I have much to catch up on here…
In a few hours though C6 has his one year (ONE YEAR!!!!!) cardiac catheter test to see if he will need to remain on his beta blockers for the SVT. We will be heading to the hospital bright and early in just a few hours. Please keep my littlest man in your thoughts and prayers today…
11am- ETA- he is in recovery now. It went well and he is snoozing away
Just posted this pic on Instagram… And I’m having palpitations. They. Are. Almost. One.
How did we get here?
My rainbows…..
This past December we took a family vacay to the Happiest Place on Earth! With a group of 16 people and tons of little people it was certainly a trip to remember! Because they have older siblings the twins have never been on a true ‘quarrantine’, though we really do not get out much. So this trip was huge.. in every way. I had some hesitations about taking the twins to Disney World (for obvious health reasons) but after talking to their pediatrician we decided to go ahead with our plans (and my neurotic plan for sanitation).
I think the most challenging aspect of this trip was pumping. Yup. Pumping. My schedule is very rigid- every 2 hours preferably, sometimes every three- with one 5 hour stretch per night. My sessions are timed from the start of the last session, so if a session takes 45 min to an hour to complete I start again with only about an hour break in between. That’s not ideal in a place like Disney World. In an effort to to stay close to my family I started off searching for outlets around the park because I assumed that they would be easy to come by- they were not. Our first day was at Animal Kingdom and I ended up using their Mother/Baby area throughout the day. Disney is great about having good facilities for nursing mothers and mothers of small children. Each of the 4 parks is equipped with one Baby station which is basically a center where you can nurse, pump, change baby, prepare and feed food, or have a bit of downtime away from the crowds- generally they are for anything baby related. The upside of these facilities to a lac mamma is is access to nursing/pumping areas with sinks and microwaves for sterilizing- Animal Kingdom and Hollywood Studios have private rooms while the Magic Kingdom and Epcot have communal lactation areas that are for women only. The downside to these facilities is that there is one per park. And they are usually at the front of the park. Pity for me when I was at the back of the park and it was time to pump. This meant lugging my bulky Medela Symphony (in a padded backpack) from one end of the park to another- often while running because my time with everyone else was being limited to 1-2 hours at a clip between sessions. Super fun.
Because we were in such a germy place I was adamant about sterilizing between sessions and I needed the sink and microwave ( I no longer do this at home- I only sterilize once a day). Since I was using my Symphony (vs. a battery operated pump) I needed the easy access to outlets as well. It wasn’t until the 3rd or 4th day that I started to re-think the outlet situation. People use motorized vehicles all over these parks- and they plug-in to charge. So there had to be outlets throughout the parks-somewhere. When I inquired about this I was given a map of charging stations for the electric vehicles- why didn’t I think of this before!? It turns out that about half of the charging outlets worked for me because half of them are in the designated smoking areas which were a definite no for me. I did find several that were in safe areas (no smoking) and using them meant less time away from the fam. I just plugged in, pumped with a nursing cover and rinsed parts after with bottled water. I used Medela quick-clean wipes and sterilized at my next visit to the baby station.
Overall, once I got into a groove it wasn’t too awful- but I definitely lost a lot of this vacation on pumping- but to me it was 100% worth it to keep up my supply for the twins. My family was definitely annoyed at various times through the trip, but that’s par for the course with my pumping in general and I don’t pay it any mind. Maintaining my ability to provide breast milk for the twins is my number one priority in this department.
If you ever find yourself pumping in Disney here are my tips!
-If you are able, bring a battery operated pump as you will be ahead of the game and can pump anywhere! (I was afraid to use anything other than the Symphony because of it’s suction strength)
-Use the baby centers- they are very helpful for anything baby/toddler- they have (for sale) diapers, wipes, food, medicine and first aid essentials.
-Go with family- if you can, have other people there to help whenever possible so that your children can continue their activities while you are pumping.
-If you are using a plug in pump get a map of the electric vehicle charging areas. There is a GREAT one in the Magic Kingdom near the entrance of the Pirates of the Caribbean- I used that spot a lot!
-Bring Medela quick clean wipes and quick clean sterilizer bags. Having these meant that I only brought one set of flanges/adaptors to the parks.
- While I don’t use them at home, we used the Playtex drop-ins nurser system in Disney. I pumped straight into the drop-in liners (with plastic shell and breast pump connector) and never had to wash bottles. I brought extra nipples and washed/sterilized them as needed.
-Ask for what you need. I pumped in a few restaurants (with a nursing cover) when I asked if we could sit near an outlet. Not all restaurants have them, but those that did were happy to accommodate. I asked for help at one resort restaurant (Jiko- in Animal Kingdom Lodge) and they allowed me to go behind the main hotel desk into their private computer room.
