Wednesday, September 20, 2006
Now of course, because Brian is a fireman, taking baby clothes to "work" is a funny sight. Right after he put a load in when he got to the firehouse, he was called out on about 3 calls, so when he returned, there were a lot of questions as to who owned the large load of pink onsies and footsie pj's in the laundry.
I can just picture it - it makes me giggle, all those big fireman giving Brian a hard time for his pink load of laundry!!!
We have just located a new washing machine and are back in vomit clean up business.
And, yes, her vomits have continued even though I haven't made many comments on that fact. Today/tonight I've changed her PJ's 4 times! The last time was when the dreaded medicine port opened (for all those fellow g-tube mom who know what I'm talking about) and fed her bed for over 2 ounces of milk before she woke up, soaking and having her stomach completely emptied. now, 2 hours later, she's still awake (it's almost 11pm) , and I just changed her pjs' again after a huge vomit. Ugh.
But on the good news front, she has continued to pleasure us with an occasional smile now and then (still not directed at us), but it is so amazing to see her face light up . It makes my heart sing.
I think that one of the alternative practicioners that I've been taking her to (an Osteopath who specializes in Chranio Sacral Therapy) has a lot to do with her recent positive development. I can honestly say that in the last 3 weeks, we have seen a noticeable difference in her behavior, her ability to interact with the world, and now her smiling. She's rolling all over the place, in all directions. 3 weeks ago she was only rolling from stomach to back, and rarely ever back to stomach. Now she's a champ at rolling both ways. Even if I put her head facing one direction, she'll rapidly move (via rolling) and end up facing another direction.
She's so much better at handling objects, she can even finger-pinch small things (like a cheerio) but forget eating it. It's so wonderful to see her thriving all of a sudden.
Sunday, September 17, 2006
Kaitlyn smiled yesterday about 7 times and today about 3 times!!!!! I was able to capture the moment on film. It first happened yesterday on her changing table, she was looking up at the ceiling, (yes, the ceiling) not her mobile, not me, not anything in particluar, she looked above her head and broke out in a smile. A big smile. A really big smile. I got her eyes and the smile stopped, she looked upward again, and smiled again and again and again. I started crying when I looked up at the ceiling and didn't see what she was looking at.
Because the first thing I thought of was the fact that Corinne's ashes are in Kaitlyn's room and I felt her presense so strongly as Kaitlyn smiled for the first time over and over and over. Tears lept to my eyes. I called Brian in and she presented us with a few more smiles.
I went to bed hoping that maybe this morning for the first time ever she would smile at me, but no that's still not to be. Later when I was about to give her a bath she did the same thing, looked upward and smiled about 4 times - AND I was able to capture 2 on camera!
OK, I thought my daughter was beautiful with her serious face, but look at her now!!!
Enjoy (and oh, Kaitlyn is 15 pounds 6 ounces - she finally surpassed the 15 pound mark)!!!
OK, I should probably post this in a seperate email, just to end on the smile above, but at least the following is good news:
Kaitlyn had her lung test (again - remember the last one failed AFTER she was sedated) this last week, and this time the machines were working. The test was scary for mom, as having Kaitlyn sedated brought me back to the NICU. I guess there are only 20 of these machines any where in the world, so we are lucky that we have access to such good medical care here. The test was at UCSF.
The test basically is similar to what an adult would go through on a lung function test, but an adult can hold their breath, suck in air, blow out hard, etc, and an infant obviously can't.
There are different portions of the test, one part she had to be closed in a box, other parts they held her breath for 3 breaths, and another where her chest is expanded. The whole thing was scary for me. Pictures of the test are below.
Resluts of Kaitlyn's lung function test:
Basically Kaitlyn does in deed have Chronic Lung Disease (that certainly wasn't anything out of the ordinary,) BUT the good news is that it seems to be fairly mild. This is absolutely amazing news, remember that Kaitlyn spent 1 month on a ventilator, had her lungs collasp many times, filled with fluid and was put on many many drugs during that time. She then spent more weeks on a CPAP machine and another 2 months on oxygen. We were completely surprised that she didn't come home from the NICU needing oxygen and now we are even more pleasantly surprised that her Lung Disease is only mild.
