Pictures from the last month

Kaitlyn standing (yes ma, no hands) waiting to see Dr Good, her Eye Doctor

She can stand if she has something (like moms phone) to keep her occupied.

With all the craziness of the "nurse" the last week, it took away from an actual mom's night out in San Francisco!!! I took my best friend for a night in SF. We went out to a dinner theatre for my friend Keri's birthday. We've been friends since college! A mom from my twins club had a certificate for a very reduced rate at the Hyatt in Union Square in SF that she couldn't use, so I quickly snapped it up. This was the sunset from our room before we left for dinner. And it was a weird, strange night in SF, where it was so warm you hardly needed a jacket.

Keri and I out at the dinner theatre. Yes we look alike, (I'm on the left).

A very rare amazingly beautiful smile from my daughter. I actually didn't know I captured this smile until I just looked at the pictures! Wow.

Many of you know I started a local preemie support group. One of the moms (Lisa, on the left) who donated a ton of breast milk to Kaitlyn had a birthday party/mom's morning for her 2 preemies (they are not twins), but born a few weeks and 1 year apart. From the left, Lisa (mom to birthday boy preemies Angus and Craig), me, Sophie (whose 2nd daughter was born via surrogate early (28 weeks I think?), Kimberly (whose twins were born by a surrogate at 29w and sadly lost one of them 4 days after her birth and her surviving twin, Cammie, is still in the NICU, but due to come home any day), and Dina (who is holding her surviving twin Kyler, a 24 weeker). It's so nice to meet and spend time with all these mom's who understand. The birthday party was for not preemie moms and kiddos too, but it was nice to capture a picture with all of us. Kaitlyn had to stay home (as fear of others with colds and she had a fever).

Grandma Markie (a few more pictures from her recent visit) I see a lot of family similarity there, don't you?
See how Kaitlyn is looking at Markies mouth? This is very common, she rarely looks in your eyes, much preferring to look at mouths.

Kaitlyn playing with Grandma Markie.

I've been trying to capture a picture of this for a while. Kaitlyn sticks her finger out to explore things - but she always uses her middle finger. It's quite funny!
Kaitlyn's fine motor skills are quite good. She can find and separate pages of a book to open.

This picture is about a month old. When Kaitlyn was first standing, she wanted no part of holding our hands to help her walk. We used a Johnny Jump -up sling doorway thing (we never used it as a johnny jump-up) Not sure how big a fan Kaitlyn was of the process.
This friend of mine (Heike) is actually the reason that Brian and I met. Heike and I played ultimate frisbee together and hadn't spoken in quite some time - with all that had developed in my life. Little did either of us realize, but we both had preemies! Her son Lukas was born at 32 weeks. He is only 8 months old in this picture and look how he is about the same size as Kaitlyn at 13 months adjusted!
My friend Sue gave us her little tricycle with a handle on it. This was K's first time.
Making her fish face with dad.

I've found myself in Child Care Hell

Time just flies by (I guess that’s motherhood for you). I always seem to be soo busy and so much happens between blog updates, that by the time I can find a few minutes (hours) to do an update, it always needs to be a really long update….

Here you go…it’s looong, just warning you.

We’ve had some recent developments on the “nurse” and child care issue…It’s hard to know exactly where to start with this one.

If you don’t want to read about my child care episodes, then you can scroll to the bottom of this post for basic Kaitlyn updates.

Maybe I should even take a further step back to last year, when I decided that I’d had it with the nursing shortage and tried to find someone on my own:

(This doesn’t seem related, but I’ll get to that in a minute): My local twins mom’s group had adopted a local mom/grandma, named Donna, whose daughter and son-in-law in Ohio were killed in a car accident. This Ohio mom had 4 children (1 set of twins). And the grandmother (who was taking care of her own 1 daughter lived here in Marin) drove to Ohio to pick up the children to bring them back, and was then in a car accident coming home and was disabled so she couldn’t work herself. It was a horrible tragic story. Our mother’s group had this amazing outpouring of support, donating grocery gift cards, food, toys, clothes and even car payments made out to “Ford.” There was even a benefit concernt planned.

Back to my child-care story:

I called on an ad placed in Craig’s List by a mom who swore by her care giver. She had been taking care of her infant (full-term) son for 6 months on a part-time basis and wanted to help her find more work to fill out her schedule. I spoke with this mom on the phone and she indicated to me that she loved her care-giver, the woman was a bit older and very caring and loving, she was also a retired trauma nurse. And the best thing was she was charging under the going rate for nanny-help. Her name was Donna.

I figured I could supplement the nurse I had 2 days a week with help I hired on my own. I decided to have her come over and interview her. Upon first arrival I was surprised to find her hand in a cast, she said that her granddaughter had mistakenly bent the finger and broke it. I asked her to wash her hands (standard practice in my home with Kaitlyn’ issues). She seemed to balk a bit (I was a bit concerned, but figured it was due to her cast). (In hind-sight this should have caused bigger alarm bells going off in my head). A nurse complaining about my request to wash her hands?

Then after talking a bit, (it was time to feed Kaitlyn) I got down on the floor and asker her to watch. She had quite a problem sitting, as one of her legs didn’t bend at all. I wondered how she could do infant care…She said she had been in a car accident a number of years ago and left it at that. I showed her some syringes and how to attach the tube (I was assuming that she would know how syringes worked as a retired nurse). She asked me if I had videos for Kaitlyn to watch, baby Einstein or something, I said that we don’t let her watch videos (well, we do let her, but on rare occasion, and Kaitlyn seems just fine and happy without them). I would never let “help” use a video instead of watching her. (Another alarm bell).

She said she used to care for a set up twins with a 3rd sibling for 2 years (I asked for their names, as I know most of the local twin families). I planned to call them (but hadn’t gotten around to it). I thought 2 years, wow, they had to be happy. Donna said she even just received a Christmas card from them with a picture.

This woman also took care of her granddaughter (aged 13) and needed to go home to pick her up from school at 3 pm every day. That was going to be a bit hard with what I needed, but I’d try it out. I decided to have her back for a day of training.