-Try to maintain the same schedule you have at home to maintain your supply!
And now for the best part- the pictures! I added the borders and siggy’s for fun!
Can you tell why I posted this one? 
My nephew!
THE best Santa in the world!
Flirts
See no evil, speak no evil, hear no evil!
The new Fantasyland was amazing!
Hangin’ with the fairies!
My best friend’s daddy passed away recently. Today she and her siblings are remembering him on his first birthday as a voyager. While I never got the chance to meet him, I know how much my bestie’s heart aches for her dad and I sending her all the love and light in the world. I love you Meesh- Happy Birthday to your sweet daddy… xoxoxoxo
Yesterday was my second phlebotomy of the year. After my IV was started I was sitting with J and asked a question I had been meaning to ask since January- Where was Bill?
From the time I was first diagnosed I often found myself in the office on the same day as Bill and his partner Ken. And when I say Bill and his partner Ken I should really say BillandhispartnerKen because these two were inseparable. Everyone in the office smiled at the mention of these two. Bill was fighting his second bout with cancer (I never asked specifically what type) and this couple drove about an hour and a half each way for his weekly appointments. He and Ken were a very outgoing couple and from the moment I met them I was drawn to their combined humor and wit. We spent our time in the waiting room together on many occasions and Bill and I often sat next each other as he was pumped with drugs and I was drained of blood. We talked about life, love and all that surrounds it- and we mixed in some Harry Potter for good measure. I loved watching these two men interact with each other through such a difficult time. I can honestly say that I never saw either one without a smile on their face or a willingness to talk about life since out last appointments.
During my pregnancy with the twins Bill fell and broke his hip. He went through rehab and by the last time I saw him he was up and walking with assistance- and that smile was still beaming. Ken joked that he finally found a good way to get out of cooking. Yesterday I noticed that I had not seen him since the new year and I asked after him. I knew immediately when J’s eyes connected with mine. He passed away in December from a long hard fight. Ken was right by his side through it all and the two women closest to him from the office also rushed over to the hospital when they got the call. Don’t cry, she said as she shook her head. He went so peacefully. It was time.
Of course I cried. But I was relieved to hear of the peace surrounding his death. He didn’t fight it like some patients do, she said. I asked J about how it must be hard to work in this office- to see so much death. I don’t cry, she said. I can’t anymore. How sad is that? We remarked at how we really have no control over this kind of thing- no matter how much we wish we did. People die. Children die. Babies die. In many ways we are lucky just to have the memories- that at least is within our control.
Today I am thinking of Ken and hoping he is finding some light in the days without his other half. I think I will write him a letter. I’m really honored to have known these two men- even if it was only for a moment. They made me laugh during a crazy time. They shared a few brief hours of their lives with me and made their mark. They showed me what trust, commitment and 27 years of love looked like. They reminded me of the saying that while life isn’t always wrapped in a bow, it is still a gift. I’m really going to miss our little talks. Thanks for the smiles Bill- there was an empty chair next to me yesterday.. how fitting.
This for my daughter- my princess.. and my princes. Amazing…
I am brave sometimes.
I am scared sometimes.
Sometimes, I am brave even when I’m scared.
I believe in loyalty and trust. I believe loyalty is built on trust.
I try to be kind, I try to be generous.
I am kind even when others are not so generous.
I am a Princess.
I think standing up for myself is important.
I think standing up for others is more important.
But standing with others is most important.
I am a Princess.
I believe compassion makes me strong,
Kindness is power,
And family is the tightest bond of all.
I have heard I am beautiful. I know I am strong.
I am a Princess. Long may I reign.
-From The Disney Channel
This is awesome and I just had to post it:
I had to get back into the reality of being a PV patient this month. Suckage. The twins did a great job of keeping my blood levels stable during their pregnancy and amazingly I made it this far before needing phlebotomy again. Unfortunately my first time back in the saddle did not go well. I neglected to realize that pumping as much milk as I am leaves me with absolutely no fluid to spare. Needless to say I could not figure out why on earth I blacked out after treatment (that never happens). It took me a few hours to figure it out… lesson learned. At least we put back two bags of saline afterwards…
The Cullen’s would have a field day with this!
Anyhow- I have a lot of updating to do which I’ll get to later this week. The littles are doing well, though C6 has an appointment with a pediatric endocrinologist this week.. more on that after our appointment.
C5 has TEETH! I don’t know why but this took me by surprise- I guess that I just continue to think of him as my little 1lb 14oz ball of fluff- but he is growing and now he has TEETH! And his big sister LOST her first tooth last week! Coincidence? We think not!
