Wednesday, December 31, 2008
I've got to say:
I now feel if/when I post all the great things that Kaitlyn does (that I don't normally have a lot of time to post about because there ARE so many great things) that I'm doing it because readers have told me to. uggh. I hate that pressure.
I've been dealing with some serious lack of sleep as Quinn is refluxy/colicky. It's been very difficult on me. Guess that's what motherhood is all about, just learning to operate on a totally lack of sleep with a baby who is either really upset or happy/laughing. We have extremes with Quinn. He goes 2 hours straight at night time cycling between crying, eating, burping spitting up, sleeping (for about 3 minutes) for 2 hours straight. He's no closer to sleeping more than 3 hours at a time. During the day he only sleeps for 20 minutes at a time. I've been begging to my docs to get him a different reflux med.
Kaitlyn is amazing. There are so many times EVERY single day that she does the most amazing things. Her eating has been tremendous as of late (was going to do a post solely on this subject) as I'm in awe at the difference in my little girl in the last year especially in the last 2 months. Her speech has just blossomed lately, she's talking all the time and is now saying more sentences. Just yesterday for the first time she started asking: "What's that?" Now that she's figured out I'll answer, she asks "what's that" for everything! it's her "why" question that I'd heard about. We went to costco and she asked "what's that" about a million times and it was joyous!
I tend to use my blog as my own cathartic therapy. I used to journal when I was younger. When I've gone back and re-read my journals, it seemed I always wrote about the bad stuff, not the good stuff. I think that I feel better after getting things off my chest, hence why the negative posts, and don't bother with the good posts (just too many little amazing moments and too busy) Please keep that in mind if my blog has been negative. I need to vent. Doesn't everyone?
It's now New Years Eve hug your children, hug your loved ones and be joyous!
New Years day update:
I forgot to mention a few things, I didn't want to delete the negative comments on my blog as I do believe in freedom of speech and differing opinions. Just as not everyone has to agree with me, by deleting "negative" comments isn't really allowing freedom of speech on all sides. Also, I think it can be helpful to take in negative comments, absorb and process them and see if there is anything that could be true. I'm always up for growing. Hence why I went a few days without responding I was too mad and upset and wanted to calm down a bit.
Thanks everyone for your support and I hope your 2009 is starting out great.
Sunday, December 28, 2008
There needs to be a new syndrome called: "Extreme Preemie Syndrome" or EPS!
Kaitlyn's issues have never fit nicely into any of the standard "named syndromes" ie: Autism Spectrum disorder, Pervasive Development Delay, Sensory Processing Disorder....etc.
My gut has told me for quite some time that something with Kaitlyn just isn't right. I've been always on the look out for what type of "syndrome" can I call it so that she can get the help she needs.
Maybe I've been looking for something that doesn't exist.
This weekend was particularly exhausting, because when Kaitlyn is in a busy environment (think Christmas parties) she goes absolutely bonkers and so does mom trying to reign her in. She rolls around on the floor, bounces off everything, can't listen, can't pay attention, can't do anything. it's really, really, really hard to control her. I'm also "tired" of everyone saying, "oh, waht a miracle she is, she looks so great." grr. why does that annoy me so much. Yes it's true, she's come a long ways, but why do I always feel I have to explain all the things that aren't just right.
I wish I could say, oh, she has EPS she weighed 1.5 pounds at birth and everyone would say, "oh" and leave it at that.
Being a parent of a preemie, you are often told by doctors, family and friends that "oh, preemies catch up by age 2."
This can be said for preemies of later term gestation, (like my son Quinn) NOT for micro preemies. Surviving Micro preemies are fairly new. Children born as early as our children were born did not survive all that many years ago.
Kaitlyn, like many other Micro Preemies isn't going to "catch up" by age 2 or 3 or maybe never for that matter. This breaks my heart. It leaves a huge open gaping hole in my soul.
There has been a recent thread of conversation on my micro preemie support group about long-term issues related to prematurity that don't "fit" any other syndromes.
I never really thought of ALL of Kaitlyn's issues being directly related to prematurity.... well that doesn't come across right, as I know her issues are all related to her being born so early, but I never considered that her issues are "unique" issues due to prematurity (and not other developmental issues), but they really are. The combination of her issues are directly related to her prematurity and they are the same as other micro children.
So often all of her therapists have told me: "Kaitlyn's issues are really different than any other of my clients." I had never really thought much about this statement until now. Kaitlyn is so strong (and advanced) in some areas but has many other issues that don't fit into any commonly diagnosed category.
There needs to be a newly formed label called: "Extreme Preemie Syndrome".
Our children missed out on major development (sensory, neurological, mental) when they should have been in the nice quiet womb of mom. Instead, they were subject to pain, torture, surgeries, loud noises, bright lights. Their little brains had so much growing to do, think of the size of a brain of a 1.5 Pound babies brain versus a full-term 8 pound babies brain? All that growth that was supposed to be done in utero NOT in a hospital.
I heard a mom once say to me, trying to explain their child:
"Think of it this way, you know when you need an electrician to work on the wiring in your house, but you get a plumber to do the work instead? So when you click your garage door opener, the lights on your house come on instead of the garage door opening. Our babies little systems just weren't wired correctly."
Here are some posts from my Micro Preemie Support group that got me thinking:
"P was diagnosed with PDD-NOS when she was 4 (maybe 3-it was so many years ago that I can't remember now). I accepted the diagnosis at first (knowing clearly that she was so different than other kids) but eventually fought to have it removed as she got older. Although she is VERY different than other kids, she no longer fit the PDD criteria. I still feel, to this day, that there needs to be another name for the uniqueness of our former preemies. Call it preemie syndrome, or whatever, but call it something. Many of our kiddos share the traits that make them unique yet the traits do not fit neatly on a form in order to accurately diagnose. The bottom line is though, getting a diagnosis can be very helpful in acquiring services in the public school setting.
P is happy at times. She has mental health issues so her happiness does depend on her meds. That may sound horrible but I've come to completely accept that she will need the meds. She has an anxiety disorder and pretty severe OCD-both of which are virtually completely controlled by her current meds.
As for the teasing... yes she was teased. The teasing was hard enough for all of us to handle but it what was worse (in my opinion) was how she was ignored by other kids. They simply refused to play with her. Her kindly teach told us it was because she was so smart and had an accent. But it never got better.
