11 Months

Today, it has been 11 months since Drew was born. In 30 more days, it will be one year. I can hardly believe that much time has gone by...and we have been through so much. Maybe that's why it seems the past 11 months have flown. Although, the older I get, the more it seems like life is just flying past me. I am sure that will become even more apparent now that I have a child. Since we'll be busy all day on Drew's actual birthday, I thought I would take today to post about the day he was born. I will use his birthday to post about my thoughts on him turning one. (and my tears, I am sure...)

Thursday, May 29, 2008 -

Dr. Appt 9:00am
*We got there a little early and had to wait around, but I didn't mind because finally I was seeing my beloved Dr. Garcia. I had seen all the other Doctors and had only seen Dr. G twice. I missed him (seriously, both my friend and i would adopt him if we could). First was the dreaded scale. I had a real problem with water weight gain during the pregnancy. I looked like a beached whale...honestly. This week, the scale was particularly cruel, stating I had gained 7lbs. I was very upset and the NP told me that the only way that happens in one week is through water. Next up, pee in a cup. I had gotten pretty adept at doing this, despite my ginormous belly and balance issues. Then, Dr. G did my blood pressure himself, as I had protein in my urine...BP was elevated. He looked at me and said, "this is it, you're done." And he proceeded to manually dilate me and strip my membranes. That was pleasant. I immediately starting cramping, and some other things, and left to go tell work I was done.
10:00pm
After a day of long walks, 3 loads of laundry and cleaning like a mad woman (including bending over), I started to bleed a bit. I had been cramping all day, but the cramps seemed to be more purposeful now, so I called the on call number and spoke with Dr. Salah. She told me to drink some water, take a warm shower and lay down, try to sleep. She told me I would know if it was labor. Bill and I both took showers, he packed his bag (finally!) and went to bed.

Friday, May 30, 2008 -

3:00am
Bathroom! Ah, the bathroom, my best friend during the latter months of my pregnancy. I spent a lot of time in there. So, I waddled my big behind down our stairs to the bathroom and back up the stairs again to bed. I could not get comfortable and it took me about 20 mins to realize I was contracting. Now, this had happened before in the middle of the night...and badly too...so I didn't think anything of it at first. Then, I started timing them.
5:00am
Still up timing contractions, as they are all over the place...6 mins, 8 mins, 10 mins, 4mins, etc... I started to think I should tell Bill what I was doing when I had the biggest contraction yet and felt something happen. I ran (literally) downstairs to the bathroom where I proceeded to have the most interesting experience up until that point in my pregnancy. My water broke, I lost my mucous plug and had true bloody show...all at the same time. I freaked out a bit and yelled for Bill. Somehow I had managed to not wake him up in my panic to get out of bed...and Maggie was also still sound asleep.
5:20am
At Beaumont...I get signed in and go to triage. After about an hour or so of all the tests, they can't determine that my water had broke (believe me, it had), so they send me to walk because i am only at a 2 and my contractions are all over the place. So, I walk for 2 hrs and feel gross as fluid continues to pour out of me. When we get back, the staff had changed over and no one knew who we were. Finally, the NP checked me and stated that she believed my water had broken and the ferning test confirmed it. So, I was admitted.
11:00am
Admitted, and Pitocin begins
This is where time becomes hazy...sometime between now and 2:45, I get my epidural, have the internal monitor placed on (in) Drew's head, and dilate fully
2:45 - 5:45pm
PUSHING ... I am dead tired at the end of it, crying and delirious. Dr. Ohm will not intervene. Finally, Dr. Garcia comes on call and checks me. Drew won't come past 0 on his own (basically he won't come through my pelvis), so he determines this is it and I need help. He wants to use forceps because, as he explains to me, they're safer for the baby...but more dangerous for me. At this point, I don't care...I just want this nightmare of pushing without results to end.
5:45 - 6:02pm
I get the bolus of my epidural and become completely numb, which is a welcome change from the horrendous pain of not being able to push Drew out. I am still crying and apologizing for my "ineptitude." The LDR nurse and Bill assure me I have not failed. The anesthesiologist is literally my biggest cheerleader as I push, not feeling a thing. Finally, Drew is out (it seemed like a dream because I literally felt NOTHING), Bill announces his gender to me, and he is on my belly. He isn't crying really, but looking around like "what the hell is this?" This is the first time I've seen his "Grumpelstiltskin" face. I remember thinking "where's the goop?" They had toweled him off for me. He was warm, a little ashy, and BEAUTIFUL. I cried. His cord was really short, so Bill cut it and they took him from me to the warmer.

