Sunday, January 31, 2010

HOPING: Look at this smile!

We've had such busy days and weeks filled with so many pediatrican, specialist, and PT appointments that I don't often have a chance to update here on the blog, but I wanted to show everyone the pretty smile that has created so much excitement in our house.

Our daughter's feeding tube is OUT and now we can see her pretty face - a first for us since this all first happened in September. Her poor face had been covered with tape holding the tube in place.

We had a really bad week for her with a cold, congestion, and screaming fits that we now believe were because the tube was rubbing her throat raw. We'd put her down on her changing table and she would FREAK out screaming, crying, gagging, and throwing such a fit, that I wasn't sure if we needed to bring her to the ER or not. Once the tube came out, we haven't had any of these fits since.

It must have really hurt having that plastic tube in for so long. We'd change the tube once a month, but imagine having plastic down your throat for about 4-5 months! Poor baby! We had been keeping it in because we have to give her so many different medications. It enabled us to be sure they'd get in her. Thankfully she and I have a routine down for med's and she's like my little baby bird, opening her mouth to take them by syringe.

Tummytime is also SO much better now and she'll pick up her head and look around until her muscles start to burn and she tires out. She holds her head up best when I'm holding or carrying her. She'll pick her head up and look all around the room.

PT is working with us on different exercises that we do with her to continue building her strength.

She's playing more and awake more. She still takes long naps during the afternoon and early evening, but slowly, she's playing and moving more and more. It's so exciting to see.

She still has medical issues that keep us on our toes that we have to keep a very close eye on, but things are SO much better now than when we first came home from the hospital. We've had two ER visits and one near-visit with a 911 call and the EMTs coming out to the house, but thankfully none of them resulted in her needing to be admitted.

We just keep hoping and praying that she'll continue gaining her strength each day.

Thank you everyone for your prayers and messages of hope and support. They mean so much to us!

Sunday, January 10, 2010

HOPING: Our Christmas Miracle

First, let me apologize for not posting an update sooner! I can't thank each of you enough for checking in and posting messages letting us know you've been thinking and praying for us. We've been so overwhelmed with caring for our daughter that I haven't had enough time to eat, sleep, or shower, let alone post an update here online.

The last time I posted was in early-November when my husband and I were still living in Children's Hospital with our daughter, just six weeks old at the time. (The photo is the night I got to hold her again on October 30th - 11 long days and nights since the last time I had held her). After many up's and down's there with too high or too low sodium levels and a host of other issues to overcome, our daughter fought her way home. We were discharged on November 12th and were practically running out of the hospital with her in her car seat. We didn't want to give them even a second to find a reason to keep us there. We were SO excited to get her home!

Our first night home was so stressful, overwhelming, and scary that we really didn't know how we would care for her on our own. First we had a temperature scare. Because of the infection getting into her brain, she now has trouble controlling her body temperature. After taking her out into the cold parking garage at the hospital, the cold car, and back to an apartment that had been sitting cold for weeks without us living here, her temperature dropped to 93-something. Luckily our home health nurse was here with us at the time and had the great idea of tossing her blankets into the dryer to warm her up. It works everytime now and I even do this before I have to take her to doctor's appointments. I just toss her blanket in the dryer to get it nice and warm, then tuck it all around her and it helps keep her nice and toasty when we go from the apartment to the car.

We also had to feed her with a feeding pump, which is NOT fun. You have to clean it, prime it with the formula, then it would take an hour to feed her (it couldn't go in too quickly since she was still getting used to having food again after all that she had been through), then clean it again for the next feeding.

She was also incredibly fussy after all that she had been through which included IV lines in her upper arm/chest, head, both arms, both hands, both thighs, and unsuccessful attempts through both her feet, hands, and arms during her hospital stay. This poor baby has been stuck more times than both my husband and I combined through our 32 and 33 years of life. To calm and soothe her, we would hold her as much as possible, which meant NO sleep for us.

We also had to give her medications for our first time on our own through her feeding tube. You have to use a stethoscope to check for the placement of the tube to be sure it's going into her belly and not her lungs. We also had the tube clog on us pretty soon after being home from the hospital, which meant we had to put a new one in her. This is not fun. You have to pull the old one out from her nose which comes up from her throat and you can tell it hurts coming out. Then you have to put a new one in. The first time we did this, it got coiled in the back of her throat and wasn't going down properly. I'm completely freaked out by all this and HATE having to get the tube in. Luckily, it turns out that my husband is amazing at this. My husband, who is so easily grossed out and won't even stay in the room with me if I'm watching Grey's Anatomy, can get the tube in our daughter as quickly as possible and without any hesitation. It's amazing what you can do out of love.

