Wednesday, November 19, 2008

Getting Back to Normal

After a bit of chaos, routines are beginning to fall back into place. Tons of progress has been made and today you'd really never know that Emily had surgery just days ago. On Thursday, Friday and Saturday she just really wanted to be held and loved, and she wasn't her usual cheerful self. On Sunday she started eating like a horse, was sleeping more through the night, and was wrecking havoc on the apartment...the calmness was nice while it lasted! Here are some pictures from the hospital and what her arm looks like today.

Showing off her ankle bracelet
Getting woozy
Being rolled away
In a lot of pain

The wound with dissolvable stitches. It should lay flat in a month.

Saturday was wonderful. This is the first Saturday in what feels like a million years that Eli has been in his pjs at the breakfast table. Let me tell you...this was so weird!! He turned in his final capstone project this week, which made him FINISHED WITH HIS MBA. I admire all those wives out there with children whose husbands are in school full time and work full time. Eli and I have learned to make the most of the 15 minutes a day we spend together. Now we'll have to readjust to being together more often--although Eli's anxious to start a new project now. (we'll see how long that lasts! heehee)

Our friends Katy and Justin had a fall party during the day, which was perfect for Emily (although she was still a little cranky). We were able to see a lot of good friends and their babies, and maybe even for the last time. Our little nephew Aidan was the star of the show with his sitting up and crawling abilities...I love him!

That night we went downtown to a great tapas restaurant for the Capstone Party. I was finally able to meet Eli's client--and new employer in San Antonio!!--and the rest of his class. We had a blast and were exhausted at the end of the night...thanks to Elizabeth for babysitting!

Sunday we met Eli's parents and sister's family for mass and pancakes. Sheri stayed with us until yesterday helping to get things back in order. I have been beyond exhausted lately with Emily waking up 10 times every night and got really behind on laundry, cooking and cleaning. We have 3 weeks left until we move to San Antonio, so Sheri watched Emily while I was on the phone finding new doctors, transferring medical files, interviewing moving companies, etc. etc....Moving is such a pain.
Look at that skinny little arm!
Here are some pictures from earlier last week with Sophia. We went to a great play area with a bunch of foam climbing things...the girls had so much fun!
They loved crawling through the "tree trunk"
And got stuck too. :)

Thursday, November 13, 2008

Successful Surgery

I'm happy to report that Emily's surgery went well and she is already recovering quickly. We left the house by 8 and started pre-op by 9. This was a pretty intensive interview of her past heath history, including her 3 month NICU stay and heart surgery information. All of yesterday was spent scrambling to get faxes from her cardiologist and pediatrician to get clearance for surgery (including Eli at Kinkos at 10pm). I was a little nervous because in the past few weeks she has had an ear infection, strep throat, a sinus infection, and an awful stomach bug, thus meaning clearance for surgery was in jeopardy.
We proceeded to pre-surgery to talk to all the doctors, nurses, and anesthesiologists, and sign all the wavers. This was at about 10am and the melt down began (starvation plus missed nap = unhappy baby). Luckily she was given the first round of anesthesia, meaning that within 20 minutes she was groggy and literally falling out of my arms. Eli and I got a kick out of her hospital pjs, because one pant leg alone was about the size of her whole body (see picture above). I really enjoyed spending this time with her because she was calm and let me hold her. Then when she was almost asleep, the nurses wheeled her into surgery, leaving Eli and I behind. (yes, I was an emotional wreck...her eyes just looked so sad and she was trying reach for us and climb out of the rolling crib)

Surgery began around 10:45, and we went out to the waiting room to find Eli's Aunt Joan waiting for us. It was SO sweet of her to come and help us get our mind off of things. We oftentimes feel very alone in Dallas without much family here, and I can't tell you how much it meant to us to know that we had support. Our dear friends Anne and Rebecca, who work at Childrens, came to be with us too. The doctor came out around at 11:45 and told us that things went very well. The large hemangioma on the left arm was fully removed and was stitched up like a drawstring purse. In other words, the skin wont actually lay flat for a month or so, and the middle section of the scar will be red. This is mainly because there wasn't enough skin to cover the lesion without doing a skin graft. The small hemangioma on her right hand was lasered and will eventually loose color and lay flat in about 5 years.

