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Saturday, February 24, 2007

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.

18 comments:

Melissa said...

Oh man, How scary. Wish I lived closer to you so I could help out. C&K could be super friends !!!
Hope you find great help!!!

Hechung said...

That story about Donna is so scary. It is so sick that people would take advantage of the generosity of others. I'm sure that mom is thankful that you let her know how Donna was actually taking care of her son. So scary!! I'm so thankful that my mom, hubby's mom and my sis live so close if I ever need a babysitter. I hope you find someone wonderful for Kaitlyn.

Yes, being preemie parents def make us more worried. My faith and my hubby help keep my worries in check. I sometimes wonder if we need more EI too bc we only get one therapy a week.

Yay to Kaitlyn for almost walking! I can't wait to see video of that. Okay, I need to read the posts above this one now. And yes, I read this whole post. :)

abby said...

Wow. Both nurse stories are so scary in such very different ways. T sounded mentally challenged and borderline illiterate to me. Donna--just plain pathological. I hope they arrested her.

Yay on Kaitlyn almost walking and hugs about the vomiting and the larger constant micropreemie parent fears. I was talking about this with Sharon and my MIL tonight and how I don't think they'll ever go away. Big hugs to you, Liz.

Shannon said...

Wow Liz!! Sometimes you really have to wonder about people. I have one nurse that works with Ashton who worked with him in the NICU as well. I however would like another nurse and just don't have the trust I need to do this. It is so hard when you are trusting them with your babies.

I have to make a comment about her looking at your mouth. Ashton ALWAYS did this. Then when we found out he was deaf it made total sense. He was watching our mouths because he couldn't hear. I don't know about Kaitylyn's hearing but has that been checked lately? Does she look at people when they talk to her? Just a thought.

I am happy to hear that she is doing much better on the blenderized diet. I really hope that the vomiting goes away for her. It is very difficult to watch your child vomit like that!

I hope that you find the help you need. It sure isn't easy being the mom of a preemie with issues.

Kristin said...

Yikes, you've had some crazy? times in the past couple of weeks...eek! At the end of the day, only we know what works for our families and our children and those red flags are our best indicators that there isn't something right in the world. I wish I was closer and I could give you a hand, I'm sure that Presleigh and Miss K could teach each other things that neither of us would be happy about :-)

Is there anyone on opposite shifts to Brian that has a nanny that they're willing to share? At least then the nanny would be used to the weird shift sched.

Emily said...

Liz I can't even imagine how I would have reacted to Donna. I just hope you find someone who you can trust to help care for that sweet baby girl. I know that it's been a small disaster for us finding a nurse that I'd allow to help with Dakota and now that we've found one, she has to leave! I can't imagine starting the process all over again.

I love the sweet smile! What a joy it must be to see her smiling after waiting so long.

Jenny said...

....wow. what a journey.

those two nurses really don't have brains do they? i mean i am 14 and i bet that I could figure out the g-tube, syringes, etc. easy with a little training! i mean it doesnt seem that hard...

i am so sorry you are having trouble with child care. some people...seriously need to get some brains! If i lived near you i could take care of kailyn once in a while (if you knew me LOL).

Sarah said...

Holy crap, that's a lot of serious crazy to run across in a short timespan!

I, too, wish I lived anywhere near you so that I could lend a hand even if it was just so you guys could go out to dinner occasionally!

Anonymous said...

Heya,

I've been following Kaitlyn's story for quite a while now. It's so great to hear how well she is doing.

I second getting her hearing tested again. Also, does she play appropriately with her toys, or does she do odd, repetitive things with them? Does she show any signs of listening to you and Brian when you talk to her? Does she have any behaviors like hand flapping, head banging, or something similar?

Here is a link to a blog about a little girl (now five) who was, until fairly recently, feeding tube dependent. Her mom is done blogging about her now that she no longer has her tube, but I'm sure she would be more than happy to answer any questions you may have. I wanted you to have some home for Kaitlyn. Even if her tunnel is long, there is light at the end of it! God bless.

http://www.caringbridge.org/mi/angelina/

Kim said...