Now, she's still at risk for RSV (which is a common child cold/flu that if kids with Chronic Lung Disease get it can be put right back onto a ventilator) and will still need to be under hibernation from other children this winter, BUT I feel that it won't need to be as strict now as we had to be last winter, which is great news!! it also means that she can fly on an airplane (again not in the winter with flug bugs and RSV season).
Here are a few bath pictures - Kaitlyn's first Big Girl Bath!
Wednesday, September 13, 2006
10/4 was such a bittersweet day...I WAS TERRIFIED to be wheeled into surgery, I kept saying it's too soon, it's too soon, I even vomited (wow, maybe that's why Kaitlyn vomits all the time) on the way to the delivery room - I was so scared)
It is my daughters' birthday, and the day that Corinne died in my arms. I can't believe it's been almost a year.
We are going to be celebrating Kaitlyn on 10/1 with many, many friends who have been waiting a year to finally meet her.
I wanted to post this email from a good friend of mine from High School (a mother of twins) that she sent me on my birthday - it was very touching....and says all that I feel......Thank you Sue!
"Today is your birthday!!! Happy Happy Birthday Girlfriend! I hope you are trying to celebrate!!! You deserve it.
I just got caught up on your blog! I have been so busy, I had lost touch for a little while. Now that I have had a chance to dry my tears...I wish we could all go back with you to just before you had the amnio...I wish I could bring your angel to you...I wish we all could have known what would be in store so that we could have made different decisions...(more tears)...I cry for you. I cry for Corrine, your sweet little baby. I cry for Kaitlyn. I cry for Brian. And I cry for the rest of your family. Sometimes, I just cry, because I can't imagine your pain and frustration! I can never feel what you feel, but I do feel what a mother feels...and I can't imagine how difficult your situation is from all angles."
Tuesday, September 12, 2006
Now, keep in mind camping with Kaitlyn wasn’t really the easiest task. We went to Mendocino for 2 nights, it was actually quite chilly there, Mendocino is on the Northern California coast in the redwoods and gets a lot of chilly, damp fog. Brian and some of his firefighter buddies from Lake Tahoe have gone every year and go diving for abalone, crabs and fish.
We brought home Brian’s limit of Abalone that he free dove for and we are actually going to serve them at Kaitlyn’s upcoming 1 year old birthday party on October 1st.
It was beautiful, and so nice to spend some time outdoors. Brian pitched us a tent, we did have running water down the path a ways, as well as bathroom facilities. But this was no easy task, camping with a g-tube fed baby that’s on frozen breast milk. Just to give you an idea, we had to get dry ice to pack enough breast milk to last the trip, we packed syringes, MANY MANY burp clothes (every one we had), medicine, supplies to clean her g-tube site, clothes and blankets (as it was cold and damp), her pack and play, her wedge to sleep upright, a battery charger that runs off a car battery to charge her feeding pump, as well of course food, clothes, camping gear, sleeping stuff for us, abalone diving stuff for Brian.
Kaitlyn really liked the camp fire, but she was really cold the first night, until we better figured out how to manage the overnight feed, and her needing to sleep on a ramp. She was in her pack and play all bundled up the first night, but on the 2nd night, Brian moved to sleep directly on the ground and I slept on a large inflatable mattress with Kaitlyn, there wasn’t enough room for all 3 of us with her ramp and feeding tube. It was the first night I ever slept with her and it was sooo wonderful. Brian enjoyed taking lots of pictures of us in the morning, but didn’t sleep all that well on the hard ground!
Pictures of our camping trip below.....
Lung Function Test Recap…
Last week Kaitlyn was due to have a lung function test.
Well, as our “luck” would have it, it was a continued disaster (remember my scheduling conversation?). We did all the “prep” work to get her ready, keeping her awake, changing her feeding schedule, Brian and I driving together to the appointment so she wo0uldn’t fall asleep on the 20 mile drive to San Francisco. Once we got there, we waited 30 minutes for the Doc to arrive, then became nervous and scared as they sedated Kaitlyn. I hadn’t seen her “out” like that since her G-tube surgery. Just as soon as she was out, they discovered that the software for the intricate machine that is used was malfunctioning, we waited for an hour for the one tech and creator of the equipment (in Michigan) to return his page to fix it, but alas, no call. Finally, Kaitlyn woke up, and that was that. 2.5 hours later, 30 minute drive each way, all the prep time, and now her feeding schedule was way off kilter, and no long test!