Eventually, he went to the NICU for rapid breathing, and I was taken to my Post Partum room. I was upset because it was about 2 hrs before he was returned to me and my delivery had been so traumatic, I was not able to sit up and visit him. Finally they brought him back to me...then, I had my own issues. After my bleeding was under control, I was told to sleep and that they would bring him to me in the morning. I welcomed this at the time, even though I missed him, because I had been up for 22 hrs. I called for him at 6am and have been with him ever since!

Love you my little man!!!

Pics

All of us after Chris' Confirmation Mass...his Confirmation name is Sebastian.

Drew 4 wks Post Op

Drew on the move

Drew on the Move, Confirmation, and the Blood Drive

Drew is officially all over the place! He's still going backwards, but he's moving from room to room now. Lord help us! This is the biggest impact I've seen the surgery make. He is acting like I would expect a healthy nearly 11 month old to act and before, he would make two movements, then give up. And seem winded. Thank God for skilled surgeons.

We've had a busy weekend! Yesterday (Saturday) was my nephew, Chris' Confirmation. Bill was his Sponsor, which is pretty cool on a couple of levels. One, this is my biological nephew, not Bill's and two, he is my Godson. Bill was pretty happy about being selected, as he's never been chosen for such an honor before, and it's a mystery to me how that's happened. We all got to the Church about 45 mins before Mass started, then Mass lasted 2 hrs. I think Drew was pretty much done with everything by that point, but he was still in a good mood. I am so blessed to have a wonderful family who helped me out, as Bill sat with Chris. Even my 18 and 15 year old nephews, Matt and Sean, helped too. I am going to include pics in a separate post.

Today was the blood drive at my Church. As per the norm, turnout was pretty pathetic. I am hoping to meet with the organizers at our Church to hopefully help increase turnout by putting a real face to the "who you are helping" picture. Bill is going to do the same at his work. I had not been able to give blood in quite some time, my iron levels were always trending toward anemia, but today I was able to! YAY! I must say, it felt good to pay it forward, as I have been witness to someone benefiting from a donation. Also, be on the lookout for posts about the 5k run our chapter is planning to do. I have a few more things to tweak before we're official and then, we're going to start fundraising for the event!

I hope everyone had a wonderful weekend and the weather has been gorgeous where you are!

Screening Babies

I saw this in my Saving Little Hearts e-letter and then, on my friend's Carepage. I think it's very useful information...

Screening Babies for Broken Hearts (The New York Times)
By Darshak Sanghavi, M.D.
http://z11.typepad.com/savinglittlehearts/

When his own children were born, pediatric cardiologist Darshak Sanghavi asked for a simple screening test for heart defects. But the test isn’t widely used.

In the middle of one night in August, a seemingly healthy 1-week-old infant named Ryan Olson suddenly began gasping for breath at home in Massachusetts, and his frantic parents rushed him to the hospital. There, emergency room doctors noted the critically ill baby had bluish feet and — even more worrisome — no pulse in his lower body. That almost certainly meant the boy had a “coarctation,” or blockage of his aorta, which is the key pipeline supplying oxygen-rich blood to the body. As the on-call pediatric cardiologist, I was urgently called in to help out.

