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Friday, June 26, 2009

Two Operations and a Breakdown: June 1-4

This is a summary of what happened right before and after the trach/g-tube operation...

6/1 Day 42 and Day 13 in the Hospital

6/1/09 4 pm - Rebekah's surgery is tomorrow (tentatively 11:30 am) instead of today.
To make a long story short, we have been struggling over the idea of having a g-tube put in at the same time. Most trach babies end up with g-tubes. :-( After discussing it with probably 4 different doctors, we've decided to do it and hope she'll only need it on rare occassions.
Please be praying for a successful surgery and recovery. Thanks!
The surgery was delayed because to do the g-tube, we needed an upper GI study which showed... everything was 'normal'. What did you expect? :-)

Rebekah getting a bath to beautify for her upcoming surgery.

I recorded Rebekah several times trying to capture her crying and making a cute little noises. I was warned that the hardest part about traching your baby is that you no longer can hear them cry. I never did get the little whimpering noises, but here is a nice cry. I'm looking forward to the day I can hear her again!

6/2 Day 43 and Day 14 in the Hospital

6/2/09 8 am - Rebekah had a rough night of true apnea episodes where she did a lot of periodic breathing. We think it is because of her upper GI test yesterday and the stuff they use to see the GI track has caused her severe diarrhea and bad reflux. But she is doing better now and waiting for her surgery. I am really praying this solves her apnea episodes. This is also the last morning I am going to hear her sweet cries for a long time. :-( On a positive note, she is up to 5lb 9oz!

6/2 8:40 am - We've been bumped to 1 or 1:30pm. Guess the doc wants to make sure he gets a lunch break. :-D

6/2 11 am - As I sit here comforting Rebekah in her hunger waiting for her surgery, it just makes me appreciate how blessed we are here in the US. There are countries where millions of people are starving and mothers have to listen to their babies cry in hunger day after day until their poor little bodies give out. Thank you, Jesus, for blessing our life and for providing us with everything we need. I also have a t-18 mommy friend in the UK who has a little 3 year old boy that needs heart surgery. Do you know in the UK (yes a modern country with all of the medical capabilities we have) they will NOT do surgery on a t-18 child? They just rather let them die. That is another reason I am proud and blessed to live in the USA. I find it totally absurd that a child has shown that he is fighting to live and they won’t consider ‘fixing’ something that can be fixed. One of the doctors here also told me how in Europe and Japan, you will not find a lot of special needs kids – for the same reason. Their lives are not valued or sacred.

6/2 5:05 pm - According to the surgeon, Rebekah's surgery went "very well". She is breathing on her own. However, she is having episodes of bradycardia (slow heart rate). One was pretty deep and long. Her doctor said for a baby <2 style="font-weight: bold;">6/2 5:52 pm
- Although the surgery went well, Rebekah's CO2 level is really high - she is not releasing CO2 efficiently when she exhales. They are trying to determine why but we only have a short time to resolve this before we have to consider ventilation. Needless to say, this is rather depressing and going down a path we didn't want to go on. So we need those prayer warriors to keep on praying. The next 48 hours are critical.

6/2 6:55 pm - Well, I've got bad news that is actually good news if they can figure out how to fix it. It turns out that the air is NOT passing through the trach! So Rebekah's drive to breathe is so strong that she is working to breath around the trach tubing. This most likely is the reason for the really high CO2 level, because she cannot breathe efficiently. They are working to figure out the problem and solution.

6/2 7:00 pm - The bad news is her Trach is blocked. The good news is her Trach is blocked and she is still breathing on her own and keeping her stats up. God just showed Psalms 20:7 to me in real time!!!! She is in His hands!!! Literally... It is NOT her day to go today and she WILL be sustained until they can figure out what went wrong. Isn't God so evident in this child's life? I hope everyone following this story realizes that they are seeing His miracles one after another and, if you have not submitted yourself to Jesus, you need to do it now. There is no better place to be than in the arms of my Lord and Savior!

6/2 8:16 pm - Rebekah is heading back to the OR for a second surgery to fix the trach.

6/2 9:46 pm - Rebekah came back to her room at about 9:20. The Trach had moved out of place, so the surgeon put it in the correct position and secured it with sutures. He said that would hold it. She is breathing on her own and stable. PTL!! Thank you for your many prayers. Good night to all.

Wheeling Rebekah to the first surgery. I cried as I left her there.

Recovering from surgery #1.

6/3 Day 44 and Day 15 in the Hospital

6/3 9:35 am - Rebekah is having some incidents of low oxygen levels and heart rate, but is self-correcting for the most part. We are just going to have to wait out the next 2 days and trust that this will improve as she completely recovers from 2 surgeries. I had to go home last night to relieve the babysitter. Michael truly felt he was witnessing a miracle as Rebekah breathed through two obstructions until her 2nd surgery.

