Happy 3 Weeks, Rebekah!

5/11/09 – DAY 21

5/11 11:30 am - The baby dedication was wonderful and we are so happy Rebekah got to go! Wanted to give an update on our baby but I have to say first that I am rather discouraged and running on an empty tank from sleep deprivation. The caffeine does not seem to be helping and I feel like she is having more severe spells that, short of a ventilator, are not going to stop. God has been so good to give us these 21 days with Rebekah.

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Rebekah continued to have 'spells' all day. I made sure each of the boys had some time with her.


Isaiah and Rebekah. Josiah couldn't wait to hold her too.


Jeremiah holding his sister. He played with her hands, looked into her eyes, and enjoyed loving on her. Josiah came and gave her some kisses too.

Elijah loves and adores his baby sister. Noticing a trend to the pictures? Josiah was just patiently waiting his turn to hold Rebekah.

Finally Josiah gets his turn.

5/11 6:10 pm - Isaiah 41:13 (NIV) - For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.

5/12/09 – DAY 22 - HAPPY 3 WEEKS, REBEKAH!

5/12 7:42 am - Psalm 30:5(b) Weeping may last through the night, but joy comes with the morning. Happy 3 weeks, Rebekah!

I am sorry that I cannot write a thank you note to all of the people who have been caring for us and lifting us up in prayer. I sent this thank you email below to my church’s MOPS (Mothers of Preschoolers) group, but it is a thank you note that really applies to everyone who has reached out to us.

Dear MOPS sisters,

I was greeted this evening with Natalie Evans bearing gifts of diapers and formula for Rebekah. WOW! What a surprise! I don’t know if Natalie noticed, but I was tearing up and really touched by this gesture of pure love.

Rebekah truly is a testament to the power of God and answered prayers. I pray that each of you will be able to meet this very blessed child and see in person the handiwork of God. Being her mother is truly an honor and a privilege.

I thank Jesus for each of you daily. Thank you so much for all of your love, support and prayers. I cannot express how deeply I appreciate each and every one of you, and I am humbled each time I receive another reminder of how many people are caring for us during this journey we are on. Remember that each of you are fulfilling your own calling with each gesture of love and support that you show another. Gal 6:2 says ‘Carry each other's burdens, and in this way you will fulfill the law of Christ.’ You are all truly a testament to this!

In Christ’s love,

Susan Budd

Here are the diapers and formula we received for Rebekah.

Eph 5:1-2 "Be imitators of God, therefore, as dearly loved children and live a life of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God. "

Acts 20:35 "In every way I've shown you that by laboring like this, it is necessary to help the weak and to keep in mind the words of the Lord Jesus, for he said 'It is more blessed to give than to receive'"

Matt 25:40 "I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me"

Galatians 6:2 "Bear one another’s burdens, and so fulfill the law of Christ."

Prov. 17:17 "A true companion is loving all the time, and is a brother that is born for when there is distress."

Down the Road of Bittersweet

Please go see the video on the Prenatal Partners for Life website, its worth the time to view it.

Down The Road Of Bittersweet
We had some good news and some bad news on a cold November morn
The test confirmed that we were parents, but there was something more
Our little boy had complications, and we were frightened as could be
But we decided to go walking down the road of bittersweet

The next nine months we grew together, somehow closer than before
And our faith began to blossom into something more
We would hold each other close and pray, then cry ourselves to sleep
We knew that God was walking with us down the road of bittersweet

Jesus, take my hand and walk beside me
And make my footsteps firm beneath my feet
I know You’ve gone this way before so guide me
I’m not alone as I go walking down the road of bittersweet

The room was filled with apprehension on the day that he was born
But when I took him in my arms I knew there was so much more
There was a bond of love between us, and I was never more complete
I never knew I’d find such blessing down the road of bittersweet

The doctor said we may not have much time before we’d have to part
So I treasure every moment deep within my heart
Soon we’ll have a little angel, praying for our family
I’m just glad I got to meet him down the road of bittersweet

Jesus, take my hand and walk beside me
And make my footsteps firm beneath my feet
I know You’ve gone this way before so guide me
I’m not alone as I go walking down the roadI’m not alone as I go walking down the road
I’m not alone as I go walking down the road of bittersweet

Words & Music by Karl Kohlhase© 2006 karl kohlhase

Written for Prenatal Partners For Life

STORY BEHIND THIS SONG...
I was asked to consider writing a song for Prenatal Partners For Life, a support ministry for expectant parents who have had the frightening news that their little one may not be healthy. After reading some of the moving stories on their site, I penned "Down The Road Of Bittersweet". I hope this song gives a little comfort and consolation to those whose hearts have been broken, as well as courage to those who feel intimidated by the prospect of carrying their pregrancy to full term after such devestating news.

