Wednesday, January 18, 2012
The Birthday Boy!
We think the video is now working a little better, but the timing is still a little off....enjoy!
Here is a video that Michael and I have been working on for Edward. We can NOT believe that our little, itty, bitty baby is turning 1 tomorrow! Tomorrow will be a joyous yet difficult day of reflecting for me, as I relive all of the hospital memories. A year ago, we were told that Edward had a 50/50 chance of survival, and within his chances of survival there would mostly likely be any number of disabilities. We are so blessed that our 1 lb 12 oz miracle is now a 16 lb 11 oz curious, energetic and funny little boy. We are so grateful for this blessing and thank God for allowing us to become parents to such a special baby. We also know that we could not have survived this crazy and hectic year without our wonderful parents. Both of our parents live about 6 hours away from Charlottesville, yet they drove here countless times to sit with us in the NICU by Edward's bed, to run errands for us, to clean the house for us (Mom you are the best!), to set up Edward's nursery for us because clearly that was NOT ready, to walk the dog for us, and most importantly to cry and pray with us. Thank you so much Grammy and Pop-Pop Schuster and Grammy and Papa Johnson. Edward is one lucky baby to have such wonderful grandparents like each of you.
We would like to thank our brothers and sisters, aunts, uncles, and cousins, and grandma, who also really supported us through an incredible year. We appreciated your visits, meals, presents, and most of all, phone calls. Many of you listened to us vent, cry, and talk out our worries and concerns for Edward. Thank you for your listening ears. ( and my Edward necklace :) Also, we would like to thank all of our friends that reached out to us in many ways this past year- phone calls, text messages, emails, cards, presents, flowers, meals, books, etc. Two days after Edward was born, Michael leaned over to show me his Facebook page and all of the people who responded and sent good thoughts, messages, and prayers our way. I remember the tears streaming down my face as I was trying to read every last word. The caring thoughts and messages made us feel so incredibly loved. Last week we reread all of those messages that everyone sent. We were like 2 fools, sitting on the couch, each of us drinking a beer, and crying our eyes out as we looked at an email chain that Michael sent out to all of our ND friends at this time last year. We were so incredibly overwhelmed to hear that candles were lit in the Grotto at Notre Dame for our Edward, we just couldn't believe it! Thank you to each and everyone one of you.
We would especially like to thank the UVA NICU. We had so many wonderful nurses, doctors, and NNPs in charge of Edward's care. Mike and I tried to write down all of the names of anyone who ever took care of Edward and it was over 100 people! He received the BEST care and he has done so well because of this. We think of you all very often and we will come by the NICU again to visit after flu season! We love our UVA family. Even if Edward grows up to cheer for Notre Dame, we will encourage him to also cheer for UVA :) Thank you for giving Edward the best possible start in life.
And lastly we would like to thank Edward. This baby has taught us so many lessons already. He has taught us to trust in our faith. He has taught us to love more than we ever thought we could. And he has taught us to value each and every minute we have. Thank you Edward. I will still ground you when you are 16 and are a smart ass, but thank you. We love you.
Okay, well I have a cake to bake and I need to hold back the tears long enough to get this thing in the oven! HAPPY BIRTHDAY EDWARD!
P.S. Please sleep through the night..... thanks!
Monday, December 26, 2011
Merry Christmas
On Christmas Eve we went to the NICU to pay a visit to some of our favorite nurses. We were able to pass out Christmas cards and say hello, knowing that some people are working over the holidays and are taking care of precious little babies. They loved seeing the little guy in his Santa hat. We went home, put out cookies and milk for Santa and gave Edward a bath. He was all decked out in his Christmas pajamas.
Our first Christmas morning together was wonderful. I have to say though, Christmas with a little one is exhausting! It literally took us all day to open presents from Santa! Edward loves to take his time opening presents, ripping the wrapping paper to shreds, rolling around in it, etc. I opened the last few presents for him. Edward must have been a good boy this year, because our house is now filled with toys and books! Thank you Santa!
