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.

The Great Confession

I recently bought a book from SOFT - Support Organization for Trisomy 18 and 13 and Related Disorders called 'Care of the Infant and Child with Trisomy 18 or Trisomy 13' published just last year and based on compilation of recent data from trisomy children. According to the book, 90% of (T-18) pregnancies end in stillbirths or termination. Of those that survive, only 50% make it to one week old and only 10% to 1 year old. 90% of T-18 children have major heart defects, and at least 50% have kidney defects.

Tuesday evening, April 28, will mark Rebekah's second big milestone - the one week mark. I wait in eager anticipation knowing that she'll make this one!

We know we have a long and difficult road before us. Rebekah failed her newborn hearing screen, is on a heart/apnea monitor due to low heart rate and shallow breathing, and has a club right foot. She acts like a preemie in many ways, even though she was born at 38 weeks. This is most likely due to the chromosome disorder and the preemie like behaviors may not be something she ever grows out of. However, she is simply gorgeous and looks like a little China doll! She has no audible heart murmur (implying that any VSD seen in the ultrasounds is most likely gone), and her renal ultrasound showed TWO kidneys (we could only ever see one in the prenatal ultrsounds). Although the doctor thought her rectum might be superficial at birth, I can assure you it is working just fine and puts out many a poopy diaper all day long. Her esophagus is intact, she can suck long enough to take her food, and although she appears to have the typical T-18 clenched fists, she does open them and extend her fingers quite frequently. I do believe God has answered many prayers regarding Rebekah and has provided us with some of his miracles! She is a miracle child to behold! And she has even softened the hearts of several medical professionals who now see her as 'viable and living', not 'incompatible with life.' Praise God for his this gift!

Rebekah came home with us Monday afternoon April 27th. She is still a little below her birth weight (by 5 oz.), but she is eating fairly well - consuming up to 40cc per bottle by the time we left the hospital. We had the feeding tube (gavage feeding through the nose) removed and will only insert it if we cannot get at least 30cc by mouth during a feeding. We have been trained in infant CPR, gavage feeding and apnea monitoring. We have home health care set up for their first visit Tue and her first pediatrician appt on Wed. We also have an agreement with the NICU that we can readmit her should the monitor go off excessively or we fail to feed her enough. Other than being sleep deprived, we are probably as prepared as we can be for what lies ahead.

Despite all of these great joys, praises and milestones, Michael has had to watch me be a crying basket case over the last 2 days. He said I've come this far in sharing about Rebekah, so I need to be honest so that if any are chosen to follow my footsteps on this tough journey, they would know the full range of emotions that will be felt. Between my raging hormones, and the terrible prognosis of full trisomy 18 children (in terms of long term viability and capability), it was, quite frankly, a very bitter sweet day for me.

On the praise side, I am incredibly blessed and praising God for this time we have with sweet Rebekah. Oh how her brothers love her and pray for her! How tenderly Elijah hugged and kissed her today! Even Josiah was warming up to the idea that there was no longer a baby in my tummy but now one in my room! My prayer for sweet Rebekah all along has been that she would make an impact in this world - that her life would have meaning and purpose, and there is no doubt this is true! I bet there are a thousand people praying for this precious creation of God! I have received countless emails and facebook responses saying how this church and that church are praying for her, how individuals have been impacted by our story and brought to their knees in genuine prayer as they have never prayed before. I am watching my own kids grow in their faith. This is extremely humbling and unbelievable to be a part of such incredible 'heart' work! God is good indeed for answering so many prayers and renewing faith through one little tiny baby.

On the bitter side, I have spent the last two days as a complete basket case. I have not cried this much in my whole life, and it isn't all tears of joy. There are tears of fear, stress, doubt, loss of freedom, and even things I can't put into words because I am so ashamed to think them... I feel completely overwhelmed and I know my life is going to be very different from now on. I KNOW if won't always be true, but I currently feel like a prisoner to this little babe. I worry that I won't be able to meet the needs of my other children as I attend to her. I wonder how I will get it all done - the cooking, the cleaning, the homework, the normal household stuff. Then after all of these feelings (especially after praying for so long for time and hope) there is the guilt. How could I think these things about this child... the one I LOVE with all my heart and have prayed about for months? the child that Jesus loves and has entrusted to my care? The child that so many of you love too, even though you have never met her in person?

A friend of mine sent me a message the other day and said "In all this whirlwind of Rebekah and the birth . . . how are you doing? I think about how you'd probably like someone to take you into their arms and tell you everything is ok. You must be so weary." All I can say is she was right on the money!