Days 17-20: ER Trip and Mother's Day

These are my facebook status messages and some comments/pictures here or there covering the period of Day 17 – 20 (5/7/09 – 5/10/09): Rebekah’s first ‘emergency room’ visit and her baby dedication. I want to chronicle our journey here on blogspot so that future followers of Rebekah’s journey here on earth can experience the roller coaster ride we are on. We thank God for every day of her life.

5/7/09 - DAY 17




Rebekah - 17 days old - I am so loving all the pink in our house!



5/8/09 - DAY 18



Susan & Isaiah at Isaiah's preschool (Calvary Baptist) for a Mother's Day program.
I am really struggling with the depth of Rebekah's care versus caring for our other 4 wonderful children. There is guilt in how much time Rebekah is needing from Michael and me and how that takes away from the rest of our family time. This is a guilt that any person going through this experience is going to feel. I thank God that I am blessed with a wonderful support system. I have several nursing friends and one of them was able to come to my house to watch Rebekah so that my mom and I could enjoy Isaiah's preschool program.

5/8 5:10 pm - Rebekah was 4lb 8.5 oz this morning, another couple ounces up since her Wed doctor appt! And she is on her 5th day of no N/G tubes! I mentioned yesterday both the geneticist and pediatrician were very surprised at her great appearance and progress. But despite doing well on all other fronts, her oxygen saturation levels and bradycardia (low heart rate) attacks today have been numerous and scary. We started Zantac to see if it is reflux related - a common 'preemie' problem that causes similar behavior. Please pray that this is a simple fix for a complex problem because I am currently afraid to leave her side. She has had a least 5 dusky spells in the past 5-6 hours. Glorious God, how I celebrate the fact that my eyes have never seen, my ears have never heard, and my mind has never conceived what You have prepared for me and all others who truly love You. Help me to also understand that this awesome plan is revealed to me by Your Spirit. 1 Cor 2:9

5/8 7:05 pm - OK Need prayers now. Doctor recommends taking her to the hospital. We'll be leaving for GHS shortly and need to make some decisions on the way there. They will probably want to admit her. Her oxygen is dropping very erratically, but something is different because she is not having the heart deceleration and decreased breaths per minute at the same time.

5/8 10:13 pm - Rebekah is at the hospital. They have done some blood work and other tests and are waiting for results. She is on oxygen and her oxygen levels and breathing/pulse still fluctuate. She also cried a lot so is exhausted which makes the apnea worse. She will be kept overnight for observation and we will be staying with her. We appreciate everyone's continued prayers.

5/8 11:23 pm – Post from my friend Michelle who came to the hospital for support: I just left the hospital. They have admitted Rebekah for the night to observe her. She had a bad day today with several episodes where her O2 levels dropped VERY low and it was difficult to get her to come out of them. She is currently doing very well, but her O2 is being administered at a level that is more than twice what she has normally. The plan is to wean her down overnight and monitor her to see if she has any more episodes.Please pray for Michael and Susan...they look exhausted...and will likely not get much sleep tonight as they are both staying at the hospital.

GHS ER being hooked to the monitors and IV


5/9/09 - DAY 19

Day 19 - Spent night in hospital's children's floor. Thank goodness we didn't get transfered to PICU! Rebekah getting her EKG. She must've had at least 20 stickers/wires stuck to her poor skin. I think she looks like a little squid.





Get these things off my arm, now! I want to go home!

5/9 3:56 pm - Still at Greenville Memorial Children’s Hospital. Hoping to come home tonight and still make it to the baby dedication. Rebekah has been through a plethora of tests, is on oxygen, and we started with caffeine citrate to help increase heart and breath rates. Waiting for results of EKG and other tests. She seems to be back to having her 'normal' fits of apnea that are easier to get her out of. No more major episodes.