Edward was able to go to church for the first time yesterday. We never brought him to mass because of germs, blah, blah, blah, and Michael and I have spent the last several months taking turns watching him, while one of us goes to church. We decided that he HAS to go to Christmas mass. We were so excited to show off our little one in church like most normal parents do. He wore khaki pants, a white button down shirt with a red vest. Unfortunately there are no pictures of this outfit because he peed all over himself before we took a picture! However, he was as cute as can be, blowing bubbles the whole time and grabbing and playing with my necklace. In fact he was so loud that Michael had to take him outside for majority of the mass. I sat in the pew by myself. Haha. So much for a family experience! But, in any case, we felt......dare I say it..... normal? And we are grateful for that experience.
I asked Santa to bring Edward his two front teeth for Christmas, because this teething business is for the birds! He has been crazy and fussy with swollen gums and he has been unable to sleep/nap soundly. Finally this week, two bottom teeth appeared, and they are sharp! He is much happier and so are we :) Can you believe that Santa brought Edward a toothbrush? He is so smart and thoughtful!
Visiting Santa at the NICU. Yes, Santa does visit the little babies too..... typical Edward face....
Ugh, I don't know about this guy..........
Help me, help me, help me! I am scared..... get me off of his lap!
About to go to bed on Christmas eve..... leaving out cookies and milk for the big guy.....
Wait.... chocolate chip? GIVE ME THOSE COOKIES!
Our first Christmas morning together was wonderful. I have to say though, Christmas with a little one is exhausting! It literally took us all day to open presents from Santa! Edward loves to take his time opening presents, ripping the wrapping paper to shreds, rolling around in it, etc. I opened the last few presents for him. Edward must have been a good boy this year, because our house is now filled with toys and books! Thank you Santa!
Edward was able to go to church for the first time yesterday. We never brought him to mass because of germs, blah, blah, blah, and Michael and I have spent the last several months taking turns watching him, while one of us goes to church. We decided that he HAS to go to Christmas mass. We were so excited to show off our little one in church like most normal parents do. He wore khaki pants, a white button down shirt with a red vest. Unfortunately there are no pictures of this outfit because he peed all over himself before we took a picture! However, he was as cute as can be, blowing bubbles the whole time and grabbing and playing with my necklace. In fact he was so loud that Michael had to take him outside for majority of the mass. I sat in the pew by myself. Haha. So much for a family experience! But, in any case, we felt......dare I say it..... normal? And we are grateful for that experience.
I asked Santa to bring Edward his two front teeth for Christmas, because this teething business is for the birds! He has been crazy and fussy with swollen gums and he has been unable to sleep/nap soundly. Finally this week, two bottom teeth appeared, and they are sharp! He is much happier and so are we :) Can you believe that Santa brought Edward a toothbrush? He is so smart and thoughtful!
Monday, December 19, 2011
Ours goes to eleven....
Eleven months ago today, Katie and I welcomed all 28 ounces of little Edward Michael. Today, two hundred and twenty eight ounces later, he tips the scales at exactly 16 pounds. And he is a hot mess....but for all the right reasons. He loves bath time and splashes the water all around, shoving his soapy hand into his mouth. He blows bubbles of saliva in our face all day long. He has (as Katie likes to say) 'stinky farts.' Today, he threw his first legitimate temper tantrum - crying, arching his back, snot, tears - the whole nine yards (which of course resolved within 11 seconds of picking him up). He pulls at hair, necklaces, eyeglasses and earrings with no abandon. Today, as an 11-month birthday present to us, he peed all over his play mat. These 'joys' of parenthood are, in fact, true joys. We certainly lose perspective at times and forget how lucky we are, but Edward has continued to bring us such happiness - temper tantrums and all.