So that is my confession to you. I figure if we are sharing this journey, then I wouldn't paint it all roses but give you the grim reality of it all. Oh, my faith is still strong, our resolve to be Rebekah's champion is firmly in place, but I am just a Mom and an imperfect one at that. Although I believe all of the scripture I quote and know that my strength comes through the Lord, I am still full of doubts, fear and resistance to this path that God has placed me on.

Then Michael reminds me that Holland is a nice place too.

Day 3 / 72 hours

Friday, April 24 @ 9:30am - Well, Rebekah has exceeded our expectations! The wonderful NICU nurses were able to increase her feedings to over 30cc and she had no apnea episodes during the night! According to Dr. McKay (neonatologist), her urine test showed that her kidney was functioning properly and making good urine. She is scheduled for a kidney ultrasound so we can see what shape her kidney is in and if the second one exists. We stayed through her noon feeding and learned the secret to the increased feeding amounts... a slit nipple! Turns out Rebekah can handle the faster flow and got 30cc down for us in 20 minutes. You go girl! The reason why all of this is important is that if it takes her 30+ minutes per feeding, she is actually burning more calories then she is consuming. So we were also cautioned not to overstimulate her and use up those precious calories. Left the hospital in very high spirits!

Friday, April 24 @ 9:30 pm - What a roller coaster ride of a day! Rebekah's 6pm feeding didn't go so well for the nurse. Rebekah only ate about 20cc. We fed her for her 9pm feeding and tried using a different type of bottle used for preemies called the Habersham method. It's supposed to flow very easy with any kind of compression on the nipple (versus sucking action required on typical nipples). Michael and I had no luck getting her to eat. Not only that, but her heart kept decellerating again during the attempted feeding. It is very nerve wracking as a parent to watch the numbers drop and the alarm go off for those few seconds before her heart seems to correct itself. We consented to using a feeding tube because we simply have to get more calories into her if she is to have a fighting chance of getting stronger! We know the digestive tract is working otherwise.

On a positive note, the boys visited with us. Elijah got to spend some very special and tender moments with her. Oh how I wish I had my camera with me, but Michael had taken it to the car with the other boys! He loves his baby sister so much and is so sad she cannot be home with us.

The nurse explained that Rebekah, though technically at 38 weeks is full term, is acting like a preemie. Preemies typically respond to overstimulation like Rebekah and will have the same type of heart decellerations and eating habits unless kept in an isolet and given more quiet time.

The question none of us can answer is whether Rebekah is acting like a preemie because her development is behind or because the T-18 has made her 'incompatible with life'. So we struggle with making decisions - what is best? Do we assume she is just behind developmentally and give her every moment in NICU to grow and stabalize? Or do we bring her home and spend every precious moment we could have hugging on her and loving her? So we go to bed tonight with apprehensive hearts knowing that each kiss and hug and minute could be the last.

But, oh, what a blessing she has been to us already! We are so happy that God has entrusted this sweet angel to our care and love. How we cherish her and lift her up in prayer! As Michael said on the way home from the hospital, Rebekah has made a wave in the world already... not just a ripple, but a wave.

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!

Let The Countdown Begin!

We had a phenomenal doctor appt yesterday! So incredible, in fact, that I can hardly contain my excitement! But first, I need to recap the last month and a half so you can appreciate the significance!

About 6 weeks ago, Rebekah's measurements were taken and she had gained almost a pound since the prior 3 weeks. This was great and we were excited! But the next measurements that came 3 weeks after that (about 3.5 weeks ago) were much different. She had only gained about 5 ounces, my amniotic fluid looked like it was dropping significantly, and we went through a short period of lost hope.

We have had 3 ultrasounds in between just to look at her vitals and see how my fluid levels were doing. Although the amniotic fluid came back up, vitals looked good, movement good, and we even saw her practice breathing each time, we still had no idea how yesterday's growth measurements would go. (They only do them about every 3 weeks since there is a 15% error rate and measuring week to week might give you an error versus an actual growth change.)

God is faithful and good! In the last three weeks, Rebekah has gained almost 2 pounds! She is now approximately 4 lb 14 oz! That is an incredible gain over the last few weeks! I have been doing a happy dance since then! So we have confirmed the 4/20 induction date for next Monday, and I wait for both the shortest and longest week of my life with nervous anticipation. I have released many of my fears and anxieties to God, and I am trying to enjoy this last week of pregnancy instead of freting over the many possibilities that the future holds.

I am so grateful for the many that are constantly lifting us up in prayer. I spent a lovely time last night praying with some new friends for Rebekah, I was blessed with prayer for our family and Rebekah during my MOPS meeting this morning, I am constantly receiving facebook messages and emails from those praying for us, and I have a great friend arranging for an hourly prayer group at the hospital on Monday during the induction and birth. WOW! It is such an awesome gift to be bathed in prayer and covered with love from my Christian sisters and brothers. Although I have cried much over the last 5 months of my life, I wouldn't trade this experience for anything and I have been thanking God that he has allowed me the privilege of being the mother of this very very special child. I pray daily that she will continue to touch lives, strengthen the faith of many, and help be a catalyst to lead the lost to Jesus.