While I can't handle the tube, I have taken the lead on managing all of her med's. I have to halve, crush, dilute, and measure out her medications to get the tiny amounts that she needs that just aren't manufactured by the pharmaceutical companies in such small amounts. At first this was really scary and frustrating trying to get everything just right, especially when going on too little sleep.

We got through that first night, and then the next week, and then little by little, things with the tube, med's, and all of her medical issues became more and more normal to us. Since that first week, we've had countless heel pricks to keep track of her sodium levels resulting sometimes in too low and too high sodium levels that require changes to her medication, seizures and an ER visit because of them, and a 911 call when I thought she was having trouble breathing and an ambulance ride back to the ER for what turned out to be her first cold.

But most importantly, we've watched her go from not opening her eyes to opening one eye to opening both eyes, from sleeping ALL the time to waking up and wanting to play and cuddle. She's drinking from a bottle now and is being weaned off of three of her med's and the tube hopefully coming out next month. She's beginning to now hold her head up, swatting at her toys, and will roll from front to back. We had a picture of doom painted for us in the hospital and weren't sure she would ever do ANYTHING but sleep. Now we know that she's capable of so much more.

Miracles do happen and our daughter was our Christmas miracle this year. As things continue getting better, I'll be sure to post more updates and will hopefully even post some beachy postings as things continue feeling more and more "normal" in our house.

Thank you again for all your thoughts and prayers. It means so very much to us. I hope you all had a wonderful holiday and wish you a healthy new year!

Tuesday, November 3, 2009

HOPING: Please pray for our baby girl

Hi, everyone. Thanks so much for your comments over the past month or so, since our baby girl was born. After her birth, I hadn't posted because we were just so overwhelmed as first time parents with caring for our beautiful baby girl. Now, unfortunately though, I haven't posted because we are currently living in the hospital because our six week old daughter is fighting late onset Group B Strep bacterial meningitis. We were moved out of the ICU late Saturday night and are now on a main floor in neurology.

It started on a Monday three weeks ago. It was my first day home alone with her after my Mom had stayed with us for a week and then my Grandmom had visited the week before and I was so excited to have a day for just the two of us. Unfortunately, it quickly turned into the worst day of my life.

The day began like any normal day with her feeding around 9-something in the morning. But afterwards, she began screaming, which I thought was gas since we had been having problems after recently supplementing her feedings with formula to help her gain weight. The day progressed from there through what I now know are all the symptoms... not feeding, going limp in my arms, grunting, mottled skin, and eventually a fever. I knew in my gut that something was wrong, but when I had called her doctor's office, the receptionist didn't even put me through to a nurse or doctor. She just made it seem like I was just a typical first time Mom and everything was fine. They recommended gas drops for her and my husband had picked some up on his lunch break and planned on bringing them home after work.

When things got worse later in the day and I knew that something was absolutely wrong, I rushed her to her doctor's office 5 minutes away (this after I wasted 30-60 min's trying to get through their phone lines which were busy). I'll always regret not trusting my gut.

I got there and they took one look at her and told me to go to the emergency room. Since my husband and I had recently moved to the area, I didn't even know how to get there. The doctor started giving me directions. Thank God that a nurse had the common sense to offer to drive me there. She began arguing with me about her wanting to drive me, since I was upset - again wasting more time. I didn't want to waste even a second in having to switch the car seat to her car, so I finally got her to agree that I would follow behind her instead.

A lumbar test in the Emergency Room was cloudy and immediately they knew it was likely meningitis. My husband rushed there from work and together we were brought up to the pediatric ICU with our baby girl weak in my arms. We spent the night thinking she would get better there. She was still sucking on her binky, eyes were periodically opening, and she was still making noises. Things went downhill fast though.

She began having seizures and the night just got worse and worse. They had to put her on a ventilator and began preparing her for transport. A helicopter crew came and took she and I to the National Medical Center at Children's Hospital in DC. They couldn't have both of us fly in the helicopter, so my husband rushed over by car. We believed that we were being sent to the next hospital for a surgery to drain the swelling and fluid from her head. Instead, we arrived and they got her started on antibiotics.

We're going on our third week here and in that time, she has been fighting this infection and has suffered severe brain damage after the infection spread so rapidly through her blood and brain.

She had started opening her eyes last Friday and they were weaning her off of the ventilator. She took a turn for the worse that weekend though and they think that it was because she tired herself out from breathing so much on her own. They also then had to put her back on some of the medications that make her sleepy.

On Wednesday, October 28th at about 12-1 pm, her breathing tube was taken out. She let out a small cry and has been breathing on her own since. She's been breathing on her own since, and we're praying that she'll continue gaining her strength back. She's been doing well and now the speech therapist is working with us and we'll soon begin trying to teach her to take a bottle again.