After she came I said to her, “wow, isn’t it funny, but my mother’s group adopted a women named Donna who now has 5 children to take care of and she too was in a car accident and from the east coast, but you couldn’t be the same Donna, as she has all these kids too look after, what a coincidence that you have the same name…

I showed her feeding tubes, syringes how to attach to Kaitlyn, this was all a bit difficult with her cast, and I would say things like “as you know, you need to pull the air out of the syringe so it doesn’t get into her belly,” most of my training was based on someone who supposedly was a nurse. Alarm bells were really ringing when she didn’t seem to get the hand of taking the tube out of Kaitlyn’s mik-key button (on her belly). I again thought it must be the case. She had a hard time getting down on the floor (as her leg didn’t bend). She elaborated this time, saying she was in a horrible car accident number of years back, where the passenger she was with was killed and she almost lost her leg. Now she couldn’t bend it at the knee.

I was worried, but kept thinking of the mom I spoke to who told me that she LOVED this women, had her for 6 months and had only the best things to say…For about 2 hours (I was home) but I left Kaitlyn in her care (while I took a shower and worked a bit). My gut was telling me something was “up”. Donna was due again the next day, where I was going to leave the house for a few hours.

Later that night (after she went home), I got a call from a friend in the twins club. She asked me if I had read the recent emails about the Donna mom the club and community had adopted. I said no, I thought it was just more outreach and update, (I saw the emails, but hadn’t had time to read them), but instead it was an email alerting to the fact that they would no longer be adopting Donna.

When my friend was at Donna’s apartment delivering all of the donations, she asked how Donna managed to go to the store and such with so many children all on her own. Donna laughed and said that she found out that our local town was very cautions about things….she went into the grocery store, and left the 1 year old in the car with the car running. Someone saw this happen and called the local police. After Donna was back home the police knocked on her door to ask about the incident. Donna said she didn’t know that was bad and that she wouldn’t do it again (sort of funny that she told my friend this horrible story in the first place).

My friend then told me that the Donna the club had adopted was a TOTAL SCAMMER. It was all faked. The Donna did take care of her 13 year old granddaughter (not daughter), was disabled from a car accident (but it was years ago) and her daughter was alive and well in southern California. My friend figured this out when she went to deliver the amazing “booty” of donations and Donna showed her a picture of her “3 children” (twins and other sibling) who were out at the time. The 1 year old and the 13 year old were with Donna at her apartment. My friend recognized the children in the picture as being the children of another club member. Remember that Christmas card that “Donna” told me she had received from her former charges? Well, Donna was pawning off that picture as 3 of her deceased daughter’s children. The 1 year old that was at the house? Well that boy is D, the son of the mother who placed the ad in Craig’s List who Donna was really the nanny for. The 13 year old, well that’s Donna’s granddaughter. It was all a scam!

My stomach fell to the pit of my toes. Oh my gosh….Thank god I never left her alone completely with Kaitlyn.

My friend called the mom of the kids in the picture and asked her about it, as she wasn’t 100% sure it was her children. Immediately the 2 of them figured it out. The real mom of the children in the picture said she had been in conversations with Donna (she too didn’t put 2 and 2 together) and Donna indicated that she had found a 2nd job (in addition to being a nanny for the boy D, of taking care of a special needs baby who was surviving twin. The twin moms figured that it might be me that she was speaking of, hence why my friend called me and asked if I had hired a new nanny….

Donna had the gall to say to my friend that she didn’t’ want my friend to be her contact any more and that she would still like to receive donations……..!!!

The police were brought into the situation at this point. Donnas daughter in LA was notified (not sure why she didn’t’ have her own daughter in the first place), but she came to get her daughter.

I called Donna to say, “it just wasn’t going to work out with the case on her hand…” She HAD to know I would figure it out. I had told her that I knew of the “Donna” charity case earlier!

I called the mom from Craig’s List, and she had NO idea of this whole situation. I told her the story about the charity case scam and that it was the same person. I told her that Donna had left her son in the running car when she went into the store. I told her that Donna was pawning off her son as her grandson. The poor mom about had a heart-attack.

Can you believe that! It’s been a few months since this all happened, I was so upset and overwhelmed and embarrassed. So, basically it was back to the nursing agency for me, as they screen and verify their LVN’s. The wonderful nurse (RN, highly overqualified) I had last year (she only wanted to work 2 days a week) was leaving at the end of the year to retire for good. I knew I needed to find new help for the new year, and forget trying to hire someone on my own after that episode.

2nd child-care story:

About 1 hour after I received the call from my friend telling me about Donna the scammer, my door bell rang (I forgot that I had set an appointment to interview a new nurse from the nursing agency.) I wasn’t in a good frame of mind about having someone “new” take care of my child after this whole thing had just happened. In fact, I felt absolutely “sick” to my stomach.

In walked “T”.

I could smell her before she walking in. the perfume aroma was so strong it about made me want to pass out. She started off apologizing for (I can’t’ exactly remember what) but just apologizing (for being late for being at the dentist and talking funny , for how she looked . Anyways... She apologized a lot.

We had a chat. My gut instinct was going into overdrive with this one right away. Was it because I just had the horrible scam scare? At least the agency was supposed to pre-screen these LVN’s, right? She seemed a little “off” to me. I couldn’t put my finger on it. I called Brian afterwards and told him about both situations. He asked how this new nurse was, it was hard to explain, something just felt off. I said she seemed “ok” but seemed a bit crazy to me.

I happened to tell her that I was going to be in Napa (where she lived) the following day to speak to the March of Dimes California employees. She said, well you have to come by then to see where I live, I want you to see my apartment and how I live so you can trust me. I thought what the heck. Why not. I wasn’t all that thrilled about it, but she absolutely insisted (like she’d take offence if I didn’t go). So I went.

She had formal china out, with petite-fours, and proceeded to apologize for everything, was the coffee hot enough, was the petite-fours ok, and on and on. She walked me through her house and showed me everything. Hard to understand? In her living room, she showed me every single picture, who was in it and when she got the frame. Who gave her each knick-knack, and on and on. I mean this went on for an hour, (her apartment wasn’t really all that big either). I was having flash-backs from when I used to work with senior-citizens and I’d be “stuck” inside a slightly senile person’s home. Again, best way to describe it, she was a bit crazy, but very, very conscientious, neat and seemed to care a lot.

The nursing agency hadn’t found me anyone else. I thought ok, I need the help desperately, she can work 4 days a week, and flexible days, I wondered about her hour+ long commute to my house, but decided to try it out.

