The Hospital Journey Begins...

5/21/09 – DAY 31

5/21 12:45 am - For the last 2 weeks, especially the last 4 days, Rebekah has averaged probably at least one 'episode' per hour. We are in the Greenville Hospital PICU and the only intervention so far that we have had was to bump up her oxygen level to 2.0 liters flow (at home we only used .25-.5). They have kept the pressure this high but decreased the actual O2 level to 50%. Rebekah has gone over 3 hours now without incident! This is a positive sign that her 'problem' is obstructive and we will be able to find a manageable home solution for it. (That's from me, not any doctor.) I am feeling pretty positive right now.

5/21 8:30 am - We went 11 hours without an 'event'! PTL! And she did have a minor one around 8am, but it was definitely obstructive and I finally got someone else to SEE that and agree. Still didn't get to sleep though because they won't let me feed Rebekah. The air they are pumping into her nose is supposed to fill her stomach and make it upset so she has been 'fasting' since 8 last night and is not too happy about it so lots of hunger cries all night.



Michael enjoying the cozy hospital room guest bed.

5/21 12:15 pm - Today hasn't been quite as positive. Rebekah had quite a few events between 8-10 while in deep sleep. Most were caught pretty early. She was put on a positive air machine too at a higher rate and it doesn't seem to be making that much of a difference. We've also noticed Rebekah's face and neck are getting really puffy. Hoping it is from the IV and not some kidney thing going on. Haven't talked to the doctor.

5/21 6:10 pm - We'll be at the hospital through Tue for tests. Tomorrow night is the sleep study. This morning started out with many mild episodes between 8 and 2, but she's been episode free again for the past 4 hours. kind of strange. I will be going home this evening and Michael will be staying. We're in 5617 in PICU at Greenville Children's Hospital and guests are welcome to stop by. Thanks for all the care and prayers!



Saying goodbye to Rebekah for the night. :-(

5/21 10:25 pm - This is Michael. Susan is home snuggling with four precious little boys. Rebekah has only had 3 episodes in the last 8 hours. This is a huge improvement from Tuesday and Wednesday. As Rebekah and I said our good night prayers, we thanked God for providing us with her Mommy and four brothers, incredible friends and family, Daddy's flexible and understanding boss and co-workers and health insurance. That may sound silly, but I realized today how much I have taken healthcare for granted. Children around the world die everyday from far more "curable" problems than Trisomy 18. My cup overflows with God's blessings. If we were ever to write a book about this experience, we should call it "Trisomy 18 Through Faith and Facebook". :-) Goodnight and God bless to all of you who are sharing this journey with us. Michael

This post on facebook resulted in some great conversation and I have to brag a little about my wonderful husband, so I had to share some of it here...

Helen: Health care is super important, doctors are great, but the Great Healer does it all. Love and prayers to you and your family. Thanks for sharing the journey.

Shelley: Mike. you and your wife are amazing. I am in awe of your relationship with each other, your children, your faith, and ability to share your life so openly. Thanks for the inspiration.you guys are in my thoughts daily.

Helen: Michael - ditto what Shelley said. I have learned so much about myself and my own faith by taking this FB journey with you and your amazing family. I have prayed more since you started sharing your story with us and can now say there is power in prayer. Whatever God has as His plan for our lives in prayer you will find the answer or come to understand the journey. Thank you.

Ellen: Health care is super important, doctors are great, but the Great Healer does it all. Love and prayers to you and your family. Thanks for sharing the journey.

Sheri: God is good all the time, Michael. Thank you for reminding us all of that.

Jeannette: Michael I love the name you would choose for your book :) God Bless you. We are looking at posibly going back in the hospital next week for more testing too. Wish we were closer. Have a good night.

Diane: Michael , All men should take lessons from you. What an amazing DAD and HUSBAND you are. Thanks for the inspiration your family has been to all of us following your journey. May God Continue to Bless you and your family. Hang in there, There are alot of people praying for all of you.

Michael: Ellen, your comment is right on. It reminds me of Psalms 20:7, "Some trust in chariots, and some in horses: but we trust in the name of the LORD our God." David doesn't say he doesn't use chariots and horses, but that his trust isn't in them. Likewise, we're using science and technology (healthcare), but our trust is in the Lord.

Jennifer: I love that verse too! We must lean our ladders on the only solid foundation....our Heavenly Father, all other things can falter and crumble.