Oh. My. Gosh. You never get a break, do you? I am so sorry that you had to deal with Pathological Donna and Crazy T. You, Brian and Kaitlyn deserve someone who can take good care of all three of you. Someone you can trust in your house with your child. Someone who can help bear the load a little bit. Have you considered going through a nanny agency? The fees are ridiculous, but they screen really well. I used to be a nanny (hired through an agency) and can tell you a bit about the screening process I went through.

Anyway, I am thrilled that Kaitlyn's motor skills are so great! She is doing so well--I LOVE the pictures of her standing! And as far as the autism question goes, only time will tell. Your little girl has had so much to overcome in such a short period of time. And she has done a remarkable job. Maybe she will overcome her social issues, too. And if she doesn't, she will be no less amazing and wonderful.

I like the idea of getting her hearing checked. Maybe she doesn't vocalize because she doesn't hear the vocalizations of others?

And hooray for following your motherly intuition about the blenderized diet--Kaitlyn is so blessed to have a Mom who makes sure she gets exactly what she needs!

Anonymous said...

My micropreemie 25 weeker was diagnosed with severe apraxia and I was told she would never speak in her life. She was like Kaitlyn and would look at you stone faced and didn't point, etc.

After 2x weekly of speech therapy for 8 months as well as giving her omega 3 and 6s oils (I had read a study from England about how lack of speech can be connected to this), she was released from speech therapy and is ahead in her speech (acutal age!) and runs around talking, singing, etc.

I wrote to you once about the long term antibiotic. The nicu experience as well as these medicines are affecting her body even if you need them (think of it like her need to detox), and you should try nutritional supplements like the fish and flax oils to see if there is a change. -E

Laura said...

scary story!!!!
about your daughter and your worries...you hit the nail on the head wondering if the 4 months in the nicu might have an affect.
think of how she behanved/coped in the nicue when overwhelmed, tired, overstimuloated, tired, in pain, etc.
that behavior still persists...well they don't go apneic or brady down but they do react when over stimulated. many micropreemies do have sensory integration dysfunction issues.
my son often can not cope with multple stimulators....fun when he has a few teenagers for siblings. he also can't dal with his feet being bare, even when it is more than 100 degrees and of course our trials and tribulations with feeding that you are living now. another is the vocal cord issue which affects the speech i have learned. they honestly are not aware that they are not vocalizing loud enough or at all. speech therapy will help that as my little man is a chatter box. you should have heard his running commentary tonight over the oscars.
i like the out of sync child as it helped me to appreciate how sensory stimulation we think nothing of can wreak havoc on our kiddos lives.
hang in there. you learn (quickly) and adapt, adjust and survive.
what my son's pedi reminded me last year is although the 132 days in the nicu is long behind us, it is not really that far away. it has helped to shape and mold him and we must accept it as an influence just as we are an influence.
take care.

Shannon and Carey said...

Liz. Kaitlyn sure has a beautiful smile! So sorry to hear about Crazy T and the Scammer. I too also hope she was arrested. How horrible. She could be on Dateline or one of those shows. People need to be warned about people like her. I too, like many of your readers, wished I lived near. I would do anything to help you physically. I do know that the nurses in our NICU babysat on the side. I know you said no more nurses but it's maybe something. I do hope you find the help you need.
Shannon

Andrea said...

Wow, that truly does sound like childcare hell. I hope that the perfect situation presents itself to you soon. I live in San Rafael and would love to be able to offer to help, but I work full time in the city and am expecting my first baby in May, so my hands are and will be pretty full!

For what its worth, going with an experienced nanny sounds like the right way to go. You just need someone smart and loving - someone who can understand Kaitlyn's feedings and keep her safe, happy and healthy. Good luck to you!

Andrea

Anonymous said...