She wanted commitment from me that I’d hire her for the year, as she was really excited and needed a full time job. I asked if I could call references (after the Donna issue) she said yes, but she had to warn me a bit about the woman (Named Liz ) that was her reference. Well, I never got to call her, as the agency didn’t allow it for privacy practice issues. How ridiculous. So if you are a Liz, with a special needs child and had a nurse named T, please call/email me!

Her first day a few weeks later I started explaining how to defrost breast milk and combine with formula. Our previous nurse, Lucy, was here to help train her. I really wanted Lucy to help me determine if T was the real thing and wasn’t crazy. I wanted someone else’s opinion, a trained impartial opinion. Kaitlyn got different amount of milk/formula with each feed of the day and different again for the night time feeds. 4 day bottles, 3 night bottles, each with a set volume in each, just different mixture. (night ones all the same) - Not really all that hard.

Now you’d think that I was explaining how to make a rocket-ship or a complicated biology concoction. T couldn’t get the hand of it for the life of me. Lucy felt that she was going to be “ok” but definitely was going to need some more training. (Now I trained Lucy for a total of 2- 8 hour shifts. A NUMBER of shifts (5) later, and T still wasn’t getting it. I had spelled everything out in a nice typewritten chart.

On the 6th shift I told her I had serious concerns about her learning curve. She broke down completely. She started crying and saying there was no way anyone could learn this when so many people taught her (Lucy, me and my husband). Yes, I’m sure we all have slightly different methods, but how different can it be?

As a final straw she drew out (you have to picture this in your mind) little baby bottles on paper. She had to draw a line on each one indicating how much milk and how much formula. I kept talking in ounces she kept trying to convert everything into ml (30 ml = 1 ounce) we keep in ounces to make it easier when figuring out total volumes. I stood there, trying to keep a straight face, not really believe that anyone could be that lacking in mental capacity. She really had to be the stupidest person I’d ever met.

At the same time, she seemed very loving and caring of Kaitlyn, handled the gtube and syringes just fine, and in the big picture of things if she couldn’t figure out the feeds, I would just make them up every morning. She was as honest to a t- if anything happened while I was gone or out of the room she always told me (I think it’s a gene she has for honest). She apologized many times for nothing. “Oh, I haven’t combed Kaitlyn’s hair yet”, Oh, I haven’t straightened out K’s play-pen, you get the picture.

That was in early January. I finally had the “guts” to tell her to stop wearing perfume after I got so tired of Kaitlyn and all of her clothes, and the entire house smelling like T. I don’t think that strong smell could possibly be good for a lung fragile preemie either. She had a bit of a break down when I asked her this.

She called in sick, after one stint when she worked 3 days in a row. She asked to go to starbucks the first few shifts (I put an end to that), she brought her own coffee cup, and asked if she could make coffee (no problem, but I don’t think she could figure out how to use the coffee maker). She asked to go home early, she told me all the time how tired she was.. She spilled an entire cup of coffee all over the place saying it was starbucks fault for not putting on the lid tightly. (I’m patient, things happen, no big deal.). She called in sick again. Then she started saying that she could only work 4 days in a row. This is after she knew our schedule (my husbands work schedule, which is NOT days in a row). Once again, it was a rocket science type of conversation; I even got the agency back involved. Something was weird. My gut all along was shooting me lots and lots of warning signals. But I needed help. I have to work. My husband works 24 hour shifts and I was desperate.

I came to the realization that I think she needs to be on some type of mental drug. She really is a bit crazy. It’s hard to explain unless I give you one example which happened just last week. One day she came in at 1pm so I could take Kaitlyn to her eye doc appointment and so Brian and I could have our first date night since our vacation (last august). I was working in my office when I heard T interrupted me…. (I never really got any work done was T was there as she interrupted me constantly with ridiculous questions like “do you have a 3-whole punch?” my reply: “T, you asked me for one a month ago and I gave it to you.” “No you didn’t” “Yes I did T, and it’s next to her nursing chart.” Lo and behold there it was. )

“Wow, that hairspray that I put brushed on Kaitlyn’s hair smells really strong.” OMG. I smelled this very strong smell (I knew it right away that it was the supposedly-lavender room spray that I sometimes would spray in Kaitlyn’s diaper pail (it wasn’t a nice scent really, I was going to get rid of it, it was waaaay to overpowering). I kept it in the drawer of her changing table.
I came out of my office and T had put this spray on a brush and put it in Kaitlyn’s hair!

WHAT WAS SHE THINKING???? Hairspray on a baby? What in the world? Yes, K’s bangs are long and get in her eyes, who cares!!! Hairspray. I don’t know which is actually worse, that she would put hairspray on a baby, or the fact that it wasn’t hairspray. I said to her, “Umm, that was air spray not hair spray.” T’s response, “Oh, I must have misread the bottle” I though well maybe that was the case, ‘Air spray’ vs ‘hair spray’ but hairspray on a baby? Then I looked at the bottle. Now, you tell me if it’s made for a baby? It’s not “air spray” it’s “room and pillow spray”.

Then she had the gall to tell brian and I, “well, you know, it’s really only 50% my fault, but the charge nurse wouldn’t say it’s my fault, but I’d say it was 100% my fault???”. What????? Because I had it in her changing table, I guess was her reasoning.

Well now that horrible, way too strong non-lavender smell was on my baby. And it was HORRIBLE. It’s now 1.5 weeks later and I still smell it. I’ve washed her hair so many times I can’t even begin to tell you.

Does that explain a bit of her mental state?

T then called in sick last Sunday morning with an hour notice, saying she had to take someone to the ER the night before and now her nose was dripping. I said she had to come in, as I had to work on Sunday, and then she called the agency saying she had a fever and wouldn’t be in. Kaitlyn had to come to an open house with me. Let’s just say, it was a night mare: I had to pack, play pen, food (blenderized) syringes, burp clothes (heaven forbid she threw up at the open house- she didn’t), I had to shower, put on a suit, go to my office, make flyers – you get the picture. And she cried the entire open house (her quiet paralyzed vocal chord cry, but she never cries). It was a night mare.

She was due back on Wednesday. I had already “had” it, by this point, maybe she knew when I insisted she come in when she was telling me she was sick. I called the agency, royally pissed off and said I was done. They needed to get someone else here pronto. No more partial T, I was done with her. (and told them about the “hair spray” episode)

Tuesday night the agency called in saying that she’d “hurt her shoulder” lifting Kaitlyn and that she was going to go on disability!!!!!! How she had done that between the hairspray day (which was her last day) and not having worked for 5 days or so, I have no idea.