Her sensory issues made it difficult for her. If someone would slightly bump into her (as kids do) she would start yelling that they hit her. She also has a huge problem with tattling. She is a literal child and never can understand that there are gray areas. Black and white only with her.
It got so bad that I watched my precious child slip into a dark place. She couldn't understand why the kids didn't like her and was never able to grasp the concept of friendships. We ended up taking her out of public school and now home school. She is doing much better now.
I'll never forget when I first joined the on line list for parents of school aged (5 and older) kids. There I was in a place reading about lots of kids with traits that I thought were unique to Paige. I cried for days. I don't think it was because I was sad but more because I thought we had failed her in some way and that's why she was turning out to be so different. But, in reality, she was a lot like other preemies.
Hang in there Liz. Kaitlyn's uniqueness will become even more apparent as Quin gets older. I find myself constantly amazed at the things that T (Stacye's 2nd child: a late-term preemie son)can do, when in reality they are probably normal. lol"
And from Anne:
"I completely agree Stacey that there should be something called Preemie Syndrome.
When E was getting close to being discharged from the NICU, her neonatologist was talking with me one afternoon and said (warned?) that while E had "escaped" the more obvious signs of being extremely premature, like vision loss, hearing loss, major breathing issues, etc. that I should always be mindful that no child fully escapes the effects of her extreme prematurity, that it is simply impossible to have missed an entire trimester of gestational development and walk away totally unscathed.
He said that some children may have minor problems that are masked by more typical differences (some kids will never be athletic for example so you might not notice a minor physical limitation) but others have more obvious issues like feeding, sensory, behavioral, etc. that can not be explained away by the usual labels.
This particular neo thought the whole notion of "catching up by two" was a load of crap and as those of us with kids over the age two know, it is crap. He was an older guy who you would have expected to tow the traditional NICU party-line so to speak, but he was pretty progressive in his thinking.
Not to long ago I was talking with this neo (I live 100 yards from the NICU so often run into these folks in the neighborhood) about E's feeding and sensory problems and he asked me if my family/friends/acquaintances say or imply that E has these problems because of something I have done or failed to do. I realized that people do assume there is something I could do differently or should have done differently to prevent the feeding and sensory problems and thought about the comments I have heard: I gave her solids too early; I gave her solids too late; I had the wrong spoon; I wasn't persistent enough; I should have made my own baby food and on and on. So I told this to the neo and he looked at me and smiled said something to the effect of "if E had lost her sight to ROP would anyone have been saying there was something you could have done to prevent it or restore her sight? No one would suggest you could prevent or fix something like that but people do choose to believe that you can prevent or fix feeding and sensory disorders with some magic parental bullet."
We talked for a good while about how the medical community and society forget that there are unseen effects from the NICU which are just as life altering as the more obvious problems yet research to prevent these problems is underfunded or non-existent since society really could give a rat's ass about the problems these kids have. So maybe this neo and I are crazy. Maybe I just have a soft spot for him because after 3 months of pumping every 3 hours with meager results he told me it was OK to put the pump away and have a nice glass of wine and that I was still a good mother even if I couldn't produce any milk."
Thank you Stacey and Anne. You make me happy to have you as friends!
Let's get on the band-wagon to start a new label: "Extreme Preemie Syndrome" EPS!
And you blog readers, please help! Help educate your own NICU docs. Your own school districts. Let's get studies funded. Our micros aren't an experiment. Our kids our suffering and we as parents are tired of fighting to get them help.
Wednesday, December 24, 2008
Here is my online version of my Christmas Letter this year:
Happy Holidays 2008! Dear Family and Friends,
It’s been a very busy year. We never got the chance to send out an official announcement, but we are very proud to announce that Quinn Edward McCarthy was born on July 21, 2008. He weighed 4 pounds 14 ounces, was born 6 weeks early and spent 3 weeks in the NICU. He was just small at birth and needed to learn to eat on his own before he could come home to his big sister! Mom spent 6 weeks on bedrest, 3 of them in the hospital, but today, at 5 months Quinn is doing great. He is suffering from some likely preemie related Reflux (pain while eating) so feeding him can be a bit trying at times, but all-in-all, he’s doing just great!
Quinn now weighs about 12 pounds, is smiling all the time and is a wonderful baby (when he’s not crying from eating!) He loves to watch his Big Sister, and Big Sister could care less about her Baby Brother.
Kaitlyn turned 3 years old on October 4th! The biggest news for Kaitlyn is that we were able to remove her feeding tube a month ago and she isn't vomiting any more! She hasn’t been fed via feeding tube since May, but sadly she hasn’t gained a lot of weight either. She now weighs just 26 pounds (she weighed 24 pounds Christmas 2007). When she wants to eat, she loves it, but still doesn’t eat very much (or often). Every month her eating improves, and it’s a joy to see her devour cupcakes and french fries! Every moms dream! J
Kaitlyn started mainstream preschool in September, but it was determined that she has a lot of developmental delays in which she could be better served by a “Developmental Preschool.” This is a special education program through our school district. She is now going to special school 5 days a week, but she gets to ride the bus, which of course Kaitlyn just loves. Unfortunately, it looks like Kaitlyn is going to be affected by her prematurity for many years to come. She is doing very well in many areas, but is quite behind in others. We are hoping that this program is going to help her be able to better handle Kindergarten when she turns 6. (We will be keeping her behind a year).
As always, you can keep up with Kaitlyn and Quinn on our blog: www.MicroPreemies.com We will be spending Christmas in Los Angeles with Liz’s family this year. Kaitlyn is very excited to have Santa Claus come visit. Seeing Christmas through her eyes is the most joyous thing and we can’t wait for Santa’s arrival. We went to Disneyland over Thanksgiving and Kaitlyn had a great time! (This year, I’m sorry to say, I just don’t have the time to write little notes on each of your cards in interest of just getting them out!) ~~~~ With lots of love, peace and happiness,
The McCarthys: Brian, Liz, Kaitlyn, Quinn & dearly missed Angel Corinne
Monday, December 22, 2008
Yes I sell houses for a living. I'm a Real Estate Broker. and I primarily sell real estate in Marin and San Francisco. (Realtors don't seem to have very good reputations, so hopefully you've gotten to know the real me and know that I normally LOVE what I do, as I get to make people happy). My clients often give me gifts after I help them close escrow. That makes me feel really good, to know that I've made a difference in their lives.