Annie: That is a verse I often quoted about the chariots and horses when I was preg with my daughter Rachel who has trisomy 18 also! God bless you guys and give you the strength you need for this journey! We're in it too...with you =)

Tracy: Love the title of your book...how true it is. Glad that it seems that Rebekah is doing better and that Susan is getting some much needed rest. God Bless you all.

Christy: Michael & Susan...how awesome for FB and that you are willing to share your journey with us. Some people think FB is silly & why waste your time on it, but look what it can do. Spread God's love all over the world and connect lots of people. How many requests have been put out there & quickly responded to??? May God continue to bless your family and inspire and help others. It also helps us by staying in our prayer life to help others!

Can't wait to read that book!!! :)

Lila: Michael, you are just amazing. I am so blessed to know you and Susan!! Thanks for the update. And let me know when that book is about to go to print! Can I get an autograph from the authors??




Happy 1 Month Birthday Rebekah Budd! Sleep peacefully in God's hands!

A Day of Ups and Downs

5/20/09 – DAY 30

5/20 1:46 am - My beloved Susan, I hope your having pleasant dreams that don't include any "beeping" sounds. I adore you. Michael (Michael stayed up with Rebekah all night so I could get a break. He prayed for supernatural strength to make it through the night and be able to function today. This morning he said he was feeling pretty good. :-) I've got the best hubby around and he's the best daddy too!)


5/20 7:53 am - Please keep praying for sweet Rebekah. Her 'episodes' are getting more frequent and worse. She is even having heart decelerations/oxygen drops while awake now too. It is a difficult pill to swallow that God has carried her this far and fixed so many broken things, but she may still only be here a very short time. My heart is just aching right now...

For I, the Lord your God, will hold your right hand, saying to you, "Fear not, I will help you." - Isaiah 41:13



Sweet Baby Rebekah

5/20 4:50 pm - For those who have offered to help with childcare, I have an immediate need and don't have time to find my phone list and call people. Rebekah is going to be admitted into the GHS Childrens PICU tonight - but this is a GOOD thing. Will explain in note to be posted shortly. Need someone to watch the boys at our house while we take her to the hospital. Not sure of time yet but sometime this evening.


The boys spending some time with Rebekah and saying goodbye as we prepared to leave for the hospital. Honestly, we had no idea when/if she would come home.

5/20 Summary from the hospital - Finally, I am getting some answers that I LIKE about Rebekah!

Michael and I have been fed up, stressed out, and sleep-deprived for awhile now. After spending these past few days with constant monitor alerts, we decided the laid back approach to seeing if Rebekah 'grows out of it' is just not working. She is having more frequent desaturations (oxygen saturation in blood) down to as low as 40's, should be in the 90's!) which are resulting in bradycardia (heart rate down to 59 beats per minute - should be in the 140's-160's!) and cyanosis (turning a nice shade of bluish-gray). Honestly, I thought I would be calling 911 today.

After calling the neonatologist who has been reviewing her apnea monitor data, we have come to the following conclusions (which still need to be 'proved' through farther testing).
- the caffeine has decreased her true 'central apnea' attacks where she would just stop breathing while asleep.
- the events that we are seeing an increase of are most likely related to 'obstructive apnea' because her breathing is not stopping during the events. She is desatting, then the heart rate is dropping. This indicates that she probably has a floppy airway or some other type of soft obstruction that is getting worse because she is getting a little bigger and her neck is getting fatter.
- we need some studies done in order to determine a course of treatment (CPAP, Bi-Pap, Trach - in that order).
- She could outgrow the obstructive apnea as she gets bigger and stronger. Leaving things status quo probably is going to result in an eventual 911 call.

Well, we have called the doctors and explained that her events are increasing and we are afraid that we are going to lose her if we wait until next week to do something about this. I don't know yet everything they are going to do, but it will include a sleep study (I think they are about 16 hours long), a swallow test, a ph test to check for reflux, an airway test, etc. They will start her in the children's area but, because of her precarious situation, I am more than sure they will admit her into PICU for these tests. The doctor has warned us that she will be there for probably about 6 days. :-(

So... please pray that we get some POSITIVE answers this time, that we find a solution/management plan for this, that God will continue to bless Rebekah by reversing any damage that may have been done from all the low oxygen levels. We may find out when it is all said and done that this is just who she is and there will be nothing we can do about it. But after having a heart healed, a kidney healed, and so many other things 'right', we will not accept that answer until it is obvious that that is the answer.

