What an amazing journey

I'm not positive why after not posting for over a year I am choosing to update this...but here goes. Evelyn is a vibrant and happy 14 (almost) month old. Other than being at the bottom of the growth chart, you'd never realize that she's been thru what she has endured...heck she, like us, was just along for the ride right. She fought through and came home on May 19th last year. Three weeks short of her original due date. She loves going on walks, eating and playing with her mommy, daddy, aunts and sister (and uncle Dan...can't forget uncle Dan). She chats with us in the car on the way to daycare. She learns something new every day. Last week her aunt Kristi taught her to blow kisses...before that she learned to point to her nose and meemaws. I love her, I love every little thing about her.

shameless plug... and making up for being MIA blogger

Greetings, miss Evelyn is up to 3lb3oz... doing awesome and its looking more and more likely that we will be seeing her in an open air incubator sooner than later. When? Not sure just yet...but she is doing awesomely. I would like to take this opportunity to plug the March of Dimes walk here in St Louis and the fact that we are putting a team together in her honor. However given the fact that the walk is next weekend we are unsure if we will be able to raise any to donate in her honor... but I did manage to raise $500 in 2 weeks for Relay for Life with Madeline last year, and we have 9 days so lets see what we can do. Here is the link, I am not going to do anything like beg you to do your thing, just take a look at it, understand what the organization does and if you feel inclined we would love you to donate with her in mind. Otherwise, Evelyn looks and acts like every 6 week old I have ever been around, just 1/3rd the size. She grabbed my nose at one point today and was just amazed at the noise I made at her. Well, I will try to update this regularly, keep her in your mind on a daily basis please...

Love you Evelyn.



http://www.marchforbabies.org/s_team_page.asp?seid=1659595

Week 3

Evelyn is officially 3 weeks old as of 3 hours from now... my how she has progressed. She looks at us regularly when we talk to her, she cries (pretty loud too) when she is upset or doesn't want to be fussed with. She spent nearly 5 hours out of the incubator on Friday chilling with mom and dad both. Finally over 2lbs, finally off the constant IVs that had sustained nutrition and medication until she was developed to the point of being able to get what she needs from breast milk. It is currently fortified with formula and she is getting about 150ml of that mixture per day (5oz) and digesting almost all of it. She has poopy diapers, she has tantrums...she loves when her daddy talks to her, she loves when her mommy holds her close. I guess what I am trying to convey here today is- she is a normal 3 week old... just in a tiny package. I sat with her today and rubbed her back and talked to her for nearly 3 hours, just her and I sitting in the room chatting...it is something I do with her big sister regularly, to find out how her day or week has gone, and as Evelyn's dad I want to know how her day and weeks are going... sure I can ask the nurse and she will tell me, but without saying a thing, I know from her how she's doing- great. I'd like to welcome all those that are friends and family of each of us to come and visit her now that she's more acclimated... however her mother and I have agreed upon some rules that we'd like you to stick to (some of which are the rules of the NICU, some of which are just us protecting our tiny little friend):

-health updates are to only be received from the nursing staff by Laura and I... just a matter of us being the ones that are in the 'need to know everything' category and everyone else being in the 'we will share what is appropriate' category.

-washing your hands for 2 minutes is not an option, its the law when you arrive. Alcohol foam is used for all entrance/exits after initial scrubbing.

-If your security tag does not say 'parent/guardian' DO NOT open the incubator. The 2 of us are just now comfortable with the idea that we are able to reach in and touch her, not quite to the point of being okay with others just yet.

-big one here... if you are coming up, make sure either Laura or myself are aware you are stopping by. Wanna see a cranky momma- be the reason she drove from Fenton and can't get back to see her baby girl and has no clue who is back there... ever seen the horn on my forehead- make me wait to see my tiny little lady. We love that everyone wants to see her, but the point here is that with the 2 person at a time max, we need to know who is there.

-2 people at a time at her bed side, period. The only SLIGHT exception is if Madeline is back there with both of us. This is not arbitrary.

Otherwise (and yes I am very aware I sound like the big bad wolf on these) we would love for you to visit and enjoy this little miracle that has graced us so soon.

Good night to my beautiful little princess... daddy will see you later this evening (since its after midnight).
love you Evelyn
Tim

Evelyn is 2...weeks today

Happy 2nd week birthday Evelyn. You have celebrated your first 2 weeks with a great deal of ups and a few downs. Sure you have had the occasional apnea episode, you do startle your mother and I by having the occasional O2 drop and the sometimes lagging heart rate, but overall you are strong and doing better daily. You have topped your original birth weight and are getting more and more active every time we are around you. You got to spend time with your big sister and I am pretty sure that was love at first sight. Feedings are going great and Evelyn is almost ready to come off the IV feedings and focus strictly on breast milk which is just another milestone as we progress towards the goal of her coming home. As the days get longer and we move through spring, you will have more time out of your incubator and in our arms... it really is the best feeling seeing her look up whether her eyes are open or not when she is being held. I am still nervous when I am holding her, but it is more in a 'oh dear I am a new parent" sense than in being afraid of the fragility of her condition. Sure she is my second child, but its been 7 1/2 years since Madeline was a newborn so it is just like I am doing it for the first time.