We are now tentatively rescheduled to take this test again on Thursday this week, at 8:30 this time, so it will be even tougher to keep her awake.
Today Kaitlyn had an appointment with a new Speech/Feeding Specialist. Kate. She was great!! We are going to give up on trying to spoon feed Kaitlyn baby foods. She doesn’t want anything to do with it anyways, and it’s just reinforcing her oral aversions. Instead, food is going to be a play thing and fun, as opposed to always trying to get her to take in nutrition.
The Therapist was very happy that Kaitlyn actually puts items in her mouth, likes to watch us (her parents) eat, and I was able to have her gnaw on a teething biscuit the other day. No one has ever told me that I could try giving her other food to try….so this was all a glimmer of hope for me. She did indicate that she doesn’t think Kaitlyn is ever going to embrace food until she stops vomiting….Today the therapist played eating while giving Kaitlyn a Sweet Yellow bell pepper, a teething biscuit, and a dried apricot, she also spread out sweet potatoes on her eating tray and made playing games with it. Of course Kaitlyn made quite a mess of everything, but she did put all of the objects into her mouth!!! This isn’t at all for nutrition, It’s for her to stop thinking so negatively of food.
She would like to see us play these food games with her while we are eating our dinner, and if she’s getting her pump feed, to not let her see the pump (put it behind her).
When we left, the therapist said she was very, very pleasantly surprised at how willing Kaitlyn was to put food in her mouth, as many oral averse kids can’t even be in the same room with food! It’s a start.
But we have to figure out her vomiting.
She’s had 3 visits with a cranio sacral OD, but I haven’t seen any improvements so far. ($$$$$) The feeding Therapist suggested another holistic practitioner that helps discover allergies, once again, it’s going to be $$$ but I’m willing to try anything!! It’s very hard for me to work full time with all of Kaitlyn’s non-stop doctor visits. And if I don’t work, (being self-employed) then no income…BUT if we can get her to stop vomiting, to start eating, then I can start working more, so it’s sort of a chicken and egg situation.
That’s about it for this update!
Question: what looks out of place in this picture? (think IV pole!)
Very cold morning, (this was the 2nd morning after leaving the tent), Kaitlyn is wearing my down vest, it fit her nicely like a wearable down blanket. Kaitlyn and our friends' daugter (Jordan, 3 months) in K's pack-n-play
Kaitlyn taking a nap during her morning feed in the woods. She's a true camper! (And I'm a true trouper!) We actually went down to the beach on our last day, the sun came out for about 5 minutes and I de-layered, but it was very short lived.
Kaitlyn is actually being fed in this picture, I have her feeding pump on my back in a little back-pack. It at least was "easy" to deal with her vomit outside, I could just lean her over onto the ground and have her vomit. It was tough in the tent though.
Brian and his buddy Shawn about to do some scuba diving. They got fish with their spear guns. I don't have pictures of them Abalone diving, as that was done without tanks. it's illegal to get Abalone with scuba gear, you have to hold your breath and go down with fins and a snorkle. We'll be serving Abalone at Kaitlyn's 1st birthday party - what a treat! This water sure was a far cry from the WARM ocean waters we enjoyed in the Dominican. You sure didn't get me in the water!
Connor helping his dad get ready for their COLD dive.
Tuesday, September 05, 2006
How can I be 40, I don't feel 40, I'm finally a mother, 40, it can't be.....
WOW, WOW, WOW. I guess that sums up the place we stayed.