From there I went to Post-Anesthesia Recovery and Eli had to wait outside. As soon as they opened the door I could hear Emily screaming. I was so frantic that I was practically sprinting through the eternally long room, passing at least 15 patients, hoping each one was her. When I finally saw her, she was sitting in a nurse's lap trying to claw her to death. That poor woman!!! She calmed down when we got her some apple juice and took off some of the monitors. Still really groggy and confused, she was lashing and screaming at anyone who tried to touch her. Before we could proceed, we had to call the doctor to re-bandage her arm because she lost circulation in her tiny purple hand.

After about 4 bottles, Emily was moved to Recovery. This was kind of hard for me because Emily was visibly in so much pain, but at least Eli was there with me. We opted out of the intense pain killers because studies have shown that Tylenol creates less side effects and she wouldn't be able to sleep if she took the narcotics. After an hour or so, we realized that she hadn't been given any Tylenol, and soon thereafter she began to feel better. At around 2:00 Emily was discharged and had the biggest smile on her face when we walked out the doors to the main hospital.

At home we spent the rest of the day with more apple juice and changing diapers. The swelling went down in a few hours, and she got her energy back for a little while in order to rip off the bandaids from the IVs and unravel the ace bandage. What did they expect? Toddlers are curious! After a long and stressful day, Emily went to bed early and we haven't heard a peep from her since.
Eli and I would like to send out a warm thank you to everyone who called, texted, emailed, or facebooked us to tell us they were praying for Emily. This surgery was especially taxing on our emotions because it reopened the wounds from her heart surgery a year ago. Back then we were numb to say the least. We were nothing but robots, going in the motions of being new parents in pain and confusion. It is now that we recognize and process the risks and worries of surgery on a small child. We literally could not do it without the constant love, support and prayers of those who truly care about Emily. I have said this many times before, and I will say it many times more: BoldEmily is the best example I know of the virtues fortitude and perseverance, and we all could learn so much from following her lead. She is the most beautiful child of God!!

Wednesday, November 12, 2008

24 Hours to Go

Tomorrow is surgery day.

I think Emily can tell something is up...she refuses to leave my lap.

I'm so nervous I can barely function. How am I going to be tomorrow morning when Emily is screaming out of starvation?? I just don't know why they make little babies fast. She won't understand, and still very often wakes up in the middle of the night to eat. People who have been around Emily know that her metabolism is insane...I literally spend the entire day trying to figure out what to feed her next. Her breakfast is usually eggs, toast, oatmeal, a piece of fruit, and 6oz of milk. That tides her over for about 2 hours. This kid should be obese...not 16 lbs!!

When she had heart surgery, it took her an entire week to come out of the anesthesia. Granted she was 2 lbs, but still. What if she reacts to the medicines like the tons of others she has been given in the past? I know she will be well cared for, but I don't like the thought of her in any more pain than necessary.

Why am I so stressed about this?! This is a minor, 30 minute surgery at one of the best hospitals in the nation. Was I acting like a lunatic when Emily needed her heart operated on to actually save her life? No. At least I don't think so.

This is one of those times when things are out of my control and I need to let God take over. Easier said than done! Please say some extra prayers for us today and tomorrow, especially at 11am. We'll post updates soon.

As for now...we're off to mass.