In the last 3 days, I found out that 2 friends purchased homes with other agents. Expensive houses! One of them was a really, really expensive home. If I had been their Realtor that income could have made a HUGE difference to my family. HUGE.
A few months ago another client didn't relist their house with me because I "just had a baby" even though I closed 3 other escrows within 2 months of having Quinn. I had received an offer in on their house for $50,000 MORE than the relisted the house for a year later, saying to me after they listed it that they "didn't want to bother me as I just had a baby", and this was after they give me a baby gift! Ugggghhh.
With having to be on bedrest again, having a new baby, and the market downturn, things are a bit tough financially at the moment for us. If I had closed those additional 3 houses this year, it would have made a big difference in our life. I never really push the fact of what I do for a living....maybe I should more? I'm not the pushy, salesy type.
We purchased our house when I was pregnant with twins, desperate for a place to live as our landlord didn't give us much notice. We bought it at the height of the market (7 offers on my house) and it's now worth less than what we paid for it. Our loan resets in a bit over a year. We can't refinance due to the amount of equity in the house. My husband's salary as a fireman doesn't cover our mortgage as it is today, let alone once the loan resets. Our house is too small for 2 children. We love our neighborhood, but hate our house. We are at a loss as to what we should do.
I'm really letting it all out there saying this publicly, but you know what? Life's tough at the moment, and hearing that I could have made some decent money was really quite upsetting. It burns a hole in my heart.
Then on top of it, a client of mine, a first time home buyer that I had in escrow (which has kept me running around the last 2 weeks (and all weekend) right before Christmas) decided to cancel his escrow last night. So I could have been doing my Christmas cards, I could have done a million things, but instead I did a ton of work for naught (granted that's my job which is OK, BUT the hearing the other sales that I didn't get has just set me over the edge).
How can you help? Yes you can help me!
So, to all those blog readers out there, especially the ones that live in the Bay Area....please if you know of anyone looking to buy or sell a house PLEASE, PLEASE think of me! I'm good at what I do. really! You KNOW me personally because of my blog, but if you want to know how I "work", here's a link to what my clients say about their experiences in working with me: What Liz's Client's say.
And if you don't live in the Bay Area, did you know that I can refer agents to help you anywhere in the country and I get a referral fee? Please let me help you find an agent wherever you live! It would mean a lot to me. Please email me here or visit my Marin Real Estate website.
Here's a Realtor Christmas video that I just came across that at least fit exactly how I've felt all weekend long:
Monday, December 15, 2008
Once again, nothing is easy is it?
Oh and Kaitlyn LOVED the bus today! I met a mom who just loved the school/classroom/teacher so I'm feeling a bit better about my decision to send Kaitlyn to special school. I'll get to meet more of the moms on Friday for the Holiday party.
I had always heard that Zantac rarely really works for reflux for kids...
Here is some REALLY great Reflux info that I wish I had read more about with Kaitlyn: Thought I'd share. All of this info is from the following website: http://www.marci-kids.com/
1. Regarding h2 blockers (meds like Zantac):
"Tolerance to H2 blockers can occur with prolonged administration; that is, the medication will no longer inhibit acid production, even if the dose is increased. Although your child may feel better at first, the symptoms will often return within one or two weeks, even after increasing the dosage.:
Regarding PPI's (Prevacid, Prilosec)::
Proton pump inhibitors (PPIs) are chemical compounds that irreversibly inactivate the pumps that produce stomach acid.
1.Zegerid powder for oral suspension is the only commercially available immediate-release suspension that is FDA-approved. It is helpful for pediatric use because it is a true suspension that contains no enteric-coated granules that are difficult for young children to ingest. Parents therefore don’t have to worry about their child chewing the granules, which would expose the PPI to stomach acid and reduce the effectiveness of the drug.
2. H2 blockers will prevent PPIs from working if they are taken too close together. For this reason, H2 blockers should not be given within 4 hours of giving a PPI.In-depth look: PPIs work by directly inactivating the acid- producing pumps in the parietal cells, but they can only have this effect if the pumps are actively secreting acid. Because H2 blockers prevent the activation of pumps, they can actually inhibit the ability of a PPI medication to have its effect when they are given at the same time (together). However, giving a PPI in the morning and at midday and then an H2 blocker at bedtime can allow these two classes of medicines to work together (since they are not in the bloodstream/body at the same time).
3. PPIs are often under-dosed in children (see PPI Dosing Information). Because it has been found that children metabolize PPIs more quickly than adults, we recommended administering them 3 times a day for children under 2 years old.
4. If you are currently giving your child a compounded suspension of a PPI such as Prevacid made by a pharmacy, you should know that there is a good potential for the medication to become inactive (and therefore ineffective) in a much shorter time period than your pharmacist may be aware. The loss of activity is related to the effect of the flavorings added by the pharmacies. The flavorings cause the PPI to become unstable and break down so it can no longer inhibit acid secretion. Laboratory testing has shown that the majority of such compounded, flavored preparations become inactive within a week.
In addition, many pharmacies do not add enough buffer in their suspensions to protect the drug from degradation by stomach acid. This is particularly a problem if the child is receiving a very low-volume dose—less than 3 mL, for example—because the amount of buffer likely won't be enough to protect the PPI from degradation by stomach acid.
5. PPI drugs have an effect on the production of acid that is related to the amount of drug that is absorbed into the body. This amount of drug is known as the AUC or area under the curve. So, when planning out a drug regimen with a PPI drug, the best thing to do is to try to achieve the AUC that is known to inhibit enough acid in 24 hrs to reduce damage and reduce symptoms. In other words, you have to give enough PPI--and frequently enough--to get the desired effect. If a PPI is underdosed, the child will continue to suffer from acid reflux and the symptoms may be misdiagnosed. The most revered author in the treatment of reflux in children states in his excellent recent review, “...the most common error in PPI prescribing in children is underdosing. In fact, if the diagnosis in a child is GERD, and there is poor response to PPI, the likely problem is either that an insufficient dose has been used or that the patient is not taking the medication.” -Eric Hassall*
6. Is it possible to give too much PPI?The short answer is no. Fortunately, PPI drugs are very specific in where they work in the body. They are only active in a very specific place – that is the acid secreting cell, parietal cell. Since PPI drugs only work on the acid secreting cell the chance of side effects is very, very low–even if you give 3 times more than your child needs. In fact, PPI drugs are known as prodrugs because they are not active as they pass from the bloodstream to the acid secreting cell. PPIs become active only when they pass into the acid secreting portion of the acid secreting cell, where the pH drops to about 1.