We continue praying, hoping, and waiting... please pray for our baby girl as she continues her fight. We have many challenges and hurdles ahead and we and the doctors have no idea how the brain damage will affect her. We just have to wait and see, which is especially hard for me. I'm learning to try to be more patient and we continue our prayers for continued improvement in her health.

*** For those with young children or who are about to have a baby, please read about the symptoms at the link below so that you'll recognize them if this ever God forbid happens to your child. Do not waste time at home waiting to see if things get better or by going to your pediatrician's office first. You NEED to get to the ER immediately. http://www.groupbstrepinternational.org/info_main.html I tested negative for Group B Strep during my pregnancy and never realized that this could be a risk after her birth, so be aware so that you can recognize it if it happens to you. ***

Please pray for our baby girl.

Wednesday, September 16, 2009

DECORATING: Beachy Kitchens

It's been awhile and oh my, has lots been happening. Between doctor's appointments, sonograms (I'm coming up on my 5th? one this week, I've lost count), decorating the nursery, getting the lease signed with the tenants for our condo, family members visiting, and lots of shopping trips to get ready for the big day, it's been pretty hectic. We only have 2 weeks to go now 'til this little girl's arrival. I'm scheduled for a c-section the day before my due date. The nursery's just about complete and we're feeling (mostly) ready to go now. I promise to share nursery pic's soon! In the meantime, I wanted to share these cute kitchen pic's from Country Living. I love the shades of beachy turquoise and green. How great is the turquoise blender and toaster? Does anyone know where to find one? To see more, visit here and here.

Tuesday, July 28, 2009

SELLING: DC Condo for Sale/Rent

Thanks for all your lovely messages and words of encouragement!! I wasn't sure about the combination of items I chose for the nursery, but after all your thoughtful & sweet remarks, I know it's going to look great when it's all pulled together. Our decorating has been in limbo as we anxiously await for furniture and nursery items to arrive. So far we have the cherry blossom bird painting, area rug, nightlight, crib dust ruffle, and cute bird pillow. We're waiting for the crib, changing table, Anthropologie knobs (I went ahead and ordered them with the gift card I had), and Land of Nod curtains to arrive (which someone kindly purchased for us off of our registry). I cannot wait for everything to get here, so that we can put the room together. Also arriving are a twin sized bed, wicker rocking chair, and chalkboard all from my Grandmom's house, kindly repainted by my Dad and being delivered in person next weekend! I can't wait to see how they look and for my family to visit us of course.

In the meantime, we've been dealing with our condo that's currently on the market to sell or rent. If you know anyone interested in a beautiful DC condo in this cute historic building:
with this amazing view of the National Cathedral from its living room and kitchen windows:
Please have them contact me for more info and I'd be happy to share more details. Hope everyone had a great weekend! : )

Monday, June 22, 2009

EXPECTING: Decorating the Nursery

We've finally gotten the boxes out of the kitchen, dining area, and living room! The nursery has been serving as storage for all the empty boxes and our guest room is holding all the still-packed boxes. We're slowly getting there! Thanks for all your sweet comments these past couple of weeks! I love reading them and haven't had a chance to drop by all your blogs, but will be as soon as we make headway in our new place.

I just wanted to post a quick update on what I have in mind for our baby girl's room. I'm doing lots of pink with touches of oranges and light blues (like our wedding colors). Since we have white walls in our new apartment, I the touches of color should pop against the background of white. So far, we've received this cherry blossom/blue bird painting as a gift from our wish list:
...along with this cute area rug.
I can't wait to add these curtains:
And this Cracker Barrel rocking chair:
I switched from the Walmart Baby Mod crib I had picked out to this Dwell one at Target (which is $50 cheaper):
To which I hope to add, this crib sheet:
And maybe this dust ruffle:
I also hope to add this matching changing table (also $50 less expensive than the Walmart one I had originally picked out), which provides some additional storage:
I'm thinking about switching out the metal knobs for these cute blue ones from Anthropologie (where I have a gift card!):
Which would make it look something more like this:
And isn't this pink and orange bird pillow cute?
I also love this nightlight.

And I've had my eye on this orange and pink capiz light.

I also have a bunch of these orange and pink wood frames left over from our wedding for a project for the baby's room. I have enough to do the alphabet and am thinking about doing printed letters A through Z to hang on the wall together or trying to get each of our family members to hold up a printed letter and take a photo of them to frame. Since our family members all live more than 3-4 hours away, thought it'd be nice to have family pictures in the baby's room.

That's it for now... I can't wait to get started!

Wednesday, June 10, 2009

DECORATING: Had to Share

We're all moved in now (thank goodness), but not yet unpacked (getting there). We picked up some mail from our old place and I had a Country Living magazine waiting for me - yay! I had to share these pretty, beachy pic's from this month's issue and their website. I can't wait to get unpacked, so that we can start decorating. Please keep your fingers crossed for us as we're hoping that our condo sells or rents soon - and then I can pick out a few new pieces for the new place!