5/9 8:06 pm - We're home! The doctors felt comfortable enough sending us home with Rebekah. She seems to be done with her strange spell and is back to her 'normal' behavior. It will take a few days to get the results from all the tests and to see if the medication helps. Thank you for all of your prayers! God is good, and it is still miraculous that this is the only thing right now that we are having to deal with! Even through all the pokes, prods, needles, probes, strange people, etc, Rebekah still continued to eat like a champ and stay tube-free!

And we WILL be at the baby dedication for the 8:45am service!

5/10/09 - DAY 20

Day 20 - Dressed in her pretty hand-smocked dress for Baby Dedication day!

5/10 7:41 am - Happy Mother's Day to all my friends and family! Today is a great day!

God's Gift

My Aunt Margie's friend wrote this poem for us.


Margie,
I felt this inside me and had to put down in words hope Susan and her family like it.

GOD'S GIFT.

One day a special spirit, that lived with Heavenly Father;
asked if she might go and have an earthly mom and father,
the Lord said "oh, my little one, it's hard to let you go;
but I know of a special set, who'll want and love you so."

"but since you are so special, you'll have to promise this;
that you'll return back home to me, when you feel My angels kiss,"
"I know your earthly mom and dad will hate to see you go;
but they will know I love you, and My love for them will grow.

"I don't know when I'll call for you, but I know that you'll be loved;
but if you get to missing Me, just look for Me above,
I'll always be there with you, from the time you leave My side;
remember that I love you, in your heart I will abide."

"So off you go my little one, you're family waits for you;
and show them how I love them, and that my love is true,"
so on her way she ventured, to meet her mom and dad;
and they knew in an instant, the blessing that they had.

They knew that she was special, and felt their Fathers love;
and thanked Him for this blessing that He sent from up above,
they understand His feelings and knows He'll miss her so;
they know how very difficult it was to let her go.

Now our dear Rebekah, has an earthly mom and dad;
she has brought His message, and so their hearts are glad,
they know their Father loves them, and chose them for this task;
to love our dear Rebekah, there's nothing else He'll ask.

written by: Evelyn Gilmartin
May 8, 2009

Thank you, Evelyn, for your sweet poem and thoughtfulness. Yes, indeed, Rebekah is a gift to us and to many others. She is a reminder of the sanctity of life and that God blesses us, even in the midst of unpleasant circumstances.

Recap of the Last Week and Pics of the Last 17 Days

Here is a recap of the last week - quite a trip! We are learning to take one day at a time...

4/25 - 7:45 am: Rebekah was tube fed last night to give her a chance to rest and build up strength (she can sleep through tube feedings). With having no reserve body fat, she just doesn't have enough energy. But the nurse last night was more positive and explained that she is acting like a preemie and using up energy with the jaundice too, so she thinks once she is through the jaundice, she'll start having more energy. We just have to remember not to let the highs be quite so high and the lows be quite so low!

4/25 - 7:41 pm: I was at the hospital for Rebekah's noon feeding. Not too good. She wouldn't wake up and her heart rate kept dipping below the 90's. Had to tube feed. However, Michael just had the most precious time with her wide awake and alert at 6pm. He got some formula down, the rest by tube. But he felt really good about the visit and loved the tender moments with her. We are fighting for her! Keep praying! :-)

4/25 - 10:22 pm: Didn't want to leave anyone hanging - Rebekah stayed alert and had a bath then a great 9pm feeding - back to 30cc by mouth by Daddy. She just needed some downtime and a spa day. Can't wait to see her tomorrow! Wish a bath would perk me up too!



4/26 - 3:43 pm: Well, little Miss Rebekah Faith has been taking 40cc's by bottle all night and day today! I learned how to tube feed her today because we think feeding will be the biggest challenge. She will probably be released tomorrow evening with the caveat that we can readmit her if we continue feeding issues. But we have to see what her bili level is in the am. She continues to have some heart dip and dusky lip spells but corrects them with simple stimulation. The neonatologist thinks that this is more physiological versus neurological and will get better with maturity. We can't be certain for sure, but PTL for this possibility! The biggest 'risk' factor for a t-18 child is the neurological defects, so it would be wonderful to have this be something correctable.

