Comments on Camp Homeschool: A Complete Circle

Hi, I just wanted to introduce myself. I'm Beth,...

2009-06-15T12:05:41.128-05:00

Hi, I just wanted to introduce myself. I'm Beth, mom to 3, the youngest of whom has Down syndrome. My daughter had heart surgery as a toddler. We are a homeschooling family (going on 17 years...).

You write beautifully about your journey so far. I love you honesty. I hope you find the Down syndrome community, both local and online, to be a welcoming and supportive encouraging part of your family's life.

Just wanted you to know that I am praying for you....

2008-08-15T15:42:00.000-05:00

Just wanted you to know that I am praying for you...another blessed mom of a child with Down syndrome

I was reviewing information available on AVSD thro...

2008-08-06T01:43:00.000-05:00

I was reviewing information available on AVSD through google and came across your blog.

My prayers are with you, Jen. You are beginning an amazing adventure. You and your family will grow in ways you never expected, and it can be very very good.

Back in 1971 when my daughter was born, with Down's syndrome and an AVSD, we were told she had a 'heart murmur' that would 'probably never bother her'. A pediatrician at the hospital where she was born even told me to get her on a waiting list for a state institution, and not to get too attached, because she would probably not reach her second birthday (and if she made it to 2 would probably not survive to age 10). He did not think she would do normal baby things like walk, talk and learn -eventually- to read.

He was not pleased with me when I told him she was my baby, and I was going to take her home and love her and do the best I could. He told me I would regret it.

He was quite wrong. I have no regrets. I did the best for her that I could, and she responded by being an amazing person, loving, helpful, generous, and with a wry sense of humor.

She never had her AVSD fixed, and developed pulmonary hypertension. She coped. She volunteered, and did more with her life than some people who had no handicaps like hers.

She died in July, with family and friends around her, surrounded by love. Youngest sister started singing "I'll fly away" and all joined in who could. My throat would not cooperate. Even in full knowledge that children are only on loan from God, it isn't easy to let go when He calls one back.

If she were born this year, she would have her AVSD repaired, as your child will. Let me share her obituary and the loving comments from her guestbook (which should be online until 16 August)
http://www.legacy.com/mcall/Obituaries.asp?Page=LifeStory&PersonID=113553244

Bless you all.

Also popping in over from Pinwheels. This is so b...

2008-07-12T23:30:00.000-05:00

Also popping in over from Pinwheels. This is so beautifully written and brings back so many memories for me. My daughter has a different chromosomal defect, but was diagnosed prenatally. That moment when the doctor told me something was wrong on the ultrasound was one of the most vivid moments of my life. I wish I had written more of my feelings at the time.

Wishing good health for your baby!

Just wanted to say congratulations on your pregnan...

2008-07-01T23:48:00.000-05:00

Just wanted to say congratulations on your pregnancy and new little boy!!! I found your blog through Pinwheels :) I have six kiddos and our youngest has T21, although we found out at birth, I can imagine the feelings you've been feeling! I can, without a doubt say that we feel very blessed to have Brady, and he definitely completes our family.

Praying that the rest of your pregnancy goes well and can't wait to hear more about your newest little guy!

Congrats!!!

Wow. I found your sight through Pinwheels. This po...

2008-06-26T15:13:00.000-05:00

Wow. I found your sight through Pinwheels. This post moved me to tears. What a blessed child to be arriving to a Mother like you! My fifth child, as well, was born with Down Syndrome. We did not have a prenatal diagnosis. He stayed in the NICU for seven days after he was born due to hyperbilirubinemia, unrelated to the Down Syndrome. During those days, I felt and thought all that you described. This post brought back so many memories.
Now, he is a thriving 3 year old. I can truly say he is a blessing, and such a joy!
"Be strong in the Lord, and in the power of His might." Eph. 6:10

Oh wow..I just read the above posts. I also had b...

2008-06-24T07:45:00.000-05:00

Oh wow..I just read the above posts. I also had boy girl twins 20 months after my son was born, just like Leonard!

Hey there. My name is Laura and I have a 3 year o...

