Sunday, May 30, 2010
May 30, 2010
Both babies are still intermittently drinking their full bottle. Tenley's reflux and/or allergies are still bothering her and are still causing her to be congested, making it difficult for her to eat. It's only been a few days on the new allergen-free formula so it's just a waiting game for the next week and a half to see if her congestion lessens and her eating increases.
Will in his cute monkey outfit
Will sleeping on Daddy
Tenley in her ducky outfit
Tenley saying "hey, don't I know you?"
Thursday, May 27, 2010
May 27, 2010
Aunt Jen and Will
Uncle Curt and Tenley
Sleeping Tenley
Will and his mobile
Wednesday, May 26, 2010
William and Tenley
I remember the days when we heard other babies cry and were envious....Turn up the sound for your listening enjoyment.
Monday, May 24, 2010
May 24, 2010
On Friday, Will was fitted for foot splints. When he goes to stand, he keeps his feet curled up (referred to as "tone"). For preventative purposes, they decided to give him splints. He wears them for about 3 hours at a time with a 3 hour break in between...just enough time to get his muscles use to being unclenched. He passed his eye exam with flying colors and doesn't need another one for 3 whole months! He weighed in at 7lbs 12ozs. The bottle feeding is still sporadic...he drinks a whole bottle, then only does a little bit from the next one. If he could just consistently eat full bottles... As far as the "snip, snip" is concerned, it might not happen...decisions are being made by mommy and daddy as to whether or not they actually want to go forward with the procedure.
Tenley likes to sit in a little chair while eating to help minimize the reflux. Her congestion and reflux are not completely gone but mommy says its not as severe. She's less fussy during the night and sleeps pretty much the entire night (which the night nurses are very happy about). Thursday is when they will be moving the feeding tube back to the normal postion and starting with the PH probe. She weighed in at 6lbs 12ozs...exactly one pound less than her brother.
Thursday, May 20, 2010
May 20, 2010
For starters, both babies are now on a fortifier when using the Simply Thick/"source" mixture due to the Simply Thick not having as many calories as just the "source" milk on its own. When they are being tube fed, they will have oil added to help with the weight gain.
Will - his brain scan results showed his clots were going down (yay!) and the ventricle size was unchanged...meaning no swelling (yay!). There was definitely a noticeable area of prominent brain cell loss - commonly an indicator of some sort of learning complication on down the road (for example, ADHD or just being a bit slower to grasp a concept). The full impact, if any, will likely be unnoticed for years to come...and the brain does sometimes have a way of circumventing cell loss within this area.
Will is also infamous for being awake 5 to 6 hours at a time and will then be absolutely zonked out...so much so that he doesn't even wake up with cold water on his face. So, when he is awake, they will let him eat however much he wants whenever he wants. They will then let him sleep for up to 5 hours. If after 5 hours, he won't wake up to eat, then he will be fed via feeding tube.
Tenley - her reflux and congestion are still pretty big concerns. After she eats, she coughs and bubbles up at the mouth. With the "source" milk alone, she will completely turn blue...absolutely frightening mommy and daddy. The game plan as it stands now...they are going to put her feeding tube in past her stomach for a week to see if the reflux symptoms still occur. Every feed for the next week will be through this feeding tube. After a week, they will move it back to the normal spot and also insert a PH probe for 24 hours to register when/if the reflux happens and the PH levels. If it is found to be reflux, then she will likely need surgery.
So, it doesn't sound like anyone is going anywhere for the next few weeks. As Uncle J said..."it's nice of Tenley and Will to keep coming up with stuff so they can stay along-side each other this whole time."
Wednesday, May 19, 2010
May 19, 2010
Two Cuties
A sleepy daddy caught napping with his baby girl
Monday, May 17, 2010
May 17, 2010 - 4 Months Old
Even with their sporadic eating habits, both babies managed to gain weight last week. William weighed 7lbs 4ozs and Tenley weighed 6lbs 6ozs. The goal this week is to have Occupational Therapy continue experimenting with the correct mixture of "source" milk to Simply Thick so they start eating their full feeds.
Will bottle feeding
Tenley bottle feeding
Friday, May 14, 2010
May 14, 2010
Now for the feeding update...The babies didn't start on the new bottles until yesterday at noon. They had every feed yesterday after noon via bottle and every feed stayed down (yay!) and no coughing occurred (yay!). The downside is that the actual amount they ate didn't increase so they are now on every other feed being a bottle (with the other being via feeding tube) until they can get the mixture just perfect enough so that they want to gobble all of it down. That's all I have for now....just waiting for some new pics to be sent my way....hint....hint :)
Wednesday, May 12, 2010
May 12, 2010
There are definitely still some eating concerns. When they bottle or "source" feed they keep coughing (due to the splashing in the throat syndrome they both have) and therefore do not get enough milk. Formula works but it has to be non-dairy and mom has worked so hard to collect refrigerators full of milk that it would be a shame to waste it all. The most obvious point to keep them on "source" milk is the tons and tons of scientific evidence proving that "source" milk is sooo beneficial for preemies. The NICU does not allow Simply Thick (a thickener added to "source" milk to reduce the splashing) due to a NICU baby years back passing away shortly after starting the product. However, babies in the nursery (full-term babies) use this product all the time with little to no adverse effects. Since Will and Tenley are both 6lbs or more and are over 40 weeks gestational age, mom feels it would be safe at this point to see if using the Simply Thick helps get them drinking the "source" milk and will get them home! After verifying with the Dr that she consents, the order was put in.