Monday, November 10, 2008

Emily's Surgery

After a year of prayer, research and talking with several doctors, Eli and I decided to proceed to surgery for removal of the hemangioma on her arm and laser the hemangioma on her hand. Our decision was accelerated by our upcoming move to San Antonio. The doctor is very experienced and the hospital is among the top 5 in the nation, so we had to take advantage! The date set for her surgery is next Thursday, November 13th, so please pray that Emily will be healthy and strong that day.
Just to give a little explanation, hemangiomas are vascular birthmarks commonly found in preemies. They appear a few weeks after birth and typically are located on the head or neck. Usually they grow until the baby is about a year old, and then begin to shrink and involute completely. The hemangiomas cause no pain to Emily (and is probably more painful for us parents to bear all of the awful and thoughtless comments). We had a hard time figuring out which treatment to go with, but we figured out that Emily is immune to steroids (she was given steroids for her eczema) which is an alternative approach. God made Emily perfectly and in His image, and she is beautiful regardless. However, the hemangioma on her arm is growing to the crease, meaning that she soon won't be able to bend her arm. Also, since it is protruding so much, it wont ever involute completely and a pouch of scarred excess skin will remain.
You can read more about hemangiomas by clicking here.
The procedure should be pretty low risk and is only 30 minutes, but of course, we're still very Check Spellinganxious about several things. I'm concerned that she'll have a hard time coming out of the anesthesia and of course the risk of infection is always a problem. Also, I hate to think of her being taken away from us again. It sounds silly, I know, but she's still so tiny and she'll have to lay on the operating table with monitors and tubes in a scary place without Mommy or Daddy. During her heart surgery, she was already in the hospital environment, already intubated, had monitors, and we were used to visiting her. It's a different story now, especially since Emily still cries if I leave the room! I hate that she has to fast before the surgery--maybe it's not such a big deal to some parents, but to a mom of a 16lb-15 month old, I really feel like she needs all the calories she can get!
Here's how the surgery will go:
1) There will be 3 stages of anesthesia. First she will drink medicine to make her woozy, and she won't put up such a fight when she is taken away by the nurses. Then comes the laughing gas, followed by the topical anesthesia.
2) She will be intubated and put on monitors. The doctor will first cauterize the hemangioma on the left arm and will stitch the surrounding skin together with dissolvable stitches. That wound will be covered with essentially skin glue and a soft wrap. Afterwards they will laser the one on her hand, which will stunt the growth, reduce the color pigmentation, and decrease the size.
3) After she awakens and the anesthesia wears off, Eli and I will be allowed to sit with her. Later on that day Emily will be discharged along with pain medication.
Her down time will only be a few days. If you have a very curious baby, any tips on what we can do to keep her still for a few days? The total recovery time could be up to 6 weeks, but she always heals quickly, so we're hoping that by Thanksgiving she'll be back to her normal self. We are asking you to pray hard for a safe operation and a safe recovery for our sweet Emily!
Here's the first picture of the hemangioma when Emily was 5 weeks old.
Here's how much it grew in 5 months

Here it is in July

Friday, November 7, 2008

October Happenings

Here are some random pictures from October. I'm sorry the format is weird...I don't have the patience to fix it!

Emily has been very busy exploring the house and trying to imitate everything Eli and I do daily. She loves to sit out on the patio and watch the cars go by, and really gets a kick out of popping bubbles. She gets so excited when she sees birds and squirrels!

Recently she has learned to stand up in the tub and rushes to feel the running water. She's still fond on the rubber ducky that Eli got her, and gives him lots of kisses.

Emily is very good at throwing all the toys on the ground to make room to climb the bookshelf. Did I mention that she's a monkey?

Yummy Danze spaghetti sauce...not so yummy in the eyes.

Still lots of sniffing when she gets really excited.
Helping unload the dishwasher (no matter where she is in the apartment, as soon as she hears me start, she races over and looks for the sharp knives)

Play dates have become very different now that Emily is old enough to actually "play." I love these cute pictures of her and Caroline looking out the window. Right after I took this, Emily pushed Caroline down to the floor. Poor Caroline! Emily did feel bad though...her eyes say it all.

We have gone to the cap bar at UD a lot lately with Sophia. It's perfect because mommys get their coffee and babies have lots of grass to roll around in. These pictures are of Sophia running away from Emily trying to chase her.

In the beginning of October, Emily and I went to San Antonio to be with my sisters Annie and Teresa while my parents went to New York to visit my brother Paul. Nona (great-grandmother) took us to see the newest addition to my first cousins (#31 i think), Natalie who was born in the summer. I love her fluffy hair!! Caroline at 3 years old is a great big sister, and really enjoyed playing with Emily too. Sean is so sweet and gentle with the girls, much like his 3 older brothers. Emily was so funny--she just wanted to look at Natalie the whole time...she adores those girls!

Of course Emily feels right at home at Nana and Grandaddy's house. Sweetie the dog wasn't as happy, constantly running away from a baby's curious hands. Teresa helped me out so much, from playing dressup, to giving her baths. What a great auntie!

Thursday, November 6, 2008