The Marci-kids website has a great dosing calculator on their dosing chart
Sunday, December 14, 2008
- Snacks all day long, as opposed to taking a larger volume at once (he’s learned that if he eats a lot it hurts)
- He is VERY gassy and Is very difficult to burp which has even gotten harder in the last few weeks (he’s now 4 months, which is when reflux can get worse)
- Is crying a lot, especially when needing to burp (which is often as it’s so hard to get him to burp and he snacks)
- Cries after burp for about 20-40 seconds then quiets down I think he’s learned that burping hurts him (refluxing)
- Is not stretching out how long he sleeps at night (as he’s not eating large quantities at a time) and he’s hungry
- he arches and gets very stiff while eating, which is when he’s really upset
- At night he can go 1-2 hours straight where he doesn’t go back to sleep as he’s fussing/upset/needs to burp, wont' eat, wants to eat, (and I’m exhausted)
- He spits up a lot
I think with what's going on with Quinn and dealing with Kaitlyn - I'm not able to get much done in my life. I finally just sent out Quinn thank you cards, and now need to tackle Kaitlyn's thank-you cards from her birthday party (from October) - Christmas Cards???? I always send them out...I want too, we'll see if I get to it. My house is a wreck. I never have time to eat or even drink a glass of water.
When the kids are finally asleep (around 9ish - I seem to have 2 hours or so of peace and quiet, and maybe finally eat something, before I pump and deal with all the night-time readiness before Quinn eats again at midnight (he has a major internal clock and seems to wake up to the minute of 3 hours). its hard to do any of the things that I really need to do at that time, I'm just so exhausted, mentally and phsyciall that all I want to do is veg in front of the tv and watch my tivo'd programs.
Can I tell you how tired I am of breast pumping? Ugggh. I did it for 8 months last time around. I'm going on 5 months now and have about had it. Before I stop this time though I have to do a trial of formula with Quinn to see if he can tolerate it. I don't want to have happen what happened last time, knowing that I had a freezer full of milk and not worrying. I didn't know that she wouldn't' be able to tolerate formula at all and I had to get donated breast milk after my extensive freezer stash ran out.
(It's 10pm now, I'm pumping and blogging, trying to go to sleep an hour earlier due to the K's new schedule for tomorrow):
Kaitlyn's first day on the short bus is tomorrow. I'm sad. We delayed a week due to her being sick.
Last week we went to check it out, and I really am having some major anxiety over this. Am I making the right decision? I so love her school that she's in. The kids in her new school have some very clear disability. Will she be able to get role models? hard to know as she now doesn't interact with the kids in her school anywyas and the teachers just let her be by herself (a star student really but not social at all).
It's going to be EARLY and very tough in the mornings. Normally Kaitlyn wakes up at 8:30ish and now the bus will be picking her up at 8:30! Sheesh. With needing an hour before we feed her after giving her periactin, my having to pump for 35+ minutes in the morning and dealing with a fussy/refluxy baby. I'm not looking forward to my alarm going off. (I'm still up every 2-3 hours at night with Quinn too!)
Oh, and a side-note from this weekend, Brian's fire house had a Christmas celebration for the kids of the fireman, We went to SF and got to see Santa arrive on a giant San Francisco Fire Truck. Kaitlyn loved it!
Monday, December 08, 2008
I wasn't exactly sure how Kaitlyn would handle it, it's a lot of overwhelming stimulation, but she did really, really well. Of course she didn't nap and it was a very long day, but all in all, I'm so glad we went. She wasn't all that excited over the characters (she was more interested in mickey's nose for example and Tinkerbell's tights then the character themselves) but I had so much fun watching her!
Eating Pumpin pie on Thanksgiving with Grandma Corinne
RVMC Christmas party (sadly, when Kaitlyn smiles for the camera, it looks more like a grimmace!)
Quinn's getting big!
Thursday, December 04, 2008
Kaitlyn is Sick AGAIN. This is the 2nd time in a month. They always go into her lungs and she gets a horrible cough. Of course I seem to have caught it again too. sigh....Poor thing, she has had horrible poops since she was last on antibiotics and has pooped 5 times every day. Her little bottom is raw and red, oh her tears break my heart!
This was to be her last week at school and she can't even go! I'm so sad, I wanted there to be some completion for her as to her last day, now she won't even get to say good-bye to the other kids/teachers. Makes me sad!
This is Kaitlyn's first winter without getting Synagis (palivizumab ), which is not a vaccination but a prophylaxis which can lessen the severity of RSV.
Synagis is incredibly expensive. Depending upon the weight of the baby, it's anywhere from $1,000 - over $3,000 a month! Yes a month!
Although I can’t believe it, our insurance has approved Synagis for Quinn! Yes he is a preemie and he has mild BPD (bronchopulmonary dysplasia) due to his lung issues while he was in the NICU. I’m actually really relieved that he’s going to get Synagis, as even healthy babies can get RSV and it can be deadly. It’s a horrible virus. Babies with preschool age children at home are more at risk. For those readers who weren’t aware of RSV, be careful!. Wash your hands as much as possible. RSV season is upon us again. (more on RSV below).
Quinn got his first shot last month and is going in for his 2nd shot tomorrow. The bummer is that I have to subject him to a monthly shot. Poor little guy. As he was crying hysterically in my arms all I could think of was all that Kaitlyn had been through and I wanted to tell him, “hey little man, this is nothing compared to what your sister’s been through.” But I can’t tell him that and I can’t treat him that way in the future either. I'll have to remember that.
Here are some RSV facts from the CDC website on RSV:
-Almost all children will be infected with RSV by their second birthday.
