A CF Gripe

I will preface this blog entry by saying that overall Cysters have really good attitudes and are able to roll with the punches. If we didn't we would never be able to survive having a progressive life threatening disease. With that being said, CF STILL SUCKS!

There are 1,001 reasons that CF sucks, but I felt like giving a little gripe today about an aspect of CF that really irked me this morning. My husband had to be at work 30 minutes after I have to be at work. We both take about the same amount of time to shower, do our hair (mainly because I brush and air dry while he puts gel in his adorable curls), get dressed, eat etc. I still had to get up 2 hours before he did so I could sterilize my nebs (oops, forgot last night) and do my treatments. I would love to get the extra sleep time that is always spent nebbing and coughing. Blah!

Okay, your turn. I know there are endless reasons CF sucks, but today (or whenever you read this) feel free to write a little gripe and I promise I won't judge you or think you have a bad attitude because in my book ut is okay to complain once in a while...

Surprise!!!

My work threw me a baby shower today. Now, the shower itself was not a surprise, but it was beyond anything I expected. I have the most amazing staff, but there is something extra amazing about the special-ed staff. We often celebrate birthdays with some treats, a card, and chit chat. I didn't expect anything beyond an informal party that we so often have. My special ed staff went all out they had cake, food, and drinks galore. They also had flowers everywhere, table centerpieces, posters up and decorations. It totally transformed the room. The whole staff was invited and I couldn't believe the generosity of the staff. I got a gift card "from" the staff, but so many staff members gave me gifts they purchased themselves. People I don't even really come in contact with (kindergarten) gave me gifts!! I was still in shock when i got home and showed my husband the gifts.

In other news, May is rapidly approaching and I am terrified at what kind of month it will be! On average I have 4, yes you read that right 4, appointments a week!!! Although everything is going well and baby is doing well (40th % in growth which is great considering my baby will have small genes) my high risk OB still wants me to have a biweekly non stress test to make sure as the pregnancy progresses baby is still happy and healthy. I am all for it, but twice a week on top of my busy schedule seems overwhelming.

Not only do I have 4 appointments a week, but in the month of May I have 4 classes (breastfeeding, hospital tour, newborn care..) that I am taking through the hospital. I feel like I am starting a new (unpaid) part time job since 4-5 days a week I will have to be at a doctor appointment after work! I understand I have a midwife, high risk OB, CF doc, and NST that all need me to be present, but how the heck am I supposed to rest when everyday after work I have appointments to go to!? I have a feeling this schedule will make me leave work earlier than I planned. I haven't even started to think about how I will fit my afternoon treatments in...

Week 32

How Far Along: 32 weeks 2 days! Really starting to panic about the fact that we are so unprepared. We have so little for this baby and I feel like we are so behind. I am usually a planner and like to get things done early, but we want to wait till after our shower to see what we need.
How Big Is Baby: A squash even though a few weeks ago she was an acorn squash...I guess she is now an unnamed bigger variety of squash.
Total Weight Gain: As of last Thursday I have gained 18 pounds! Woohoo! I thought I was struggling with my weight, but I am right on track and the doc is very happy with my extra poundage.

Sleep: Sleeping fine. I still can't sleep in because I have a million things to do and my nesting is still in full gear. I guess my sleep in days are over for the next 18 years...

Movement: Constant rolls, nudges, wiggles, and still getting kicks. She also gets the hiccups at least once a day and sometimes more! She is so much fun!

What I Miss: Went to breakfast this morning and really wanted over easy eggs. I guess at the moment I miss runny eggs in general.
What I'm Looking Forward To: Feeling more prepared! My showers!
Milestones: baby not only sleeps, but experiences REM sleep. That is kinda cool!
Symptoms: Hmm still peeing a lot and my skin still breaking out.

Other: My best childhood friend is giving birth as we speak! She may have already had her little man as I figure she won't call me immediately after he makes his appearance. I am so excited for her to meet her sweet baby boy.