TEETH!
We are having great weather in our little corner of the world so we went to the beach last week:
More later this week.. and PS I just joined The Instagram. Love it! My favorite part has been connecting with all of my sweet bloggy friends and sharing pictures- come find me over there!
Many moons ago I remember reading a post by Jeanette about how hard it was to be bottle feeding a breastfed baby. I can’t find the exact post but it was something about her huddling down in a car as she bottle fed breastmilk to her son Ernest while hiding from the imagined stares of disapproval cast by the outside world. I thought to myself- Oh that poor woman. How it must suck to have to bottle feed your breastmilk when you long for your child to suckle skin to skin. How she must want to scream to passers-by- “It’s breastmilk! It is not formula! He will not latch- I have tried endlessly- but he cannot drink from my breast so I pump throughout the day to provide him with my milk!” I thought about this a great deal as I read through her journey- and stupidly through it all I held the assumption that reading about it was as close as I would ever come to it. All of my living children fed easily from the breast- even my 36 week C1- so surely I would never have a problem such as this that I could not overcome.
Cue the incessant laughter that irony drags with it through a gutter as it slithers upright and slaps me across the face. Did I really think I was exempt from the trials of another? Guess again.
Ernest could not feed at the breast due to complications of a severe tongue tie. (That sentence makes a very long story short) A lot of what I learned about this road has been from reading through Jeanette’s experiences with him. When I brought the twins home I struggled with C5′s very painful latch and ended up having his tongue tie clipped. While he did latch a million times better, he still preferred the flow of a bottle to the work he needed to exert at the breast. In short, 3 months living in hospital pretty much set the stage for what was to come.
While both of the twins dabbled in breastfeeding, neither of them has emptied a breast or even come close to it.They are almost 8 months old. In the beginning my routine was to attempt to breastfeed, then pump what remained (basically everything) and feed them by bottle. This was followed by cleaning my parts, sterilizing and starting the entire process all over again. I’m not going to lie here- it fucking blows. When you have experienced the ease of breastfeeding and are then faced with the tedious process of pumping you learn very quickly how much effort it takes to succeed. There was never any doubt in my mind that so long as I was able to produce milk, the twins would be fed exclusively breastmilk- I just didn’t realize how much of an uphill struggle it would be. S is mostly supportive but other members of my family are not. Why don’t you just use formula? Because. Because because because because because…. and a bit of a middle finger salute.
I tend to spend most of my time at home topless to give my skin a break. The front door to our home has a lot of glass- a clear shot straight through to the couch in the living room where I spend many of my hours attached to the rhythmic slur of the pump. The UPS driver has had more tit shots than a perv in a porn shop. Oh well. I finally invested in a simple paper shade for the door. Problem solved. Today I posted on my local LLL FB page about increasing milk supply. I still take fenugreek but I am starting to fall behind their increasing volume needs and am using my frozen milk stores for a few bottles a day. There is not a lot left in the freezer after my huge donation to T, and as their needs are increasing I am obviously no longer freezing (we use it all up each day). But- we are adding solids now so I HOPE to manage to maintain their needs on my own.
Four months later finds me on the very same pumping routine. I pump every 2-3 hours throughout the day and take one 5 hour stretch at night (though it’s really 4 hours timed from the start of the last session). Most sessions last 30-40 minutes but a few times a day I pump for over an hour. My nipples are red and raw but I refuse to give in. I don’t offer the breast much at all anymore. There is only so much rejection a mamma can take. It’s not their fault- it’s just the cards we were dealt- and so we make do with what we have. In many ways I realize how fortunate I am to have the technology to still feed them breastmilk. I don’t know how long pumps have existed, but the very tool that I once scowled at is now like an illegitimate 7th child. I need it, and so the cycle of dependency continues. I have traveled near and far with my pump. Next up will be our story of visiting the Happiest Place on Earth earlier this month and pumping in little dark corners outside Pirates of the Caribbean. Mind you- it wasn’t because I cared at all who saw what- it was because I needed a damn outlet.. but that’s another story entirely.
Nowadays they see a bottle and coo with delight. They see a breast and howl in protest. There have been moments though- and I will hold tight to those bright times when one or the other nursed ever so slightly skin to skin. Hell forget that- I’ll hold tight to the fact that they are ALIVE and growing because the reality could have been a whole lot different.
I took this picture only a few days after they were both home together.. it is the only one I have of them tandem feeding and I cherish it more than words could ever describe.
I am not the only woman to do this.. and I will not be the last. Thank goodness for the light of kinship- it has brought me through yet another moment in time.