For those who are new to my blog, Brian and I took a much needed vacation to the Dominican Republic to celebrate my 40th birthday as well as our 2nd wedding anniversary. We also just needed some time together, with no responsibilities (no vomit, no syringes, no feeding pump) and to reflect on the year we’ve had: (infertility, it’s ups an downs, IVF, the shots, getting pregnant FINALLY, with triplets, miscarriage of my triplet at 10 weeks, amnio at 17 weeks which caused my water to break, 10 weeks of bedrest, moving into a our first house, emergency delivery at 27 weeks, the birth of our twins on October 4th 2005 who each weighed 1 ½ pounds, the loss of our first born daughter Corinne 3 hours after she was born, my becoming very sick with sepsis, our 2nd born daughter Kaitlyn needing heart surgery 4 days after she was born, she was touch and go for the early days, Kaitlyn spent 4 months (127 days) in the NICU, having unknown # of blood transfusions, surgeries (including an eye surgery which saved her from blindness), she spent a month on a ventilator, and many other months on other breathing devices, finally coming home to us 1 month after she was due on 2/9, weighing 7 pounds, but not eating well; 6 weeks after she came home we realized we had to have a g-tube inserted surgically because she wasn’t eating anything by mouth, and was constantly vomiting. Upon coming home from surgery, she continued to vomit, a LOT, and we had to learn the life of feeding a child through a tube in her stomach. I pumped breast milk for Kaitlyn for 8 months, and produced well over 3,000 ounces, I filled completely a 6 foot tall freezer, I stopped pumping, not realizing that Kaitlyn was going to have even more problems with formula, so amazing women have donated their breast milk to us. After Kaitlyn came home, we also had to put our 12 year old dog to sleep, as she was sick and surgeries couldn’t find the problem. Yesterday, was 11 months to the date from when my twins were born.
You can see why we needed a break!
In that Kaitlyn’s medical needs don’t allow us to have family members take care of her (and the fact that we don’t have local family), we sent her to an amazing place, The George Mark Children’s http://www.georgemark.org/ house that is 30 minutes from our house. This home was written up in People Magazine and is the ONLY one in the entire United States to give parents Respite (a break) or to help in the case of children who are dying (Hospice). While we gone the nurses checked in with me via email to give me reports on Kaitlyn. It made me smile and giggle with thoughts of her every time I got one of their emails. They even called my mom to give her a report too! Thank you GM House, and thank you to the volunteers and nurses who took such good care of Kaitlyn while she was there.
We decided to go to a plush all-inclusive resort (we are usually the more adventures types), but this time around we wanted to RELAX with a capital R. We went to the MOST AMAZING resort I’ve ever seen, and I’ve been to a lot of nice resorts in my past. This is where we stayed: http://www.paradisuspalmareal.com/ (Check out the pictures on their site)…When we checked in they actually upgraded us to the Royal service, as they had a special Romance package I had emailed them about in advance. They also knew a bit about our situation, with our twins, my birthday and our anniversary, and I have to say thank you thank you Paradisus Palma Real!!!!
Upon arrival, we headed straight to the beach:
The resort is not even one year old, and was amazingly beautiful. When we checked in, we were treated to warm washcloths and champagne and a private tour of the resort with our butler! Our Royal package included a butler!! Our man Jefferson was the best!! Thank you Jefferson!
Our pool bartender Roberto and Pool/Cabana Boy Ahmed were amazing. They never left us without a drink in our hands!
Just to give you an idea, of how exclusive this resort is, I understand that Pamela Anderson stayed there a few weeks back, and while we were there, there were NBA players from the Atlanta Hawks. We had lobster a number of nights.
On our anniversary, we had a restaurant called “Passions”, and our butler had spread rose petals on our table, waiting for our arrival. Upon returning to our room that night, out butler had spread rose petals as we entered our room, he had drawn a bath and the amazingly large tub, with candles, incense and a bottle of wine.
We had an amazing ocean view suite on the top floor, just a few doors down from the resorts 2 super exclusive suites (which we didn’t have).
Just down from our room was our private pool with our own pool bar (remember, everything was included). The pool bar had reserved cabanas with these amazing pillow beds to lie on that our man Jefferson would reserve for us. There were covered cabanas and ones in the sun. You had your choice of cabanas on the beach or at the pool. Both were amazing. The private pool (as well as the main HUGE pool) had these cool lay down things with drink holders. Every morning they would lay out towels with flowers.
When you walk into the resort the view is absolutely stunning, marble entry ways, water fountains, the pool and then the blue ocean beyond. Wow! I’m just imagining it again now.