I about flipped. She had been telling me that a nurse friend of hers was on disability and she was making so much money. I told the agency that I would be “happy” to be a reference that she indeed hadn’t hurt her shoulder and it was likely a scam.

If you’ve read this far and want to read the Kaitlyn update, here it is:

So, to make a 7 page typed written story “short” I have no help currently.

I am looking to hire a nanny that was recommended to me from a friend’s nanny. No more nurses. No more nurses agency. I’ll pay for it on my own to have control. People tell me to go to Craig’s list. I’m a bit wary (although I’ve bought and sold everything on Craig’s list in the past). This is my daughter we are talking about! I love working, but at times like this I wish I could take a few years off until she is better. We can’t afford for me not to work. And to be honest, I love being a Realtor so much it is such a great mental break for me to be away from feeding tubes/vomit and therapy appointments. And having help with Kaitlyn isn’t really just for me to work, it’s also to give me a break. So Brian and I can go out and have dinner together more than 1x a year. So I can exercise. So I can do blog updates (my therapy), so I can do my taxes, etc.

I’ve interviewed a few limited-English speaking nannies, and am actually very excited. Although I’ll have a language barrier in teaching them (they’ll have translators to help me teach them), once they can learn the gtube and it’s stuff, I think Kaitlyn will be in tender, loving and intelligent hands.

Kaitlyn has now been on a blenderized diet for 7 days. It’s continuing to go very well. I know that I am under her total caloric need for the day, but many children don’t eat their total caloric intake when they are “mouth” fed children. If I can get her to stop vomiting, I think that she’ll start eating.

So far, she’s taking a few sips of water still and nothing more than that. Although today I was eating soup, and she actually took about 5 sips of broth from my spoon (not interested in the broth on her spoon). This was so exciting. It’s fairly sad when you run to the phone to call your husband to tell him that your child ate 5 sips of chicken broth/soup.

But we have a really long way to go until she can get off the tube. A LONG ways. I’m hoping that something will “click” someday and it will be shorter than I’ve planned, but now I’m just saying it’s going to take “years” for her to eat.

Yesterday she broke out in a fever and a runny nose and threw up 3 huge times. Her runny nose is gone today, but still has a fever. She’s also very cranky (very unlike Kaitlyn). I’m not sure what is going on. No runny nose at all today, just a fever still. Here is a picture I captured the vomit was all over a water bottle, and check out the spray pattern all over the floor, my slippers, pants, It went out for about 5 feet. When I say "huge" vomits, I mean HUGE! She started on her own, standing over the water bottle, than I grabbed her, held her mouth down and she let loose the rest. I debated running her to the kitchen sink, but I well could have had a larger spray pattern, she I kept her in one spot. awful. Poor baby.

Kaitlyn is incredibly close to walking. She can now take a few steps all on her own, but doesn’t yet have the confidence to walk without support of: a wall, furniture, her cart or me. Remember months ago I was concerned that she wouldn’t want to hold my hands to walk? Not any more, she loves to and can now even do it holding onto only one hand.

I have to say that I don’t think her preemie issues are going to affect her motor skills long-term whatsoever. This is such a big deal. So many micro preemie friends of mine children have a lot of long-term affects from being micro preemies. Cerebral palsy is probably the largest issue. My heart aches for my friends and their children at the same time I feel relief that my daughter is doing so well.

On the other hand, socially, Kaitlyn is still having issues. I know she understands but doesn’t show many outward communication displays. She doesn’t babble like most babies. She doesn’t gesture to things she wants. She doesn’t point to things she wants. She rarely smiles.

I don’t know what it all means. Am I just worried for nothing and she’s just slow at coming out of her shell. Is it all caused from being in the NICU for 4 months? Or does she have some sort of autism?

I think being a preemie parent inherently makes us extra especially worried about everything. I hate that. I read all these studies that talk about early intervention and I wonder if K is getting enough. (she has therapy 3x a week now).

Thank you for reading (if you’ve made I this far) and thank you for your continued support.

vision and diet....

Today was Kaitlyn's vision exam. And we have good and bad news.

The good news is that her eyes don't seem to be horribly affected by having Level 3 ROP in both eyes (severe) or having laser surgery to correct it. She will likely have some peripheral vision loss, but she has to have a super special exam for that (we are working on scheduling it).

The bad news is that she is quite near-sighted (limited seeing far away). How in the world the doc can tell by holding up a glass to her eyes and looking in I have no idea; but her eyes are -4.0 in both eyes. (my eyes are -1.5/-1.75 in comparison)

Our little Kaitlyn will need glasses. How in the WORLD are we going to get her to wear them. She thinks it's fun to pull off my glasses and I can put them on her for a second (she smiles) but they are off immediately.

Any suggestions out there from other preemies needing glasses and how you got them to wear them would be much appreciated!

She's still only 13 months adjusted and too small to "realize" that they are making a difference.

On the Diet topic,
Today is Kaitlyn's 2nd day on a "Blenderized Diet" She had 1 huge vomit yesterday, but so far so good. I"ll take 1 vomit a day! She's been on baby food (via tube) for about 1.5 weeks now and we've definitely had a decrease. Still she's been getting formula at night. Tonight will be her first night with NO formula at all! Only real food that I put in her Vita-mix super duper blender (green beens, apple, flax seed, olive oil, milk, yogurt, avocado and chicken!). Yummm (just kidding - it doesn't look very good all blended up).

I'll still have to feed her through the night via pump (as we cant' get enough volume in her during the day) and the thick stuff doesn't go through the pump very easily so Mom got very little sleep last night as the pump kept alarming...Yuck.

Kaitlyn eating (not)

giggle

Kaitlyn is 13 months adjusted/16 mo actual

Sorry for the long delay in posting, at least it will be worth it, lots of pictures and videos for your enjoyment!

Many of you have asked what Kaitlyn "sounds" like with her paralyzed vocal chord. In this video of her not eating, you can hear her croaky, duck-like voice. This video also shows that her eating progress is not progress. It's very frustrating. She's been vomiting non-stop. She does take a few tiny sips of water at the end, but that's about all we can get out of her now, and sometimes she even refuses that.

I've started doing a trial transition with jar baby food, mixed with formula and breast milk.