Ryan’s story isn’t that unusual, and I’ve seen half a dozen similar children recently. A few months ago, the Centers for Disease Control and Prevention reported that the infant mortality rate in the United States was 6.71 per 1,000 live births, which was widely reported as being higher than other developed countries. Birth defects, especially involving the heart, are an important cause of these deaths. In October, researchers studying infant deaths over the past 16 years in California reported that hundreds of American infants like my patient probably die each year due to missed — but treatable — congenital heart defects.

How can we identify these normal-appearing newborns before they leave the hospital, become critically ill like my patient and perhaps die?

Traditionally, prospective mothers have prenatal sonograms to look for birth defects. But the quality of these scans varies widely, depending on the skill of the technician and the supervising doctor. In addition, current guidelines supported by the American College of Obstetricians and Gynecologists mandate only a limited “four-chamber view” of the heart. As a result, a 1998 study from Southwestern Medical School in Texas reported that only one-quarter of major heart defects are identified prenatally.

Unfortunately, when heart defects are missed by prenatal ultrasounds, pediatricians also have a hard time telling if critical cardiac problems are present. Normally, doctors examining newborns suspect heart defects if they hear a loud rushing noise (a “murmur”) with a stethoscope, notice the child has a bluish color, or lacks a pulse in the lower extremities. But in 1999, British researchers found that half of serious heart defects were missed by routine exams after birth. If sent home, these newborns become seriously ill.

Folic acid can prevent up to 50 percent of many heart defects, but only if taken for about two months prior to conception. Because most pregnancies are unplanned, the C.D.C. recommends that all menstruating women should take a daily multivitamin.

What’s needed is a large-scale formal screening program, similar to mammography or colonoscopy to identify at-risk individuals. We already do this to identify newborns with certain hidden but deadly conditions. For example, most state health departments currently analyze a few blood drops taken from a baby’s foot and check for certain genetic problems like phenylketonuria (PKU) and galactosemia, which are treated with special diets to prevent developmental problems.

Recently, researchers have identified a promising new method called pulse oximetry to screen all babies for heart defects. Taped briefly to a newborn’s foot, a small sensor painlessly beams red light through the foot and measures how much oxygen is in the blood. It takes about a minute. (Picture E.T. the extra-terrestrial’s finger lighting up, and you get the idea - this is so true) If the screening test is abnormal, doctors perform a confirmatory ultrasound of the heart. Last year, Norwegian doctors published one of the largest clinical trials of this strategy, and checked half of all babies born in the country.

The results were impressive. Within a few hours of birth, pulse oximetry detected three-quarters of critical heart defects that had been previously missed. For every 2,000 newborns screened with the toe light, roughly one with a critical heart defect might have been prevented from going home. The cost-benefit ratio compares favorably to current practices of newborn screening for PKU and hypothyroidism. In January, Swedish doctors published an even more methodical study of almost 40,000 newborns, and showed that oximetry entirely eliminated death from missed critical cardiac defects.

Of course, as with any screening, the technique may miss some defects and also involves some unnecessary, though benign, testing of normal children. But these false positive rates were low (only about one in 1,000 in the Swedish study) and triggered only about two instances of extra, noninvasive testing for every serious heart defect that was picked up. Many parents and doctors caring for children with critical heart defects subscribe to some variant of the “1 percent doctrine.” If there is even a small chance of catastrophe — like the sudden death of a newborn — they feel justified to push for preemptive action, especially when it’s a harmless and inexpensive screening test.

While the screening test is not done routinely in the United States, some hospitals have adopted it, mostly in Texas and Florida, where some small trials have been conducted. But parents can ask doctors to screen their babies for heart defects using pulse oximetry. It’s essentially free since it needs no specialized equipment other than the oximeter, which is present in every hospital already. A specialized doctor isn’t needed; the test is quite simple, and a nurse can do it if the pediatrician orders it anytime after birth, but before discharge from the hospital. Hopefully they won’t mind doing it. Personally, I do think parents should request it. I did for my kids.
Fortunately, Ryan, the baby I was urgently called to treat, had his heart surgery last summer and is doing well now. I see him every few months in clinic.

