Thursday, October 26, 2006

Finally an update!!

I’m sure you can guess by my lack of recent posts that I’ve been incredibly crazed. Work has gotten very busy, I have a new escrow for a client, and have been showing quite a few other buyer’s houses which has kept me crazed. Brian’s been working on his 4-wheeling project, I had to go to Los Angeles on a Realtor Related Trip – my local Marin Association of Realtors sent me to a Realtor Tech convention for my work:, I had dinner with my brother (for his birthday) and my dad, and then I actually got to do something fun, I went to Los Vegas to celebrate a very close friend’s upcoming wedding at her girls bachlorette weekend. Let’s just say I didn’t get much sleep all last week and weekend. Brian’s dad came to town to help out with Kaitlyn while I was traveling. Brian’s dad is a dentist, so he was a quick study with the feeding pump. Then Brian left to go on a wheeling trip up to Tahoe, then of course tonight he’s back at work on his 24 hour shift. I wish I could have help when I’m alone with Kaitlyn….Oh well.

Kaitlyn trying out dad's new seatbealts before he left

Liz and the Bachlorette, Kim in Vegas

The girls in Vegas with "John"

When Brian’s dad was here he made apple pies and banana bread! Wow, what great in-laws I have! But they live in Pennsylvania and my parents are in LA – wish they were all closer!

Vegas was so much fun, it was great to let loose which I certainly haven’t done for quite some time. But I got 2 hours of sleep on Saturday night before I came home, I lost my voice completely.

Let’s see how is Kaitlyn doing? Well, she’s basically status quo when it comes to her vomiting and not-eating: For example. This morning Brian put Kaitlyn in bed with me when he left for work at 6am, and she proceeded to have a coffee-ground emesis (blood in her vomit coming from her stomach) all over my bed and sheets, my nurse came today thank goodness, I then ran around on inspection appointments for the house I have in escrow, got home, relieved the nurse, took Kaitlyn to meet client’s at another house; started her feed late, she vomited, and then ½ hour later I realized that she had kicked loose the feeding pump, so I had been emptying her stomach and pumping milk into the bed for some period of time. So now I’m in the process of washing my sheets to make my bed and Kaitlyn’s sheets, clothes, etc.

Developmentally – she’s doing really well motor skills-wise. She is delayed obviously, but doing well all things considered. She is super close to sitting up on her own, she gets so close to it, but just can’t muscle her way up. She tries to use her stomach muscles rather than her arms. She’s also getting really close to crawling, I guess her physical therapy and our working with her has paid off.

Eating – she’s now going to an eating therapist once a week – I try to work with her every day, but no great success stories to report. This is going to be a long road. Her feeding therapist states that she doesn’t think she is going to eat until we can get her to stop vomiting. I just really hope that once Kaitlyn is more upright that her reflux will stop. We’ll just wait and see. And if you are asking: “What do the doctors say,” please don’t. The doctors don’t’ say anything, there is no answer as to why she vomits and when she’ll eat. It’s going to be a long road.

Well, I guess that’s about it for now, sorry for the long delays in posting!

Sunday, October 22, 2006

A touching Preemie Poem

This poem really, really hit home for me.

The Preemie Experience
by Sandra D Moore

The preemie experience is the shattering of all your dreams
For a normal, healthy delivery,
Of the ability to carry home a beautiful squirming bundle
After a short stay in the hospital.

It is lying there in your hospital room listening to
The happy sounds of whole families joined
Together by the birth of a grandchild, cousin, niece,
Or nephew, and knowing that your
Child is miles away and may not survive long enough
For you to see or simply touch.

It is that first glimpse of a skinny, scrawny, not much bigger
Than a Barbie doll child
And feeling, fear, awe, and joy for such a fragile soul.

It is sitting by your baby’s “bedside” day after day,
Week after week, month after month,
Alternating between the emotional high of “Look, her eyes are open,” or “She’s crying!”
And the lows of “I’m sorry, Mrs. Moore. Something has
Shown up in Lauren’s ultrasound,”
Or even “There is nothing we can do…”

It is hearing the alarms go off for the twentieth time in less
Than fifteen minutes because your
Child’s heart rate keeps hitting zero.