-RSV causes respiratory illness in infants and young children, and is the most important cause of bronchiolitis.
-When infants and children are exposed to RSV for the first time, 25% to 40% of them have signs or symptoms of bronchiolitis or pneumonia, and 0.5% to 2% will require hospitalization. Most children hospitalized for RSV infection are under 6 months of age.
-Infants and children infected with RSV usually show symptoms within 4 to 6 days of infection.
-Most will recover in 1 to 2 weeks. However, even after recovery, infants and children can continue to spread the virus for 1 to 3 weeks.
-In the U.S., RSV infections generally occur during fall, winter, and early spring.
Tuesday, December 02, 2008
I've been putting off writing this post now for over a month.
Maybe it's because putting it off delays the inevitable. But I guess I can't hide the truth any more.
Kaitlyn will be riding the short bus to school soon. Now I don't mean this as derogatory or anything. It's funny, our community school district has these smaller busses that take kids to and from special needs school and it wasn't until recently that I actually realized that these were the "short bus" that are so crudely spoken of by others when "jesting" about special needs children.
My daughter is a special needs child.
As she gets older and I compare her to other 3 years olds it's been slowly more and more obvious to me how delayed she is.
Let me back up a bit.
A number of weeks ago I asked the teacher for one of Kaitlyn's new Pragmatic Speech programs if she had some time as I'd like to talk to her now that Kaitlyn had been in her class for a month. She actually said to me that she'd been wanting to meet with me also.
Briefly, she indicated that there was a lot more going on with Kaitlyn than was orignally diagnosed by the district. She tested so well in a quiet one-on-one environemnt, but after a month of watching her, the teacher noted many delays in many areas.
- Gross Motor delays
- Fine Motor delays
- Flirting from object to object/inability to be still
- Not looking at eyes
- Gets super wound up if the envromnent is hectic (this is probably the HARDEST of all the issues to deal with)
- Prefers adults to her peers/doesn't interact with other children
- Shutter-steps her feet
- Repeating words over and over even though she has ability to speak sentences
- Hyper focusing on objects for long periods of time
- High pain tolerance
- Seeks out stimulation from objects (ie rolling on floor, couches)/ flops
The teacher said "I know Kaitlyn is really bright and excels in a lot of areas, but her delays do not allow her to show how smart she is".
Strangely, I felt some happiness as I felt validated finally that my "gut feelings" that I've been writing about weren't off. But I also felt really sad that I wasn't just being a "worry-wort" parent.
After I left, my mood totally tanked. No more happiness. Here are some of my feeling-sorry-for-myself rantings, but once again, I felt like my daughter was never going to be able to escape the horrible affects from her extreme prematurity. From my having an amnio. Yes, there's that fact. Now, don't get me wrong, I don't carry this horrible guilt with me. But I look at that event as "THE EVENT". My daughters are forever paying the price of that event.
I shouldn't be complaining. She is so much better off than other micro preemies I know. She's so much better off than so many of my new (new since my life changed forever) friend's disabled children.
But, damn it, I feel sorry for her and I feel sorry for myself. This sucks.
The teacher felt that Kaitlyn would do much better in a developmental preschool 5 days a week and that she should no longer be in main-stream preschool. I asked if she couldn't just go to her regular school 1 day a week. The teacher really indicated that the best way for Kaitlyn to improve would be consistency, 5 days a week with the same children, same teachers, who were really focused on her delays.
I know that the 2 day a week 1.5 hour speach programatic proram that she's in now is really good for her. My instict told me that this teacher was right on. She told met hat she's known in the district for doing a really good job of assessing children to help them get the care they need.
Yes, I'm happy that these issues are going to be addressed now. I feel very fortunate that I"m we are in an excellent school district with goals of helping our children enter main stream school at some point. This wasmy goal all along - to get her the help now as she's still young. But I'm still sad.
I was so sad to tell my preschool. This morning when I dropped her off I felt sad again. I really like my community preschool. I've bonded with a lot of moms there. (one has a special needs son who I've become really close with). Now my daughter will be riding the short bus.
Monday, November 24, 2008
I can't tell you how this profoundly affected me.
People tell me how strong I am. It seems as if I've "moved on" I haven't I read somewhere that a mom who looses a child never moves on. Life gets easier, but the loss is always there. The what ifs and thinking about all that will never be.
When this little boy died on the show, I absolutely lost it. I was home alone and I broke out in a huge gasping sob/cry. Tears sprang to my eyes. I sat there sort of shell-shocked.
It always amazes me how close this emotion is to the surface. It felt as if my heart was breaking watching this tv character's child die, but it was personal. I was brought right back to the moment of holding my daughter as she passed away. And the grief that I feel and how much I miss her.
I'm not sure who wrote this, but it was very fitting:
1. I wish my baby hadn't died. I wish I had him back.
2. I wish you wouldn't be afraid to speak my baby's name. My baby lived and was very important to me. I need to hear that he was important to you also.
3. If I cry and get emotional when you talk about my baby, I wish you knew it isn't because
you have hurt me. My baby's death is the cause of my tears. You have talked about my baby, and you have allowed me to share my grief. I thank you for both.
4. Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.
5. I need diversions, so I do want to hear about you; but I also want you to hear about me.
I might be sad and I might cry, but I wish you would let me talk about my baby, my favorite topic of the day.
6. I know you think of and pray for me often. I also know that my baby's death pains you too. I wish you would let me know those things through a phone call, a card or note, or a real big hug.
7. I wish you wouldn't expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my baby until the day I die.
8. I am working very hard on my recovery, but I wish you could understand that I will never fully recover. I will always miss my baby, and I will always grieve that he is dead.
9. I wish you wouldn't expect me "not to think about it" or to "be happy." Neither will happen for a very long time, so don't frustrate yourself.
10. I don't want to have a "pity party," but I do wish you would let me grieve. I must hurt before I can heal.
11. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I am feeling miserable. Please be as patient with me as I am with you.
12. When I say, "I'm doing okay, " I wish you could understand that I don't "feel" okay and
that I struggle daily.
13. I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, frustration, hopelessness, and overwhelming sadness are all to be expected. So, please excuse me when I'm quiet and withdrawn or irritable and cranky.