2008-06-24T07:43:00.000-05:00

Hey there. My name is Laura and I have a 3 year old son with Down Syndrome. He also had Atrio-Ventricular septal defect, failure to thrive, heart surgery at five weeks old, some therapy. But now, now I can't keep him from climbing everything in sight and he just bit through his tongue running through the house. He's just a little wild man, and I love it!!He's talking, feeding himself (somewhat messily), doing everything any other kid does. I do know where you are. I'm so glad you found your peace and a place to rest while you wait for your little one. I'm here if you should ever want to talk. I know it's weird when a stranger says that, but I am just another mom who's been there. Email me at ivegotfive@live.com if you want. Thinking of you, your husband, and all of your family including that incredible little one.

Laura

Hi - I saw your post on Pinwheels. My name is Nan...

2008-06-23T21:11:00.000-05:00

Hi - I saw your post on Pinwheels. My name is Nancy and our story is on page 130 of the GIFTS book. I know pregnancy post-diagnosis is an emotional roller coaster. Please check out this site for some great support: http://boards.babycenter.com/n/pfx/forum.aspx?webtag=bcus5536 - it the a Down syndrome pregnancy support board.

Also, our experience about Gabby's AVSD may help. Good luck - pregnancy is the toughest time but life is great!

Dear Parent or Expectant Parent,

If you are reading this then your baby has been diagnosed with AVSD, also called a complete AV Canal Defect. Your cardiologist will explain or has explained to you the medical description of this heart defect, but I have asked the good people at CHOP to share with you our experience, a first-hand account of the journey of parents with a child with an AVSD (and in our daughter’s case Down syndrome), because I remember all too well the fear that accompanied our daughter’s diagnosis, and the sense of calm that I experienced after talking extensively to parents who had been through this surgery. Although I believe our experience to be rather typical, please remember that symptoms, complications, and recovery times may vary. Please make sure that you address any concerns with your nurse or doctor rather than relying on my account. (Especially the parts where I may not have followed doctor’s orders as closely as I should have!) I do wish you the best of luck!

Pre-Natal Diagnosis

We learned of our daughter’s dual diagnosis of Down syndrome (Trisomy 21) and AVSD on October 14th and 15th of 2004, at approximately 18 weeks gestation, through an amnio and echocardiogram. This information was of course very shocking and scary, and we feared for our daughter’s life despite calm assurances from our cardiologist that this surgery carried with it a stellar success rate. Despite the good prognosis, there is just something about those words, “heart defect,” “open heart surgery,” and “hole in the heart.” It seems overwhelming.

After our initial shock wore off, we were able to do research, and the more we learned the better we felt. Although AVSDs do not close on their own, we learned that CHOP is the top children’s hospital in the country, that the cardio-thoracic surgeons perform daily heart surgeries, and that they perform AVSD repairs twice a week. Our pre-natal panic was quickly turning into relief that we were lucky enough to have CHOP in our backyard. In addition, I was able to get in touch with other parents whose children had AVSD repairs on the on-line Down syndrome support boards. Each parent said their children did amazingly well after the surgery.

We also had time to switch our insurance, tour the cardiac floor, and meet with the cardiac lactation consultant at CHOP to develop a plan for breastfeeding. Additionally, our cardiologist was able to monitor the baby’s heart with several echocardiograms. If no complications developed, we would be able to deliver the baby at our local hospital with our regular obstetrician.

Pre-surgical Experience

Our baby, Gabriella Louise, was born on March 1, 2005. My cardiologist had recommended the baby be on breast-milk long-term, and I had nursed three children previously, so I was determined to nurse Gabriella. Unfortunately, she was not interested. Around-the-clock pumping was difficult, but I continued it for many weeks. I stopped trying to breastfeed when she was only 9 days old because she would cry when I tried. Instead, we gave her breastmilk in a bottle, fortified directly with high-calorie powdered formula at a ratio my cardiologist recommended. It took a very long time to feed Gabriella a bottle, and she rarely ate the full three ounces. I eventually stopped pumping at night, and eventually stopped feeding her in the middle of the night due to sheer exhaustion. I worried about her total calories, but taking an hour at 2:00 A.M. to give her an ounce just wasn’t worth it. At two weeks of age, she was consuming an average of 14 ounces a day. This steadily increased to over 17 ounces at 6 weeks of age, but then dropped down to 14 to 16 ounces a day. Her original birth weight of 5 pounds, 6 ounces increased to 6 pounds, 1 ounce (2 weeks), 7 pounds, 6 ounces (6 weeks), 8 pounds, 9 ounces (12 weeks). I was actually very happy with this weight gain considering that we expected her to do much more poorly.

