Tuesday, August 15, 2006
A: "Hi, this is A, I'd like to schedule Kaitlyn's pulmonary function test for 9am on such and such day next week."
me: "OK, that day works for me"
A: "what is your email address so I can email you the pre-test instructions."
me: I'ts ....."
A: "Great, well the letter that I'm emailing will explain it, but you'll need to wake-up your daughter at 4:00 am and don't let her go back to sleep before the 9am test."
A: "Yes, your daughter will need to be awakened at 4am to get "ready" for the test."
me: "Umm, let me get this straight you want me to wake my sleeping baby who sleeps great through the night who will be in the middle of her night time 10 hour pump-feed and will likely vomit upon waking, and then try to keep her awake and drive to the city in the middle of traffic by myself keeping her awake still? Are you kidding me?????"
A: "Yes, she needs to be awake for so many hours before the test."
me: "Well, why can't we do the test later in the day, when she'll be awake anyways? I can't believe you are asking me to wake my sleeping infant at 4am."
A: "well, I guess I can call the lung doctor and see if he could do the test in the afternoon."
me: "Yes, um I think that would be a good idea."
Monday, August 14, 2006
A close up...
This cute outfit is from my good friend Diana.
Look at the cute rear pockets!
Nana Corinne holding her grand daughter. She was so happy to see her little one. She's been waiting a long time for a grand daughter.
My mom and I tried to take Kaitlyn swimming for her first time. It wasn't very successful, she lasted a few minutes then became upset. But she sure was cute!
Look at her little g-button.
This cute robe Kaitlyun (after swimming) was from my Cousin Jennifer in Michigan. it's a little bunny hood.
A better view of the bunny hood.
Kaitlyn and Nana Corinne - Kaitlyn was dressed up to go to the George mark family picnic.
Mom going to an open house, Nana dressed Kaitlyn in a cute summer outfit from my friend Lynne.
Serious Kaitlyn held by Nana while she's being fed
Thursday - the family in front of Brian's 4-wheeler that he restored on his way out of town for his boys trip. This is it's first trip out.
Kaitlyn driving. look how excited dad is to be going out of town - big smile.
Serios Katilyn before I gave her a bath a few days ago.
Kaitlyn after her bath - nice towel dried hair!!!
This is just a few minutes afterwards - I actually have to comb her hair now!! Look at those rolls and that belly!
Mom, I'm all clean now after my bath. This was during our 4 days alone.
I took these pictures today - if you remember a few weeks ago I posted a picture of K in the exersaucer, and her feet didn't touch the bottom.....
Look at those feet now!
Boy, that serious face never changes!
A few days ago, attempting to eat sweet potatoes. Much more on Kaitlyn than she ate.
The old attempt of "trying to get her to taste the food off her fingers."
Funny enough, Katilyn doesn't really like to be so messy, in her hand is a paper towel. She'll take the towel and "wipe" her face down until it's actually clean!! (I'm sure it's not on purpose, but it sure is funny).
Putting anything else besides food in her mouth - this is a new rattle from my friend Lynn.
These are pictures of Katilyn with her cousin DJ. DJ is my step-sisters son, who I was lucky enough to see be born into this world. DJ was due 2 days before Katilyn's due date, so technically, they are the same age. DJ is 99% of the charts, whereas Kaitlyn is at about 5% of the charts for her adjusted age. Whitney came up to visit with DJ and bought Brian and I dinner a few weekends ago. It was so great to see them. Katilyn seems a little more interested in her hand than her cousin.
Kaitlyn says, "hey, that's my favorite toy!"
Some very cute cousin bonding. I became a bit sad, seeing the two of them together, thinking that I shoudl have so many pictures of my 2 babies together. It was great to see DJ and Kaitlyn together. They were actually born in the same hospital, and where there at the same time, (well Katilyn was there for 4 months and DJ was there for 2 days).
A little better perspective of how big DJ is, but Kaitlyn looks great next to him.
Sunday, August 13, 2006
Brian’s been gone on a boys 4 wheeling trip for four days. He was due back today, but he called me when he got off the Rincon Train (near Tahoe) and said that is truck was now only going into 1st gear, and he hadn’t figured yet out how he’s going to get home.