14. Your advise to "take one day at a time" is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.
15. Please excuse me if I seem rude, certainly it is not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.
16. I wish you understood that grief changes people. When my baby died, a big part of me died with him. I am not the same person I was before my baby died, and will never be that person again.
17. I wish very much that you could understand-understand my loss and my grief, my silence and my tears, my void and my pain. BUT, I pray that you will never understand.
Thursday, November 20, 2008
I was just able to try this drink, Glow Mamma, for pre and post natal women, and I'm telling you it's YUMMY! I'd drink it all the time, it's so much more refreshing than so many drinks out there.
I seem to want something more than water, but I don't really like sweetened drinks and I haven't had a regular "soda" for 20 years or so.
It's refreshing and not too sweet!
It was started by a local San Francisco Bay Area mommy. You can find locations to buy it on their website, you can order it from Amazon or directly from their website. They've told me that soon Mollie Stones Grocery store (in Greenbrae and Sausalito for those local moms) is going to carry it.
Get some today!
Wednesday, November 19, 2008
Kaitlyn ended up giving her cold to both Brian and I, but I got it bad, still have it a week later. My voice is shot and I can hardly sleep with all the pghlem. Kaitlyn got so bad I took her to the doctor last Friday and she had an ear infection in one ear as well as a sinus infection. SO back on anti-biotics she went.
She was a bit of a night-mare all weekend, whiny, not my sweet Kaitlyn, I kept forgetting that she was probably just not feeling well, so it made things sort of tough. By monday, however, she started feeling a lot better, but then the runs started. This antibiotic she's on makes her poo green and explosive diarrhea (poor baby).
Today, while Kaitlyn was at the park with our nanny, she started complaining that her tubey-tube hurt. She had said it to me too the day before. I think the anti-biotcs are messing with her entire intestinal/stomach area. She also suddenly broke out in a horrible yeast/diaper rash. It came quickly, even on her thighs, poor baby.
I made the decision on the spot to take out her tube. It was time to replace it again. It just didn't make sense to me to replace it, knowing that we weren't using it any more and that I had no intention of using it again.
The docs weren't on board with it coming out, as they are concerned about her not gaining weight. Well, I've done the whole gtube thing on my own, tackling everything from what we feed Kaitlyn to finding her therapy. Why should this be any different? I listened to my gut and it said no problem. Get rid of the tube! Maybe that 5cc balloon in her tummy (that holds the mic-key button in place) is making the pghlem and taking up valuable space anyway.
My feeling is this: she eats quite well (when she wants to and is hungry), she isn't vomiting any longer, there is nothing physically wrong with her, so why do we need a feeding tube?
So out it came! She was crying (due to the diaper rash, the tube hurting her and needing a nap). I had imagined in my head what the momentous day/celebration would be and this really wasn't the way I had planned.
But the tube is out! It seems so anti-climatic! It wasn't that longer that I was "complaining" that we'd never get Kaitlyn to eat or stop vomiting. I had laughingly imagined her going to college with her feeding tube, that's how impossible of a feat it seemed to me.
I wanted this to be a big deal! I wanted fanfare and hoopla - mainly for all the crap I had to deal with for the past 3 years. My pain and suffering. Kaitlyn insufferable vomiting. All the crap! so much crap - it's hard to remember it in some ways, (which is CRAZY). Instead it was tears from Kaitlyn, I pulled the water out of the balloon with a syringe, sopped up a bit of food around the site, slapped on some gauze, tape and that was that!
Now we have to wait a month to see if it will close on it's own. I've been told that about 50% of them close on their own, and 50% need surgery to close. Hopefully we'll be the former.
Let this be hope for all my fellow micro preemie moms who have kids with gtubes. All my other friends kids with feeding tubes. it can happen! Even when nothing is improving and you are stuck in the same old grind of pushing in food and slopping up vomit. You CAN get your kids to eat!
Don't be complacent if the docs don't know what to do. Research! Ask a lot of questions! Be patient. Work hard. And eventually you too can be rid of tubey-tube!
Tuesday, November 11, 2008
Kaitlyn came down with a runny nose on monday and now Quinn has it too. Today however, Kaitlyn is not doing well. Always something to remind me that I do have a "former" micro preemie with BPD (lung disease). Kaitlyn never cries. Really, hardly ever. She falls all the time, skins her knees, but barely breaks a whimper.
BUT, today, she is really crying, is having trouble breathing and we are back to doing breathing treatments. For a bit after her nap when all the crude settled in her chest/head, I thought we might end up in the PICU (Side-note: next to her friend Morgie who is there currently for her 7th time or so and her mom (lisa had major surgery yesterday). Thankfully after the albuterol she is a bit better so we are staying home for now.
It's ironic that I was just telling Brian the other day how lucky we were that Kaitlyn's only hospital visits since leaving the NICU were 1) to have her gtube inserted and 2) when she fell off the cliff on her 2nd birthday and we went to the ER.
Pool little Quinn kept me up last night as his sniffles started and he didn't sleep much (nor did I!)
Monday, November 10, 2008
I have a baby bjorn Active that I'm starting to not really like (as Quinn is now 11 pounds, more on that soon), I've heard the Ergo is the way to go....
anyone have experience with this carrier that is a lot like the Ergo?
Lillebaby EveryWear Carrier
To help compare, I looked back at my blog and saw that Kaitlyn was close to 10 pounds when she was over 7 months old. She has been hovering right around 26 pounds now since May. She's been any where from 26.6 to 25.8 since May. I'm tyring to explain to her that if she eats more she'll grow taller and fit into her clothes. I'm trying to now get really excited if the scale goes up. Am I causing her long-term weight issues? I so worry about that. But I have to get her to understand that eating is going to help her.
Friday, November 07, 2008
On Wednesday I had my first “play date”. This is strange for me to say after all, my eldest child is 3 years old. I never really understood what the big deal was over moms and play dates, here's why:
- I work during the week, play dates tend to be during the day on week-days for those non-working moms.
-Then there was that old problem of Kaitlyn never being allowed to be around other children for the first full year of her life, as well as for the first 2 winters. I went one time to a moms group, and a mom brought her sick toddler (this wasn’t a group for babies, it was all ages), and lo-and-behold Kaitlyn got her first cold a few days afterwards (she was about 10 months old (6 or so months adjusted). I was angry that a mom would bring her sick child around other children. And of course for me, it was even more of an issue as Kaitlyn was at high risk for lung issues. I had to go through round the clock breathing treatments as well as Kaitlyn needed oral steroids.