It is watching children dying around you, wondering if
Your child will be next.It is hearing your child’s cry of distress as the nurses
Insert yet another IV and do another
Round of daily blood tests.It is meeting other parents of children who are doing far better
And wondering, “Why me?”
And meeting parents of children who have just died,
And praising God for His mercy
To your child and feeling guilty because your child is alive
And someone else is grieving for theirs.
It is days of nightmarish testing and coping with less
Than positive results to the tests.
It is days of joy at seeing the first eyelash appear,
The child gain a whole ounce in one day,
And two bright shiny eyes look at you and into your soul,
And knowing that your child now recognizes you as Mama or Dada;
Or perhaps looks at you and does not see you at all…

It is that final hurdle before coming home!
It is the sorrow of waiting for the monitor company
Representative to show you what to do
If the alarm sounds when your child is choking,
Gasping for breath, or simply dying.
It is the joy of just being away from all those nurses
And tubes and wires and beeps, and
Walking into the nursery you hastily prepared because, after all,
The child wasn’t due for another three months!

It is thinking the nightmare is over…only to realize it still
Continues in the form of
Such acronyms as PVL, RSV, BPD, CP and numerous others.

It is the final realization that those developmental delays
Have to be dealt with,
That reflux is a normal and unfortunate occurrence in most preemies,
That the constant fight to gain weight is in direct proportion
To a preemie’s ability to do so.

It is watching a child struggle to pick up his or her head, sit,
Crawl, or walk.
It is witnessing only silence when the child should be babbling,
Because the child cannot hear.

It is the mental images of a child running and playing
And communicating with others in a
Perfectly normal manner that are marred when you face years of therapy
In order to simply get the child to eat by himself or herself,
To talk or walk and then run.

The preemie experience is a journey…
A journey through your soul in order to find the faith and strength to cope,
A journey of the mind when you face the emotional weariness,
A journey of the heart…to accept that, no matter what,
This child is yours,And you will love this child no matter what.

Wednesday, October 11, 2006

1 year and 1 week old

Today Kaitlyn is 53 weeks old. Hard to believe that a year ago she had just come out of heart surgery and weighed a mere 1 pound 10 ounces!

Yesterday was a tough day for poor Kaitlyn.

It started out with a 9 am visit to her Pediatrician, where Kaitlyn had her 12 month check- up AND….vaccinations! No fun, poor baby!

Then we rushed to San Francisco (feeding tube and vomit in the car on the way) for a Physical Therapy appointment (she actually seems to like PT – it’s more like playing with a lot of toys).

While we were at the hospital, Kaitlyn had to have her blood drawn (for some 12 month check up stuff as well as allergy testing). I’ve been dreading this blood draw for a while, and held off doing it until I could have it done at the hospital, assuming that they’d have experienced infant techs. It was horrible!!!!! When I got there I asked the tech if he had experience with infants, he said yes. I’ve never seen poor Miss Kaitlyn as upset. Not only could he not find strong enough veins, he had to do it 2 times. She was thrashing, crying and carrying on so, we had to get some one else to help hold her down (oh, it’s bringing the pain of it all back to me as I write this). When the other woman was there helping hold her for the 2nd draw, she said, here let me do it and the guy (who tried the first time) said, “I have to learn sometime!” I about flipped out right there! I was livid, and said, I didn’t’ want him to do it and for her to do it, he said no, and continued, It’s paining me thinking about it again!

Oh it was terrible!

Then I rushed my crying baby to my doctors appointment nearby – I can’t get rid of my cough and I think it’s gone into a sinus infection of something so I got some antibiotics…What a day.

Today, the flu shot she got yesterday seems to have turned into a bit of a cold for her, and she slept on and off most of the day.

Kaitlyn Medical Update:

Her smiling has stopped. For a week or so we had on and off smiles, and now she seems to be back to her “normal.” Which means “Serious” Kaitlyn. She doesn’t acknowledge me - STILL! At this point (9 months) a baby should be interacting in some ways, and Kaitlyn really isn’t . It’s so hard. She does interact with toys and loves to play with them, but as far as socially – it’s not really existent. K’s Pedi said she continues to be concerned about her lack of social interaction. I asked her PT about it, whether this could be early signs of autism or something…she said she didn’t know, but she was concerned also. Oh great.

She weighed in at 16 pounds 5 ounces, 24 inches – 12 months old (9 months adjusted). She continues to vomit all the time. Her feeding specialist is trying to get her to play with her food, or at least put things in her mouth. I try to feed her once a day, some days she’ll put the teething biscuits into her mouth, other days, forget it. And if anything chips off, she makes the most horrible face and typically gags/vomits immediately. We have a LONG way to go.

Her physical development is still showing delays, but doing really well. She’s rolling all over the place, still not holding herself up on her arms much (which is required in order to start crawling), but she’s getting closer to doing so.

Here is an example of Kaitlyn's rolling abilities - when my back was turned she rolled right onto the hardwood floor!