Well, that is all for today, just wanted to thank those that are still reading, I promise I will do a better job starting this week. Last week was big sister week for spring break. Back into a normal routine (well as normal as I can ever be).

good night Evelyn
Love you
Daddy.

Wednesday-Mid week update

I guess I should have said this in the original few blogs, but since I am back to work, especially this week with it being big sister's spring break week, blogging is about 19th on my priority list. However Miss Evelyn has had a great week and has had a good chance to bond with mommy while dad has been busy working. Today was a very big day for her- #1 she is back to 800gm for the 1st time since she greeted us at 840gm last week... what does this mean? She is starting to climb up in weight and that is an awesome thing when put into prospective of the fact that no matter how well she is doing overall, she won't come home under 2lbs. #2 Big Sister Madeline got to meet her face to face for the first time...and it may have been love at first site. #3 It was daddy's night to hold her kangaroo style... and that may be the best feeling of all. As for her week to this point, she has surpassed the 1 week mark and is doing quite well. I am getting more and more hope daily as she only has minor set backs if any with her breathing (keeping in mind of course that she has 28 week lungs, not 40 week lungs...they aren't always working at top levels). Speaking of her breathing, she was converted on Sunday from the CPAP to just high pressure air which is great progress. She also is getting breast milk regularly in 3 hour intervals (I'd say how much, but it may go up again by time I finish writing). This is something that is important to both Laura and I because of the immunities that breastfeeding can help develop for baby girl and once she does come home the increased bond that it will create for mom and baby. We know and are realistic about the challenges of a 27week preemie, we know that she is tiny right now and every day brings new challenges, but every day also brings new progress and hope. She has had her eyes open a ton this week, Laura has gotten a large number of photos and when the time is right we will share a number of them with everyone. For now though, know that she is a tough cookie, she has pretty blue eyes and her daddy's wrinkly forehead, her mommy's toes and the trademark Tim Stewart hands. We hear every day from a member of the NICU staff that she has so much character, and can you blame her... look at her parents and its hard not to.

good night Evelyn, Mommy and Daddy and big Sister love you.

Tim

Sunday-funday

Little Evelyn is snoozing away all bundled. Today was great so far. She got to meet her Aunt Patti and her Uncle Dan's family. Statistically she is starting to show the progress we want to see. She for the 2nd day in a row gained 50grams of weight and is now right around her birth weight. She's also showing more alertness and those strong personality traits she garnered from both ends of the gene pool. Saturday I got to change her tiny diaper and I have to say no matter the size, no kid enjoys diaper time. It was cute as she pushed off away from me but reassuring that she is just like other babies...even if she is 1/4 the size. Her nursing staff every day tells us she has so much character and that despite micro preemie status she is showing great overall development. There will be hurdles, there will be setbacks and I think she has the right set of parents to handle them as she grows. Next week (or this week depending on how you start your calendar) is big sister week in more ways than one. I will likely introduce the dynamic twosome some time later in the week, but I also have Madeline all week, so it will be more about making sure big sister knows she's just as important. Thank you to everyone for reading about her journey to this point and the continued support for all 3 of us. It's been a fun first week... Just thinking about the fact that 168 hours ago we were debating doing what we could to delay her to Wednesday to develop more. So glad I've bonded so much with her already.

love you
Tim

it gets a little tougher now

With the discharge of Evelyn's mom and my return to work, today was the start of the tougher part of her time at the hospital. Sure we still have 24hr a day access as her parents, and trust me, if not for the necessity known as a paycheck and showering I would be there constantly as would her mother. However the reality is that we both have to get back into a routine. First note for today, mom was released from Barnes on Friday which is a big step. Blood pressure will probably still be an issue for a while and it will contribute to the debilitating migraines that she has dealt with recently, but she is home for a little recovery time. We did get some good news regarding her leave from work as well and she was up moving around more today. On to Evelyn, she gained about 40 grams in the last 24 hours so we are starting to see a bit of a bounce back. She only had 1 episode today until they switched her to the nasal prongs which seem to cause her to have a little more trouble. I got to hold her for an extended period on Friday evening and it was one of the most amazing things to date... to think that she is smaller than the soda I drink almost daily, and she is a person. She has a ton of personality. Nuzzled up into my chest and was making very cute little noises during that time... but was also so relaxed and at ease that she decided it was nap time, which contributes slightly to the apnea bouts she has and was a little unnerving but it was still a great time. I am amazed daily by this little champ and hope that we continue to have days like yesterday even if it means less Cardinals baseball for dad. The best part of the day was her looking up at me at one point with her bright blue eyes and then putting her head down again... that moment reminded me of how great it is to be a dad. Little girls are the best, those that have seen the picture know shes already got daddy's finger, even if her tiny hand can barely reach around it.

Love you Evelyn.

Tim