Hi Liz: I read your childcare story, and it broke my heart. I had a bad scam of my own a couple of years ago that still haunts me. One of these days in the future, all of us 'scammees' need to get together, drink some margaritas and thank our lucky stars we all survived. In the meantime, you're amazing! I hope you're well. I know that you're in the day-to-day routine, but you must know that Kaitlyn's progress continues to impress me!

Maria Kallmeyer
(an MPOMC mom)

yp said...

~long-ish reply~ :o)

When Keith was little (trach, g-tube, massive reflux/no swallow/high risk for aspiration, chronic uri, etc etc) we started to lose nursing. I called the "Betty Blue" agency (which was a scam to find legal domestic help) - and the representative brought me two ladies. Both were of latin descent. One was a little older than me, very proper and stiff, spoke English very well, immediately told me she needed more money than what we were offering, and never went to Keith in thec rib. The other lady, Herminia, spent that whole time making faces at Keith,making him laugh and just delighting in him. She spoke adequate English, and the 'agency' lady almost fell off the chair when I told her we would hire Herminia. She stayed with us two years, and mastered the tube feeding, the trach care, the suctioning, every nuance of Keith's moment to moment care and loved him to pieces. Unfortunately (for us) Hermenia could not stay with us and we were on our own... until... I was pregnant with our third child two and a half years later. Now we would have three children under the age of five, none of them really walking, all in diapers, one still incredibly medically fragile. Our neighbor has hired a young lady, Rosa, from another "legal" agency, but they were now moving to Colorado. We were so lucky - we offered her a place with us. Now twelve years later she is still an important part of our boys lives. She lived with us for four years (two years longer than we needed - but heck), and now comes once a week just to be with the boys. They love her, and she helped us tremendously with all three of them. When we would go to early infant program, if she wasn't helping our family, she would be helping the Spanish speking families with sign language, coping with the system or anything. She was so proud when she completed her legalization process, showing her very respectable paychecks, and describing her job with scutioning, tube feeding, trach and g-tube care, sign language and all that stuff. So - this long post is to say - don't give up hope - we were able to find two wonderful people to help us with an incredibly medically fragile child with an incredibly idiocyncratic family..... :o)

yp said...

p.s. I think the short version of what I wanted to say is I know you will find the person to help you with your precious love - and she will be an expert on your baby. Herminia and Rosa both became experts on Keith - and then Rosa became an expert to the two that followed as well. They might not be able to walk into an NICU and know what to do for everybaby - but we didn't need someone who could care for any baby - we just needed someone to care for our baby :o) And I lost the point about the Betty Blue agency - I think they brought Herminia along to make the elder lady look 'perfect' for us - certainly she seemed it on paper - but in person, the one who won my son's heart won ours as well - and we had no regrets. Good luck, and thank goodness no worse came of your two dreadful experiences! It's like living part of the Jerry Springer Show!

Anonymous said...

Hi,

I just recently found your blog and am going backwards to the present...and I know you don't want to hear this, but the agencies apparently don't screen at all. I worked in an emergency room during medical school, and I cannot tell you the number of times that in the night or wee hours of the morning, they would bring in some woman who was drunk, stoned, or disorderly (often by the police), and invariably, they would go on about how they had to be discharged in time to make it to their job at 9 AM or whatever.

Invariably, their job was "home health nurse/aide." Some of them admitted that they mainly would do that job because they could raid people's medicine chests for old painkillers. I came to the conclusion that the agencies do no screening whatsoever (many of them did have criminal records).

We had the same thing happen - got an aide, and my brother's wisdom teeth painkillers disappeared with her. We're still waiting to find what is missing.

I'm further north than you, but where we finally found someone good was through an agency that helps resettle and employ Fijian immigrants. It is sort of a community/grassroots thing. English is a lot less important than decency and half a brain.

Sorry, this probably isn't even relevant anymore, as I'm commenting on something so old, and I didn't want to scare you even more. Just wanted to say, don't assume that an agency is better than any other way.


Sara