Kaitlyn's birthday picinic a week ago Sunday was wonderful. The weather had chilled down a bit, but it was so nice to see so many friends come out to celebrate Kaitlyn's big day. We all had a fabulous time - thank you all for coming, and I'm sorry I'm so late on thank you cards!!

Here are some pictures from Kaitlyn's birthday picnic:

For her party, I had asked the bakery to make some little angel wings in honor of Corinne in the corner of the cake.

Kaitlyn seems quite interested in her cake!

She did go for the frosting, but I kept her fingers limited to the flowers, so the guests could eat some cake!

Some party picnic pictures

More pictures (on the ground is my step-sister Whitney, with her children Charlotte and DJ (who was due when Kaitlyn was due). Whitney gave us all of Charlotte clothes!

Kaitlyn and Ehtyn flirting with each other out of the NICU - see I told you they look like twins! (remember that Ethyn too lost his twin brother, so now K and E are twins!)

Kaitlyn is very interested in Ethyn!

Nana Corinne came to town for Kaitlyn's big birthday party! My mom really threw us the party for Katilyn and I coudn't have done it without her! Thank you Nana!!!

My dad flew up for the big day - he hasn't seen Kaitlyn in quite some time - he was shocked how big she's gotten.

Kaitlyn's first time wearing shoes!

Sleeping babies are the best!

And in black and white!

We've been trying a nebulizer treatment with Katilyn to see if it might cut-down on her vomiting (due to excess secretions) It didn't work, but here is a few funny pictures of Kaitlyn helping herself to the smoke! You can see the whisps coming out... She acutally liked to put her mouth on it - it was quite funny!

I gave her a breathing treatment tonight (not this picture), hoping that it would help prevent the cold she seems to have gotten from the flu shot from going into her lungs

In honor of both Kaitlyn's Grandmas! - back to serious Katilyn again.

Kaitlyn opening her birthday card from Aunt Elissa!

This was Kaitlyn and Corinne's birthday cake on their actual birthday (last wednesday). This was for just Brian, Kaitlyn and myself.

Now this time we let Katilyn go to town on the cake! She really liked mushing the frosting and smearing it all over the place, but alas, nothing to the mouth.

The cake on her mouth here was due to me - I put my finger up to her to see if she might be interetsed in the sweetness of the frosting - nothing doing! Nice face -she's saying, "I'm not very interested!"

Sunday, October 08, 2006

Can't ever get caught up!!!!

Well, in that it's 11:30 pm, I've had a cough for a week now and can never seem to find enough time with juggling vomit, doctor visits and yes, work! Keeping up on email and my blog seem to have taken a bit of a back seat the last few weeks.

I promise to update soon - with pictures!

No real news on our front - Kaitlyn is still vomiting, still not really smiling, but seems to be growing. We have a weight check at her 1 year check-up (and shots) later this week.

Thank you everyone for your incredibly nice comments from my not so uplifiting last post. Just know that I am trying to really "look forward" to Kaitlyn's next birthday, as I won't have to be saying any more, "wow, 1 year ago, I was...." etc.

I'm trying to look at October 5th as a new beginning of sorts, well, I guess I'll really say that after 2 remaining dates: Jan 4th (when the girs were due) and February 9th, when Kaitlyn fianlly came home from the NICU. Hard to beleive we have been dealing with multiple daily vomit now for 8 months! Wow.

Thursday, October 05, 2006

Kaitlyn's 1st birthday is very bittersweet

My Dearest Kaitlyn,

Today is October 4, 2006. Just one year ago you and your sister came into this world, whether we were ready or not. The emotions I feel about this day are so strong, I find it hard to put them into words – and I’m not usually one that is in a loss for words.

I love you with all of my heart and soul. I’m sorry your first year of life has been so hard, but you are doing so incredibly well, your strong spirit always shines through, even if you rarely show it with a smile. You are such a good, well-mannered baby, you hardly ever fuss or cry, only to show us that you need something and you are so easily consoled. As I look down at you sleeping on the evening of your birthday, I am so amazed to think of how far you’ve come these past 12 months. You are sitting up on your own, and rolling all over the place to get things that you want, I think you are almost 16 pounds, that’s a far cry from the 1 pound 10 ounces that you weighed when you were born. You are truly my miracle child and you have a very special guardian angel sister who looks over you at all times.

I love you my Dear Miss Kaite with all of my heart!!! Love, your mom

October 4th is very bittersweet for me.