Tonight at 6pm is suppose to be their first feed using the "source" milk and the Simply Thick additive. Daddy is there to witness. If all goes well, they will think it tastes yummy, it's thick enough that they don't cough, and they can come home after consistently proving themselves.
Monday, May 10, 2010
May 10, 2010
Will also enjoys formula but doesn't seem to be as picky about the dairy vs. non-dairy. With his first formula bottle yesterday he ate more than his recommended amount of food and he was still hungry afterwards! Will weighed in at 6 lbs 12 ozs and celebrated by pulling out his feeding tube...
The moral of the story is...to get these babies home, formula is the name of the game. Neither seems to "source" feed very well but both at least get half of their feed (if not more) during each bottle feed session.
Sunday, May 9, 2010
Happy Mother's Day!!!
Before I was a Mom -
I slept as late as I wanted and never worried about how late I got into bed. I brushed my hair and my teeth everyday.
Before I was a Mom -
I cleaned my house each day. I never tripped over toys or forgot words to a lullaby. I didn't worry whether or not my plants were poisonous. I never thought about immunizations.
Before I was a Mom -
I had never been puked on - Pooped on - Spit on - Chewed on, or Peed on. I had complete control of my mind and my thoughts. I slept all night.
Before I was a Mom -
I never held down a screaming child so that doctors could do tests...or give shots. I never looked into teary eyes and cried. I never got gloriously happy over a simple grin. I never sat up late hours at night watching a baby sleep.
Before I was a Mom -
I never held a sleeping baby just because I didn't want to put it down. I never felt my heart break into a million pieces when I couldn't stop the hurt. I never knew that something so small could affect my life
so much. I never knew that I could love someone so much. I never knew I would love being a Mom.
Before I was a Mom -
I didn't know the feeling of having my heart outside my body. I didn't know how special it could feel to feed a hungry baby. I didn't know that bond between a mother and her child. I didn't know that something so small could make me feel so important.
Before I was a Mom -
I had never known The warmth, The joy, The love, The heartache, The wonderment or the satisfaction of being a Mom. I didn't know I was capable of feeling so much before I was a Mom.
-Anonymous
To Becky on her first Mother's day and to all Mothers: You are loved.
Thursday, May 6, 2010
May 6, 2010
Mommy walked into the room today and a nurse started saying "mommy, your son is over here". She assumed the nurse was talking to someone else because neither baby has ever left the 1 foot parameter around their incubator. When she didn't see Will in his normal spot, she looked over and saw a "wireless" Will hanging out with the nurses, wide awake. No leads, no feeding tube, nothing. Will was apparently "mackin' it" with the nurses!! He was wide-eyed and very alert. He would cry and cry until someone would pick him up. When they would go to put him down, he would start crying again. The nurses didn't want Will to wake up Tenley (trust me, when she's sleeping you let her be) so they just picked him up, disconnected him, and brought him over to the corner where all the nurses were so he could hang out. Will also had a good "source" feed today - over half!! His eye exam went well ... he does have rhetenopothy but it's the lowest level (stage 1 zone 3) so all that's required is a follow-up exam in a few weeks. We also found out that his Phenobar level will never be increased, which is great news!
Could he be any cuter?....
Tenley had a full bottle today with the Occupational Therapist in 30 minutes!! She still has some congestion, even after the round of steroids. If it doesn't get any better, ENT will come back next week and re-evaluate. Come on Tenley...you're sooo close!!
Chubby cheeks!!...
Tuesday, May 4, 2010
May 4, 2010
Sunday, May 2, 2010
May 2, 2010
Tenley's butt rash looks much, much better. It was either the butt paste or the air out time...but I'm sticking with the magic of the butt paste ;) Tenley was up all night Friday wanting to be held, so the nurse had to spend most of her evening hours with Tenley. I'm thinking this may be due to the 2 hour nap she had earlier in the day in Uncle J's hands. Just look at her, she's in a deep sleep...
William is doing status quo. He's still tired during the day so the "source" feedings don't occur as frequently as the doctor's would like. Once his brain bleed clots dissolves he can hopefully come off the Phenobar which is making him a bit more drowsy. I was fortunate enough to see him on a day when he was wide awake...
And now for some additional pics as chosen by the blogger (there are LOTS out on the snapfish site right now from last week...I'm just posting a few each day from that batch)
http://www2.snapfish.com/comcast/thumbnailshare/AlbumID=3919855009/a=2117318021_72699886/