Dr. Darshak Sanghavi is the chief of pediatric cardiology and assistant professor of pediatrics at the University of Massachusetts Medical School. He is the author of “A Map of the Child: A Pediatrician’s Tour of the Body,” and his Web site is www.darshaksanghavi.com.

God's Plan

I have been thinking a lot today about God's plan. I want to be clear, I firmly believe that God has a plan for all of us and that we are not really meant to understand what that plan is until we walk our journies and experience the plan in action. And even then, I think sometimes we're left wondering what the plan is and trusting in Him. I believe there is a purpose to everything that happens, even the bad. But, because I am human, I still sometimes question the purpose, "the why," when bad things happen.

I have had Aiden on the brain since I found out about his passing yesterday. I can't get his sweet face out of my head. He is just as precious to his Mommy as Drew is to me...and it begs the question, "why him?" Why did God choose to take him home so young? Why are his Mommy and Daddy experiencing such tremendous heartache and grief right now? How is it that I was so blessed to have Drew come through everything so well? How does God decide which babies to leave on earth and which to call home? I held Drew a little bit closer to me today and said some extra prayers of thanksgiving for his life. And I sat in my fear of him leaving us for a bit before moving on from it, as it is not productive.

As I wrote in my previous post, I am more committed than ever to this fight. We need to get awareness out there, we need to get better screenings, and we need to find cures...or at least better treatments for the more serious CHDs...ones that guarantee a more favorable outcome. I've said it before and I'll say it again, every child is someone else's Drew and every child deserves a long, healthy life. They deserve to experience all that life has to offer them. We need to raise hope for a bright future, along with raising awareness.

For those of you on FB, I have posted Drew's open heart surgery and recovery pictures for 2 reasons:

1) It is a big part of his story

and

2) It is reality

There isn't any shying away from it, sticking my head in the sand, or forgetting about things. There is no reason to hide anything from anybody. I didn't post them to be in anyone's face, I posted them to share Drew's story, his journey. There is no way you can walk this road, see what we have seen, and not be moved. Moved by the strength of these kids, the strength of their parents. Moved by their resiliency and zest for life. Moved by the level of care that they receive and the frustration the Doctors and Nurses have when things go wrong. Moved by how such a journey can bring you to people you've never met in person, or haven't known for long, yet you feel as if they are your biggest source of support...because they have been there. They understand. I know this is all part of God's plan for me...and I pray I can be part of the good in God's plan for others.

My Motivation

I think some people might wonder why I am getting so involved in raising awareness about CHD. After all, my son is recovering well and there's no reason to think he will ever need any further cardiac intervention. I do this for Drew, yes, and for my future children and grandchildren, of course. But I do this for the countless numbers of children who will never see their first birthdays, never graduate from high school, never hold their own precious baby in their arms. I do this for the countless numbers of parents who have to bury their sweet angels and figure out how to go on with life after such unimaginable heartache. I do this for everyone I will never meet and for all those I have been blessed to meet along this journey, and will be blessed to meet in the weeks, months, and years to come. And today, I am especially dedicated to the cause because of a CHD angel called Aiden. Aiden fought with tremendous courage in the face of mounting obstacles to come back to his Mommy and Daddy...and unfortunately, it was too much for his little body and he lost his battle. With his Mommy holding him closely to her, he went home to be with God on April 17th.

