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.
Wednesday, November 12, 2008
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
anxious 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!
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
anxious 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! 
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
Saturday, November 1, 2008
One Year Ago Today
Today, All Saints Day, marks the anniversary of Emily's homecoming from her 3 month NICU stay. Last halloween was spent for the first time as a family without supervision by the nurses and doctors. The hospital allowed us to "room-in"--sleep in a special room in the NICU with Emily not connected to all of her monitors. Essentially it served as a practice run with her new take-home heart monitor and also the first time I was able to nurse Emily in the night. The nurses still came in every 4 hours to take her temperature, blood pressure, check the heart monitor, and weigh her diapers, but to Eli and I it didn't matter.
It marked a whole new set of freedoms which we hadn't ever experienced before in the past 82 days of her life:
-I decided when to nurse her, rather than following her rigorous feeding schedule which entailed nursing every 4 hours for 20 minutes max and then following it with a bottle of fortifier from the nurse.
-We decided when her heart monitor alarmed, whether she actually stopped breathing and her heart rate dropped, or if it was just a false read.
-We bathed her, we dressed her in the most snuggly pj's, and we tucked her into bed with a prayer and a song.
-We held her, kissed her, loved her when it was not her touch time (45 minutes every 4 hours we were allowed to hold her)
When we came home I knew that our lives were about to be flipped upside-down, but I had no idea how great things would be, nor how hard things would be. Emily, to say the least, flourished unbelievably. The first few days she slept all the time, and I remember waking her up to feed her. Shortly thereafter, she started nursing every 30 minutes, around the clock. We had one great day as a family at home, and the next day Eli started his new job, and we barely skipped a beat.
God gave me so much grace those first few weeks because I was terrified like every new mom with her baby, but times 100. Emily was on all sorts of meds, her heart monitor was confusing with false alarms, and she still needed a certain number of bottles of 34-calorie fortifier. To top it off, like all newborns, she barely slept! I got to a point that I was so sleep deprived that I was literally a zombie, and I didn't know if it was day or night. I had to write down what time I gave her her medicine, if I fed her, and if she slept. In my off time, I argued with insurance companies about coverage for her RSV shots ($2000 each month that was finally covered after hours of negotiations).
By thanksgiving I was an absolute disaster. But somehow things got easier, and we all adjusted, and were always so thankful for our little miracle. I think God was working though me to help me understand how precious life is, and how much we take for granted. Emily has grown into a unique, creative, funny and caring little girl, and it all happened in a blink of an eye. Since that day she came home, one year ago today, I haven't spent more than 10 awake hours apart from her, and she still amazes me. So in today's crazy world, take some time to love one another and be amazed in God's creation!
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