The good news is that Kaitlyn is VERY close to walking! yes, our miracle little daughter is reaching out to us and taking the leap of faith. She doesn't realy move her legs, so if we weren't there she would definitely topple over. She can also stand on her own for up to 2 minutes if she's distracted. Her motor-skills are doing absolutely fabulous! Tonight she walked quite a few steps on her own holding on to

Grandma Mame (Markie) is in town

Today Kaitlyn is 13 months adjusted and 16 months actual. It's also just a few days and a year before she came home to us after her 127 day hospital stay on 2/9/05.

Sorry it's taken me so long to post, life, vomit and work have gotten in the way! Brian's mom Markie is in town, and Grandma has been snapping a lot of pictures:

Dad giving Kaitlyn a bath (this is a RARE thing, mom went out to dinner with a twin mom who has 2 sets of preemie twins and one has some new severe eating issues. We had a great time at dinner talking about vomit, feeding tubes and such - all over a glass of wine of course!

Wrecking havoc in the house - yes we have a toddler in the house.

She is the Queen of the pout! Watch out dad.

Brian's mom Markie is in town and we visited Dad at the fire house yesterday. Grandma had a lot of fun! Not sure if Kaitlyn did or not.

Sadly, Kaitlyn wasn't much of a fan of Markie "saving" her. I'm not sure if she was scared or her feeding tube got hooked on the equipment. Markie checking her "equipment" after the big save.
Markie in the firetruck (a truck is the ladder/equipment holder, where a fire engine carries water) Markie is in the tiller in this picture which is how you drive the back end of the truck.
She's having fun!

Katilyn's dad at work
Daddy's little girl.
Kaitlyn walking and crawling on the big firetable at the firehouse.Mom, Dad and Kaitlyn at the firehouse.
OK, this picture is for comparison purposes of last year's fire helmet picture (taken 4/06):

Same helmet, same baby!

Kaitlyn driving the fireboat

Trying AGAIN to post pictures

Blogger seems to be having some issues, i've tried posting the pictures about 4 times now, and when I leave the post they look fine, an hour later they are gone.

If you havent' done so already, be sure to say hi in my Guestbook post.
Guestbook

We had our first official SF/Marin Preemie Play date. I was too busy to take many pictures, but here is a picture of Craig (a 33 weeker) and Kaitlyn checking out the cook books at Craig's house. Craigs Brother Angus was also a preemie (29 weeker) and is sadly having eating issues. Craig and Angus' mom Lisa was one of Kaitlyn's breast milk donators. Craig is now 2 years old and is doing great!


Kaitlyn has taken to reading her books. Look at all that blonde hair! :) OK, yes the book is upside down :) This is how I found her in her crib when she was supposed to be going to bed at night!

Kaitlyn giving a teethy grin in her crib.

During our recent cold snap, we had frost in our backyard for 3 days straight - it never melted even though it was a clear and sunny day. Kaitlyn wasn't too fond of the cold grass! I guess you can consider this her first time in the "snow!"


I took Kaitlyn for a cho-cho train ride yesterday (well 2 weeks ago now) in her feeding supply box. She didn't quite now what to make of it. To me in this pictures it looks like she's just hanging out casually with her arm over her side "door" Funny! What a great commercial for Zevex, the maker of our feeding pump.

Milk update!

All my loyal readers probably know we've been on a search for breast milk. I thought I'd include the email I sent to over 40 yes 40! moms who wrote me offering breast milk!

This picture is 3 full coolers of milk that we just received from Hechung, a micro-preemie mom in Southern California. Someone heard my request for a Currier (Michelle from my local twins club) and offered up her father to bring up the milk from Sothern California. I don't think he knew what he was offering. Look at these 3 huge coolers!

Copy of the email I sent to mom's offering milk:

I am so terribly sorry it’s taken me so long to respond to your wonderful offer of breast milk for my daughter Kaitlyn.

I was taken aback by the number of responses I received from sending my email to the San Francisco Mother’s Club, (I guess it shows the power of viral email), as I’ve received emails and comments on my blog from moms all over the country! I received over 30 personal emails of moms offering to donate milk for Kaitlyn!!! The goodness of people touches my heart in such a way I can’t even describe. It also overwhelmed me, as I wanted to write a personal reply to everyone! When times are really tough for us (ie: Kaitlyn has vomited 10+ times a day), I think of all the wonderful mothers out there who have offered their precious liquid gold to us to help and it helps me get through the day.

Some mom’s offered to pump extra for us, or even to relactate again if they had stopped breast feeding! Wow, the generosity of these offers leaves me truly speechless, how horrible of me to take over a week to respond!

I so wanted to write everyone back personally, and at the same time became overwhelmed with normal taking care of Kaitlyn duties, as my husband was out of town for a week, I had to train a new news and had a root canal on top of everything (not to mention that I do work also). That it’s taken my way too long to answer to your most generous offer.

My good news is that a fellow Micro Preemie Mom from Southern California (Who I’d emailed in the past) heard that I needed milk. Her daughter was born at 24 weeks gestation and had been pumping ever since her daughters birth. Although her daughter never learned to breast feed, she is able to take breast milk from a bottle, but has shown a dislike for frozen breast milk. The mom had an entire full standing freezer full of breast milk and offered it to Kaitlyn. She used to write me while her daughter was still in the NICU, asking me questions and wanting support. I guess it’s her amazing way of giving back to me!

My task was to try to get the up here to us in the Bay Area (as I’ve paid for shipping for milk across country and it’s very expensive). A wonderful woman saw my request and offered up her father as a currier (he was visiting in Long Beach). We arranged for him to meet the preemie mom, and he brought us up 3 gigantic coolers of milk earlier this week.

We are hoping to try to start transitioning Kaitlyn to a “Blenderized Diet” which will basically be real food, put through a super special blender and then pushed into her belly. Think of it this way, once babies are over a year, a good portion of their diet consists of solids, but Kaitlyn refuses to take anything by mouth. All of her food has to be liquid. My desire to keep her off formula stems from her non-tolerance of it, as well as the fact that the older tube-fed children formula is full of corn syrup and other things that we wouldn’t give to “normal” child that did eat by mouth, so why should I feed my child this stuff?. I’m really, really hoping that the transition will finally solve our vomiting problems. Which then in the long run will hopefully help her to have positive oral experiences which may causer her to want to eat.

Currently, as her vomiting has been very bad the last 6 weeks or so, she’s back to refusing to eat or drink anything again.