Overall, Edward is doing fantastic. He has had some ups and downs here and there, but his past few months have been marked with a significant amount of progress. For example, he still fights his bottles a few times a week, but he loves to eat food! For example, over the past two months, he has tried butternut squash, peas, carrots, zucchini, avocado, green beans, apples, pears, bananas, blueberries, sweet potatoes, cheese, mashed potatoes, yogurt....the list goes on. He is not too fond of green beans and pears (a little too sweet), but he will devour his yogurt, cheese + avocado. He has also started to develop his pincer grasp and is now able to pick up a piece of cheese or a puff and get it relatively close to his mouth before losing control and dropping it on the floor for Winston to clean up. He also loves to sit in his booster seat and 'bang' his toys all around. He then glances at one of us, only to drop said toy right on the ground, waiting for us to pick it up. This cycles repeats itself ad infinitum much to his enjoyment.
Physically, he has also continued to make strides. He continues to receive physical therapy every two weeks. The physical therapist comes to our house and spends an hour with Katie + Edward, first assessing Edward's recent progress and current strengths. She then develops a new set of exercises to teach Katie as well as goals to achieve over the upcoming two weeks. With of all of this, Edward is now able to easily roll over front-to-back and back-to-front. He is also able to get up on 'all fours' and rock a little bit. He has yet to crawl, but he is starting to lurch forward to try to grab a toy. He is also sitting up quite well. He still loses his balance and 'face-plants' (very gently, of course) onto his play mat. But to be honest, he is plenty tough - he takes the bumps and bruises of physical development while hardly shedding a tear. I think the tubes, IVs, and poking + prodding in the NICU toughened him up. Certainly, for 11 months, he is behind from a physical development perspective, but if you adjust for his age, he is pretty much spot on. We are hopeful that the next month or two will lead to crawling and that maybe by 16-18 months, we will be walking!
Thank you all for your continued thoughts and prayers. We are sorry for not updating the blog more often. Katie continues to nag, ahem, remind me to update it more often, but it turns out parenthood is pretty time consuming. Furthermore, when Edward was in the hospital, due to the nature of my job, I actually had a small amount of insight into his care, felt comfortable navigating the hospital setting and subsequently was able to translate that into frequent posts. In contrast, with fatherhood, I am pretty much clueless and insight is one of the last words I would use to describe my current faculties. But at the end of the day, it has been pretty fun and very rewarding figuring all of this out with Katie on the fly, with advice from our parents, brothers + sisters, family and friends along the way. As many before us have asked, what did we do before we had a baby? .....I honestly don't remember.....
Overall, Edward is doing fantastic. He has had some ups and downs here and there, but his past few months have been marked with a significant amount of progress. For example, he still fights his bottles a few times a week, but he loves to eat food! For example, over the past two months, he has tried butternut squash, peas, carrots, zucchini, avocado, green beans, apples, pears, bananas, blueberries, sweet potatoes, cheese, mashed potatoes, yogurt....the list goes on. He is not too fond of green beans and pears (a little too sweet), but he will devour his yogurt, cheese + avocado. He has also started to develop his pincer grasp and is now able to pick up a piece of cheese or a puff and get it relatively close to his mouth before losing control and dropping it on the floor for Winston to clean up. He also loves to sit in his booster seat and 'bang' his toys all around. He then glances at one of us, only to drop said toy right on the ground, waiting for us to pick it up. This cycles repeats itself ad infinitum much to his enjoyment.
Physically, he has also continued to make strides. He continues to receive physical therapy every two weeks. The physical therapist comes to our house and spends an hour with Katie + Edward, first assessing Edward's recent progress and current strengths. She then develops a new set of exercises to teach Katie as well as goals to achieve over the upcoming two weeks. With of all of this, Edward is now able to easily roll over front-to-back and back-to-front. He is also able to get up on 'all fours' and rock a little bit. He has yet to crawl, but he is starting to lurch forward to try to grab a toy. He is also sitting up quite well. He still loses his balance and 'face-plants' (very gently, of course) onto his play mat. But to be honest, he is plenty tough - he takes the bumps and bruises of physical development while hardly shedding a tear. I think the tubes, IVs, and poking + prodding in the NICU toughened him up. Certainly, for 11 months, he is behind from a physical development perspective, but if you adjust for his age, he is pretty much spot on. We are hopeful that the next month or two will lead to crawling and that maybe by 16-18 months, we will be walking!
