Search This Blog

Pookie Background

Showing posts with label birthday. Show all posts
Showing posts with label birthday. Show all posts

Sunday, April 21, 2013

Happy 1461 Days of Trisomy 18 Miracles!

Happy 4th birthday to our little miracle girl! In case you are checking your math, it's 1461 days because she lived through 1 leap year! ;-)

Exactly 4 years today, Rebekah Faith Budd was born into this world with Full Trisomy 18. She was never expected to make it to birth, let alone be here 4 glorious years! In fact, we actually had her funeral planned before she was even born. Then she went home on hospice as everyone waited for her to just die.  But, oh, how we like God's plan so much better than the one that we had!

A friend commented to me today that she remembers visiting us in the hospital when our sweet baby was born. She had to leave to get ready for her own daughter's princess birthday party. I told her, "I hope one day my little girl can have a princess party." And she told us that one day she will.  This memory brought tears to my eyes. And we did, her first birthday party was a princess party.

Words cannot explain how awesome it is to celebrate this miraculous 4th birthday... in fact, we've had 1461 miraculous days of  full trisomy 18 living!   God is good!

Here is a look back through time. How she has changed!
Rebekah's Birthday Day - March 21, 2009. She was 4 lb  6 oz.
From the beginning we were surrounded with other trisomy 18 miracles! Here are her local friends: Dawson and Kaylen.
Celebrating Rebekah's 1st birthday along with 3 other trisomy 18 friends! Dawson and Kaylen are in the front row and Natalie is in the back row. 
This is Rebekah around her 2nd birthday. How she loves her family!
Rebekah's 3rd birthday brought more joys.
Rebekah celebrated her 3rd birthday with several more trisomy friends! Here she is with her TFFs. Joey and Lily are about Rebekah's age, and Kaylen is about 12!




Thursday, May 3, 2012

Against the Odds - Living with Trisomy 18

Rebekah celebrated her 3rd birthday on April 21, and she celebrated surrounded by her trisomy family! Thanks to Russ Bowen at ABC's WLOS 13 in Asheville, NC, we were able to share the miracle of her life and the blessing that she is to our family.  We are so very grateful to WLOS for running this Special Report on trisomy 18 and sharing our hope and faith with others! Please grab a tissue before watching and SHARE, SHARE, SHARE!! We want people to know that this is a journey worth walking.  (The direct link to the youtube video is here: http://www.youtube.com/watch?v=M5JDrQrwYFY)



The video was taken during the weekend of Rebekah's birthday. We celebrated with 6 trisomy 18  and 1 trisomy 9p friends. We also had the family of a chromosome 2p- (microdeletion), and two families who have lost their trisomy 18 children. Our friends came from SC, FL, and GA.  Below are just a few pictures followed by a link to our facebook birthday bash photo album.

Josiah decided he wants to be a camerman when he grows up!

Beautiful trisomy kids and their mommas

Rebekah showing off her pretty dress and newfound standing skills

Lisa, trisomy mom to Joey, receives a kiss from Kaylen, who has full trisomy 18 and is 11 years old!

There are many more photos to be seen! Please check them out on our birthday facebook album.

Wednesday, April 21, 2010

Milestone(s) I Never Thought Would Come...


Today we celebrate probably the biggest milestone of Rebekah's life... her FIRST birthday!! Praise the Lord!

I tried to submit a birthday announcement to our local newspaper a few weeks ago, but they no longer do birthday ads. So I submitted a birthday celebration announcement to their online website as a community event. I was called a few days later by a reporter that wanted to do a special interest story on Rebekah! That story will, I believe, run in todays The Greenville News paper! I have no idea what the final story will say/include...but hopefully it will be a story of inspiration, God's grace, faith and miracles!

So, on Saturday, 4/17, we celebrated with over 200 people and with 3 other trisomy 18 friends!! What an incredible day! And Michael, during his speech, reminded everyone of several important things that have happened along the way. When Rebekah's condition at 19 weeks gestational age was confirmed with trisomy 18 through amniocentesis, the first thing we did was pray and give the situation over to God, come what may. On the day of Rebekah's birth, when she had to be bagged several times for failure to breathe and we were being gently pushed to make decisions, our 'decision' on 4/21/09 was that we would keep her alive through the night so that her brothers could meet her in the morning.

But God had a different plan for Rebekah, and instead of carrying out completed funeral plans, Rebekah stabilized and fought for life! She went home from the hospital after one week, and she was really only there for the whole week to establish her feeding (by mouth!) and to get her over some jaundice. We went home and, although she had many episodes of apnea, she continued to eat well and grow.