Most mother’s are so excited for their child’s first birthday, it means less sleepless nights, eating grown-up food, walking, giggling, smiling 1 year old. Play-dates with other 1 year olds. An occasional pediatrician visit. They can look back on their babies birth with joy and wonder about the amazingness of bringing new life into this world.

Everyone says to me, oh, but why do you call this day “bittersweet” you should be joyous as it’s Kaitlyn’s birthday and she's come so far. I think those are mom’s who’ve had a “normal” experience of their child’s actual birthday – mine was anything but. Now I don’t say this out of jealousy or trying to be mean or anything, it’s just the fact, that October 4th 2005 was not a joyous day.

It is a day that I tried with all my might to fight and postpone just a little bit longer. I can so strongly remember how I kept saying to myself, no, no, no, babies, just stay inside of me a bit longer. It’s too soon, you are not ready to come into this world. All night on October 3rd as they filled me full of shots to get my labor to stop I kept repeating this over and over. But an infection had started grabbing hold, my fever started raising, so my body had another thing to say about their arrival – they were coming whether we were ready or not.

I remember about 5 in the morning, waiting for Brian to come (he was working a fireman shift that day prior) and I asked the nurse what the date was, knowing that this would be my daughters’ birthdates. October 4th she replied. October 4th.

Once Brian got there he looked as scared as I felt. They wheeled me out of my room into surgery. I threw up on the way the operating room from some horrible thing they made me drink. Everything seems so surreal, but I can remember it like it was yesterday. They administered the spinal block with Brian out of the room. He took this self-portrait while he was waiting. I was so scared. There were so many other people in the room, my OB doc, another OB doc, L&D nurses, NICU docs, NICU Delivery nurses, I knew 1 NICU doc already, the other introduced themselves to me. I eventually became very close with both of these doctors and the NICU delivery nurses in our months at the NICU.

Corinne was born first at 7:30 in the morning. We still hadn’t decided which name to name which daughter. Brian felt strongly that Corinne needed all the strength she could get, so she was named after our mothers’ Corinne Margaret. Kaitlyn Elizabeth was born just a minute later. Brian took pictures of the delivery (poor Corinne with no amniotic fluid whatsoever) and pictures of the NICU team trying to save both of them. We never were able to hear that newborn cry that parents long for.

After I was wheeled into recovery, about an hour later I believe, one of our NICU docs (Dr K) came into tell us that Corinne wasn’t doing well, that her lungs just never developed enough without fluid and that she wasn’t going to make it. I hardly remember this moment, it all seems like a fog to me. He asked if we wanted to hold her. We of course said we did.

I was wheeled on my gurney into the NICU. There, lying side-by-side were my 2 daughter’s isolettes. Corinne on the right, Kaitlyn on the left. I hardly acknowledged how small they were at the time. They wheeled my bed up to Corinne’s bed. They slowly unhooked her equipment, pulled her ventilator out and handed her to me. Tears rolled down my face, as they still do now as I write this. She was absolutely perfect, incredibly tiny, but absolutely perfect. She held my finger in her hand. I think I was in a fog at the time, in complete and utter shock that this was happening; my first born daughter was dying in my arms. I laid in bed for 10 weeks doing everything I could to save her, but I couldn’t do enough. Before they were born one doctor told us that if we were ok with our PROM princess passing that we should continue the pregnancy. He said that he’s had PROM babies surprise everyone and survive as well as other’s who haven’t made it. We both said, sure that’s no problem. I NEVER knew how hard it was going to be. To have your child die in your arms is about the worst, most raw experience I hope to ever have in my lifetime.

After Corinne had passed they put her in Kaitlyn’s isolette and took a few pictures with the two of them together. Kaitlyn held Corinne’s hand. Our camera ran out of battery (we hadn’t planned on delivery that day) That picture with a Polaroid camera is probably the most precious picture I have and I have to thank my NICU nurse angels, Kerry and Rose for it.

I was then brought into a private regular post maternal recovery room, where I was tortured with babies crying all around me as their mother’s learned to breast feed. They had a sign on my door that said do not enter without nurses approval. The hospital gives you big plastic bins to put in all of your babies gifts/diapers etc. when you go home, and I received 2 – with twins written on them. When I first was brought into the room, an aide, who delivered the 2 bins said “twins, wow how wonderful!” It felt like a kick in the stomach. The nurse scooted her right out of there pronto. I was in shock and disbelief.