When Gabriella was 8 weeks old, things changed dramatically. She started sucking on my neck, so I just put her to my breast. She nursed! I couldn’t believe it. I was so excited – I told everyone. I thought it was a “one time deal,” but she did it the next day, then the next, then twice a day, then more. Just after turning three months old, she drank her last bottle. We had gone to a wedding, and while we were gone she gave my mom a really hard time about drinking her bottles. I felt like she was already exceeding expectations, even at 2 months of age, like she could do anything. I was just so proud. My cardiologist, though impressed, did ask me to continue to try to give her a bottle, so that we could get some extra calories into her, and so that she would be used to a bottle for her hospital visit. I really did try, but by then Gabriella was accepting no substitutes.

After this switch to breastfeeding, a short bout with bronchitis, and the discovery that she had gone from HYPOthyroid to HYPERthyroid, Gabriella’s weight gain tapered off. By the time of her surgery at 5 months of age, she weighed only 9 1/2 pounds. At that age, she was sleeping through the night in a very deep sleep, and staying up most of the day except for cat naps (what happened to the “sleep all day” baby they promised me?). She would nurse well, but not once she “passed out” for the night. She was very active, meeting most of the usual developmental milestones, including rolling over both ways by 4 ½ months. She was “baby talking,” smiling, laughing, and fascinated by strangers. Following our cardiologist’s orders, we’d been pretty much home since her birth, venturing out with her only to medical appointments.

We had thought Gabriella would have more symptoms, like excessive sleeping, sweating while eating, labored breathing, turning blue, weight loss, lots of illnesses. Except for trouble gaining weight, she remained asymptomatic. As the time for surgery drew closer, I was so nervous that she would get sick and we’d lose our surgery date. Thankfully, she stayed healthy and we were on target for surgery. (She did start sweating on her neck while eating, but not that much, and her back while sleeping, but again not as much as I expected.)

Surgery Experience

Gabriella had her surgery on Monday, August 1, 2005. Having done a lot of research, I wasn't too nervous, but my nonchalance was a bit ruffled when they actually came to take her. My husband and I wanted to grab her and run! The surgery was fairly quick, lasting only a little over two hours, with additional time for prep and anesthesia.

We were fine waiting, but the first time seeing her was a bit unsettling. I had expected tubes, but there were so many! They came out over time, one by one, and she was "free" enough to breastfeed that night around 10 p.m. Amazing isn't it? Of course, most of the doctors and nurses said I could not nurse her because they wanted to see how well she was eating by seeing the ounces, but I have found out with medical professionals that if you don't like an answer you just ask the next person on duty. (tee-hee) So the intensivist (my new word) who was on duty at 10 finally said, "I don't see why not - the bed is at the height of your breast, so roll her on her side and try it." And it worked! The next day, so she eating like a champ, and more tubes were being removed. She was still on a little morphine, and slept a lot.

At this point, she was in the CICU, with four beds to a three-walled room (called a pod) open to the nurse's station. Most of the babies were newborns, and I didn't meet any parents who said their kids had Down syndrome. She actually looked big in comparison to the other babies. At first, she had a nurse all to herself, but as time passed, there were two patients to a nurse. There were medical people constantly on hand.

By the wee hours of Wednesday morning, Gabriella wanted to nurse at 4:00 A.M. (fun for me, after having a sleepy nighttime baby for five months!) More tubes came out on Wednesday, and she was alert and happy. Pain management was strictly regular Tylenol at that point. By late Wednesday morning, less than 48 hours after surgery, she was ready to "step-down" to a regular hospital room. Here there were visits from a nurse, but really I was her caregiver again. She was happy, laughing, baby-talking, constantly getting herself mixed up in all of her monitor wires. We had some visitors, first three friends of mine from high school, and then my husband and the other kids. They had "sand art" for the kids, toys, and things to explore, so the kids probably wanted Gabriella to have an operation every week. That night, I slept on a couch next to her bed, which I very much preferred to the CICU arrangements.