So, with Kaitlyn being at risk for RSV and with her feeding tube and vomiting issues I never left the house with her.
-All that aside, it was too hard for me to be around other children and moms that seem to have it so easy from my standpoint. I know, I’m a horrible person for thinking that but it was true. None of these moms could understand what I was going through, it was so hard. I felt very isolated.
-I also never really “got” the fact that babies aren’t really playing with each other when they are so young, they basically just sit around - so why in the world would you have a “play date”? It seemed sort of silly to me.
Well, fast forward to a few days ago when I went on my first play date. This was on official “play date” organized by one of the moms groups I belong to, about 4 or 5 moms with babies the close to the same age as Quinn. I know one of the moms personally (she was a real estate client of mine that became a friend) and she told me that another group member had recently lost a twin. I really wanted to meet the other mom (I know how hard it was to deal with this loss and wanted to be there to support her).
The morning was tough as always, pumping, feeding Quinn, giving Kaitlyn her medicine, taking Kaitlyn to school in the morning, etc. you know the drill. My nanny came and she was at home alone for a bit before she went to pick up Kaitlyn from school (that’s part of my dilemma, how can I do play dates when I have a full-time nanny, as I DO work full-time?)
Anyways, to make a long-story short. It was fun! I think I get it now. All of our babies had just started smiling and starting to have head control. They noticed each other. We swapped breast feeding/breast pumping stories. We talked about our lack of sleep. We commented how cute each others babies were. We bonded, as we really were going through the same things at the same time. I could relate. Finally, I could relate with being just a plain old mom.
I was able to talk to the mom who recently lost a twin after going through many prior heart-breaking attempts at trying to have children. My heart just broke for her. I understood her pain. Her twins were born at 34 weeks (wow, like Quinn) and one of them got Necrotizing enterocolitis (NEC) and passed away from an infection. Made my soul gasp. Made me realize that even 34 weeks (like Quinn) is early and anything could have happened. I feel so lucky this time around. We spent some time talking and I think she enjoyed having a mom to talk to who got all the emotions that are passing through her. She said she didn’t realize how risky carrying twins is. I too totally understand that.
AND for me, I said to myself, “ok, this is what motherhood should be like.” Easily pack up the infant, with a bottle of milk and a burp cloth and go visit with other moms. No vomit (of course some spit-up but geesh, it’s just spit-up!) I’d love to do it again. I have to try to figure out my schedule to allow some fun “mom and baby time.” I never got to experience this before.
I’m a mom of a regular baby, a little bit early, but basically a regular baby. And you know what?? It feels great!
Tuesday, November 04, 2008
Last night (after having such great success earlier) I tried again. In the middle of the night I hoped for that "roll over and put him to the breast" ease of the night feeds everyone talks about. I tried a number of times, but he started really crying and clearly didn't want anything to do with the boob. so I grabbed the bottle of breast milk I had sitting for him and we both went back to sleep.
Then the next day I tried again to breast feed. This time he became so hysterical at the sight of my boob, yes, he clearly could see it when I whipped it out and worked himself into a frenzy. I calmed him down with pacy (our name for his pacifier), then tried again (3 times), but by the 3rd time I've never hard him scream so loud and I once again determined that the breast feeding just isn't for me.
Here's the picture of my freezer when my daughter came home from the NICU 3 years ago:
I estimated there was probably close to 2,500 ounces of milk!
Here is my freezer picture tonight. Now keep in mind a few things in the picture below (Quinn is taking in milk every day, so that's not getting frozen, Katilyn hardly took anything when I took the above picture; I'm filling every container compeltely full (the bottles are 4 oz when full) and the bags are a min of 6 ounces (more like 7).(unlike Kaitlyn as I hadn't learned this space-saving tip yet) So I have a lot of milk stored up already for Mr Quinn. In both pictures you only see the front row, the bags/bottles are lined up 2 deep.
I've now been pumping for Quinn for 3.5 months. I'm WELL ahead of his needs milk wise. Why do I continue pumping?
1. I continue to hold out the hope that one of these days breast feeding will just go great and we both will finally "get it." Yesterday evening was one of those moments that I had dreamt about. He actually got it! It's never been an issue of Quinn's latching on, he can do that seemingly ok, but he gets really, really pissed off about having to work on my breast that he often cries like a banshee and I just can't take it. A few nights ago though it was great! My let-down is easy for him, and after a few seconds he was happily gulping down milk directly from the source (the cow as my husband calls me after seeing me attached to the pump 24/7 practically). It was nice. Really nice. No drama, no screaming, just regular breast feeding like it's "supposed" to be.
I've still been waiting for the Euphoric breast feeding experience that everyone talks about. that's one of the main reasons I continue to pump. I'm still hoping!
2. Once I stop pumping, this will be it for me. I'm 42 years old. I don't plan on having any more children (my 2 pregnancies and my 3 were all IVF babies anyways). By being a lactating women it seems to extend my feelings of the fact that I'm younger than my age tells me I am. I say to myself: "hey, I'm a lactating, new mom" I can pretend I'm in my 20's! it means I'm no longer pregnant.
3. It's done wonders for taking baby weight off. I started this pregnancy 10 pounds heavier than I started with the twins. I'm now at my pre-twin pregnancy weight. Last time I gained it all and then the 10 pounds after I stopped. (Which never made sense to me, as I lost too much weight last time - in 2 weeks I was at my pregnancy weight, in 4 weeks I was 10 pounds under that and way to skinny). Guess you just have to loose a child and become septic and almost die to loose the baby weight.
4. Sleep. I remember reading somewhere that lactating women produce a hormone (Oxytocin) that makes us be able to sleep very quickly . It's natures way of making up for the fact that we don't get much sleep with a newborn. At least we can fall asleep very quickly and sleep very soundly for short bursts of time. I LOVE this. I never am able to fall asleep very easily. I've had insomnia for as long as I can remember. This is a feel good hormone that I don't mind having also!