4/27 - 7:28 pm: Rebekah came home with us today. I will update my blog later to convey the complete status of things and the range of emotions we are experiencing. This is a very scary time, her monitor keeps going off as her heart rate dips during sleep or eating. She failed her newborn hearing screen in both ears too. On the positive side, her renal ultrasound shows TWO kidneys! One is smaller but appears to be functioning. And she is eating by bottle about 30-40cc's. Hopefully we will be able to continue that for the next few weeks. But she is still extremely fragile and every minute is a blessing. If anyone has a small tabletop bassinet type thing, we need something downstairs to keep her in so we don't have to keep running upstairs each time the alarm goes off. I just want to borrow something until we can find our little portable one - it disappeared.


4/28 - 1:45 am: 12am feeding - 45cc! The little slit in the nipple really helps it to go down fast, nice trick one of the nurses told us after lecturing that Rebekah was simply too tired because of all the partying that was going on in our room. Monitor has gone off, oh, maybe 20 times already! Will i ever sleep again? Oh, we learned all the 'tricks' - fingers under chin, squeeze her cheeks, milk the bottle into her mouth even if she isn't sucking, slit the nipple since she seems to tolerate the faster flow. I need burping tips though! She does not want to burp and that is part of what causes her heart decellerations during feeding. Who wants to beat a 4 lb baby in the back to make her burp?!


4/28 - 7:09 am: We made it through the first night! The monitor went off quite a bit, but all is well and she ate between 35-45cc's each feeding! Elijah and Jeremiah were just enjoying her awake time this morning with lots of hugs and kisses. What doting big brothers! Happy one week birthday, Rebekah! Only 50% of T-18 kids born alive make it through this first week!


4/28 - 9:23 pm: Today had ups and downs but Rebekah is still fighting! We have bouts of apnea for short periods of time that are scary then a peaceful hour here and there. Rebekah appears to be on a 36 hour cycle, she eats real good for about 24 hours then crashes for about 8 and we have to tube feed because she won't wake. So i did my first 'solo' tube feeding (thanks Jaime for the help!) and decided to leave the tube in for part of the night feedings so she can rest. Amazingly, I am functioning well on only a few hours of sleep. Michael and I are splitting up the night so we can each sleep half the night (as long as the monitor doesn't keep going off!). Ped appt tomorrow will hopefully help us come up with a solution for the crazy monitor scares. Thanks everyone for keeping us in prayer. We love Rebekah so much and sang happy birthday to her after dinner today. Even Josiah calls her 'my baby'. :-)


4/29 - 11:10 am: Please pray for this one year old boy who was beaten by his mother's boyfriend and is on life support at GHS: http://www.foxcarolina.com/news/19318733/detail.html This just breaks my heart! How can people be so cruel?


4/29 - 9:49 pm: Rebekah is hanging in there. We are having to do about 1/3 of her feeding via N/G Tube because she conks out and won't wake up to eat. But when she is awake during 'meal time', she does great. Our little china doll even gained a few ounces since being home - yeah! Her bilirubin level is creeping up again (14.4) so we have to get it checked again Fri. Praying for a restful night from the apnea monitor.


4/30 - 10:34 pm: I think I can be a NICU nurse now... I am inserting/using a feeding tube (nasal), well versed in apnea monitors now, and tonight we got to add a oxygen &monitor to the fun accessories. I don't know how in the world I'm ever going to leave the house again. :-( It's a little overwhelming, but every day the boys get home from school, they give sweet Rebekah a kiss on the forehead, and I am getting lots of snuggle time. The monitors are a blessing and a curse. We are learning Rebekah's 'cycles' but can't really tell if she is making any improvements or not.


5/1 - 10 pm: OK, today wasn't so bad. I just learned to ignore the monitors and when it is a 'false' alarm. Despite the O2, oximeter, apnea monitor, and plethora of feeding tubes, etc, Rebekah has gained some weight (4lb 1.1 oz when she left the hospital and now 4lb 4oz), color looks good, and she seems stronger and awake for longer periods. I know a lot of people want to meet her, but we need to hold off on visitors until we get some sort of sanity in our house. I am exhausted and cannot entertain a bunch of people, plus Rebekah really needs to sleep between feedings so we can do as much by bottle as possible. She'll make a 'public debute' on 5/10 for a Baby Dedication at Simpsonville First Baptist Church during the 8:45am service. We do not plan on sticking around for the whole service though.


