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.
Monday, April 27, 2009
Friday, April 24, 2009
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!
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!
Tuesday, April 14, 2009
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!
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!
Wednesday, April 8, 2009
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...
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
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
Friday, April 3, 2009
Fears and Doubts
4/3/09 Doctor Update: My amniotic fluid level was 14, cord flow 2.6, heart rate 135, and my blood pressure as low as always at 100/60. Rebekah is still stable and we got to see her practice breathing again. PTL! So, we went ahead and set an induction date of 2 weeks early - Monday, April 20th at a bright and early 5am . We will do an NST (Non-Stress Test) next week just to make sure everything is okay. The doctor's quote from today's visit, "She is doing much better than I ever expected." So Michael and I are feeling a little lighter today and thanking God that the prayers of many are being heard.
But several times today, and through the last few weeks, I have been subject to fits of crying and fear.Philippians 4:4-7 (NIV)
4Rejoice in the Lord always. I will say it again: Rejoice! 5Let your gentleness be evident to all. The Lord is near. 6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
4Rejoice in the Lord always. I will say it again: Rejoice! 5Let your gentleness be evident to all. The Lord is near. 6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
In case anyone thinks I am some incredible person with faith of steel and a bright outlook on life, I wanted to set the record straight! I am a very normal mom with the same hopes and fears most moms have. I have my share of insecurities, paranoia, and fits of anger. I struggle with love, trust, and faith. I hate having no control over my immediate future. The only difference is, I have just been blessed with God's strength the last 4 months to get to the point where I am at. I am choosing to see the glass half full instead of half empty, because that IS a choice I can make.
But while friends are happily giving a 'thumbs up' on facebook to my now scheduled induction date of 4/20, I am scared and an emotional wreck! The last few weeks have been a roller coaster ride of emotions and self-doubt. Rebekah is beating the odds making it this far. So now I am struggling with the idea of possibly having a special needs child, one that is severely handicapped. And then I read in a book I recently purchased from SOFT (Support Organization For Trisomy 18, 13, and Related Disorders) a parent quote after the death of their trisomy 13 child: "People told us having him would be the hardest thing we ever did. They were wrong. The hardest part is not having him."
So inward the battle rages...
"God, I can't handle this right now. Why can't she just stay safe and sound inside me?"
"My child, remember that I will provide you with all the strength you need."
Philippians 4:13 - I can do everything through him who gives me strength.""Lord, why me?"
"My child, I use events in your life to work a greater good. You do not see the big picture. Trust me, I love you. I am working everything out for your good. "
James 1:2-4 2Consider it pure joy, my brothers, whenever you face trials of many kinds, 3because you know that the testing of your faith develops perseverance. 4Perseverance must finish its work so that you may be mature and complete, not lacking anything.
Romans 8:28 - And we know that in all things God works for the good of those who love him, who have been called according to his purpose.""I don't have enough faith to handle this."
"My child, All you need is the faith of a mustard seed. And I have provided you with all of the help you need.
Mat 17:20 He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."
Mat 18:19-20 19"Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20For where two or three come together in my name, there am I with them."
Rom 8:26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express.I heard this song today. I know it well, but the words just really hit home right now. If you aren't familiar with it, please play the video and listen. It will bless your soul.
Praise You In This Storm lyrics - by Casting Crowns
I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You
As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
Labels:
trisomy 18
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