5. I'm a busy working mom. This at least makes me feel I'm doing more for my son. I have help to watch them about 4 days a week. I feel guilty. I'm "supposed" to be a super mom that can spend 24/7 attachment parenting my newborn. That's not happening. There's no way. I guess that at least by pumping and producing milk for him I'm doing all I can do. (but sometimes I have to say that I feel this in a negative way, as I have to pump instead of holding him, which defeats the purpose).
Now, as far as pumping goes:
I hate pumping. Don't get me wrong. The first 2 moths were torture. 2 months. I suffer horrible horrible nipple issues. I think my sensitive skin just doesn't do well with the suction pull of a pump. In order to get my supply up I did as I was told, pumped every 3 hours round the clock (with maybe one longer 4 hour break at night). this was a lot of pumping. In order to empty my breasts, it requires pumping for at least 25 minutes a session. This means that my poor little nipples were being suctioned about 4 hours a day. uggh.
I think what helped them (my nipples) improve was letting up on the number of pumps. Yes, I worried about my supply diminishing, but it seems to be fine. Pumping less often. Yeah! I now pump about 4 or 5 times a day. I'm going 8 hours at night (not that Quinn is, but I'm not getting up to pump).
I pump and drive a lot. My crazy life dictates that I do. I have a hands-free bra (a must for any serious pumper) and hook myself up. I have 2 pumps. One I leave in the car. I use a Medela Pump-in-Style pump. I have the Advanced model and the older original one. I like the Advanced one better. I always hear that you have to have a hospital grade pump in order to get any supply. I can in fact tell you that's not the case (at least for me!)
Oh, and I have to add that taking lecithin is a life-saver for me this time around. It's really helped the clogged ducts that I get.
Anyways, I just had to share my recent pumping success!
And some pictures for you to enjoy: I think Quinn is becoming the cutest baby ever! He's so happy. His smile continues to bring joy to me, this is all very new to me!
Big sister doing her "hee" smile, When you tell her to smile for the camera, she says "hee" which isn't the most photogenic smile, but it's cute.
Sunday, November 02, 2008
She again saw: Deborah Oral-Bixler
As a reminder, Kaitlyn had level 3 ROP in the NICU and had laser surgery to stop her retinas from detaching. (Stevie Wonder is blind due to ROP)
This appointment was long-in-coming.
Below I'll recap of a conversation I had months ago with our insurance company:
But before I get to that I had to write about my experience of being on a college campus, again.
I of course double duty tasked and pumped on the way to UC Berkely. The old "Pump and drive". I'm getting over the fear of other drivers looking over at me, Who cares. I don't have the time to pump any other place, so I often pump and drive.
Upon arrival at the campus - Wow, did I feel old, really old. I was late (what a surprise) it was raining and I couldn't find the correct parking lot (as the lot that for the clinic that I used last time is under construction after the long crazy protesting tree-sitters finally were removed. I parked way too far away and found myself trying to negotiate a stroller on a college campus in the rain feeling really, really lost and out of place and running late.
It was a blast of reality of how much my life has changed since I was a college student at UCSB (UC Santa Barbara). Wow, did I feel old. I had to ask a number of co-eds how to find the building I was supposed to go to. I certainly was the only one pushing a toddler in a stroller. I wondered what students thought as they saw me, a mom pushing a stroller. One girl helped me to carry the stoller down some steps that didn'g have a ramp. I ended up right in the university center square. I didn't feel "old" before going on campus, but here I was pushing a stroller around a college campus feeling ancient. I graduated from college when I was 22, and that was 20 (TWENTY) years ago! Oh My God. 20 years.
Anyways, sorry for that little lament.
Here's the conversation I had with my insurance company/case manager.
Me: "Kaitlyn needs to have another eye exam, as she holds paper about an inch from her face in order to see close-up, she also looks over the top of her glasses."
Our current Opthomologist has said everything fine. But to me, everything isn't fine, why is she looking so close at things. We would like to go back to the UC Berkeley center where she went (and you paid for) over a year ago."
Them: "well, looking at Kaitlyn's history, it looks like her Opthomologist (Dr G) didn't' dilate her eyes in order to do the exam"
Me: "they've been dilated in the past, but I don't really think that's the issue, I would like to get a 2nd opinion"
Them: "the last time she went to UC Berkeley, it was "just" an optician appointment and an opthomologist appt would be better for a 2nd opinion"
Me: "no, we need to go to UC Berkeley, this isn't' a regular optician appt, this appointment is almost 2 hours and includes attaching electrode stickies to her head to see what she is seeing among a lot of other things to check a child's vision"
Them: "no that's out of network, she'll be better off at an opthomologist anyways, as they are more advanced than an optician"
Me" Again, the appt at UC Berkeley is a very specialized Low Vision Assessment, supposedly one of only a few in the country for children, we need to go there."
Well, to make a long story short, they never approved it (even though approved the first visit over a year ago). I gave up on trying to explain why this place was different then what everyone else did. BUT our wonderful local school district has a donor that will pay for children to go to the vision assessment at UC Berkeley, and we just went on Thursday.
1. That her left eye has a small amount of peripheral vision loss (common from ROP surgery)
2. That she has limited depth of field (which might account for her stumbling when objects are similar in color, but not for tripping over objects that are very clear).
3. That her vision is about 20/50 at this point, and the reason she looks so closely at items is that her vision is good close up, if she's holding something just a foot in front of her (esp without her glasses) it's very blurry. (-4.5). They didn't see any cause for alarm for it. As she gets older, her vision may still get worse and she may likely need to be at the front of the class or have large print, but at this point, they are happy with what they say (resolved ROP).
After children have ROP surgery, it can still happen that their retinas detach, but the surgery that is being done now is so much better than ROP a number of years ago where they froze the retinas which caused serious long-term scaring. They can see the scars on Kaitlyn's retinas, but they aren't concerned at this point.
All-in-all, well worth the visit and the wait.
Kaitlyn's eyes are really very good for having serious ROP and we are very thankful. At this point she won't qualify for vi son services through our school district (a good thing as far as I'm concerned!)
Did I mention in the past that I found THE PLACE to get eye glasses online? (adults and children)
Wow, what prices! http://zennioptical.com
Saturday, November 01, 2008
Quinn in his ghost onsie (from Grandma Corinne)