Thank you all for your continued thoughts and prayers. We are sorry for not updating the blog more often. Katie continues to nag, ahem, remind me to update it more often, but it turns out parenthood is pretty time consuming. Furthermore, when Edward was in the hospital, due to the nature of my job, I actually had a small amount of insight into his care, felt comfortable navigating the hospital setting and subsequently was able to translate that into frequent posts. In contrast, with fatherhood, I am pretty much clueless and insight is one of the last words I would use to describe my current faculties. But at the end of the day, it has been pretty fun and very rewarding figuring all of this out with Katie on the fly, with advice from our parents, brothers + sisters, family and friends along the way. As many before us have asked, what did we do before we had a baby? .....I honestly don't remember.....
Friday, December 2, 2011
November News
Just wanted to write a quick update. We had a great Thanksgiving with a few friends in Charlottesville. Edward ate up some mashed potatoes and turkey baby food (smells disgusting, but he liked it!) He managed to spill a beer by knocking it out of my hand.... twice! He is now getting into EVERYTHING! Whatever we have in our hands, he is grabbing at or trying to take it. A glass of water, our cell phones, food, anything! When he is playing with his toys while sitting, he practically launches himself forward trying to get something out of reach. He is doing a great job sitting up and playing. We are very close to letting him sit alone, I think. And he is rolling back and forth all day and starting to shimmy all about on his play mat. The last time we weighed him he was 15 lbs 4 ounces. We are very blessed that he is gaining, growing, and enjoying eating, as we know that eating is a huge obstacle for many preemies. We are praying and hoping this progress continues.
Basically, the month of November can be summed up by three words: leaves, bubbles, and baths! While taking a walk one day, Michael and I were talking (kind of ignoring the baby) when Edward erupted into a full out belly jiggling laugh. Mike and I stopped walking to enjoy what we heard, but he stopped laughing. We began walking again when he started giggling again! We realized that he loved hearing the crunching of the leaves under our feet. He thought it was so funny, so we tried to talk a walk everyday. The day we tried to capture it on video, he didn't laugh as much! Of course! Next, Edward is blowing bubbles like a crazy fool! All day everyday, and even at night! We hear him on the monitor talking to himself and blowing bubbles in the middle of the night. Sometimes when we are feeding him a bottle, he will stop just to blow bubbles and dribble milk all down his face. The drool is nonstop. Lastly, Edward loves his bath. I know I have said this before, but I think he would like to stay in the tub for hours! He kicks, splashes, and squeals like a maniac! I tried to capture everything on video, but it doesn't do it justice. Enjoy a few clips from our daily lives!
Basically, the month of November can be summed up by three words: leaves, bubbles, and baths! While taking a walk one day, Michael and I were talking (kind of ignoring the baby) when Edward erupted into a full out belly jiggling laugh. Mike and I stopped walking to enjoy what we heard, but he stopped laughing. We began walking again when he started giggling again! We realized that he loved hearing the crunching of the leaves under our feet. He thought it was so funny, so we tried to talk a walk everyday. The day we tried to capture it on video, he didn't laugh as much! Of course! Next, Edward is blowing bubbles like a crazy fool! All day everyday, and even at night! We hear him on the monitor talking to himself and blowing bubbles in the middle of the night. Sometimes when we are feeding him a bottle, he will stop just to blow bubbles and dribble milk all down his face. The drool is nonstop. Lastly, Edward loves his bath. I know I have said this before, but I think he would like to stay in the tub for hours! He kicks, splashes, and squeals like a maniac! I tried to capture everything on video, but it doesn't do it justice. Enjoy a few clips from our daily lives!
Tuesday, November 8, 2011
RSV and Why We Are Staying Away From Everybody......