By the next morning on Thursday, we had the word - she was to be released that day. We left at 1:00, a full three days since surgery. Yes, three days after invasive open heart surgery, we were leaving with a happy, energetic, adorable baby. I even asked the nurse if she was a “miracle baby.” The nurse calmly said, “No. A lot of babies leave after three days.” As people said, "She's so cute," in the elevators, I wanted to shout, "Open Heart Surgery - three days ago!" but I didn't. I just smiled.

It's been ten days since surgery, and she had her stitches taken out yesterday. The incision itself has no stitches - they used "subcutaneous" stitches, so it looks like a razor-thin line, not like the Frankenstein criss-cross we all imagine. The stitches removed were where the chest-tube came out, just below the incision, and on her right wrist where the artery line ran. She has grown and gained so much weight in such a short period of time, and her appetite since the surgery has been tremendous.

I keep thinking of my fear when we heard the prenatal diagnosis of a heart defect. I worried SO MUCH. Talking to "heart moms" on the Down syndrome support boards helped to calm my worries so much, and I was very calm going in to the surgery, but I still did not expect it to be so very - oh what is the word? I think maybe "pleasantly anticlimactic" is the appropriate phrase here. Anyone who is worried about their child's diagnosis of AVSD (sometimes called complete AV Canal defect) should be aware that the fear you have after hearing that news is grossly out of proportion to the reality. Still, I am glad it is OVER and I can enjoy my healthy baby who at the rate she's now eating will be HUGE by Christmas!

http://www.congenitalheartdefects.com/ (Information and resources).

http://bbs.babycenter.com/board/baby/babyills/babyconditions/1202028 (This is the “heart conditions” discussion board on the baby center, where you can post a question and receive support from other parents. Please remember these are parents, not medical professionals.)

The following sites are related to Down syndrome, but the heart website explains things well, so it is useful even if your child does not have Down syndrome:

http://bbs.babycenter.com/board/baby/babyills/babyconditions/11985?_loopback=1
(Baby Center Down syndrome discussion board)

http://www.nads.org/
(National Association for Down Syndrome) (If you go to the discussion board open forum, you can post a question about heart defects or do a search for AVSD)

http://www.ds-health.com/
(Website owned by Pediatrician that has a child w/ Ds.)

http://www.downs-heart.downsnet.org/
(Heart defect information.)

http://www.ndss.org/
(National Down Syndrome Society)

http://www.ndsccenter.org/
(National Down Syndrome Congress)

Congratulations! This baby will bring you joy and...

2008-06-22T15:20:00.000-05:00

Congratulations! This baby will bring you joy and blessings that you can only begin to imagine!
My daughter with Down syndrome is 11, where did the years go??

God bless you, Jen, and your sweet baby boy! I ca...

2008-06-19T22:46:00.000-05:00

God bless you, Jen, and your sweet baby boy! I can't say that I know what it's like to have a child with DS, but I do have a nine year old daughter who was injured at birth, and I have ridden that roller coaster of emotions that comes with being given a child who's not the one I expected, but the very one I needed at that point in time. Have you ever noticed that the experiences we try so hard to avoid, when one of them does eventually catch up with us, often (always?) turn out to be the biggest blessings? I have the feeling you have noticed that.Your post is beautiful! Your new little guy and his big sister and brothers are blessed to have such a wise and trusting mommy.

Faith in God is a refusal to panic - I love it!!

So, do you have a name picked out?

I just found your blog through Pinwheels. Congrat...

2008-06-18T15:17:00.000-05:00

I just found your blog through Pinwheels. Congratulations!!! We didn't have a prenatal diagnosis but we have Joe, our chromosomally enhanced, 5-year-old, about to go to kindergarten, boy! Joe had a complete AVSD at Mott Children's Hospital in Ann Arbor Michigan in Aug 2003 (15 weeks old). If you have any questions about raising a kid with T21 feel free to stop by my blog: http://emmajoseph.blogspot.com or email me.