When she was one month old though, her apnea episodes were getting so frequent, that she had hundreds of 'episodes' in one 24 hour period and maxed out her apnea monitor memory at the same time! (By this time, she had also earned the nickname 'Blue Belle' because she was constantly turning blue during these events when she would stop breathing.) We made the decision to check her into the hospital and run whatever tests needed to be run so that we could definitively know the reason for her life-threatening apnea. This began a month-long process of tests, juggling our schedules and four boys at home, and relying on friends for childcare, meals, help, and praying earnestly that her life would serve a greater purpose.

Before the tests even began, we were lectured to by doctors... "You need to sit down and discuss this situation together and come to an agreement on what you are going to do. Your child is going to need to be trached and on a ventilator. Many parents have been down the path you are going down and, knowing now what they didn't know then, would have made different choices..." The gist of the conversations? Your daughter is incompatible with life. Don't make her suffer by putting her through all kinds of tests and procedures, only to put her on a ventilator for the remainder of her short life.

But after one important test, her sleep apnea test, attitudes changed. Her major issue was obstructive apnea, most likely caused by micrognathia (small lower jaw) but a normal size tongue - something that could be addressed with a tracheostomy until her jaw caught up to her body in growth. And because the problem seemed to be all upper-airway related, ventilation should not be needed. And it wasn't! And while it took a good three months for her body to completely adjust to the tracheostomy, we have never filled-up her apnea monitor memory again!

Yes, Rebekah does have some other health issues and physical anomalies, and we see many specialists. But for the most part, there is nothing that stands out as a life-threatening condition and she has grown from her original 4 pounds, six ounces and 19 inches long to her current size of 16 pounds, 10 ounces and 25 inches long! She is happy and stable. Despite her trach, she is learning to vocalize. Despite severe developmental delays, she is learning to roll and prop sit, reach out and grab toys, hold objects, recognize and appropriately react people and familiar surroundings. She watches us attentively, and follows objects with curiosity and interest. She is, as I like to say, redefining 'incompatibility with life'!

And now, she has beaten those horrid statistics of trisomy 18 children - she has made it to her first birthday!

Although Rebekah's care has been decent, my birthday prayer for her is that doctors and medical professionals will now start agressively treating her as a child full of life, not as a child doomed to die at any minute! It was only this week that we finally got her into a local pediatric ENT to evaluate her trach and ears. Previously, her trach was being managed by pediatric surgery, despite our request time and time again for an ENT that would manage infant tracheostomies. We were told there was no one that would manage it (locally) and no reason to go elsewhere. We were pretty much left to rely on the medical equipment provider's Respiratory Therapist for information on how to manage her trach, and told to come back in a year for the trach evaluation.


Do you know what the ENT said to us when we went in for Rebekah's evaluation with him? "I have never heard of Rebekah's case until now. We handle pediatric trachs all the time, and get referrals from pediatric surgery constantly, for much less complicated issues. With Rebekah's medical history/condition, I do not understand why she was never referred to us. She should've been followed up by an ENT since her tracheostomy." Well, I do not understand either!! And it makes me so angry that Rebekah does not always get treatment that is appropriately aggressive and proactive. And I am so happy to have found this doctor because I know he will do his best to help her and not to hold her back. We asked him point-blank - 'are you willing to manage Rebekah's trach?' His ending comment to us was that he is "very happy to manage Rebekah's care." He has scheduled us to come back for a complete ABR next week, and we will be scheduling an OR visit soon to have her sedated for a complete look at her ears and airway system. This is exactly the kind of proactive care that Rebekah deserves!

So, after a year of ups and downs, hospitals visits, undefined illnesses and lots of drama, I am seeing milestones that I never thought would come!!
  1. Rebekah's First Birthday;

  2. Media coverage that will hopefully open the door so that we can educate more people (especially the medical community) about trisomy 18/13;

  3. A medical specialist happy to take on Rebekah's 'complicated' care in a proactive manner!
What a grand birthday it is! Thank you, Lord, for holding us up through it all and being faithful to provide what we need!

Monday, April 5, 2010

First Birthday Celebration Invitation



On April 17th, we will be throwing a party at our church for Rebekah's first birthday (which is actually 4/21). Because I am budget-conscious and, well, a really bad procrastinator and lazy when it comes to mailing things, I created Rebekah's birthday invitation on facebook about a month ago and never sent the details to any of our dear friends not on facebook! (I do have to admit that I created and sent a picture card invitation to all of her medical community contacts, but that is because I REALLY want them to come and see that our daughter is REBEKAH and not just a TRISOMY 18 statistical number).

