A Day In The Life Of My New Home Away From Home

Hospital Bed Rest Day: 28
Holden Baby Girls Gestational Age: 29 weeks 4 days

Just because I'm looking for things to keep me busy and this blog has become my personal journal....I thought I'd record a day in the life of my Hospital Bedrest experience. It might be boring for others to read, but someday I'll look back on it and hopefully laugh.

Somewhere between 7:00 and 8am: Knock, knock. A nurse comes in to take my blood pressure, pulse and temperature, scanning my bracelet like a box of cereal. She hands me a cup of pills--prenatal vitamins, stool softeners and gets me a new pitcher of water and reminds me to drink, drink, drink.

After she leaves, I "Ride" my bed to sitting position, get up and go to the bathroom, brush my teeth and remind myself to never take standing up and walking for granted as I get back into bed.

Knock, knock, Nurse's aid enters and ask me how I'm doing today. Has me step on the big black scale for my daily weigh-in. Offers to bring me things. Changes the date and nurses names on my whiteboard. Stocks my room with towels and washcloths. Tells me to let her know when I want to shower so she can change the bed linens while I do. Calls me honey, darling or sweetie.

Knock, knock. Food service staff comes and delivers my breakfast with my little cup of OJ. Turn on the Today Show to find out what's going on in the world outside my little square box.

Knock, knock. Someone comes in to clean and sanitize my room, clean the bathroom, sweep & mop etc. Small chit chat is made about the weather or current news topics.

Turn TV off. Open up book. Read one sentence.

Knock, Knock. Doctor walks in and asks if there's anything new to report, reviews my plan and asks if I have any questions and says something like "Keep doing what you are doing!" Total time in my room: anywhere from 2-3 minutes tops.

Ohh...I have to go to the bathroom once again with all the water I'm drinking this becomes an hourly routine.

Check email and updates on social media make a few comments...another small connection outside of my little box.

Knock knock. Nurse comes in again. and squeezes cold goop on my belly, listens for heart tones on each baby and then hooks me up to the tocco machine. For the next hour I'm attached to my bed and I cannot move while they get a reading of my uterine activity. Nurse leaves. I lay flat and immediately need to use the bathroom.

Knock, Knock. Someone comes to get my breakfast tray and gets my order for the days meals. What do I want? Sigh. Something other than hospital food. Anything, but hospital food. I'd eat cold cereal for breakfast lunch and dinner, but not more hospital food. I end up ordering the lasagna for lunch and pork chops for dinner and to spice things up a bit, I get BLUEBERRY pancakes for breakfast
tomorrow.

Read some more to pass the time while on the monitor.

Knock, Knock. Nurse comes in to take the tocco monitor off. Reviews the hour from the long strip of paper and says everything looks great, just some uterine irritability.  She leaves and I sit up and make my 15 steps to the bathroom. Remember that I need to record my output. Wash hands and write everything down.

Walk to the window to see the world. Sigh.  At least I have a beautiful view of the city...Back to bed. Back to laying completely flat.

Decide to pull out the crocheting and realize I've mastered crocheting and laying flat on my back.

Knock, knock. A cheerful person comes in to bring my lunch tray. Sit up and eat my lunch while I watch a little food network.

Finished up lunch. One of the highlights of my day is my daily shower. I call the tech to wrap up my IV on my arm. She comes in cheerfully with a bag of new clean linens for my bed. I sit up and climb out of bed. Gather my clothes and go into the bathroom. Turn on the water and realize that warm water is like a little gift from heaven. I sit just an extra minute or two to let the water just run and soak in the few minutes out of my bed.

I climb into a nice clean bed and hear another knock on the door. Someone enters whose main purpose is to collect my garbage. I wonder why the person who came into sanitize earlier didn't just take the garbage with her. Seems like that would simplify and save time.

Look at my book, look at my crochet, look though all 60 channels on tv and nothing looks interesting to me. Realize how out of shape I am and that the process of taking a shower has wiped me out. Decide to roll over a take a short nap.

Knock, knock. Nurse comes in to take my blood pressure, pulse and temperature, scans me like a gallon of milk. Tries to listen to the babies heartbeats. I remember the reason I'm laying here. Feel so grateful to still be pregnant. Look at the calendar and tell myself I can do it! Realize that Stephen and Andrew will be by soon.

Knock, Knock. Dinner arrives. I look at the clock and it's 4:45. Let it sit for about 45 minutes knowing that I'll starve later if I eat it right away.

I hear the door open and a big "Hi mommy! Hi mommy!"  comes from behind the privacy curtain. Best part of my day, hands down. Get a kiss from Stephen. Andrew immediately wants to climb up on my bed. He finds the buttons. Up, down, up down, I shoot like a rocket. He laughs and thinks it's hilarious. I soak in his laughter that I miss so much and all of his cuddles. He's see's my jug of water and wants a drink then asks for a snack. I open the drawer next to my bed and have a big tub of crackers. Pull out a few and realize the amount of crumbs I'll be sleeping with tonight and not care a bit as I open them. I ask about his day and he tells me random things like he needs an IV in his head or he doesn't need a MRI or X-rays today. I realize he sure knows a lot about hospitals for a three year old.

