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.
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