But life happens... Rebekah had RSV, then crazy school schedules for the kids, traveling, an ER trip... So I have spent the last 2 hours trying to create a late evite invitation for her party, only to be stumped with limited text description and picture size! UGH!! I am posting the complete invitation here to the blog so I can link to it from the evite. If you see it here, and not in facebook or an evite email, please make sure you go to the evite to RSVP so I have an accurate headcount. And for my family and friends receiving this late - well, that's just me, what can I say! We know you've heard that this event is coming. I love you all and hope you can join us for this celebration, so don't get hung up on a late electronic invitation!

EVITE LINK TO RSVP (but please read all the details below because it doesn't fit on the evite!)

YOU ARE INVITED TO THE BIGGEST BIRTHDAY PARTY OF THE YEAR!

(Well, at least in Simpsonville, SC!)

Rebekah Faith Budd,
born with full Trisomy 18 on 4/21/2009,
is redefining "Incompatible With Life"!


Date:
Saturday, April 17, 2010
Time:
1:45pm - 4:30pm
Location:
MPAC Building @ First Baptist Church Simpsonville
Street:
East Curtis St & College St
City/Town:
Simpsonville, SC



SUMMARY:
Rebekah Faith Budd was diagnosed prenatally with trisomy 18 and never expected to live. (See bottom of this post for more info on trisomy 18). We prayed, with many others, that our little girl would defy the odds and would thrive, but more importantly, that her life would have a greater purpose!

She has now made it to a tremendous milestone - her FIRST BIRTHDAY! This is a day too many families of trisomy 18 kids never get to celebrate. So we want to celebrate BIG and celebrate in honor of all the T-18 kids out there. And we want to hear all of the ways Rebekah has blessed the lives of those around us. So you are invited to celebrate with us, and help us document why these children should be given a chance!

And if you have not met this little bundle of joy yet, you will not want to miss this opportunity to see her and several of her special T-18 friends who will be celebrating with us!

PARTY DETAILS:
Sign In - Please try to arrive between 1:40-2:00 to 'sign-in' for the party! We want to make sure we have an accurate account of who attended!

PROGRAM -
- On-Going Slideshow of Rebekah's 1st year.
- Welcome and opening words
- Rebekah's Story / Testimony
- Update on the World of Trisomy 18
- Introduction of Guests of Honor - several T-18 friends and those from the medical community involved in Rebekah's care who are attending
- A slide show tribute to our T-18 "angel" friends
- A few words from Pastor Randy
- Blessing for Rebekah and her T-18 friends
- Cake and light refreshments served
- Open Mic - an opportunity for anyone to share a few words about how Rebekah's journey has impacted your life. Share a favorite verse, quote or poem relevant to this occassion! For those that cannot attend, we will read off words of encouragement that we have received. This will be taped so that we can show others that these children are worth saving!
- Closing remarks and thank you's
- Balloon Release by all guests attending

GIFTS - YOU'RE PRESENCE IS OUR PRESENT!
Because of Rebekah's trach, g-tube and physical/developmental uniqueness, we will have a Wishing Well in lieu of gifts. This will help us to purchase items specific to her needs, including specialized and therapeutic equipment not covered by insurance. We also want to create information packets for the local medical community to educate them on the current world of trisomy 18.
But please know, your presence is our present! We expect no other gifts. Please just come and celebrate this amazing little girl with us!

RSVP
Please RSVP by April 10th and comment on total guests attending so we can order enough cake!
If you cannot attend and would like to send a birthday card, please send those to:
Rebekah Faith Budd
128 Horsepen Way
Simpsonville, SC 29681

THANK YOU TO EVERYONE FOR SHARING IN THIS VERY SPECIAL EVENT WITH US! WE THANK YOU ALSO FOR YOUR CONTINUED PRAYERS AND SUPPORT!

LOVE,
THE BUDDS
Susan, Michael, Elijah, Jeremiah, Isaiah, Josiah & Rebekah

WEBSITE LINKS:


TRISOMY 18 BACKGROUND
Trisomy 18, Edward's Syndrome, is a chromosomal defect in which there is an extra 18th chromosome in every cell of the body. The effects of an extra 18th chromosome are usually a lot more life-threatening with more critical birth defects than that of the more known Trisomy 21 (Down's Syndrome). Because of the prognosis, it is deemed "incompatible with life' and many medical professionals encourage women to terminate their pregnancies early or deny/fail to provide aggressive medical treatments.

Many different statistics are posted regarding life expectancy, but the fact is that most babies die before they are born (statistics say anywhere between 50-90%) and most of those born alive die by 2 weeks old (up to another 50%). Few make it to the milestone of their first birthday, and of those that make it that far, life expectancy remains unknown due to their medically fragile nature.