The time for them to go comes way too quick.

They leave, blowing kisses at the doorway. I smile. The door closes. I sigh then realize I've made it almost made it through another day. Small goals.

I get up to use the bathroom look out the window and see the sun setting. Think about the next day. The next week. The next month. Start to panic a little. Try to push it aside and stay positive. Say to myself, "At least the girls are okay and I'm where I need to be" "It could be worse. I'd rather be here then be spending the time in the NICU." "Either way I'd be at this hospital everyday."

Knock, Knock. The night shift of nurses are here and I get put on the tocco monitor one more time. Once again I'm attached to my bed for the next hour.

I turn on the TV once again. Again I realize I've never watched so much tv in  my entire life.

The hour is over and the nurse returns to take me off the monitor and listen to the girls heartbeats one more time. Scans my arm once again like a bag of chips and hands me my nightly pills.

I'm starving and I eat my late night snack stashed away in the mini fridge. After, I brush my teeth and wash my face... then climb into to bed, turn out the lights and cuddle up with my 7 pillows. Another day down and I fall asleep.

7:00 am I hear noises outside my door and realize it's shift change once again.

I'm still pregnant and still in the hospital. Life is good.

Repeat. Repeat. Repeat.

It feels a bit like Ground Hogs day.

Everyday same routine.

I'm getting to know the nurses quite well and all the techs. They are great and have been so wonderful to me. 

Grandma comes to play

We always love having visitors and when grandma came a month ago it was no exception. I'm not sure how much of a vacation it was for her, but she was so sweet to come and help us. It's been harder and harder to take care of Andrew. I'm wasn't able to lift much of anything, so grocery shopping, getting Andrew in and out of the car, his booster seat, doing laundry and chasing him down to get dressed and change his diaper is becoming nearly impossible. Grandma's timing couldn't have been better as we are trying to take every precaution with this pregnancy.

Andrew of course loved every minute of attention from grandma and soaked it all in. He asked every morning where grandma was and if he could wake her up. But I think his most favorite thing to do with Grandma was to...of course walk. He'd love to walk with her hand either to the laundry room and shut the door so it would be completely dark, or he'd walk her to his bedroom and "put her to bed" have her lay down and sleep on his bed. He'd even sing a song or two and maybe read a book, then close the door. It kind of became a joke that it was "hard work" to play with Andrew because he'd just put you to bed. As much as they played that little game I never got a picture, but did get some cute ones of Grandma and Andrew!

 Storytime with Grandma

 Playing with cars

 Playing with leftover fireworks on the front porch

Walking around the park 

Grandma also helped us do lots of organizing and unpacking. Which was a huge help, as that too has been a slow process with me being pregnant and not able to do much. With all of that said...we did squeeze in a little playing time. 

Stephen took Andrew and his mom hiking on the weekend. They found a fun new spot with a gorgeous view and lots of steps! 

Before she left, Stephen decided to take a day off and we headed downtown to check out the Georgia Aquarium. Which was incredible!! One of the best aquariums I've been to by far. Apparently when it opened it was the largest in the aquarium in the world. It has 11 dolphins that put on a pretty fun dolphin show  with all their jumps, twists, dives and splashes.  I also loved seeing the huge aquatic life like the beluga whales, whale sharks and manta rays. What a fun day!

Petting the Sting Rays

 This picture doesn't do it justice at how huge the Manta ray is.

Andrew had fun taking pictures of the animals too. This one of the jelly

fish actually turned out pretty cool. 

 The only way I could have gone was if I was in a wheel chair. Andrew loved going for a ride in "mommy's stroller" 

Andrew's Surgery

With a little extra time on my hands these days, we are catching up on some overdue blog posts! 

Last month Andrew had Surgery on his legs. This was a surgery that had been recommended to us and there are only two doctors in the country who perform this specific surgery on kids with CP. One doctor is in New Jersey and the other is in Galveston, Texas. We were hoping that we could get in and do it before we moved, so we could just make the 6 hour drive to Galveston.... But no such luck! 

This surgery was an optional surgery, one that we didn't need to do. It was tough to try and decide whether or not this was the best thing for Andrew. After tons of research, consulting with different doctors and therapists, and much prayer we decided to go for it. Here's a little bit about what Stephen and I had been contemplating as parents. [taken from an email written to our family]

We are grateful that Andrew was approved and is a candidate for this procedure. Stephen will be flying with him to a doctor we were referred to down in Galveston, TX on Wednesday. The surgery he'll be having on Friday is a SPML (Selective Percutaneous Myofascial Lengthening) Surgery. Most kids with CP have to go through numerous tendon lengthenings surgeries throughout their life. Their muscles (because of the spasticity and tightness) cannot keep up with the growth of their bones and if not taken care of can cause bone growth deformities. The reason we are flying back to Texas for this procedure is because this specific doctor, Dr. Yngve uses a unique approach (less time under anesthesia, 2-3mm incisions, less scarring and has a longer lasting impact) He will be having it done in four different places on each leg from his hips to his ankles. Then it will be a 4-6 weeks of recovery.  We are praying and hoping this will help him in the long run with his bone growth as well as helping him be more independent with walking and other activities. 