Educational Tidbit...here are the CHDs that Aiden had:

Pulmonary atresia (PA) is a complicated congenital (present at birth) defect that occurs when the pulmonary valve, located between the right ventricle and pulmonary artery, is not formed properly. The pulmonary valve has three leaflets that function like a one-way door, allowing blood to flow forward into the pulmonary artery, but not backward into the right ventricle. With pulmonary atresia, problems with valve development prevent the leaflets from opening, therefore, blood cannot flow forward from the right ventricle to the lungs. Before birth, while the fetus is developing, this is not a threat to life, because the placenta provides oxygen for the baby, and the lungs are not functional. Blood entering the right side of the fetal heart passes through an opening called the foramen ovale, which allows oxygen-rich (red) blood to pass through to the left side of the heart and proceed to the body. In some cases, there may be a second opening, this time in the ventricular wall, that allows blood in the right ventricle a way out. This opening is called a ventricular septal defect (VSD). If there is no VSD, the right ventricle receives little blood flow before birth and does not develop fully. After birth, the placenta no longer provides oxygen for the newborn, the lungs must provide it. With no pulmonary valve opening present, however, blood must find another route to reach the lungs and receive oxygen. The foramen ovale normally shuts at birth, but may stay open in this situation, allowing oxygen-poor (blue) blood to pass from the right atrium to the left atrium. From there, it goes to the left ventricle, out the aorta, to the body. This situation cannot support life, since oxygen-poor (blue) blood cannot meet the body's demands. Newborns also have a connection between the aorta and the pulmonary artery, called the ductus arteriosus, that allows some of the oxygen-poor (blue) blood to pass into the lungs. Unfortunately, this ductus arteriosus normally closes within a few hours or days after birth. Because of the low amount of oxygen provided to the body, pulmonary atresia is a heart problem that is labeled "blue-baby syndrome." Pulmonary atresia occurs in about one out of every 10,000 live births. Pulmonary atresia occurs due to the improper development of the heart during the first eight weeks of fetal growth. Some congenital heart defects may have a genetic link, either occurring due to a defect in a gene, a chromosome abnormality or environmental exposure, causing heart problems to occur more often in certain families. Most of the time, this heart defect occurs sporadically (by chance), with no clear reason for its development.

Tetralogy of Fallot occurs when the right side of the heart does not develop properly while a baby is in the mother's womb. A French physician, Etienne Fallot first described it, in 1888. The cause of the problem is not understood. The parts of the heart affected are the pulmonary valve, right ventricle and the ventricular septum. It is the most common form of cyanotic congenital heart disease and is slightly more common in males. It affects one out of every 1000 babies born with congenital heart disease. This heart problem is known to be associated with other congenital problems including Goldenhar syndrome, velo-cardio-facial syndrome, and DiGeorge syndrome. In tetralogy of Fallot, the area of the right ventricle that leads to the pulmonary artery is narrow . In addition, the pulmonary valve itself is often small causing further obstruction of blood flow to the lungs. These areas of narrowing make the right ventricle work harder to get blood past the blockage and results in thickening of the muscle of the right ventricle. This thickening of the muscle is called right ventricular hypertrophy. Another part of this heart defect is a hole in the wall of the heart (called the septum) that separates the right and left ventricle. This hole, called a ventricular septal defect, allows blue blood from the thick, narrow, high-pressure right ventricle to cross over to the lower pressure left ventricle where it mixes with red blood. The mixing of red blood with blue blood before the blood is sent out to the body is what causes the baby to appear blue. This blue color which is seen in the lips and under the fingernails is called cyanosis. The degree of cyanosis is dependent on the severity of the narrowing in the right ventricle. The fourth part of the defect as originally described by Dr. Fallot is the altered position of the aorta called aortic override.

Both are extremely serious conditions. I fight on in his name.

Katie's Teacher

This post is specifically for Katie's teacher...if and when you check this blog, if you would, please send me a post. I would love to get in touch with you to discuss your child's CHD and offer resources and support to you and your family. I know how scary all of this can be...

I also want you to know about an awesome support board for CHD Moms:

http://community.babycenter.com

Search for Babies and Children with Heart Problems.

I am praying for you and your precious little one!