Friday, April 24, 2009

Welcome to the World, Rebekah Faith Budd!


Trying to recreate the day since I couldn't blog it at the time. Most of the following is based on my facebook updates during and after induction/birth. Enjoy! It's quite a roller coaster ride...

Monday, April 20th @ 6am
- Made it to the hospital for my induction. Our friend, Natalie, organized an all day prayer vigil for us at the hospital. There will be people praying there every hour from 6am - 8pm. We've already been greeted by some of them. What a total blessing! Thank you everyone for loving us this much.

4/20 @ 7:38 am - Finally got connected, here's the scoop - I am in 436 at St Francis. I love you all but please don't just pop in. I need to try to sleep some. Michael will give hourly updates to any prayer warriors joining the prayer vigil in the 4th floor lobby and we will try to keep my facebook status current. As of 7:30, I have my IV in (after 3 tries - can you say ouch?) but the pitocin hasn't been started yet.
4/20 @ 10:18 am - This is Michael updating for Susan. Rebekah is showing a little distress during contractions, so our wonderful nurse Julie is spending a lot of time watching. The dilemma is pushing labor faster to get it going, but we have to watch the stress on the baby.

4/20 @ 11:29 am - PTL! Praise the Lord!! Baby Rebekah has stabilized and seems to be handling contractions much better. The heart decelerations seem to be due to cord compression, which is better than the alternative. The Pitocin has been increased to help move things along. Susan is resting with stronger contractions. Thank you for your many prayers. God is Great! Michael

4/20 @ 2:35 pm -Well, i've been on pitocin since about 8am and I've only dilated to 1cm. The contractions are coming about every two or three minutes but I am not progressing because her head is not low enough to apply pressure to my cervix. We can't break my water yet either because there is too much risk for cord prolapse. So the plan is to keep this up for another few hours then cut off the pitocin and let me eat/sleep then try again tomorrow so Rebekah can get a break from the contractions. C-section not really necessary since Rebekah is doing well. I think maybe God is laughing at how we humans like to be in control. It just might not be best for her to be here today! My brother says he would expect Susan's daughter to be late. :-D Will update in a few hours when we hear from the doc again.

4/20 @ 5:20 pm - Susan is still only at 1 cm...due to risks they don't want to break her water. So she will probably be taken off the pitocin and start over in the morning...unless something really gets moving in the next hour or so.

4/20 @ 6:06 pm - We stopped the pitocin around 5pm to give Rebekah and me a break. We'll do a prostaglandin gel tonight and start pit again at 6am Tue. Since stopping the pitocin, Rebekah had one major drop/stop in heart rate, probably related to rolling onto her cord. The cord is 2 vessel instead of 3 (normal), so cord compression is a much more critical issue because there is less oxygen flow to the baby.

Tuesday, 4/21 @ 6:45 am - cervadil last night - didn't do too much. pit just started again. but i am not liking the way her heart rate keeps dipping this morning. shift change coming up at 7 - hoping the next nurse will take more interest in watching the heart rate.

4/21 morning - Isaiah was in tears this morning at preschool...he wants his mommy. The boys were all sad to go to school today but we wanted them to keep their normal routine until something happens.

4/21 @ 9:30 am - Waiting for doc to come out of surgery and see if anything is happening. lots of back labor (and pain) today on lower level of pitocin, so i am hoping we are making progress. Rebekah seems to be doing fine as long as i am on my side.

4/21 @ 1:52 pm - Susan has been asleep for a couple of hours (narcotic induced), while the Pitocin was raised to 22. She has progressed to 2 cm and her contractions seem to be getting worse. Rebekah will be born whenever God decides. Perhaps it will be today. Thank you for your prayers. Michael

4/21 @ 3:09 pm - Epidural: 2 to 3 cm. Will post again soon. Michael

4/21 @ 4:20 pm - Susan is 4 cm dialated. A little bit ago, Susan's blood pressure dropped (common side effect of an epidural). This caused Susan to feel nausea and light headed. She turned an interesting shade of gray. The baby's heart rate also started to drop. The staff put Susan on oxygen and gave her a shot of ephedra. Susan and the baby are back to doing great. Now we wait some more.

4/21 @ 6:14 pm - water broken, I was close to 5. Rebekah tolerating labor well. Will be rechecked at 6:30. Boy, am I hungry!