I just wanted to write a little bit about RSV to explain why we are going to hibernate with Eddie for the next few months. I feel like I already have cabin fever and I might go a little crazy this winter, but we feel like we have to be extra careful with him. I found some information on the NIH's website for everyone to read. Michael and I both had preemie nieces before Eddie was born, and we still didn't totally understand what RSV was, so we are just providing some information in case you think we are crazy parents! Well, we ARE crazy parents regardless, haha, but..... just read it!!! I highlighted some important points about RSV and preemie babies. His pediatrician's office just called and his RSV synagis shots are finally here and he is scheduled to receive his 1st shot Monday, the 14th! Woohoo! Luckily, our insurance will cover 5 shots, and so he will receive one shot every month through March. Without insurance, the synagis shot costs about $1,500-2,000 per shot, so we are incredibly grateful that we are not paying out of pocket! I also just want to say, please, please, PLEASE don't be offended if we do not invite you over to see him. Please, please, PLEASE, do not be mad at us if we ask you to NOT bring your own little ones around him. And please, please, PLEASE do not think we are brushing you off and do not want to hang out with you anymore.... we do, I mean we REALLY do! We would love to hang out with everyone, show him off, let him crawl around with other babies, drool on each other, etc. AND believe ME, Michael and I (especially me) would love some more adult interaction! We just know that this is temporary, and we have to keep him as healthy as possible during this flu season. Next year, we will be throwing him in the mud......
Love Always,
Katie, Michael, and our little banana!
Respiratory syncytial virus (RSV)
RSV; Palivizumab; Respiratory syncytial virus immune globulin
Last reviewed: January 24, 2011.
Respiratory syncytial virus (RSV) is a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups.
You can catch RSV if:
The following increase the risk for RSV:
Older children usually have only mild, cold-like symptoms, such as cough, stuffy nose, or low-grade fever.
Mild infections go away without treatment.
The drug Synagis (palivizumab) is approved for the prevention of RSV disease in children younger than 24 months who are at high risk for serious RSV disease. Ask your doctor if your child should receive this medicine.
Causes, incidence, and risk factors
RSV is the most common germ that causes lung and airway infections in infants and young children. Most infants have had this infection by age 2. Outbreaks of RSV infections most often begin in the fall and run into the spring.
The infection can occur in people of all ages. The virus spreads through tiny droplets that go into the air when a sick person blows their nose, coughs, or sneezes.You can catch RSV if:
- A person with RSV sneezes, coughs, or blows their nose near you
- You touch, kiss, or shake hands with someone who is infected by the virus
- You touch your nose, eyes, or mouth after you have touched something contamined by the virus, such as a toy or doorknob.
The following increase the risk for RSV:
- Attending day care
- Being near tobacco smoke
- Having school-aged brothers or sisters
- Living in crowded conditions
Symptoms
Symptoms vary and differ with age. They usually appear 4 - 6 days after coming in contact with the virus.Older children usually have only mild, cold-like symptoms, such as cough, stuffy nose, or low-grade fever.
Infants under age 1 may have more severe symptoms and often have the most trouble breathing.
In general, RSV symptoms include:
- Bluish skin color due to a lack of oxygen (cyanosis)
- Breathing difficulty or labored breathing
- Cough
- Croupy cough (often described as a "seal bark" cough)
- Fever
- Nasal flaring
- Rapid breathing (tachypnea)
- Shortness of breath
- Stuffy nose
- Wheezing
Signs and tests
Many hospitals and clinics can rapidly test for RSV using a sample of fluid taken from the nose with a cotton swab.Treatment
Antibiotics do not treat RSV.Mild infections go away without treatment.
Infants and children with a severe RSV infection may be admitted to the hospital . Treatment will include:
- Oxygen
- Moist (humidified) air
- Fluids through a vein (by IV)
A breathing machine (ventilator) may be needed.