Well, here are the updates on our lovely Miss Kaitlyn –
Between Kaitlyn and me, we had 10 doctor visits this week – yes 10!!!
It’s been such a crazy week that I can’t even think back to when I last wrote. Hmm where should I start?:
- Kaitlyn has had just one episode of the “coffee ground vomit” (blood in the vomit), yesterday. She went almost a week without doing it at all.
- She’s still vomiting, some feeds more than others, but at least on occasion I can go a feed without vomit.
- She’s gaining weight - her last weight check she was 14 ½ pounds.
- Eye follow up appointment – Her ROP seems to be completely resolved. She will likely have some peripheral vision loss as a result to the laser surgery that fixed the ROP disease, but it is likely to be minimal. Her eyes aren’t crossing any longer – they seem to have corrected all on their own. And she is near-sighted, but at this point, only -1.5%. The eye doc said that we’ll have to wait until she’s 18 months old (corrected), until we have a better idea as to what her vision will be and whether she’ll need glasses.
- Kaitlyn had her 2nd lung hypoxic challenge – which means she was put in a little tent in a reduced oxygen environment to see how she her she saturated. The last time she had this test she “failed” it, We don’t have the official results from the doctor yet, but she seemed to do a lot better. This means a few things if she indeed “passed.” It means that Kaitlyn can go on a plane or to high altitude. She wasn’t allowed to up to this point. She is going to have a 2nd lung test in the next month or so which will test her actual lung health.
- Kaitlyn had to have a meeting at her Regional Center office with the head doctor. In addition to a “home teacher” that she’ll be getting, we also talked about seeing a Speech Therapist that can hopefully help with her eating.
- I addition to all of the above appointments, I had a dentist appointment, a Physical Therapist appointment for my jaw, and a physical with a new primary care physician. I met with some new clients, showed quite a few houses, held an open house today, and OF COURSE, took care of Kaitlyn along while Brian was away (with a bit of help from her nurse Lucy who came 2 days).
- Kaitlyn is rolling over both directions – from her stomach. She used to only roll to the left, now she can roll both ways. We’ve seen her roll a few times from her back to her stomach, but usually with a little bit of help.
- She is teething! But I have to tell you, with all the horror stories I’ve heard from other mom’s and their babies teething, Kaitlyn is one tough cookie. One of her bottom teeth is poking through a tiny bit (I can feel it when she bites on my finger, it’s quite sharp), but she just rolls her tongue over it, and continues to try to put everything into her mouth. She seems to have taken great linking to biting her feeding tube – so I have to watch her like a hawk. No fever, maybe a little bit more fussy, but basically same Miss Kaitlyn.
- Eating. Well that’s not going very well at all. I try every day to feed her solids (or rice cereal) via spoon, and she has gotten very good at clamping down her lips, turning away and making it generally very clear that she wants nothing to do with food. When I give her a spoon, she’ll put that it her mouth, but not before she takes her other hand and basically wipes away all of the food first. I also try to use the soft-feeder on occasion (the soft-feeder is a cup feeder where I try to get her to “drink”, I can get a bit into her mouth, which she’ll swallow, but much more goes down her chin.
- My mom, Grandma “Nana” came for a visit. It’s been a few months since she’s seen her granddaughter – I warned her that she wasn’t going to ever want to leave that Kaitlyn has grown so much. Nana indeed didn’t want to leave and couldn’t get enough of holding her. She was so cute, she went stroller walking with Miss Kaitlyn and was obviously very proud to show her off to anyone she saw.
- While my mom was here we went to a Family Barbeque at the George Mark center. Again, the George Mark center is the incredible respite and hospice home for children where Kaitlyn is going to stay when we go on vacation next week. It was really nice to meet some other families while we were there. We met in the chapel for a parent’s session, and it was very powerful – some of their children passed away at the home - it was very emotional.
Well, I think that's about it.
Pictures coming in a seperate post...
Wednesday, August 02, 2006
I've been so busy the last few days, with work and of course medical issues...here's a quick update on Miss Kaitlyn - some good and bad news.