So let the countdown begin, whatever is may bring!

Welcome to Holland

Another appt today at the OB office. Our 'BPP' (bio-physical profile) was pretty much the same as last Friday. Rebekah is practicing breathing, amniotic fluid level was 11.1, heart rate varied from 125-142, she was moving around and looking pretty good overall. She is such a fighter and is doing so much better than anyone ever expected. I do believe the prayers of so many are being heard! I do believe we will get to see a miraculous birth on April 20th.

Since my specialist set the induction date of 4/20, we had to confirm this with the regular OB office. Turns out the specialist will TRY to be there, but can't commit. In an attempt to be light-hearted, Michael tells the OB since he is the one at the hospital on 4/20, he drew the short stick. :-)

I think the OB was struggling with the whole situation. It was the first time he's seen us this pregnancy so as he reviewed the file, he realized what he was up against. He has been in practice for 30 years, so his knowledge and familiarity with trisomy 18 are very old-school. He also clearly stated that it wasn't situations like this that made him become an OB in the first place (after all, being an OB is about bringing life into the world, right?). From his viewpoint, all trisomy 18 babies are not viable. So as we're reviewing the birthplan wishes, we get into the discussion of an emergency c-section. Let me preface by saying that we plan a vaginal birth but, if I am not too far along in the labor process and she shows signs of problems during labor, we want to consider an emergency c-section to possibly maximize time spent with her.

Here we go again but with a slight twist on the conversation... To the doctor's credit, he was trying to be as nice and compassionate as possible. But lets face it, talking about uncomfortable things often makes people say stupid things. This was one of those moments.

He actually tried to dissuade us from considering a c-section because (drum roll please)... we have a beautiful family and four wonderful healthy kids at home and it would be an awful tragedy if something bad happened during a c-section and I died. WHAT?!?! I was quiet and let Michael do all the talking, which he did a great job defending our choices/decisions. I believe the Holy Spirit was leading me to keep calm, quiet, and compassionate towards the doctor at that moment. But imagine being put on the defensive and have the doctor almost threaten your husband with your possible death in a c-section!

Afterwards Michael asked why I didn't make the argument about elective c-sections (as I had done before). Honestly, I don't know other than I was meant to stay silent in the moment.

So this battle for sweet Rebekah's life goes way beyond this one child. This is a battle for trisomy babies to be treated as human beings, to be given an OPPORTUNITY to survive. Don't think they would make that kind of argument for one second for a 'normal' baby that experienced distress during labor!

Anyway, as 4/20 is only 12 days away (YIKES!), I am getting a little aprehensive about everything. A friend of mine sent me the analogy below. This is how I like to view all of those bumps and curves in life. They may not be what we plan for ourselves, but focusing on the lost expectations instead of the possibilities and beauty in what has been given to us can make for a bitter, miserable life. I choose NOT to live that way. Every day is a blessing, no matter what...

this analogy written by a mother of a child with special needs...

WELCOME TO HOLLAND

I am often asked to describe the experience of raising
a child with a disability--to try to help people who
have not shared that unique experience to understand
it, to imagine how it would feel. It's like this...

When you are going to have a baby, it's like planning
a fabulous vacation trip--to Italy. You buy a bunch
of guidebooks and make your wonderful plans. The
Coliseum, the Michelangelo David, the gondolas in
Venice. You may learn some handy phrases in Italian.
It's all very exciting.

After months of eager anticipation, the day finally
arrives. You pack your bags and off you go. Several
hours later, the plane lands, the stewardess comes in
and says "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland? I
signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've
landed in Holland and there you must stay.

The important thing is that they haven't taken you to
a horrible, disgusting, filthy place, full of
pestilence, famine and disease. It's just a different
place.

So you must go out and buy new guidebooks. And you
must learn a whole new language. And you will meet a
whole new group of people you would have never met.

It's just a different place. It's slower-paced than
Italy, less flashy than Italy. But after you've been
there for a while and you catch your breath, you look
around, and you begin to notice that Holland has
windmills, Holland has tulips, Holland even has
Rembrandts.

But everyone you know is busy coming and going from
Italy, and they're all bragging about what a wonderful
time they had there. And for the rest fo your life,
you will say, "Yes, that's where I was supposed to go.
That's what I had planned."

The pain of that will never, ever, ever go away,
because the loss of that dream is a very significant
loss.

But if you spend your life mourning the fact that you
didn't get to Italy, you may never be free to enjoy
the very special, the very lovely things about
Holland.

written by Emily Perl Kingsley