Expectations (prognosis)
Rarely, RSV infection can cause death in infants. However, this is unlikely if the child is seen by a health care provider in the early stages of the disease .More severe RSV disease may occur in the following infants:
- Premature infants
- Infants with chronic lung disease
- Infants whose immune system does not work well
- Infants with certain forms of heart disease
Complications
In young children, RSV can cause:
- Bronchiolitis
- Croup
- Ear infections
- Lung failure
- Pneumonia
Calling your health care provider
Call your health care provider if breathing difficulties or other symptoms of this disorder appear. Any breathing difficulties in an infant are an emergency. Seek medical attention right away.Prevention
A simple way to help prevent RSV infection is to wash your hands often, especially before touching your baby. It is important to make certain that other people, especially caregivers, take steps to avoid giving RSV to your baby.The following simple steps can help protect your baby from getting sick:
- Insist that others wash their hands with warm water and soap before touching your baby.
- Have others avoid contact with the baby if they have a cold or fever. If necessary, have them wear a mask.
- Be aware that kissing the baby can spread RSV infection.
- Try to keep young children away from your baby. RSV is very common among young children and easily spreads from child to child.
- Do not smoke inside your house, car, or anywhere near your baby. Exposure to tobacco smoke increases the risk of RSV illness.
The drug Synagis (palivizumab) is approved for the prevention of RSV disease in children younger than 24 months who are at high risk for serious RSV disease. Ask your doctor if your child should receive this medicine.
References
- Committee on Infectious Diseases. Modified recommendations for use of palivizumab for prevention of respiratory syncytial virus infections. Pediatrics. 2009;124:1694-1701. [PubMed: 19736258]
- Respiratory Syncytial Virus. In: Mandell GL, Bennett JE, Dolin R, eds. Principles and Practice of Infectious Diseases. 7th ed. Philadelphia, Pa: Elsevier Churchill Livingstone; 2009:chap158.
- Cincinnati Children's Hospital Medical Center. Evidence based clinical practice guideline for medical management of bronchiolitis in infants less than 1 year of age presenting with a first time episode. Cincinnati (OH): Cincinnati Children's Hospital Medical Center; 2006 May. 13 p.
- Mcintosh K. Respiratory syncytial virus. In: Kliegman RM, Behrman RE, Jenson HB, Stanton BF. Nelson Textbook of Pediatrics. 18th ed. Philadelphia, Pa: Saunders Elsevier;2007:chap 257.
- Review Date: 1/24/2011.Reviewed by: Neil K. Kaneshiro, MD, MHA, Clinical Assistant Professor of Pediatrics, University of Washington School of Medicine. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
Friday, October 7, 2011
Go Phillies!
Monday, October 3, 2011
Sophie
Soooooooo while I was shopping two months ago I saw this little giraffe sitting on a shelf in Babies"R"Us. It struck me that I have seen this silly little toy in millions of pictures with little babies on Facebook, yes Facebook. No one (including me) is shy when it comes to publishing adorable baby pictures online, especially when you think EVERY picture of your little one is the cutest! I realized that I have seen "Sophie" the famous giraffe in many baby pictures this year. I thought, why not? Edward needs to have Sophie the giraffe too! When the cashier scanned Sophie, I learned that she was $22! For this silly little rubber giraffe? Are you kidding me? Well, okay then..... I'll take it! As I drove home I thought, Edward, you better LOVE Sophie!
To my dismay, Edward barely looked at Sophie the first month. I tried to put Sophie in his hands and he would simply drop her. I would stand Sophie up right in front of him, and he would look away and reach for another toy. I was pretty disappointed, until about three weeks ago he started to bite her foot. Hooray, I thought! FINALLY! And he still has not put her down! Sophie can keep Edward occupied for hours! And she helps us distract him when we have to give him his awful tasting medicines. And she is helping his little gums feel better because he is teething! Sophie, you were expensive, but we love you!
To my dismay, Edward barely looked at Sophie the first month. I tried to put Sophie in his hands and he would simply drop her. I would stand Sophie up right in front of him, and he would look away and reach for another toy. I was pretty disappointed, until about three weeks ago he started to bite her foot. Hooray, I thought! FINALLY! And he still has not put her down! Sophie can keep Edward occupied for hours! And she helps us distract him when we have to give him his awful tasting medicines. And she is helping his little gums feel better because he is teething! Sophie, you were expensive, but we love you!
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