Wednesday, November 26, 2008

Pre-op. visit at Riley

We left the house this morning about 10 a.m. to go to Riley for Whitney's pre-op visit. We returned home around 7pm tonight. Whitney was WONDERFUL considering what a long day we had and how off schedule we were with feeding her. She had a heart echo, a chest x-ray and, unfortunately, 2 blood draws because they were unable to get enough blood the first time they tried. We met Dr. Brown and he couldn't have been more friendly, reassuring, knowledgeable, etc... all of the nurses, techs, staff, basically everyone we came in contact with today were all GREAT.

*** the above info. is the important info about today's visit... the following is just some extra "small world" connections we would like to share...so do not feel you have to read my "book like" entry, sorry in advance!

When we went to have Whitney's heart echo done we walked in and Jenny, the tech, told us she felt like she knew us already. It is definitely a small world -( #1) it turns out that she had seen our blog before we came in today because her next-door-neighbor, Marissa, a friend of mine from IU, told her about us and gave her our blog address. We probably kept her too long because even after the echo was done we kept talking (we share a love of IU and Bloomington... Mike likes to refer to it as "God's country"... so we hit it off quickly!)
More "small world connections":
(#2)Mike went to elementary, middle, and high school with Dr. Brown's son Jason. Jason Brown, for those that went to college in Indiana, was the lead singer of the band "Push Down and Turn".
(#3) My Dad had a conference last week with an attorney from Indianapolis and somehow they ended up talking about family and things outside of their case and my Dad told this attorney about Whitney and it turns out that Jeff, the attorney, lives next door to Joe Meares, the founder of D.A.D.S. (Dads Appreciating Down Syndrome) http://www.dadsnational.org/
Joe was nice enough to take the time to email me and tell me a little about D.A.D.S. and to offer his support. In addition, he is putting in a good word for us with Dr. Richard Schreiner, Chairman of Pediatrics at Riley, who also has a daughter with Down Syndrome. One other connection with Joe Meares - he is good friends with one of Mike's friends from Valpo Law School. We are VERY happy to have this connection with Joe Meares and the D.A.D.S. group!
(#4) A friend of mine from IU, Alissa, is a pediatric physical therapist at Riley and is going to check in on Whitney next week while we are there for her surgery + she will be a WONDERFUL person to know with all of her expertise + people she knows from the Down Syndrome community here in Indy. Alissa also has another connection for us that we are excited about! Her mother is a speech therapist in town and 95% of her caseload are children/people with Down Syndrome.
(#5) We also have some friends and family who have connections to the nurses and some of the residents at Riley who are all looking out for us while we are there for Whitney's surgery. The nurses and residents are good people to have looking out for you!

Can you believe all of these connections? We feel so lucky!!!

We hope everyone has a VERY Happy Thanksgiving! Thank you so much to everyone for all of your comments on the blog, voicemails, emails, cards, meals, help with Anne, etc... I am sorry that I have been so slow about returning calls, emails, messages, replying to comments... I hope someday soon to "catch up"!!! Until then, please know how much it means to have so many people looking out for us and especially for little Whitney!



Sunday, November 23, 2008

Update

Anne's first braids 11-2008
Whitney in her "Born to Rock" pebbles t-shirt from Christie & Brad


Mike chiming in here. Whitney is now 9 pounds, 8 ounces and has one week and one day until her open hea
rt surgery. The latest with Anne is that Laura gave her "nursemaid's elbow." Apparently, Anne wasn't listening to Laura, Laura grabbed onto her arm, Anne resisted and pulled back and her elbow came out of socket. It is actually pretty common with little kids. Laura had to take Anne to the pediatrician to get her elbow put back into place. Contrary to what Anne believes, she is just fine. It truly is not a big deal at all. When I got home, I asked Anne what happened and her response, dripping with drama and insistence that she did nothing wrong, was "Mama did it. Mama hurt my elbow!" You would have thought I needed to get Child Protective Services over here to protect Anne from the 'abuse' her mother inflicted upon her. She can be quite the drama queen, and nothing could ever possibly be Anne's fault. As for Whitney, she is still on several medications, notably Prilosec for her acid reflux, Captopril to help with her breathing and Lasix and Aldactone to help with her heart. She takes all of these meds at once in the a.m., Captopril again around mid-day, and three of the four meds again in the p.m. You have to give her her medicine in these tiny syringes that go into her NG tube. When you lay them all out just before you insert them into her NG tube, it looks like Whitney is 'getting her fix on.' I like to joke with Whitney that "it's time to chase the dragon Whitney," or "it's time for your 8-ball sweety." I don't think Laura finds my reference to using illicit narcotics very funny. But, to each his own. I hope everyone has a good Thanksgiving coming up. I look forward to seeing friends, family, eating a lot and watching the Detroit Lions get throttled again, just like every year. Anne is getting excited to see her cousins Grace and Julia, and her aunts, uncles, and grandparents. Have a good week everyone!