We had only consulted with Dr. Yngve over the phone and he explained that Andrew would have the procedure done in four different places. His inner thighs, hamstrings, calves and ankles.  But after his actual consult in person before the surgery the doctor didn't feel that Andrew needed the whole procedure in all the areas. So they ended up just doing the calves and the ankles. In some ways this is good....in that he's not as severe as the doctor originally thought,  But half of our issues is that Andrew is really still really struggling sitting on his bottom because he is so tight in his hamstrings. We have mixed emotions that the doctor didn't just do everything. But maybe next time around. 

Stephen was a trooper to take this on himself and let me rest at home. He flew with Andrew by himself and did everything. To buy some time the day before the surgery, they found the NASA space center just outside of Houston and walked around some of the exhibits. Andrew of course LOVED this.

The first few days post-surgery Andrew was in a lot of pain and wanted to walk. He couldn't walk because of the pain, so he'd just stand and cry. Since it was a same-day surgery, they pretty much hung out in the hotel room ordered pizza and watched movies on the iPad for a few days. Stephen tried to venture to the Houston Zoo one day as a distraction, but that pretty much backfired. Andrew just wasn't himself. They came home a few days later and he did just fine. 

He can walk if he holds your hand and hasn't been bothered by the casts at all. The are pretty similar to his regular braces. So he's adapted pretty well.


Here's a little before surgery walking taken at the NASA space center

Life in bed in the hotel room. 

Those are some BRIGHT green casts!

He tried really hard to ride his new trike, but it was pretty tricky with casts. 

Four weeks later his casts are now off. He was fitted for new braces and we are crossing our fingers that we can see a difference in his ability to walk and keep his balance.

Bed Rest

I knew with this pregnancy, with my history and being pregnant with twins again... There would be some point where I would need to go on bed rest. Well, that point came a little earlier than I had hoped. But we are so very grateful that this time around we at least got some warning and thanks to modern medicine things were able to be stopped. 

The last few weeks as the days ticked by, both Stephen and I have been nervous, anxious and emotionally stressed knowing that we were getting closer and closer to the time that I delivered Andrew and Ethan. 26 weeks 4 days. It has been etched in my heart for many different reasons.  

A few weeks ago I had started feeling some Braxton Hicks contraction, which I never felt last time around. I had an appointment with my OB a few days after feeling them and he reassured me that they were completely normal. Well a few days later we were at church. I kept feeling them more constantly. Stephen and I left church a little early so I could go home and lay down. But before I could get to that point. I'd had a few more and we decided to just go get everything checked out. 

I'm so glad we did because apparently there was more happening then I could feel and I was constantly contracting. They immediately gave me steroid shots for the girls to help their lungs develop faster and put me on magnesium to calm the uterus and slow things down. 

This pregnancy I've seen a perinatalologist who specializes in high risk preganancies every two weeks since I was 12 weeks along. They do ultrasounds at every appointment and take all sorts of measurements. One of those being my cervix length. Anything above a 2.5 is in the normal range. Mine have usually averaged aroung 3.3-3.6. They checked it again when I was admitted to the hospital and it had dropped to a 2.1 and it was funneling(starting to open near the babies head). They then of course ran all sorts of test and said I was dialated to a 1-2cm. 

After three days of IV fluids and 24 hrs of magnesium sulfate (which makes you feel tired, dizzy, nauseous and just completely out of it.) They started me on indosium. Another muscle relaxer to help calm the uterus down. I went in for another ultrasound 3 days later.  Things had improved my cervix was a 2.6 and although the funneling was deeper, it was closing up. This was such a relief to hear.  I continued on the indosium and followed up again a few days later. My cervix measured 3.0 this time and the cervix was mostly closed. Who knew your cervix can change back? I sure didn't. At this point there was a big debate on whether I should stay at the hospital or I should go home and be on bed rest there. 

Thankfully my OB is totally on board with me staying. As hard as it is on my family to be gone. This is right where both Stephen and I would prefer me to be. I need to make it at least through the month of August. Then I will be 30 weeks and the risk of a long-term disability goes down significantly. These girls will most likely come early, but when is the big question. We'll see how things go and are taking it a day at a time. 

It been about a week and a half and for now this is life at the Holden home. We know that this is just temporary. Stephen has been amazing at just taking everything on. The household chores, taking care for Andrew plus all the stress with work. Our ward has been amazing and has step up and help this new family that most people don't even know. From taking Andrew at the drop of a hat to bringing meals by and visiting me at the hospital...they have been wonderful! Only in the church would you feel completely comfortable letting complete strangers take your child and bring you food and not worry one bit. I feel so grateful knowing my family is being taken care of.