1. Kaitlyn started rolling over!!!!! Now, babies that are 4-5 months should be rolling over, and Kaitlyn just learned yesterday. But she IS a preemie and we knew she'd be delayed - we are ecstatic that she's figured out how to roll, now the problem is that she no longer likes to lie on her belly at all, she rolls right off her belly to her back. She can only roll to one side - but it's so cute to watch her go!!!
2. Kaitlyn seems to have found a "voice" - Now, before you get too excited.....this isn't a "voice" like you'd expect a baby to have. Her vocal chord is still paralyzed. The noise she is making is like a sickly quacky duck noise...I'll do my best to get it on video for you all to "enjoy". This noise she makes is a bit "disturbing" so that if strangers were to hear they would say or think, "wow, what's up with that baby?" That already happened the other night - I guess I have to get used to it. I however think her "voice" is music to my ears! It's so wonderful to hear her make some noise!! I've been waiting a LONG time.
4. Due to the amazing generosity of our family/friends, we now have a LOT more breast milk. So much so that today I switched her back to almost entirely breast milk, and as soon as we switched back her vomiting seemed to decrease. Good thing, as the last few days of vomiting have been HORRIBLE. We’ll see what the next few days look like. I try not to get too excited over less vomit anymore, as it always seems to be followed by more vomit.
Thank you again to:
Elissa – Brian’s sister who sent us maybe 700 ounces of milk!!! Her daughter (Kaitlyn’s beautiful cousin Stella and my niece is just over 3 months old now - they live in CT).
Thank you MacKenzie – boy did we have some problems getting her breast milk. Isn’t FedEx supposed to be the most dependable no matter what – well, on this EXTREMELY important shipment of frozen breast milk, Fed Ex “forgot” to get the package on the outgoing plane from Texas, so instead of getting to me within about 10 hours, instead it was well over 30 hours. Sadly some of it did defrost, but not entirely, and from what I understand if there are any ice crystals in the milk, it’s still ok to refreeze. None of it had completely thawed. MacKenze sent us about 300 ounces of milk from Texas.
Thank you Lisa – Lisa lives locally by me so we didn’t have to deal with shipping – Lisa has given birth to 2 preemies and is so amazing to give us her precious stash as she’s said she’d keep pumping for her son…
I’m SOOOOO incredibly touched by the gifts of this liquid gold for Kaitlyn. My words really can’t express enough how touched I am by this. MacKenzie was a TOTAL stranger to us, introduced by another NICU mom, and I had only recently met Lisa. Elissa had to go back to work and is pumping while she’s driving to and from her job (now she did get that hint from pumping and driving from me, as I used to do that all the time – it was a lifesaver!) Now these amazing women will truly be a part forever more of miss Kaitlyn.
5. Now for the bad news. A few days ago, and we confirmed it today, Kaitlyn has started having "coffee grind emesis". What is that you may ask? Well, when a person has an upper GI bleed (or stomach bleed) it comes out as vomit (emesis) that looks like it has coffee grinds in it. So yes, Kaitlyn is vomiting blood. This isn't good obviously. So today I ran around calling her doctors and getting blood tests. This was her first blood test since she left the NICU, which wasn't very pleasant for either of us (Kaitlyn or her mom), but she did really well. I ended up taking her to the hospital as they have better folks there to draw an infants blood. (This was on fantastic advice by Kaitlyn's doctor who arranged it for us). Have I mentioned again how much I love Kaitlyn’s Pediatrician?
The blood work was to check to see if Kaitlyn was anemic, which meant that she was likely bleeding a lot – good news is that her blood looked GREAT according to her doc, and for us to watch and see what happens this week. The GI doc is hoping that it’s just irritation caused from her GI feeding button. But because her blood levels looked so good (not anemic), they weren’t too concerned at this point. If it continues for another week, we’ll get another blood test and compare, then the next option would be a scope down to her stomach – obviously no fun at all. So we are going to be in a waiting mode.
Tomorrow is Kaitlyn’ 6 month NICU follow up developmental appointment – thank goodness she’s learned to roll-over before the appointment!!!
It is now after 1am, so I’m going to bed!!