Saturday, November 15, 2008

a two year old world

Anne had soccer this morning. (Yes, Anne, 2 years old, plays soccer... they start sports early in Carmel! I wouldn't say she exactly "plays" soccer - it is more of Gymboree with a soccer ball.) I asked Anne when she got home from soccer (this is an activity on Saturday mornings for Anne and Daddy) who all she saw at soccer... she said "Colin". Colin is her friend she met when she was 6 months old in Gymboree... we still get together on Fridays with Colin and Max (another Gymboree friend). I then asked if Colin's dad, Eric was there. "Yes." Was Leah there (Colin's mom)? "No, she was left at Colin's house." I am sure Leah and Eric would be interested to know that it is actually "Colin's house". Although, I shouldn't be surprised by this - Mike, Whitney and I live in "Anne's house" and I drive "Anne's car"... lucky Mike, he actually has his own car - but I apparently just borrow Anne's car when we need to go places :)

Here is a picture of Anne in her soccer uniform. I will also try to add a few more pictures to the "flickr" account (you can see these pictures by clicking on the box with pictures located on the left side of the blog) I also can't resist posting a picture of Whitney (just because).

Also - do not feel like you have to view this, but for anyone interested, I am including Anne's hula dancing video from this past Halloween. Hope everyone is having a good weekend!!!





video

Tuesday, November 11, 2008

Some recent photos

Family pic: Whitney, 1 week old Anne, 2 yrs old
Whitney's Halloween outfit
Anne, our little hula girl

"Cheese"
What a sweet older sister (it is funny-and sweet- to see how gentle Anne is in this picture, sometimes she is not so gentle... she has been known to peel Whitney's eyes open and say "wake up" when she wants Whitney to wake up and "play". I guess this kind of logic would make sense to a two year old.)
Whitney, 3 days old
Whitney's birthday, 8-25-08

Anne at the 2008 Indiana State Fair, August 2008

Monday, November 10, 2008

Maddie(dog) & Isabelle(cat) ~ our kids before we had Anne and Whitney
Maddie(dog) & Isabelle(cat)
Whitney Elizabeth Byron 1 week old
Anne Conley Byron 2 years old

November 10, 2008 - UPDATE

We have finally decided to post information to a blog so that people could check the blog when they wanted to find out the latest. We will do our best to post updates regularly, but we are new to "blogging" so please be patient! :)

A week after we brought Whitney home from the hospital (when she was 11 days old) she became very sick with a fever of 102 degrees and had to be hospitalized for 5 days. During this time she became very weak and stopped nursing and eating altogether. We tried pumping and feeding Whitney by bottle (to know how much she was taking in) but ultimately she was just too weak and we had to insert an NG (nasal gastric) tube to feed her. When we were discharged from the hospital, they advised us to add powdered formula to breast milk for added calories to try to get Whitney to gain as much weight as possible before having open-heart surgery. Her little heart is working so hard all of the time and burns all of the calories she takes in just to exist so it made sense that we would add these extra calories. Unfortunately, it took almost 7 weeks before we realized that the formula was making her sick and that her body could not handle or process the extra calories. She has acid reflux and would get sick with every feeding. We try each time to feed her by bottle and we put whatever she does not take into her feeding tube each time. Whitney would cry and squirm in pain each feeding and would be uncomfortable and often times in pain even after the feeding was finished. 2 weeks ago we went to the doctor and discussed trying to switch her to formula only, in case there was something in my breast milk that was causing her discomfort. We gave her 3 feedings of straight formula and I have never seen her as sick and in pain as she was from this "experiment". This confirmed that the formula was causing her to feel sick and for the first time since before she was sick and hospitalized, I gave her straight breat milk (without added calories from powdered formula added to the breast milk). Within a day she was a new baby! She felt so much better, looked so much better and we quickly realized how hard it had been for her to have formula, even in small quanities, for so many weeks. Since this "experiment" with formula only, Whitney does not take much at all by bottle, it is as if she is scared and protecting herself from what she figured out was causing her so much pain. We are slowly but surely working with her to gain her confidence that it is ok to eat! This is difficult, however, because of the length of time that we had been adding the extra calories with formula and also because of her heart condition. We are hopeful that after she recovers from the heart surgery that she will have more energy and endurance to be able to eat and also that she will not have to battle trying to breath and eat at the same time. Her breathing is very labored and should be much better after she recovers from her surgery.