Petition for Global Media Awareness of CHD

Please visit this site:

http://www.gopetition.com/petitions/media-awareness-for-chd.html


And sign this petition:

Media Awareness for CHD ( Congenital Heart Defects )

Background (Preamble):

*Congenital heart defects are America's #1 birth defect.
*Nearly one of every 85 babies is born with a CHD in the US.
*Congenital heart defects are the Number 1 cause of birth defect related deaths.
*This year almost 40,000 babies will be born with a congenital heart defect in the US.
*4,000 of them will not live to see their first birthday.
*91,000 life years are lost each year in this country due to congenital heart defects.
*The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year. *Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded. Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
*Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
*More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
*There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.
*In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
*Statistics today show that due to misdiagnosis, lack of knowledge and awareness, & complications of surgery…about 51% of deaths caused by CHD are children under the age of 1 year.
*Early diagnosis is the key to survival!
*For nearly 40 years, newborn screening programs have provided an important public health service by identifying newborns with metabolic, hematologic and endocrine disorders as well as hearing loss. But did you know there is also a test that could identify a congenital heart defect immediately? This painless, non-invasive test is an echocardiogram and it could dramatically increase the survival rate for children born with CHD.

Due to these alarming facts, we the undersigned urge the Media to start helping in raising Awareness whether it will be my magazine and newspaper articles, books, info shows and commercials. Thank you so much for taking the time to read this petition and care so much to sign it. It it truly being appreciated.

WE NEED TO MAKE CHILDRENS' HEALTH ISSUES OUR PRIORITY !

If you would like to learn more about CHD, please visit the following great
pages :

http://www.chloeduyckmemorial.com/
http://www.hope4tinyhearts.com/
http://www.itsmyheart.org/
http://www.tchin.org/
http://www.carepages.com/
http://www.savinglittlehearts.org/
http://www.childrensheartfoundation.org/
http://www.babyheart.org/
http://www.congenitalheartdefects.com/
http://www.chdinfo.com/
http://www.chdfamilies.org/
http://www.societyforchda.com/
http://www.chdawareness.org/
http://www.kentuckianalefthearts.com/
http://www.childrensheartlink.org/
http://www.thechdquilt.homestead.com/
http://www.childrenheartinstitute.org/
http://www.heartsofhopemi.org/
http://www.littlehearts.org/
http://www.riheartgroup.com/
http://www.roccosheart.org/
http://www.media-ministry.org/chd/
http://www.angelinas-friends.com/
http://www.congenital-heart-defects.co.uk/

God bless you :)*Sandra Kay,- Founder of "Matters of the Heart", and "Angelina's -Warriors of CHD Awareness"

Petition:

Due to these alarming facts listed above, we the undersigned urge the Media to start helping in raising Awareness about CHD. We need to educate the public and demand mandatory heart screenings for all babies in utero!Media Awareness should come in all ways, whether it will be by radio, magazine and newspaper articles, books, movies, info shows and commercials. More ATTENTION and AWARENESS has to be given to CHD by the Media NOW !We need to step in and step up to the plate for the health and future of our little ones.

Thank you very much !

Music!

You may have noticed, if your speakers are turned on, that we now have music on the site! This is a sampling of songs that make me think of Drew. I hope you enjoy them as much as I do.

Financial Support for CHD Research and Advocacy Programs

For those of you who may be wondering how you can help the cause, I would implore that you seek out a CHD support group, or CHD fund granting institution, such as the Children's Heart Foundation. Naturally, when you think of heart problems, you think of The American Heart Association. It is a wonderful institution that does a lot of good work. Sadly, the funding they provide for CHD research is barely minimal...it equates to 1/3 of every penny raised. We (CHD community) share that penny with Obesity and Diabetes.