I wrote an essay for "This I Believe" about Joe's birth. Everyone's experience is different and I am wishing you and your family great joy as you welcome your new child.

I got to you from pinwheels. We found out prenatal...

2008-06-18T08:19:00.000-05:00

I got to you from pinwheels. We found out prenatally, too.
Congratulations! I remember the days after getting the diagnosis, and man, were they tough. Suck the air out of your lungs tough. It sounds like you've make it to the other side, though, and trust me- it gets better from here.
I can't wait to read more from you!

I found you through Pinwheels, too. My experience...

2008-06-16T21:40:00.000-05:00

I found you through Pinwheels, too.

My experience is just like your own, just like Jen's. I felt the same things you're feeling, too.

My son Archie had heart surgery when he was six-weeks old. It was difficult, and their were complications, but ultimately (and miraculously!) the surgery was successful.

Today Archie is a big brother to boy-girl twins born right before his second birthday. I can't explain to you how much I love Archie, nor how much he's taught me about life in general or what's truly important.

I've been writing about my experiences as Archie's mother since before he was born at archiesroom.com I hope you'll visit when you have the time.

Best of luck to you and I'll be sure to remember your sweet baby boy in my prayers.

Found you through Pinwheels.I had a very similar e...

2008-06-16T21:14:00.000-05:00

Found you through Pinwheels.

I had a very similar experience to yours. A/V Canal defect found during routine ultrasound, Down syndrome confirmed through amnio. I felt all those same things you wrote. Wishing I'd stay pregnant forever.

My son Evan had a successful heart surgery at 6 months. He is now almost 2...being his mom has been life-changing. He is amazing, and wonderful and rowdy and completely challenging, like any 2-year-old boy would be.

Hoping for the best for you and your new little boy.

I found your blog through the Catholic Moms blogro...

2008-06-16T20:37:00.000-05:00

I found your blog through the Catholic Moms blogroll.
This little guy is blessed to have you as his champion and protector in this world.
I will also add you to my prayer list.
Reading your "about me" cracked me up....we finally found some land to buy after a long search. We are excited to get our country life filled with wildlife, chickens, gardening, and PEACHES! lol I thought "hmm...exactly what we're headed for minus the cranberries and add the peaches." The land we're buying has a small peach orchard on it. I cannot wait!! There are tons of almost ripe peaches hanging from every tree out there right now!
Happy Monday!! Enjoy your evening!!

I found your blog after you left a comment on Niks...

2008-06-16T19:25:00.000-05:00

I found your blog after you left a comment on Niksmom's blog. Since we homeschool too, that piqued my interest to check out your blog.
Congratulations on baby number 5...children are such a blessing no matter what number they are and no matter what challenges they face! I will add you to my prayer list over the coming weeks as you prepare for his birth and go through all of the emotions that encompass this time.

I came across your blog through Jennifer's post. ...

2008-06-16T15:53:00.000-05:00

I came across your blog through Jennifer's post. I first wanted to congratulate you on your pregnancy! Reading the last part of your post gave me goosebumps, how you finally replaced the u/s pic with the newer one, how you're anticipating his arrival.

I guess I just wanted to let you know that every emotion you have felt, or are feeling, are ok...there are a range of emotions to feel upon learning your child has Ds. It is different once your baby is here and you can hold him in your arms and see him as your child first and not the diagnosis.

Wishing you a wonderful last trimester and easy delivery!

Found you through Jennifer's blog and just wanted ...

2008-06-16T11:52:00.000-05:00

Found you through Jennifer's blog and just wanted to stop and say...what? I'm not sure. Just that I think you will be fine and your son will be loved and treasured as much as --and BY-- your other children. Families are like that.

Sending you good thoughts.

I was just doing some research on DS and came acro...

2008-06-12T15:14:00.000-05:00

I was just doing some research on DS and came across your blog. Thought you might like to meet other parents in similar situations. My son Ian was born last September, had heart surgery and has an awesome laugh. Stop over if you want. My blog is here. (Our story begins at the bottom of the page) Another Catholic family blogs from time to time here. Hope things go well.