Whitney's open-heart surgery is scheduled for Monday, December 1, 2008 at Riley Hospital for Children in Indianapolis. Her surgeon will be Dr. John Brown. We are looking forward to and dreading this surgery all at the same time!

In the mean time, we are just doing the best we can to balance life with Anne (our two year old) and taking care of Whitney. Anne has handled all of this very well (considering she now has to share the attention of her parents, grandparents, aunts, uncles, friends, etc...) We are very lucky! Our dog, Maddie, however, has not handled everything quite as well. We actually had to take her to the vet a couple of weeks ago for a multitude of reasons and she is now on an anti-anxiety medicine and is feeling much better :)

3 weeks to go until the surgery! Please keep Whitney in your prayers!!!

Whitney update: email sent by Mike 9-12-08

2nd e-mail sent September 12th:

Dear family and friends:

Laura and I have been run ragged with meeting with Dr.'s, the constant phone calls, the updates, the treatments, prognosis, etc., for Whitney. You have ALL helped out greatly with advice, assistance, support, watching Anne, etc. We do appreciate it very much. Honestly, thank you for EVERYTHING so far.

Upon meeting with BOTH pediatric cardiologists yesterday, Dr. Sanjay Parikh of St. Vincent 's Children's heart center, and Dr. Anne Farrell of Riley, We BOTH feel that the best course of action for US (Laura, Me, Whitney and Anne), in terms of 'pediatric cardiology care' for Whitney, is for her to go to Dr. Parikh. Our pediatrician, Dr. Kristen Gollnick thinks we can't go wrong either way on Drs. But, after discussing treatments, plans, surgeries, etc., and talking with both doctors, our initial gut reactions were to go with Dr. Parikh and his plan for the pediatric cardiology care, BUT to go with Dr. John Brown at Riley Hospital as the pediatric heart surgeon. I actually went to Kindergarten through North Central with Dr. Brown's son, Jason. We were in the same class growing up all through school. I know Jason and his family. It is a small world.

There are only 3 pediatric heart surgeons in Indianapolis , one at St. Vincent 's and 2 at Riley. Dr. Parikh was very adamant that we should go wherever we want to go to do the surgery, whether it was at Riley, St. Vincent 's, or even the Mayo or Cleveland Clinic, and he would send us wherever we feel most comfortable and wherever we wanted to go IN THE COUNTRY. He stressed that Riley is wonderful and that Dr. John Brown's specialty is "Pediatric A-V Canal Defect surgeries." Dr. Parikh said that for A-V canal surgery, he would go to Dr. Brown at Riley. My friend, Beth Admire, whose son has down syndrome and had the same surgery a few years ago went to Dr. Brown for the surgery and she said that he and Riley were fantastic. She also said her son was 6 months old and weighed just 9 pounds the day of the surgery.

As for Whitney's plan, Dr. Parikh stressed that we feed Whitney through the NG tube that goes through her nose and into her stomach for the next week to 2 weeks, that we supplement the breast milk with 1 tsp of formula on each feed, but that we also continue to simultaneously try and breast feed her, stimulate her mouth, use a pacifier, etc. (for the record, Dr. Farrel and our pediatrician said the same thing about feeding her). The NG tube is really a quick fix. It is not meant to be a long term plan. Dr. Parikh said that ultimately, we may have to have a G tube attached to her stomach via a surgery. Whitney would ultimately need 1 or 2 days in the hospital to recover from the surgery to place the G tube in her stomach. He said that it is easiest on everyone, including Whitney if this is what is done, this is assuming that Whitney's feedings are still an issue (i.e. she continues to fall asleep and not feed well from a bottle or the breast). With the NG tube she has acid reflux, she wretches, and you can tell she is VERY uncomfortable.