{Photo Credit: Björn Wallander}


Check out this cool website for vintage prints like the one above.
{Photo Credit: Aimee Herring}

{Photo Credit: Aimee Herring}

{Photo Credit: John Coolidge}

{Photo Credit: John Coolidge}

{Photo Credit: Robin Stubbert}

Thursday, May 28, 2009

SHOPPING: New Decor for New Digs

We're moving! We'll be renting our condo out and moving to a bigger space to make room for baby. While we're sad to leave our current neighborhood, we're excited to spread out into more space in a cute area just outside the city. This condo was never really big enough for the two of us, but especially now that there will soon be three of us. Moving is never fun (the past week or two has been chaos) and we just can't wait to get settled into the new place. We'll have a balcony, fireplace, bigger kitchen, and central a/c!

For our new balcony, I adore these outdoor rocking chairs painted in beachy green ($130). They also come in a beachy gray color. It'd be great to have a rocking chair for rocking the baby outside on summer nights.

The plan for our new space is to have a guest room for visiting grandparents. Since we'll be using what little closet space we can get for storage, we'd like to try to fit a wardrobe in the guest room for stowing suitcases and clothes. I like this Aspelund wardrobe, new at Ikea ($179) which is on the smaller side and in our price range.

Ikea also has a matching Aspelund bed in full/double and queen sizes ($150 + $179).

Thursday, May 21, 2009

DECORATING: Home Office + Guest Room

I'm getting so excited to decorate our new (much larger) space! I came across this pic today on House Beautiful and love all the touches of white. I want to do my home office (I'll be working from home once the baby arrives) in mostly white with pops of light blues and greens. We'll be using the master bedroom as an office and guest room, so that our bedroom can be down the hall instead, next to the baby's room. I'm thinking of using our Ikea white bookcases and finding some pretty curtains to hang from the ceiling to divide the space between the guest room and home office. It's a pretty large master bedroom and our plan is to also use the huge walk-in closet to create an office for my husband (3 spaces in one room!). If you come across any pic's online where they show a divided space, please include the link in a comment. I'm looking for ideas. Thanks!

{Photo Credit: Michael Price}

Wednesday, May 20, 2009

EXPECTING: Future Phillies Fan

I never did pick out anything for a boy's nursery and now I know why. My gut (or belly!) was telling me all along that it's a GIRL! We found out last week at our sonogram. Look what my husband surprised me with tonight!

We're also excited because we found an apartment and are moving in just 2 weeks! We're packing, moving, having our condo painted, and getting it ready to go on the market to sell or rent. We're so excited to get into our new place, which has much more space!

Sunday, April 19, 2009

DECORATING: Beachy Coat Rack

Last summer I had discovered a pretty large piece of driftwood on the beach near my inlaws' beach house, had dragged it to their house, and then forgot to put it in our car before we left. I was annoyed with myself then for forgetting and even more so now after seeing this fabulous coat rack on Sunset's website. I'm definitely going to be on the look out this summer at the shore and will not be leaving any driftwood behind!

{Photo Credit: Rob D. Brodman,

Tuesday, April 14, 2009

SHOPPING: For Baby... Let the Fun Begin!

We're not doing much decorating these days with the possible (likely) need to move in the very near future with baby on the way, so this is just window shopping (and a little daydreaming) for now. If we had a girl (please let it be a girl!), I'd love to do these colors - baby blues with bright pinks and oranges - in her room. I wanted to tuck these ideas away to remember them for later, when it's time to decorate for baby.

You can't help but think of cherry blossoms this time of year in DC and after our recent visit to see them at the tidal basin, I'm hooked. I came across this Cherry Blossom Birdies Canvas Reproduction painting by Posh Tots while looking through baby shops online and love it ($127).

I love this Garden Stepping Stones Rug by Posh Tots ($86).

And I adore these Pink Damask Printed Crib Sheets by Dwell Studio at Target ($14.99). I especially love the pattern because it matches a duvet cover I have by Dwell that I bought from Target years ago. It'd be perfect to add to a bed in the baby's room for when we need to catch some zzz's alongside baby and to also use for visiting grandparents (since wherever we do end up moving to will surely be a small space - we shall see).

I'm really not crazy about the prices of cribs, but do love this simple one by Baby Mod at Walmart ($300). It also received pretty decent reviews, which is nice.

I also love this mosquito netting from Ikea for hanging over the crib - does anyone know if that's not safe for any reason? ($20).
How cute is this pink and white Glider by Dwell Studio at Target? ($180 + $80)

Next I'll pick out some boy colors! : )