finally found the joy in being held, so much so, in fact, that she is often times grumpy if simply laying in her crib. She was recently tested to see if perhaps she was aspirating into her lungs because she would brady and "d-sat" (have very low oxygen levels) during breastfeeds. The test showed this was not the case (however it was cut short due to her brady-ing in the middle of it), so they were advised by the Occupational Therapist to force her off during feeds when she has a big gulp or two to prevent this from occurring. Tonight they are going to try to bottle feed her for the first time in two weeks. She had two days of non-bloody stools however today she did have another one. Mom is still partially on the non-dairy diet but the Doctors are leaning towards this not being due to an allergy.

April 4, 2010 - Happy Easter

Sorry for the delay between postings, while Aunt Rachel and Uncle Jeremy get lost on Bourbon Street, dad and mom stopped by MoMo and Poppops for Easter dinner. Great mommom, Grandpop Lewis, Aunt Jen, Uncle Curtis, Allison and Jack were all there for a great Easter dinner. Tenley took a great feed this morning from mom, but was then too tired for her next feed, which was fine with Will, who got to feed from mommy instead, and did pretty well. Tenley is now up to 4 pounds and 4 ounces while William is weighing in at 4 pounds 13 ounces. Tenley is getting her feeds from mommy for every other feed now and William's feeds are over a half an hour now, and he's free to try it from mommy when ever he is awake.

Happy Easter Everyone!

Thank you to the Ronald McDonald House!


Tenley Staring Down William


Tenley and William


Tenley's Easter Bib


William's Easter Bib