The goal is to get Whitney bigger and stronger for the surgery, but not wait too long to do the surgery. Just today she passed the 7 lb. mark again. YEAH! It is not uncommon with her condition for her to be weak, sickly, not eat much, sleep a lot, etc., UNTIL the surgery. But, there is a point in which Whitney, because of her condition, may simply tread water, and not put on weight or grow at all. An increase of caloric intake may overload her system, and lead to a variety of complications. You can't jut up her caloric intake, feed her more and more and expect her to simply grow big and strong. It won't work that way. Dr. Parikh said he would recommend doing the surgery at 3-5 months, most likely 4 months, assuming she gets bigger and stronger, which the G tube should help, if it comes to that.

Basically, Whitney is in bad shape because of her heart, and the sooner she gets bigger and stronger to have the surgery, the better. But, she will probably not grow much at all from 4 months on as opposed to 6 months. Having the surgery earlier than 6 months outweighs the option to wait for her to get bigger (which she most likely won't get much bigger at all and she will simply prolong her weakened heart condition, and we will be taking somewhat of a risk with her weak immune system, she may get sick, get a virus, pneumonia, etc.) and the longer we wait, the more likely we are to risk PERMANENT heart, lung and hypertension issues. Dr. Parikh stated that there are some recent studies that show a child can get into permanent problems if the surgery is not done before 6 months. Rather than prolong Whitney's condition and wait for her to get bigger (which she may not), we want to go with the surgery at 4 months instead of 6 months. Her breathing is very labored, she is very weak, she is susceptible to getting very sick, and it is scary, and her condition will not improve until the surgery.

Dr. Parikh assured us that "Dr. Brown is so good at the AV canal surgery, she could have it today and probably be just fine, but, let's see if she can get bigger and stronger first."

Thank you again for all of your support, guidance and help. We love you all.

Mike, Laura, Anne and Whitney

First email sent by Mike to friends and family 9-3-08

1st e-mail Sent September 3rd

Some of you may know, some of you may not know, and I am sorry this is long winded. I also apologize if this is a surprise to any of you, but I just wanted to let you all know that Whitney Elizabeth Byron was born August 25th at 1:04 a.m. Laura literally almost had her in the car. She was dilated to a full 10 plus 1 when we arrived at the hospital. It was like a scene from a movie getting to the hospital as I drove 70 mph down 131st to Carmel St. V’s. just after midnight Sunday night/Monday a.m.

You’re probably going to hear this from someone, but just so you know the latest and so you hear it from me, Whitney has down syndrome. This has been confirmed. As you can imagine, it was quite a shock to find this out, as we had absolutely no idea, hint or indication that this would surface. Our 20 week ultrasound showed no signs of any problems, and Laura’s pregnancy was just fine the entire time. Apparently, they are only able to detect down syndrome from an ultrasound about 50% of the time. Truthfully, even if we had known of her condition at that time, it wouldn’t have changed anything. Also for us, we would have rather been shocked for 2 days, which we were, than have a pregnancy wracked with constant worries and fears.

After Whitney’s stay in the neonatal intensive care unit, we all went home Friday afternoon after a 5 day stay and Laura and Whitney are doing very well. Big sister Anne is beaming with pride and is happy to have a future playmate. She can’t keep her hands off of her. Constantly kissing, hugging and patting her face. It’s very cute. A little maddening at times, but cute.

The severity of Whitney’s down syndrome and her overall mental capability is not known and will not be known until later in her development. However, we went to the pediatrician yesterday and we were told that she is currently ahead of most down syndrome children as she is not weak, she feeds very well, she has put on weight, etc. But, Whitney does have a heart defect. It is specifically termed a “complete atrioventricular canal defect” or “A-V canal defect.” Virtually 50% of all down syndrome children have similar heart conditions. Whitney will be having open heart surgery in about 4 months to correct this defect. Without the surgery, her life expectancy would be 15-20 years and would be filled with a variety of complications. After this surgery she should have a heart that functions normally at about 85% - 95%, and have a full life expectancy.

We are very lucky to live in a day and age where there are so many resources, specialists and groups that are here to help. Despite Whitney’s initial setback and diagnosis we are very fortunate.

I am sorry if Laura and I have not returned phone calls and e-mails from some of you. As you can probably guess, we have been VERY busy. I promise to get pictures out sometime soon after I dig myself out of my e-mail / voice mail backlog. Until then, please feel free to call, e-mail or ask any questions that may come to mind. We’re not walking on egg shells about this. It is what it is. We will simply take it one day at a time. I would have e-mailed you all the news had she been born without any problems, so why would I change that now. We will all be just fine.


Love,


Mike, Laura, Anne and Whitney