We will need help with childcare and some other things over the next week. To make things easier, if you can help out, please put your name and number in a response to this note with what you can or are willing to help with. I am not sure what our status is going to be.

Thank you so much everyone for your love, prayers, and care!


Rebekah getting a CT scan of her brain

Lethal Malformations

5/19/09 – DAY 29

Here are some encouraging verses I received from a friend today.
"Now faith is being sure of what we hope for and certain of what we do not see" - Hebrews 11:1

"The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." - Zephaniah 3:17

5/19 12:47 am - Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. ~Hellen Keller

5/19 7:30 am - Happy 4 week birthday, Rebekah! On Thursday, you will be one month old! Thank you, Lord, for allowing me time with your beautiful little creation.

In researching options for her apnea, I came across an OH Dept of Health doc that had this to say about T-18:
Lethal Malformations - trisomy 18, trisomy 13, anencephaly, or renal agenesis/potter’s syndrome, as listed under paragraph (V) of rule 3701-84-01 of the Ohio Administrative Code.
Trisomy 18 - a medical diagnosis involving trisomy of chromosome 18, which causes severe deformity and mental retardation and is characterized by prominent occiput, overlapping of index finger over third finger, frequent facial abnormalities, straight nose coming off sharply from the forehead, low-set ears, and cleft palate and lip.

We thank you, Lord, for our little Lethal Malformation!

Daddy Time!



Happy 4 Weeks!

Random Thoughts from May 13-18

5/13/09 – DAY 23

5/13 6:52 am - Rebekah had a great Tuesday - day and night. Only a few minor episodes of apnea (as opposed to Monday which was one event after another). Michael even sacrificed his night to let me sleep. We're off to the pediatric cardiologist this morning. Thank you so much for your prayers...we do feel them working and God has brought Rebekah so far already.

5/13 2:16 pm - Well, the cardiologist has confirmed what we've known to be true - Rebekah's hole in the heart is not there and her heart looks great! There is a small abnormality associated with her aortic valve (Bicuspid valve that 30% of the population has), but nothing that should cause any issues. In fact, we do NOT need to go back to the pediatric cardiologist again unless sometime in the future we start to hear a murmur associated with the valve.

5/13 3:51 pm – Wise words from a very godly friend of mine: We thank God for His will and His providence. Sometimes it is healing....sometimes it is the cross...both are gifts from Him to us...out of love.


5/14/09 – DAY 24

5/14 3:10 am - My Mom leaves Sat after being here for 5 weeks, and I am very sad. She has been such a great help and hasn't complained once about taking care of my boys, folding laundry, cooking a meal here and there, doing the dishes, taking care of my plants, doing homework with the boys... What am I going to do without her? :-( I love you Mom! Thank you!!!

5/14 9:12 pm - Rebekah had her pediatric appt today. She weighs 4lb 15oz! She is gaining like a 'normal' baby. :-) We are going to up the caffeine citrate a little bit and see if that helps at all. In the mean time, the doctor will consult with some colleagues and see if we can come up with some other options for addressing her apnea / bradycardia / desats. There isn't much we can do right now other than pray that she continues to respond to stimulation when having her events. And they occur frequently during every day. But right now she's looking good, feeding well, growing well and getting a pudgy face! No more cute little porcelain doll looks.


5/15/09 – DAY 25

5/15 4:35 am - Someone told me about some SIDS-type device that either is a special mattress or connects to your mattress/crib and every so often it shifts slightly. I have googled and googled, and can't find anything remotely like this. Anyone ever hear of this? I'm thinking this would be great for infant apnea and a constant stimulation that might prevent attacks. This would be an awesome thing to invent for paranoid parents too!

Some friends responded back with devices that might help, but no mattress shifter. The Respisense looks pretty cool though - a diaper vibrator. :-)
- Respisense Movement Monitor
- Babysense V - Infant Movement Monitor
- Movement and Sound "Angel Care" Monitor

5/15 1:25 pm - What is up with opthalmic migraines? I wonder what causes them. Anyone else get these? All I can say is they are very strange. But better that than a full-blown, head-splitting migraine! (I have had 3 of these in the last few months, never had them before in my life. Think it might be stress?!)

5/15 8:24 pm - Michael - Our little princess has slept 3 hours without setting off her apnea alarms. It gives me hope that she could get past this too. PTL!! l



Rebekah with her doting father, Michael.


Rebekah holding Daddy's hand.