4/21 @ 8 pm - Susan was just checked and she is at 6 to 6.5 cm. So that's progress. Please pray for an acceleration in dilation. posted by Amy

4/21 @ 9:01 pm - Rebekah Faith Budd was born at 8:27 PM. She weighed 4lbs. 6oz. and is 17 inches long. Her heart and lungs are working and she is in good shape. Praise the Lord!!!!!

4/21 @ 11:03 pm - Rebekah is experiencing some episodes of apnea. She simply forgets to breath unless she is stimulated. This is causing Susan Michael to have to think about some difficult decisions regarding how much medical intervention is appropriate. Please pray for Susan and Michael's discernment and the wisdom of the medical staff. Posted by Amy

4/21 @ 11:05 pm - Rebekah is simply beautiful. She continues to touch everyone here at the hospital who meets her. She is currently having her first bottle and getting her picture taken. Posted by Amy

4/21 @ 11:14 pm - Rebekah is experiencing bouts of apnea. She simply forgets to breath unless stimulated. This is causing Susan and Michael to have to consider some difficult decisions about how much medical intervention is appropriate. Please pray for their discernment and for the medical staff's wisdom and that God's hand be on them all. Susan and Michael would like to at least allow Rebekah to meet her brothers in the AM

Wed 4/22 @ 12:36 am - Rebekah has a long road ahead. Her apnea is pretty bad and she turns purple when she sleeps. Tonight she'll be in the nursery being monitored on an apnea machine and stimulated to breathe if she stops. We will not do resuscitation. We very much want the boys to meet her in the morning. On the positive side, she is gets plenty of oxygen when she is breathing, and she is actually managing to take a bottle.

4/22 @ 8 am - Rebekah made it through the night! She breathed on her own and fed several times. Her heart rate did drop after one of the feedings, but the apnea monitor has not gone off - PTL! We will keep her in the NICU nursery for a few days, so we need to limit visitors until she hopefully recovers from 2 days of labor and gets stronger. Keep praying! Love, The Budds

4/22 update from a friend for me -
When she goes home they will be sending her with an apnea machine. She ate more than was expected today. Her apgar scores were higher than normal
for a child with T18 (4/7). Michael said...for a child with T18, physiologically she is all there!
That means that a lot of the physical problems they were expecting aren't evident.
The neonatologist said he could hear no evidence of a heart murmur....
Our God is SO GOOD! Keep praying, her road ahead is still a long one...
but be sure to rejoice and thank God for the miracle He has already provided!

4/22 @ 10:20 pm - Rebekah had a GREAT day today! She managed to take an adequate amount of formula by bottle every 3 hours. This alone for T-18 is AMAZING! She has also managed to put out dirty diapers all day, so all the 'plumbing' is working. Tomorrow we go to apnea machine and cpr training. She made her first hurdle - the first 24 hours!

Wed, 4/23 @ 6:45 am - I am crying tears of joy this morning. I checked on Rebekah in NICU and she had such a great night. She regulated her temp all night, had no bouts of apnea, and managed 3 feedings over 20cc by bottle. This is unbelievable! Most t-18 babies need feeding tubes to supplement, but she is managing to get it down on her own. Now I just need to learn the NICU nurses' technique to feeding so I can do this at home!

4/23 @ 3:56 pm - It has been a roller coaster day for me emotionally between hormones, pent up emotions, and alarm scares with the heart beat/apnea machine. But Rebekah is doing better than anyone here ever expected. I just want everyone to know that we are deeply humbled and thankful for the support and prayers. We have some rough days ahead, but I know our prayer warriors are behind us. Rebekah isn't just our baby anymore. :-) ♥

4/23 @ 6 pm - I was discharged from the hospital and the boys are anxious to see mommy after being gone from home for 4 days! We went to NICU to feed Rebekah and say goodbye. It was very tough leaving our baby there, but we think it will give her the best chance of thriving. So we left the hospital last night glum also because we couldn't get her to take her 20cc of formula and she is supposed to increase to 30cc per feeding by tonight. Her heart also kept decelerating during feeding which makes us nervous. They are starting her on bili-lights to to counteract the beginning of jaundice before it gets too bad.

4/23 @ 9:31 pm - This evening was one of the hardest in my life. I had to leave my baby girl at the hospital and go home. Michael and I left in tears after one last kiss. But we know that her staying in NICU through the weekend will help strengthen her AND give me time to recuperate so I can take care of her. Two days of labor then a whirlwind of doctors, visitors, etc has caught up and I am physically and emotionally spent.But I believe in the promise of Isa 41:10 -
fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Can't wait to see my baby again tomorrow! She will be under bili-lights tonight for jaundice and must increase her formula intake by 10cc per feeding to avoid a feeding tube. So pray hard!