I was taught how to breast pump. I couldn’t do it that first day on the 4th. I told the nurses (and Brian) that I just wasn’t up to it that day, and I would try on the 5th. My fever started really spiking on the 5th (and yes I started pumping). Brian would go to the NICU to check in and get Doctor updates on Kaitlyn. I couldn’t believe that I was in a room down the hall and couldn’t even see my surviving daughter. This was all so surreal. My room was non-stop with visitors but not the “norm” for the birth of a baby (social worker explaining how to make funeral arrangements, another social worker brining us a memory box – that held a lock of Corinne’s hair, her footprints, her id bands, lactation consultant –teaching me how to use the breast pump, then many doctors to check on me, drawing labs, brining ice packs, especially as my fever started really spiking – it eventually hit 105. I was sick, really sick. My heart was also sick from grief.

I wanted to hold both my babes in my arms, to hear them cry, to let them nuzzle and learn to breast feed. Instead I was packed in ice and got to hear updates from Brian as he checking in on Kaitlyn’s progress. It was determined in the first few days that Kaitlyn was going to need heart surgery to close her PDA valve in her heart – this surgery (we were told) could cause damage to vocal chords and that could have a “quiet” voice. I was still too sick to go see her before her surgery. Brian had to be there alone as I lay in my bed with a horribly high fever.

When I improved a bit and was finally able to go see Kaitlyn again (4 days later) the first thing I did was look to the spot where Corinne’s isolette was – the space was still empty right next to Kaitlyn. I immediately started crying, and then I finally “saw” Kaitlyn – my gosh, she was so tiny, had so many wires on her, looked so fragile, the tears didn’t stop rolling. Brian said I had to be strong for her, she could feel my energy – it was so hard, all I kept doing was looking to where Corinne was supposed to still be. The NICU doc who delivered the news about Corinne came and spoke to us, most of it all went over my heard, I leaned on Brian to understand and explain to me. How could this be happening?

I know I’m not supposed to feel regret, but fateful thoughts of that amnio on 7/26 sure filled my mind. How different my life would be, both of my daughters would be here with me and would still be in my belly.

At night in my room I could hear other mom’s babies crying nearby as they learned to breast feed. This couldn’t really be happening to me. Eventually I had to wait 4 long weeks to finally hold my beautiful daughter Kaitlyn – 4 long tortuous weeks. We saw proud parents take their babies home with them day after day after day after week after week after month after month after month. Not us. Kaitlyn was still in the NICU. She stayed for 4 months (127 days).

October 4th 2005 wasn’t a good day.

So, today, October 4th 2006. It’s a day I’ve actually dreaded in a way, Everyone tells me that I should feel joyous and celebratory of how far Kaitlyn has come these last 12 months. I do, she’s my miracle little girl and she’s a special girl to have her own guardian angel over her watching out for her. But, it’s still so hard for me. I miss her sister incredibly so.

I sang happy birthday to Kaitlyn twice, once today with just Brian and myself, and on Sunday at her party with all of our friends and family. Both times I couldn’t get the song out. I started weeping as I cried for all that I felt: The loss of Corinne, all of Kaitlyn’s health issues that she’s been through and is still going through and feeling blessed for how far she’s come and how absolutely amazing she is. For Sunday’s birthday cake, they bakery was supposed to put angel wings on one corner of the cake (they forgot to do so) but I put a single white candle in the corner of the cake for Corinne, as well as Kaitlyn’s birthday candle. For today, their actual birthday, I ordered a small cake for just us. On this cake I had both of their names written: HAPPY BIRTHDAY KAITLYN AND CORINNE. We had 2 candles on the cake. It was very hard for me to get the happy birthday song out without my voice cracking. I was trying so hard to be strong and feel joyous for my daughter Kaitlyn. Next year will be easier.

I know that birthday’s from here on out will not be as difficult as this one, I’ll better be able to accept the “celebration” of Kaitlyn’s birth and not have it be so bittersweet I won’t constantly be saying, “wow, 12 months ago I was….” I think only other preemie moms can truly understand this. I’m sorry if I seem so down on my child’s birthday – I’m sorry if you can’t understand this feeling, and know that as Kaitlyn starts to know her birthday in the future it will be a joyful celebration day for her. We will find another day and way to celebrate Corinne’s passing.

I’ll post pictures soon of her party – which was fabulous. And of her going to town on her birthday cake (no eating it of course, but she enjoyed making a mess of the frosting!).

Here's the link to the slide show of their birth:
Link to K and C's birthday

Wednesday, October 04, 2006

Today is October 4th

Today is Corinne and Kaitlyn's birthday. I'm sorry I wish I had time to write more, I promise to in the next few days.

We celebrated on Sunday with friends and family and I'll post pictures of the event!