So...if you are specifically looking to support CHD causes, please consider the following organization:

It's My Heart (http://www.itsmyheart.org/)

Why this one? Well, because your's truly is currently working with IMH to establish a Metro Detroit Chapter. If you're a CHD parent, please post if you are interesting in joining once we're up and running. You can also email us...our Chapter email address is metrodetroit@itsmyheart.org. My friend, Andrea, and I will be working hard to get this up and running by mid-summer. We have some fundraisers that will be coming up in the fall/winter timeframe most likely, so if you'd like to donate to us specifically, you may want to wait. But, I implore you to give what you can to help us in this fight. No amount is too small and we owe it to these brave warriors to fight for them, and, of course, we owe it to all our sweet angels to fight on in their names.

Thank you!

Surgical Follow Up

We had Drew's post op appointment with Dr. Cutler this morning. First we did the echo and EKG, then weight and height (he's dropped 6 oz, which makes sense) and finally, we met with Dr. Cutler. She's very pleased with his progress, saying his heart looks "fabulous." His right ventricle is still pumping like it had been previously, as it got used to having to pump so hard, so it's nearly hitting itself together on the inside. But, that's to be expected and should calm down in a few weeks or so. We are cutting out the Aldactone and cutting back on the Lasix. Tylenol is now strictly for the 4 teeth he is cutting, not his incision site pain any longer. We will see her again in 6 wks and hopefully will receive the all clear to go 6 mos-1 year without any follow up appointments!

Thank you again for all your prayers and support! They have definitely made a difference...the power of prayer is awesome.

The Gift of Life

For those of you in S.E. Michigan, please consider donating blood at St. Mary on April 26th, or your local place of worship or your local American Red Cross location if you are not from this area. I believe the blood drive begins at 9:00 or 9:30...I still have to sign up, our Priest gave the wrong information at Mass yesterday! ;) Anyway, I will keep you all posted. Usually these drives have poor turnouts, so let's make this a good one and get out there to pay it forward for all the blessings in our lives. I am especially grateful to give blood, considering Drew just recently benefited from others gifts and I know my donation will help save another's life.

If you have never given blood, please don't be scared. It's so simple and not very painful. Be brave. After seeing what Drew, Amelia, and all the other kids at CHM had to endure, I do not feel I have the right to complain about pain ever again, to be honest. I have never in my life seen someone bounce back so quickly from such a major procedure, or be so pleasant so much of the time while recovering. We can all learn something from these kids.

So, please, consider donating blood...if not now, then soon. Thank you!

PICU Raspberries

I kept forgetting to post this video, but here is Drew the day after surgery blowing raspberries at Grandma Lorie. This was taken maybe 2 hrs after his vent was pulled. Strong little man!

Home Sweet Home

Yay! Drew was discharged yesterday from CHM!

We had to undergo a crappy experience with the radiology staff prior to being released, but our wonderful Cardiovascular Staff Nurse, Janet, went to bat for us. CHM has the best doctors, nurses and staff. I always felt like Drew was in the most capable and caring hands. I never questioned their expertise or compassion. Or, for that matter, their passion for their jobs.

He has been doing well...he hates Lasix, can't blame him, so we're "hiding" it in fruit for now. He's slowly starting back up on solids because I need to make sure he's taking over 30 oz of formula/day for the time being. When he's on his normal schedule, he only takes in 24 oz. He flipped over on his belly this morning and pushed up with his arms for awhile, then I think it began to bother him. He has been SO bored with not being able to move as much, so we're slowly reintroducing him to movement. We need to be careful, but we don't have to avoid it. We just have to lift him a different way for awhile. We are also making his bed like his hospital bed was for a little bit longer. I just don't want anything happening to his incision...it hasn't even been one week!

Again, thank you for your continued prayers and words of love and support. They mean the world to all of us and are helping Drew come through all of this like a champ!

Site to Check Out

Check out this site for further information on CHD, along with some pretty cool graphics! If you are interested in learning more about Drew's diagnoses, click on Pulmonary Stenosis and Atrial Septal Defect. He had Supravalvar PS and Osteo Secundum ASD. (I think I spelled those right! )

http://www.pted.org/

Happy learning! It's a total shame more isn't shared about CHD just in general...I aim to try and help change that. :)