Thank you thank you for your offer of milk. For the time being at least I think we are fairly well set on milk and hopefully by the time that we can successfully transition Kaitlyn to a blenderized diet we can “wean” her off breast milk. I’m hoping it’s ok if I keep your contact information and should we get low again I’d love to contact you back (should you still have your milk that is).

In the mean time if you do have extra milk and want to donate it, here are a few options for you:

The milk bank in San Jose: San Jose Milk Bank
Milk Share group on Yahoo. Milk Share Group on Yahoo
After I posted my request on my blog, I had a mom recommend the Milk Share Group on Yahoo. I never asked on the group for milk, as by that time I had so many offers of local milk. But there are many requests for milk for babies in need that if you have extra milk to donate, this may be a good place for you.

Some more pictures..

Sometimes Kaitlyn is actually "smiley" I was able to catpure some smiles the other day while she was climbing on the couch.

Even with a runny nose she was smiling and giggling!
When Kaitlyn was sleeping earlier this week (while she was sick) I found her like this in her crib. I think being on her belly helped with the congestion. Maybe she sticks her butt up in the air to get off her feeding button. It was too funny, I had to grab my camera. And this is a good example of what happens when she vomits, no matter how much I cover the bed with waterproof sheets/towels, she always ends up vomiting on the clean sheets, just out of range of the towels. (Yes that's her feeding tube snaking out of the picture.)

At a Christmas gathering with my dad...She's starting early with her beer drinking preferences!
More pictures of Kaitlyn with the fridge magnets.






Kailtlyn LOVES to take off my glasses. I've discovered that if you put them on her she breaks out with a big grin!

A picture for your enjoyment!

Although it looks like she's stable, if it wasn't for the fridge there's no way she'd be standing. BUT, she's doing great motor-skills wise.

What a week....

Have to keep this short....

But. First of all, thank you thank you thank you from the bottom of my heart for the recent tremendous response of offers of donating milk to my little Miss Kaitlyn! I'm overwhelmed with gratitude (and have received so many offers that I haven't been able to respond to everyone yet, and with the week I've had you may understand why I'm so behind).

We are doing well on milk donations for the time being, but I will get back to your emails, I promise (I've responded to about 10 so far, but haveI have about 25 more that I need to respond to!). As I said, I’m completely overwhelmed with gratitude by all the generous moms who have offered (some even before their babes were born!). WOW. It makes me speechless that that the world is a good place. Being a mom finally, I only now understand how special the bond is betwen moms.

And on the subject of breast milk donators, here is a great place if you have extra milk that you'd like to donate if I won't be able to get your milk: MilkShare This is a site for mom's to get in touch with one-another to either donate or request breast milk. How wonderful!! Someone posted this site on my blog comments and I wanted to share it with everyone.

Here’s my week:

Brian's been gone since Monday.

Kaitlyn came down with a bad cold on Saturday, which she promptly gave to me on Wednesday. Her cold and mucus makes her vomiting even worse than it normally is, so I've been up a lot at night. And, she now has a terrible cough too, so I've been giving her breathing treatments every 4 hours or so to try to keep it out of her lungs.

The cough sounded so bad that today I took her to the pediatrician's office and the good news is that its' not in her lungs, and her ears are clear too. phew that's a relief. I thought it sounded so bad the scare of RSV started hitting me.

Monday night I had a g-tube support group meeting in the city that I really wanted to attend, but had forgotten that Brian went out of town. Before he left he had adjusted Kaitlyn's car seat (she's in a big seat now, but the straps were set in the wrong place) so I had to figure out how to remove, adjust the straps, all while trying to hurry to drive to the city, in which I was incredibly late.

Lets see what else...

Hmm, I found out on Tuesday that I needed to have and then had my first ever root canal yesterday...fun fun fun! Wow, I really am 40.

And if you remember my saying that my nurse from last year officially retired, I've been training a new nurse this week that started out a bit rocky (and I'm very gun shy about help after a horrible nanny scam experience that I haven't had time to go into detail about).

I think the new nurse will be ok, but I’m telling you, wow, I've never had to explain the same thing over and over and over until I thought I was literally going to go bonkers, and I'm supposed to trust her with my daughter....? Her task that she was having some major difficulties with was defrosting breast milk and combining with Compleat (the formula we are currently trying). It’s not rocket science. I had it all mapped out, total volumes for each feed throughout the day, and after 4 days of explaining it to her multiple times, she still wasn’t getting it!

I showed a house last night to clients who liked it so I wrote up an offer for them to purchase it - I'll be presenting the offer on Sunday.

We are having a horrible cold snap (it's in the high 30’s now at midnight and is expected to hit the 20's the next 2 nights) and so the following story is worth a good chuckle now that it’s over:

Yesterday morning (after trying to clean up many morning vomits in bed with Kaitlyn (who wanted nothing to do with cuddling with mom in bed while mom tried to catch up on a few winks)...I heard this really strange noise, like a car warming up outside, but it went on for a while. Finally, with Kaitlyn in arms, I got up to get my day going (to defrost breast milk and other morning duties before taking Kaitlyn to one of her medical appointments) but found Kaitlyn’s Mylar balloon being sucked onto the heater air-intake on our ceiling. It was entirely covering it so no air was making it to the heater. That’s what was making the noise (and why it was so cold in the house). I grabbed a long broom (with Kaitlyn still in arms) and swiped at the balloon. Instead of achieving the intended results, the grill covering the heater intake fell to the floor with a loud bang and the balloon was swooshed into the air intake as fast as you can believe. FAST. Holy shit! I sat Kaitlyn on the ground, ran to turn off the heater (I wasn’t sure if Helium was flammable or not), got a flashlight, shined it up the shaft but the balloon had disappeared from view. (And of course Brian is out of town).

After a lot of calls to Brian I finally figured out how to get to the filter in the heater (no easy task, he coudn't even remeber how to do it) and unbelievably the balloon had made it’s way all to the filter, so I got it out. Phew, I didn’t know what I was going to do without any heat until Brian came home tomorrow. Hmm, well that’s about it for my week.

Kaitlyn weighed in at 18.5 pounds at the pediatrician today by the way!

Corinne Birthday Poem

I've been wanting to post this for a while, but here is a beautiful Birthday poem that Auntie Whitney wrote for Corinne on Corinne and Kaitlyns' birthday:

Dear Corinne,

My darling dear, forgive me, but I cannot tell a lie,
I'd much prefer to spend your birthday with you by my side,
But I'll tell you a little secret, I've never told a soul,
I heard it from a whispering willow a long long time ago.