At night time we would sit outside in the vast courtyard just looking at the sites.
Every night the resort had entertainment, one night they had a Michael Jackson impersonator and dance troop that was actually quite good. (I expected to laugh my head off, but the dancers were quite amazing). One of the restaurants:
We got a couples massage in the cabana below.
We rented (for free) a little sail boat many late afternoons, and we would sail down the beach to one of the beach bars, I would run in and get “road sodas” – Like frozen mudslides or something) and then get back on our sail boat. Brian scuba dove every day (for free), as the resort was all inclusive. When we scuba dove, I happily laid in a cabana and read 3 pleasure books! Yes 3 books!
We spent 8 days there, the Hurricane Eduardo that came through (While we were in the DR it was called Eduardo, but I see it also named Ernesto here in the US – who knows?). The day after we got in, we had some torrential down pours, major wind and over cast skies for a few days, but that was about it. The island in the Caribbean where Dominican Republic is shared with Haiti. Haiti and a city on the DR, were affected much more than where we were, they actually had some major flooding and there were a couple of fatalities sadly from roofs collapsing. Funny enough, we were contemplating going to Cabo San Lucas for this trip, and upon returning home discovered that Hurricane John was bearing down on Cabo. I guess we picked the right place to go!! You can see the storm wind in these trees:
Flying to the DR from California was quite a trip. It’s a LONG ways. We had a 4 hour layover in Atlanta, and were very tied upon returning home. We only met 1 other west coast couple while we were there, everyone else was from the East Coast or Europe. We met a wonderful family originally from DR and a great group of couples from NJ (Hi guys!).
Last day on the beach before we left to catch our plane:
Of course, on the return plane trip home, I couldn’t WAIT to get back home to see our little girl!! We got to the George Mark center at 1am (which was 4 am our time), so we were quite beat!!! She looked so different! She had grown and I just kept staring and hugging her close! It was so wonderful to have a break and even more wonderful to scoop up my little peanut into my arms and hold her tight!
I was so hoping that I’d finally get that much awaited smile, showing that she recognized me (or her dad), but alas, still super serious baby!
Upon returning home, we discovered that her 2 front bottom teeth that were just starting to pop out, completely popped out, and she was learning to almost sit on her own.
NOW, she is definitely sitting on her own – but I wouldn’t leave her, as she’s still wobbly and falls down. I’ve also discovered that she has gotten much better with the use of her hands. She now knows when something is dropped (well, she’s discovered picking up things and then dropping them), and she looks for the object. Before out of site, out of mind. She can now also pick up cheerios – no not eat them, but she’s able to pick them up and throw them. I have discovered the thrill of picking up stuff all over the house.
I was also secretly hoping that the vomit would be miraculously gone upon our return, but no such luck. Her vomiting has changed, but she’s still vomiting. It’s “quieter” now, which in a way, is tougher, as she surprises me, and it’s now almost always projectile. I’ve tried spoon feeding her still with veggies or fruit purees, and she wants NOTHING to do with it. Now she’ll put about everything else into her mouth, but she is quite adept at knowing when there’s food on a spoon. An empty spoon, she’ll happily put into her mouth, food, forget it! I’ve even tried the mesh feeder that someone visiting my blog suggested, but no luck with that either.
Today was sort of “back to my life of Doctor visits”, Kaitlyn had a PT appointment, where her PT is indeed pleased with her progress, but stated she is still quite delayed (acting like a 5 month old, as compared to her 8 month adjusted).
Kaitlyn is still a bit under 15 pounds, so I think her weight gain has dropped off the last few weeks, which has me a bit worried.
Tomorrow, she has a major lung function test, to see how bad her BPD (Bronchi Pulmonary Disease) is or how well her lungs have healed. This won’t be an easy test for me to watch I’m sure, but we are really looking forward to the results. Right before we left, I gave Kaitlyn a cold, and luckily she seemed to have weathered it quite well (her first cold) and it never went into her lungs. This is a BIG deal!
We’ve noticed that her eyes are still crossing a bit, so we’ll continue to keep an eye on them (pun intended).
Welcome Home MOM - Boy did I miss my Beautiful Miss Kaitlyn:
Getting fed in her bumbo seat.