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)