A birthday girl is special, but a birthday angel is divine,
To bestow their birthday wishes all the Saints stand in line,
Every single angel, yes every single one,
Sings her Happy Birthday in choral unison.

Her candles are volcanoes,
Her balloons are shooting starts,
Her presents come from Earth and Sky and galaxies afar.

So Corinne, please know we'll celebrate you until you're 97,
And if you'll be strong, we'll try too, 'cause (shhhh)...
The cupcakes are better in heaven.

Corinne and Kaitlyn McCarthy were both due to be born 1 year and 4 days ago.
Whitney is a big lover of cupcakes! :)

A sad day...

I fellow online blog mom has had such a horrible sadnes..

Jennifer (who lives in Pennsylvania) delivered triplets, and sadly, all three have now passed.

Christoper lived for 28 minutes
Alexander lived for 11 days
Emily - just passed away yesterday and lived for 5 months.

Emily was such a tough, sweet little baby, but sadly her extrememe prematurity took her life also.

Premature birth is such a sad awful thing...

Please send your prayers and wishes to Emily's parents: Jennifer and Tony

Here's a link to their blog: http://jakae.blogspot.com/

I like to think of Corinne playing with all the other angel babies like Chistopher, Alexander and now Emily up in heaven. They didn't get a chance to live with us here on earth for very long....but they can be toghether and play for ever. All of the little babies that are so terribly missed by their parents.

Pictures from Kaitlyn's kidney test

Here are a few pictures (taken from my cell phone) from Kaitlyn's kidney test. She is completely strapped down, at this point, she wasn't crying, but the "calm" didn't last long.
Dad was nice enough to come to the hospital and help, even though he was at work.
When I pulled these pictures off my phone, I found the following picture that I forgot I had taken. This is a picture of Melissa, Caitlin and Dillon. They live in Southern California and I was able to meet Melissa and her children last November when she gernously donated some milk to Kaitlyn. Melissa too lost a twin from prom (water breaking). Her sweet Angel Madilyn is watching over her sister Caitlin. Caitlin was born at 24 weeks and is doing very well. Melissas blog is linked to the right.
 

Please say hello for 2007!

On the eve of my official due date and as I mentioned in my previous post, I'm absolutely amazed at the amount of visitors to my blog. I know MANY of you stop by and visit but never leave a comment. This time, just once at least please leave a message on this post. Just click on the comment link at the bottom right hand corner of this post where it says: Comments. You don't have to register, you can just click annonymous if you want to, please still answer these questions.

I'd love to know:

1. Your name (first name only is ok if you don't want to leave your whole name)
2. Where you are from
3. How you found my story
4. How long you have been reading it
5. Any comments you have for a "grown up Kaitlyn"

My entire written story will be saved for Kaitlyn to read when she grows older and I'd really love for her to know how many people have been praying for her and routing her on.

Thank you for your continued support - it really means the world to me and has helped me through many a dark day.

1 year old on 1/4/07

1/3/2007
Happy New Year to everyone!

Tomorrow is my last “tough anniversary day” in this journey we have been on. January 4, 2005 was my girls’ due date. Just think. If I never had my amnio, I’d probably just recently have given birth to my 2 little healthy beautiful twin daughters’ and my life would be completely different than it is now.

Brian is working a double (48 hours straight, so it’s just Kaitlyn, me, vomit and doctor appointments!)

Sigh…

Well I’ve got some updates, as always.

Yesterday Kaitlyn graduated from one of her doctors after a HORRIBLE test. (Good and bad news I guess). My big girl is graduating! (I guess I have to look at the bright side, right?)

Kaitlyn has had kidney/bladder reflux since she was released from the NICU last 2/06 Kidney reflux means that when her bladder empties the urine goes backwards (into her kidneys) instead of outside her body. She had grade 5 reflux (the most serious type) on both sides. This was bad. She’s been on a low dose of Septra (antibiotic) since this was discovered last February. I hate that she had to be on yet another drug, and long-term use of anti-biotic – yuck! Last February she had a powerful x-ray while they shot a contrast material into her bladder (via a catheter) where the reflux was confirmed.

In my heart I really felt that the reflux was gone, but the Urologist scared into continuing the antibiotic, as if I discontinued 9t, she could get really horrible bladder/kidney infections which could be kidney threatening. We were supposed to wait until next February again, but I really asked the doc if we could do it sooner as I wanted to get her off the anti-biotic. Yesterday she had to have this repeated - I had been dreading this test for months now. We found out once we got to the hospital that the test this time was even worse than last year.

First she had to have a catheter inserted into her bladder. Then she had to be constrained for at least 20 minutes (maybe 40 minutes) while they slowly filled up her bladder with a fluid and radioactive material (yes they brought the radioactive material out in one of the metal boxes with the scary radioactive symbol on it). Now, for those parents of Preemies, they probably well know that preemies especially HATE being constrained. I think it has to do with the fact that the first 4 months of her life she was constrained, wired up, tubes down her throat, into her hands, etc. Kaitlyn doesn’t like to be held, she doesn’t like to have her hands held and this sounded terrible.

She screamed (her fairly quiet vocal chord paralyses scream). It was terrible, tears rolling down her cheek – and my cheek! Brian was at work during the test (fireman, works 24 hour shifts), but he was able to leave to come to the hospital, I was so glad he was there to help hold her legs down. They then put towels all around her body and taped her down. All I kept thinking was that this certainly wasn’t going to help her desire to be held.

30 minutes later, as they slowly filled her bladder and waited for it to empty the test was finally over. But, at least we had some great news, it didn’t look like there was any signs of reflux. I had to go back to the Urology department (at UCSF) to wait to talk to him to give me the official answer. (there were at least 7 kids waiting to see him, uggh. I asked if there was any way (as my child was at RSV risk) if he could look at the xrays and call me with the results. They were actually really nice and had an assistant look and gave me the official word, she’s done with urology! This whole thing took all day long, but……

One less doctor for Kaitlyn to see from here on out!