5/2 - 8:40 pm: Day 12 - Rebekah has taken a bottle all day today and had her first real bath. She was wide awake for several periods today and got lots of love from Grandma Budd, Grandma Kraieski, and Uncle Larry. However, she also had several hour-long attacks of apnea that were very unnerving. She continues to be a joy to us, but her fragility is always evident. Despite the hard work, it is a joy and honor to be her mother. I am praying she makes it through the night without any more major attacks.


5/4 - 1:38 am: This is Michael. i just finished another bottle only feeding. Another two and we will have gone 24 hours without the feeding tube. PTL! Rebekah has gained so much strength in the last couple of days that this morning we said she has "started to act like a regular baby"... crying just to be held. I find myself dreaming again. Dreaming of what can be. Dreaming of what God has ordained for this little girl and her doting family (thank you Larry). Praying for God to show us what he wants our family to be (thank you Josh). God's answers to our prayers, to your many prayers, has been "yes". He is able!!! PTL! PTL! I don't know what the next step of this journey will bring, but I look forward to exploring Holland one day at a time. We rejoice in the Lord... he has turned our sorrow to joy... our hope to reality. PTL!!


5/4 - 9:06 pm: Well, we've gone a day and a half without a tube - yeah! And Rebekah is back up to her birth weight! She seems to have a little yellow snot in her nose though - it's not stuffy and she can breathe. So its probably off to the doctor tomorrow before this turns into something her little body can't handle. And guess what, Rebekah's hearing may be affected, but she can definitely hear loud noises. She reacted several times to noises today like a banging plate that wouldn't have made much of a vibration. One of these days (in my spare time ;-) I will update my blog to list all of the little 'miracles' God has given us thus far. It is quite amazing! But we are still in the touch and go stage. I recently talked to a mom that had a T-18 baby that also was 'doing well' but died at 28 days. So we definitely are enjoying every moment with Rebekah, trying not to think too much about tomorrow, and continuously praying for continued answers to prayer.


5/4 - 10:40 pm: Obligatory hospital shots - actually, they've gotten better over the years. It's no longer the baby on tray with a blanket on it. http://www.our365.com/NewbornPortraits/BabyDetail.aspx?BirthId=ade22341-fd58-4607-ad3d-fbbbdd4abbd5. If the website doesn't work, go to our365.com and look up 4/09 births for budd in sc. guest password is G3H0F4Y0W2.


5/5 - 2:27 am: My feeding shift is coming up soon so here I am awake in the middle of the night. I know I have posted this before but I want to post it again for all my new friends or for those who have not watched it. It does a beautiful job of explaining the joy and agony of having a trisomy 18 child. Each day/moment is truly a gift. http://www.trisomy18.org/site/PageServer?pagename=eliotonoprah

Trisomy 18 Foundation: Eliot on Oprah
Source: www.trisomy18.org
"Every child . . . no matter how fragile their life or brief their days, forever changes our world." ~Victoria Miller, Founder, Trisomy 18 Foundation


5/5 - 10 am: Happy two weeks Rebekah!! You are now 4lbs 7 oz (past your birth weight) and you have gone over two days eating without a feeding tube and doing great!


5/6 - 11:42 am: Had several apnea scares last night. We have two doctor appts today (geneticist and pediatrician) and will be getting our referral for the pediatric cardiologist. Will need to talk about caffeine treatments to accelerate her heart more - this might slow down the apnea attacks. On the positive side, she just needs 'stimulation' to come out of them, but we hope that continues as she gets bigger. I just keep meditating on Matthew 6:34:Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.


5/6 - 11:44 am: I am thoroughly enjoying some pink in the house after over 8 years of nothing but blue!! We did not set up a nursery before Rebekah was born because we didn't know if she'd ever get to use it. I have some great MOPS steering friends that are coming Sat to paint the nursery for me! How awesome is that?!


5/6 - 8pm: Rebekah will be dedicated at Simpsonville First Baptist Church this Sunday at the 8:45am service! God is so good! Doctor appts today went great - the pediatrician couldn't believe she was past her birth weight. They expect 'normal, healthy' kids to meet that goal by 2 weeks. He thought it would take at least a month! You go, girl! The geneticist thought Rebekah was in remarkable shape for being a T-18 kid. We're waiting for the pediatric cardiologist referral to try to get her bouts of bradycardia (low heart rate)/apnea. That is our next major hurdle.