Friday, October 21, 2005

Updates for 3 days.....

Brian's ring on Kaitlyns foot-click on to view larger image

Kaitlyn holding Liz's thumb today (10/21/05)

Wednesday - 10/19/05
On Wednesday Kaitlyn switched from the oscillating ventilator to the regular ventilator and I got to changer her diaper for the very first time, with a lot of help from her wonderful Nurse Rosa…..with all the wires it was a little bit tricky to not get the wires caught in her diaper and you have to be especially careful to not let her skin get stuck to the tape because her skin is so sensitive. Lifting her little tiny legs to lift her butt off the diaper (which she didn’t like much)….was amazing, she hardly weighed anything at all. All the nurses tell us that she squirms like crazy when she has a wet diaper. Her fussiness definitely shows that she likes to be clean (she gets that from mom!).

Today was also the first day she got some of my breastmilk! Not very much 1cc….which is basically about 10 drops. It’s too soon to tell how she will tolerate it, as her stomach and digestive system just isn’t ready to digest food yet. But she also had two poops today with meconium, the docs say the milk isn’t going through her much yet, but when they pulled the milk back out of her stomach (very weird to see) they did see some digestive enzymes in with the milk, so they put it back in her stomach before giving her another 1cc of milk. I finally felt like I was doing something to help her, all the countless times I’ve pumped and now she is finally getting something from me.

Thursday - 10/20/05
Today Kaitlyn continues to do really well. Her oxygen levels have been down as low as 28%. She got more milk today and is getting it now about every 3 hours. The doc says that she still really isn’t digesting the milk, it’s basically helping condition her to really start digesting it and get her system working.

If she continues to do well, tomorrow they may try to switch her to the CPAP (Continuous Positive Airway Pressure – it helps her breathe by helping keep her lungs inflated so she doesn’t have to work as hard) instead of the ventilator, which means that she will get to have her breathing tube removed! That will make mom and dad very happy.

Liz "cupping" Kaitlyn to calm her

Friday - 10/21/05
Today Kaitlyn got her breathing tube removed and went on the CPAP. When we got to the hospital her entire head was bandaged up, as it held the face mask up to her head. They did a breathing treatment while we were there to help open up her lungs. She had been on the CPAP since 9am in the morning and was tolerating it well, however her CO2 levels were up a bit. The doc said she really liked having the breathing tube out and that they were slowly trying to wean her from the morophine. They also give her caffeine to help stimulate her to breathe.

They removed the face mask and we got to see Kaitlyn for the very first time without any wires or tape on her face! Unfortunately, her face was very “scrunched” up do to the mask that was on it, so she wasn’t looking her best, but she opened up her eyes (of course when she was squirming as once again she doesn’t like being handled what so ever.) But she was so beautiful! Brian actually got to hold her for half a minute or so. Her whole body fit within his hand, but he used his second hand to hold her head. It brought tears to both our eyes. Our daughter. Being held by her papa.

Brian holding Kaitlyn for the very first time
I got to change her diaper again today and I got to “cup” her in her isolette which helps her to be less fussy. Her oxygen requirements are much less when I do that, so I do think she can feel my presence.

Dad was taking pictures like a true papa! And I always used to be the camera woman! I was too in awe of seeing her for the first time.

By the time we got home from the hospital, the doctor called us and said she had to removed her from the CPAP, as she was having a lot of A’s (Apneas-not breathing) and B’s (Bradycardia – heart rate below 100) and they had to re-intubate her and put her back on the ventilator. We had been warned that this was likely. The doc said she was really pleased at how long she was on the CPAP however and she was doing really well, her oxygen levels were still low, around 30-40%.

Tonight when I got home I had a crying break-down. Seems to be a common occurrence for me. I tried to ask Brian how I should feel, as it’s so hard for me to feel “encouraged, joyful, optimism or any type of happiness” when Kaitlyn is doing better. I feel too guilty for feeling this way because of the incredible grief I feel for Corinne. It feels like I’m being disloyal to myself and to Corinne’s memory.

Brian asked me how Corinne would want us to feel. He felt that she would be happy to know that her sister was improving. He’s right, but why is this so hard? Why am I so afraid to feel a sense of hope? I really, really feel like I’m being disloyal to my other daughter that is no longer here.

Well, it’s time to pump again and for Brian to change my dressings. It’s like having a full-time job (which I do have but I’m just not going to)…..Between pumping, dressing changes, trying to sleep to recover, time at the hospital, driving to and from the hospital, the entire day flies by. I’m completely exhausted every evening when I get home. We’ve been surviving on take-out food – at least I’m getting a bit of an appetite back.
I really do promise to post more pictures soon.


Anonymous said...

Liz and Brian, Thank you for letting us come and see Kaitlyn. She is gorgeous and sure to be some kind of ballerina or pianist with those long fingers.

We miss Corrine also and pray for her every day as we pray for her look over and be with her sister. The sister bond is incredibly strong and spans life and death. They will always "know" one another, and I'm sure she is looking down and taking care of Kaitlyn.

You and Brian are amazing parents, Kaitlyn be any luckier. We love you all, Whitney & Derek

Deb Schwarz said...

Liz and Brian - thanks so much for the updates. It's great to see pictures of Kaitlyn. I think of you every day and wonder how you are doing. It's a very difficult time right now so if there is anything that you need - please let us all know - we're here to support you in any way.

Anonymous said...

Liz & Brian,

Kaitlyn is so beautiful and will get more amazing as she grows. What out boyz "heart breaker" here she comes!


Anonymous said...

I loved the pictures and am so happy that Kaitlyn is getting stronger each day. Corinne is looking over all of you and lending a helping hand. I know how proud she is of the three of you. What great parents! Love Nancy

Kriste Lenfest said...