Baby Hates The Vest

I think my baby officially hates the Vest. It always wakes her up and she usually starts stretching wildly. She is currently kinda transverse. Her head is by my left hip and her feet are on my right side above my belly button, but not all the way to the ribs. She pushes her little legs out as far as she can (against my side) when I vest. I am not sure if she is squished and trying to make more room or what. This morning she was stretching so hard it was hurting. I placed my fingers against the pain and I could feel her little feet!!! I have felt her feet kick before or briefly push by, but these little feet were not moving. I tried to apply a little (as in a minuscule) amount of pressure to get her to move, but she would not budge. Seriously, the coolest feeling ever. At the same time I felt horrible because I sensed that she wasn't the happiest camper since it seemed as if she was trying to avoid the vibrations by shimmying down my torso and stretching out as far as she could in her cramped corridors.

31 Weeks..Time Needs To Slow Down!

How Far Along: 31 weeks 2 days! 9 weeks left although it could range between 7-11 weeks. Man, that seems to be too big of a range. My CF doc said my goal should be 38 weeks, but I think this little one may be on the late side since she is my first. We will see...
How Big Is Baby: A pineapple- sounds painful!
Total Weight Gain: I have been trying to force myself to eat which has been hard due to current circumstances. When I do eat I try to stuff myself to the brim (yuck) because my weight tapered off before all this stress. I haven't stepped on a scale because I don't need any extra worry at the moment and I am doing my very best to eat a lot and high calorie.

Sleep: Sleep has been so much harder this week, but I highly doubt it has anything to do with pregnancy.

Movement: OMG! There are days that I wonder how she has the energy to move SO much. Thursday she rolled and tumbled and kicked so much that I am not sure more than 10 minutes went by without some crazy movement. Did she even sleep at all?? Seems 30 weeks was when she decided to transition from a mellow baby to a wild child!

What I Miss: Not much at the moment.
What I'm Looking Forward To: Lots of things, but baby related I am excited to finish the nursery.
Milestones: All 5 senses are in working order. Not sure what there is to see in there...
Symptoms: I am skipping this for the week because I think anything I am feeling now is not due to pregnancy.

Other: I am pretty sure my baby is already a little bilingual...okay maybe not, but she sure seems to like Spanish!

My husband spoke Spanish for 18 years before he learned English so we have decided to raise this baby bilingual. Her dad will speak Spanish to her and I will speak English and a tiny bit of Spanish since I will be home with her all day. 

Last night after my husband and I got in bed he decided to rub my belly to wake baby up. Even though a squirmy baby is not the easiest thing to fall asleep to I still LOVE when hubby plays with Peanut so I wasn't going to stop it. Within a few moments she was awake and wiggly, but not overly active. In all honesty, she was probably trying to reposition herself away from my husbands rubbing hand! Once she was awake he was talking o her trying to get her to give him a kick. She is getting squished so she is kicking less often and doing more stretching, rolling, and squirming. We both miss those kicks, but Peanut was non responsive to his request. I turned to him and said, "You are asking in the wrong language." He then requested her to kick in Spanish and she instantly gave out the hardest kick I have felt in days! Haha, okay I am know baby can't understand any language at this point, but it was pretty funny and ironic!

Nightmares Coming True Part 2

Continuing from my last post about my sister's brain surgery (I still can't believe I am saying typing those words)...

She made it through the surgery and I can't tell you how relieved we all were. It was the best feeling in the world to know that someone you thought you would lose was going to be okay. We knew her recovery would be hard and that she the next few weeks would be rough, but honestly, the moment the doctor said the surgery went well was one of the best moments in my life. It may sounds strange to say that the day my sister had brain surgery brought me more joy than I can put into words, but it was true. Knowing she was okay and alive and would continue to get better no matter what challenges were ahead filled my heart for her. I felt like I was floating with relief and awe of how strong and brave she is!

The surgery was only 5 days ago so she is in recovery. The poor girl is seriously the strongest person I have ever met and I can't believe that she is recovering so beautifully! She is eating and walking and she came out just as she went in only stronger and braver and so much more beautiful! You should have seen her right out of surgery sleeping on her hospital bed. I have never seen true beauty like seeing her moments after surgery. Her strength and fight are enough to inspire anyone. She has her war wounds sure...a nice scar still held together with staples, but I have always found beauty in the strength that come with scars. It is proof that you have lived, that you have persevered, and you cannot be defeated!

I don't believe things happen for a reason, but I do believe we can find reason in things happening to us. I have tried to find some lesson to learn from this. Our family has always been close knit and we pull together really well in crisis which I am grateful for, but if you ask me we need a break from all these trying times in regards to health.