VOMIT PATROL

The last few weeks have been really tough. As you all know, I recently commented on Kaitlyn’ progress with eating and vomiting….Well, she seems to have taken a turn for the worse again. It’s been really hard on me especially; as I was finally starting to think we’d turned a corner. Just a few days ago I had a 20 vomit day again!! Her phlegmy morning vomits came back. I have to empty her stomach and get 15cc’s of phlegm from her stomach. I’ve been trying to tell the doctors for ages now that the phlegm and the vomit are related. They just told me to talk to the lung doc about it (which didn’t make sense to me as the phlegm is in her stomach, not her lungs). The lung doc gave us inhaled steroids to give her (which is for asthma) to try to reduce the phlegm (I figured it wouldn’t work – it didn’t) and steroids are risky anyways.

But as the phlegm (and her noisy upper respiratory breathing) went away, her vomits greatly reduced and her desire to eat increased.

As her vomits returned (she never stopped vomiting before, but it was greatly reduced) her desire to eat/drink anything by mouth went away too. Where a few weeks ago she was actually pulling water to her to drink, now she’ll take one tiny bit and then push it away.

The phlegm went away on its own…and then came back…..I think I can attribute it going away to an alternative healer that I’ve been taking Kaitlyn to. Her name is Connie http://www.mymarinacupuncturist.com/index.html and she practices The Feinberg Technique: http://www.neuromodulationtechnique.com/

Today I had another appointment with Connie and she said that sometimes things can better and then worsen again. The previous week Connie concentrated on treating Kaitlyn’s “head shivers”. For many months now, Kaitlyn would “shiver” as if cold. She’d do this at all different times, mainly when she saw or noticed something. I didn’t really think about it after the last treatment (as I’ve been swimming in vomit and when something isn’t happening, you don’t think about it), but this morning I realized that she really hadn’t the head shiver thing much (or at all) the last 2 weeks since her last visit. This treatment is definitely a bit “out there”, but hey, I’m willing to try anything to get her to stop vomiting.

All of Kaitlyn’s therapists were convinced that she wouldn’t even crawl until she hit 12 months adjusted (now). And she’s been doing so great motor-skills wise. I think I can attribute the really great improvement in that area to another alternative treatment, Chranio Sacral Therapy Dr Barbara Newlon

Who knows if she would have gotten better on her own, but all I know she is improving. Let’s hope that today’s treatment helps get her vomiting back under control again. As 4 days ago I thought I was going to have a break-down when she vomited about 20 times in one day. It got so bad that I had to bring Kaitlyn back to sleeping in my room again so I could better listen and be there for night-time vomits. I thought we were going to have to go back to 100% breast milk again (right now we are on 50% breast milk 50% Compleat). She’s really started gaining some weight since we’ve successfully transitioned to 50% formula.

Weight check and other updates:

-Kaitlyn’s last unofficial weight is over 18 pounds (taken on our home scale).

-Kaitlyn loves to stand up (assisted). She can walk side-ways from furniture to furniture piece, but as soon as you try to hold her hands to help her walk) (Remember she HATES having her hands held) she lifts up her legs to sit again.

-For a few seconds she’s held herself up standing, but I don’t think she’ll be walking anytime soon, as there really isn’t any forward feet motion. The next physical therapy appointment will be good for this.

-The smiling has decreased as the vomiting increased.

-We’ve transitioned her to the big girl car seat, as her feet were hanging over the edge of her infant carrier. Strange to think that many parents transition from the infant car seats in just a matter of a few months after birth and for Kaitlyn it was 15 months!

-Synagis – Kaitlyn is still getting her monthly dose of Synagis ($1,500 each!) This helps ward off RSV that preemies with lung disease are very suspectible to. At least K’s Chronic Lung Disease is mild. A fellow micro preemie mom (Lovlorn twins) recently had to go to the ER as their daughter got RSV and had to be admitted.

Diet and eating
-Breast milk!!! Wow, I have to say the response I received from mom’s generously offering Kaitlyn their breast milk has overwhelmed me with gratitude. When things are really tough and I don’t know if I can handle much more, a wonderful mom emails me and generously offers her milk. This weekend I met 3 moms who donated milk to Kaitlyn, (thank you Mary, Marilyn and Jessica!) When we showed up at Jessica’s house, she even had dinner waiting for us to take home. The whole drive home I kept telling Brian how touched I am by the generosity and caring of others. And Jennifer (another micro preemie mom who has emailed me from Folsom), sorry I haven’t emailed you back yet to make arrangements, with the last few days of tests and such it’s been a bit crazy.

We’ve been trying to cut down on milk shipping costs (it’s crazy expensive to fed ex frozen breast milk over night), so I’ve been trying to find local donors. One mom (in LA (Orange County), (a fellow micro preemie mom, Hechung and daughter Alicia – linked to on my blog) has offered us a ton of milk, as her micro preemie doesn’t like frozen milk, and she’s been pumping for months and has a deep freezer full. If anyone reading this blog is driving between LA and the Bay Area, please let me know if you might be able to act as a currier and bring us some milk.

As awful as everything is, I have to try to find a reason sometimes for all of this happening to me, and I think of all the people I probably would have never met. I’ve been touched by so many people. I’m absolutely amazed how many folks have visited my blog…When I wrote my Christmas card just a few weeks ago, my blog ticker was at 63,000 - now it’s at 65,700. WOW!

-Eating progress – none, it’s gotten much worse again.

-Blenderized diet. My next goal is to start trying to transition Kaitlyn to a blenderized diet. She can’t be on frozen breast milk forever! This means we’ll be blending real food in a very specialized blender. http://www.vita-mix.com/ Children with g-tubes qualify to purchase a vita-mix blender at the companies cost with an RX from the GI doctor.

I’ve been very frustrated trying to figure out how to start this blenderized diet thing. I’ve been so forced into a box with how many calories and volume that Kaitlyn needs daily that I’m at a loss as to what to do. A local g-tube mom (Heidi) used a dietician in Arizona who I’ve decided to hire to help us get a handle on the blenderized diet: http://www.foodbytube.com/ She’s going to work out menus, fat, protein, vitamin, mineral etc requirements for Kaitlyn! I’m very excited. I think it is going to be a lot of work, but cleaning up vomit 24/7 is a lot of work too. Maybe this will finally help our little one stop vomiting. A Yahoo support group (Blenderized Diet group) had been a huge aid in supporting us. Blenderized-Diet Group on Yahoo

And, on the subject of g-tube feeding suggestions here are some resources
I’ve pulled together. Liz's G-tube Resources Page

Well, I’ll post some pictures soon for this post. I had to stop writing because the Physical Therapist came, and I’ve done a feeding which included cleaning up vomit 3 times. and I’m alone for 2 days!