Liz and Brian..I have been totally out of touch for the last few weeks. Kaitlyn is so beautiful! My best friend's baby was less than 2 lbs when she was born. 9 years later that lil redhead is as fiesty as they come. Kaitlyn is a fighter like her Momma and she is going to do great!!!

My love and positive thoughts go out to you both.

Kristen Lenfest

Toni (aka Naked Lizard) said...

Liz & Brian,
I have been reading and following your story. Your little family are always in my thoughts and prayers.
I know just how hard it is to make The arangments for Corrine, my heart breaks for you with this. I wish there were words to take the pain away, but all we both have is time.
(((Hugs))) If you ever need to talk you have my email, YELL I'll come running. Not so fast, just had my TAC placed. But I am there for you.
You have an amazing Angel watching over you, Brian and Kaitlyn, She will always be there for you.
(((Hugs))) again. Your an amzing woman and you have set a great example.
Toni (from PROM)

Anonymous said...

First off that first pic of Kaitlyn's profile looks very much like Gary! LOL! ;-) I see for sure in the eyes and nose from the side. Like a strong Stolz look!
Secondly, I know I don't know you Liz but YOU LOOK GAUNT and need a cheeseburger with all the toppings, avocado, bluecheese, bacon! and a slice of deepfried cheesecake! :-) If you can! (just a friendly opinion) You have been sick and all the stress now you are the mothership and you really need to be in top form to keep up with where you are at and progressively more involved and esp if the hospital starts saying you got to come in more often-which I thought was hellish when we got up to 3x day! You get home and are FRIED! You have every right to be frust. with how tired you are. I remember thinking I usually did all this work and juggled entertaining all these people and crazy details of stress and HOW could I be so worn down! I would think I was weak and beat myself up psychologically and really your body is just saying I need a break...You must remember you have been through probably "the most craziest ordeal EVER!" Rest is good. Rest is your friend. Get it while you can! It's just SO different on the otherside of pregnancy! One can't even describe go through it and "then" get it.
Lastly, and most importantly Corrine. She is forever a part of your lives. You guys met her and she braved 9-10 weeks of drama in your womb! She knew her sister for all that time and more..You will always be a Mother of Multiples! Remember that and tell people. I think maybe sometimes when you are so tired- she's making sure you get enough rest to go to Kaitlyn the next day and keep pumping for her. Or that when Kaitlyn did so well without the tubes..she was helping in spirit to root her sister on. I don't know what it is like to lose a child but I feel like I would be angry as hell! I think I would always grieve but also know that I just love them too much to ever forget the pain. It's just so unfair and wrong for a parent to lose a child. I am always peeping in on your site to see how you get through your days/week. You all are constantly in our thoughts! You are doing awesome! I like the cupping photo! Doting mom! Sooo sooo sweet! And she knows it's you! Oh and the sweet papa holding his daughter for the first time! Ahhhh! ;-) So happy for you guys for where you are at now. It's tough but it gets a little better each day as you learn the routine and the pass little milestones in the NICU!
Lots of love!
Lisa Haugen
PS Can I just say Brian sounds like an AWESOME husband and father-you are so lucky!! Total Rockstar!

julie deruvo said...

Hi Liz,

We have been gone all weekend, so this is the first opportunity I have had to check your site... I was sooo happy to see the beautiful pictures of Kaitlyn! She looks remarkably well!

I know you are going through so much right now, but Brian is right... Corinne would be SO proud of her sister (and her parents)! Kaitlyn is proving what a fighter she is, and she has gotten that from being with Corinne! So, try not be be so hard on yourself, you are doing a great job!

Our prayers are with you everyday and even on the days when I am unable to view your site, you are in the forefront of my thoughts!

Love & Blessings,

stephanie said...

Hhi Liz - it's Stephanie Nelson. I'm in the twins club and we were trying to arrange a time for me to visit you on bed rest just before you went into the hospital. I've been reading your blog and am thinking of you so much these past few weeks. I can't imagine what you're going through. Please know that I'm thinking of and praying for you all. You will get through this.

Jodi from PROM said...

Liz & Brian,
Kaitlyn looks great! Looks like she's making great progress despite going back on the ventilator. Even the small bumps you experience in the NICU can be very scary, but just hang in there and take it hour by hour.
You had all that love for Corinne, she would now want you to give it to Kaitlyn because she's the one who needs it now. You are right, Kaitlyn knows when you're there and her vital signs will improve. It's amazing. So it's not just your milk that helps her. You will see, months down the road that you have a very special bond with her because of what you have been through with her. And because she shares the same genes as Corinne. Even today at 17 months old, my son and I have a very special bond. He is ALWAYS comforted in my presence. You will treasure this.
If you have an opportunity, I'd like to see a pic of Kaitlyn with Uncle Gary...since he was so great about keeping us updated on your blog.

You all remain in my prayers,
Jodi from PROM :)

Michelle Flannagan said...

Liz- Kaitlyn looks great, it's such a good sign, to have her on CPAP for even that short amount of time. It's amazing.

I know what you mean about changing the diapers, I remember my hands shaking the first few times, I was so terrified of hurting them. NICU nurses are truly a special breed of people, rely on them for what's best for you and Kaitlyn.

Hang in there, you guys are in my thoughts and prayers,
Michelle from Sidelines

Anonymous said...

Liz and Brian--
The Redwood High School Ultimate Team sends our love, congratulations, condolences, and wishes for health and recovery. What strength you have to get through what you have! Thank you for sharing your story. We will continue to follow you family's progress and keep you in our thoughts and prayers.
--Joe Stewart