If you pray, send intentions, or good thought please send some to my little sister.
Random, but my sister and mom were walking the hall yesterday and ran into my CF doc. Later, my respiratory therapist came to visit her in her hospital room. I really love my clinic.

Nightmares Coming True

I debated a lot about whether or not I wanted to write about this. I haven't been able to take any phone calls from my friends checking up on my family because honestly, I am not ready to talk about it. I think that maybe writing the words will be a good middle ground. I can release some feeling, but at my own pace.

Without going into too much detail my I got a call from my brother early Sunday morning telling me that my little sister (23 and healthy) was in the hospital, the icu to be exact, because she had bleeding in her brain. What the hell?  My world stopped. 10 years earlier my mom had brain surgery for avm (arteriovenous malformation which is basically a malformation between the veins and arteries in the brain) and is NOT genetic and only occurs in something like 1 in 100,000 people. Apparently, the doctors weren't sure what the cause of my sister's bleed was so they weren't ruling out avm. Although I was a kid I remember how long and hard my mom's recovery was and I did not want my sister to go through that.

I rushed to the MICU completely in shock at what was happening. I ran through the confusing corridors of the hospital in desperate search to find my baby sister. I can't remeber much of what that first day was like as it all seems to blur in my memory now. I do know that I was told they found she did NOT have AVM (thank goodness), but she had an aneurysm (oh shit!). How did this happen?  She is young, very young and healthy.What the heck does this mean? Is she going to be okay?

Soon after I arrived they whisked her off to do some procedure to look at her brain and assess the next step. Those were the longest hours of my life. Little did I know that it was nothing compared to the following day. She came back from the procedure and they found the aneurysm had stopped bleeding which was good, but they weren't sure what to do. They could coil it, which would be less invasive as they would bring the coil through the artery in her leg up to her brain and coil the aneurysm, BUT it is a relatively new procedure and they have found that they sometimes need recoiling in 10 years. With her being so young it seemed like a less than ideal option. The other option sounded much less ideal to me- brain surgery. As in cut through her scull and mess with her brain- surgery.

That night was awful for all of us. I am sure worst of all for my sister and her new husband of 10 months. I know for me that night was rough. My husband kept telling me to be optimistic, but I was terrified of losing my sister and couldn't seem to get in a mind frame that everything would be okay.

The next day she was transferred to NSICU (I never knew they had so many ICUs) where she waited for a decision to be made. I got to the hospital around 6:30 as we were told they wanted to take action (even though we didn't know what kind) by 8 am. After waiting for what seemed like days we were told that coiling had been the final decision and we all felt relief knowing she would not have to go through brain surgery. Then we waited for the radiologist to come and explain the procedure. Hours went by and nobody came to see us...we tried to be patient, but man that day was long. Suddenly, to all our relief in comes the radiologist. He simply said they decided not to coil and they would be performing brain surgery instead. He couldn't discuss the details and the surgeon would be by to discuss them. With broken hearts and weary spirits we waited yet again. And waited....

At this point I had done NO treatments for the day and hadn't eaten and it was approaching noon. I had planned on going to the hospital until she was brought back for surgery and then returning home to do treatments and eat and still be back in plenty of time for her to come out of surgery.  I knew I needed to take care of myself for baby and so I wouldn't end up in the hospital myself so I went home (I live about 15 minutes form the hospital- huge perk of living in a city) to do treatments and was going to come right back. About 15 minutes after I got home, toward the end of my Albuterol treatments, I got a text from my mom saying they were taking her right now!

I rushed to the hospital in a panic and ran all the way (big belly and all) to the NSICU only to find they had already taken her. This was to date the lowest point in my life. I cannot describe the emotions that rushed through me at that point. I had left my sister before brain surgery. I had made the decision to leave her to take care of myself only to find that I may never have a chance to say goodbye. I chose not to be there as they wheeled her off. I felt that I may never forgive myself. The pain and guilt of not being able to say goodbye to my baby sister was almost too much to handle. The next four hours were the longest moments of my entire life.

This is getting so long and I am feeling I need to take a break from re-living the experience. I will give the rest of the details later, but because I can't end like this I will let you know that she made it through the surgery. I will update the rest tomorrow or the next day.