5/16/09 – DAY 26

5/16 5:11 am - It didn't last, but 3 hours was still a nice reprieve from the alarms. :-)

5/16 5:41 pm - Rebekah made a public debut today. We took the whole family to two birthday parties, one at Monkey Joes, another at a firehouse. Her monitor alarms were not too loud at either place which will make it easier for us to take her to 'loud' public places. But, unfortunately, she did set off the monitor quite a bit all day long. :-( On a positive note, I am pretty sure she tipped the scales today at 5 pounds even today!

5/17 8:00 am - We're off to church to see our wonderful brothers and sisters and Christ! This was Rebekah's first trip to church. We (Rebekah and I) spent the time in the Mother's Nursing Room so her monitor wouldn't send everyone out of the service like a fire alarm. The trip was stressful because she can't sit in the carseat without setting off the alarm. But the time at church went okay. Living with the monitor going off has just become a reality to our everyday life...

5/17 1:48 pm - I lost my keys at church today. :-( But when you're feeling a little blue, homemade chocolate chip cookies from a friend always helps brighten the day. Thank you to our many many food angels that have been helping us out. I so appreciate all of the meals!
(5/21 update - Guess what, Michael found my keys...right where he put them. ha ha. See what sleep deprivation does for you?)




My Mom with me, Josiah, Jeremiah, Rebekah, Elijah and Isaiah.


My mom giving Rebekah a kiss goodbye before leaving for the airport.


After my Mom left, we made our first family fun outing with Rebekah. The boys went to two birthday parties. The first one was at Monkey Joe's. Here they are all going down the slide together.


The second outing this day was to a birthday party at a fire station. Josiah was having a good time hamming it up for the camera.


At one point this afternoon, Michael called me and the boys to come outside. These strange looking turkey-like birds were in our driveway. The boys followed them across our neighbor's yard and tried to feed them. We later learned these are guinea fowl. Apparently they taste like chicken and eat spiders, ticks, fleas and other creepy crawlies.

5/17/09 – DAY 27

5/17 10:30 pm - Rebekah had a rough day today. She was totally wiped out and wouldn't wake up for feedings - which meant using the N/G tube and dealing with lots of A/B (apnea/bradycardia) events. I had a mini-breakdown over lack of sleep and Michael sent me upstairs for a blissful nap. Rebekah then 'woke up' late afternoon & has been fairly quiet since and 'behaved' for the Heatons as they babysat so we could go see Jeremiah sing in church choir.

Care for a medically fragile child - I don't have any official respite care - just a friend here or there that has some medical background and can feel comfortable enough watching a baby that constantly sets off her A/B monitor! ;-) Here in SC, Rebekah qualifies for Medicare Tefra (which will take 3 months to get), then we can apply for some MR/RD waiver (for SC) that will get us up to 60 hours of in home nursing care per week. Woo hoo! But that is ONLY if they consider her needy enough and it takes a long time after Tefra kicks in… so I am looking at probably next year for any care relief.
I hope I can last that long (and Michael).
For those in similar situations, how do you manage the sleepless and stressful nights?


Rebekah getting an N/G tube feeding.


Our church had a children's choir concert this night. Here is Jeremiah (on the left end in a blue shirt) singing for the concert. A friend from church (who used to be an EMT) came to our house and watched Rebekah so we could go see Jeremiah's choir perform.

5/18/09 – DAY 28

5/18 5:48 am - Rebekah had a much better night. She went back to the bottle too and is happy to have the N/G tube out of her nose. She did still set the monitor off, but it was all minor stuff (no blue spells). Oh, and I DID FINALLY get a new camera! We went with a Canon SX200IS. So far, we're loving it! Takes great pictures and has a lot of good features.

5/18 5:55 pm - Josiah had an emergency run to the doctor - he woke up from his nap with an ear infection. He then threw up in the car on the way home from the doctor to get his drugs. Lovely. Thank you to Leslie for coming over spur of the moment to watch Rebekah and the other boys!!!! I have no idea how I would've made it to the pediatrician before the office closed without immediate help!

5/18 11:46 pm - I now know why sleep deprivation is a major part in torture practices.




A favorite past time in our house is playing on the Wii. Jeremiah and Isaiah are taking turns playing Outdoor Adventure which comes with a mat. It's a pretty cool game and has many different challenges like log jumping, mine car racing, etc. It's good for a nice aerobic activity as evidenced by Jeremiah's sweaty head above.



Our pretty little girl... Also known as 'Peanut', 'Blue Belle' (for her infamous blue spells), "Beka"

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.

------------------------
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.