Feeling a little more alert after two rounds of anesthesia are finally starting to wear off.

6/4 Day 45 and Day 16 in the Hospital

6/4 9:47 am - Not much to update other than Rebekah is stable and we are waiting for her '48 hour' period to end. When she goes into a deep sleep, she is still having some issues, but if they continue past tonight, we can consider putting her back on caffeine to see if it helps. Overall though, the trach is definitely making it easier for her to breathe. Care is a little overwhelming, but I know it will become easier over time. We've been using the g-tube to feed her. At some point today we will try a bottle.

Summary of the Day:
We tried giving Rebekah her first bottle today. We only did 1 ounce. She seemed to swallow well, but did have a lot more fluid to suck out of her trach after eating. It was undetermined if it was milk or just watery mucous. So we’ll stick with the g-tube today and go for a swallow test tomorrow to see if she is aspirating.

I had a meltdown today, in the hospital. Luckily my friend Renae Bradley (Her son Dawson is 3 and has T-18) was here to lend me a shoulder to cry on and great advice on how to deal with the hospital. Rebekah was having a lot of bradycardia events, and I felt like no one was watching over her or checking on her when her monitor would go off. Consequently, I am on pins and needles here at the hospital; feeling like I cannot even leave the room for a few minutes for fear that no one will be there for my poor baby. Also, trach and g-tube care is not simply common sense. She’s only had these things for a few days and I have received little training on them, yet I feel kind of abandoned and left to deal with her alone. So after talking to one of the managers, I feel a little better and she assured me that I should have enough confidence that if I even wanted to leave the unit and sleep at home at night, Rebekah would be taken care of. I don’t think I would ever want to do that, but I do hope my trust is restored enough that I COULD do that if I really wanted to.

Added note: The nurses at the Greenville Children's Hospital are wonderful and I am sure they would not willfully do anything to harm my child. But days and days of stress and no sleep make one very negative and I was at one of those points. I am posting this as it documents the feelings I was going through, but know that I do have full confidence in the PICU staff.

So back to her bradycardia… we started her back up on caffeine mid-afternoon. We’ll have to see if that helps, but the doctor isn’t too hopeful. He doesn’t think the caffeine will work on her. He said we could put her on a respirator, but that is going down a path we decided quite some time ago that we did not want to go down. I feel like we’re back to square one, and I have to be honest, I feel just a little abandoned by God right now. No, my faith won’t stop and I won’t become bitter and angry, because I always knew that Rebekah was being entrusted to us for a short time. But with all the miracles that have occurred along the way, it just seems like a cruel joke to be back at the point we started at. We would not have had a tracheostomy in the first place if the test results hadn’t come back as they did – that the majority of the problem was obstructive.

So when Michael got to the hospital, he sent me home and told me to enjoy the boys. I looked tired, I was emotional, and I wasn’t handing all this as well as I could. I think stress and continued lack of sleep is just eating at me. I simply cannot sleep when I’m in the hospital. I wake up all night long, just can’t help it. But I tried to enjoy the evening. We all talked to Grandma Kraieski on phone. During Isaiah’s conversation, Grandma wanted to know if he was enjoying his school break for the summer. He kind of wavered on the answer announcing that he had to go back in the fall ‘to get more experience’. LOL. I wonder what kind of ‘experience’ you learn as a 4 year old? Then the boys and I curled up on my bed and watched Night at the Museum. I’m looking forward to a day we can all go somewhere again as a family and do something as simple as go see a movie together. They’d love to see the sequel!

My friend Renae came to visit Rebekah. Her and Angela, my two trisomy 18 moms here in Greenville, were our most frequent visitors during our month stay at the hospital!

This is Dawson (Renae's son), who is 3 1/2 with trisomy 18. They have a website called We are going to revamp it to include Rebekah and hopefully other living t-18 kids.

Saturday, June 13, 2009

Bronchoscopy & Results

5/27 - DAY 37 and Day 8 in the Hospital

5/27 2:18 pm - Great, great day today. Rebekah has gone over 24 hours without a major incident! Woo hoo! I'll be at the hospital through the night and tomorrow. I'm bored if anyone wants to stop by. PICU room 5617.

5/27 11:18 pm - This is the first day in over 5 weeks that I have allowed myself the luxury of not staring at an apnea or sat (oxygen) monitor every waking minute of the day. In fact, except for feedings, I have only occassionally glanced at the monitor. Never take for granted your healthy 'normal' children. Thank God for every 'normal' behavior you are blessed with, cherish even crying, temper tantrums, and over zealous speech.

Beautiful little Rebekah

5/28 - DAY 38 and Day 9 in the Hospital

5/28 2:30 pm PTL - we got the results from the bronchoscopy and it is ALL upper 'floppy' airway issues. Everything below the vocal cords looked well formed and very clear - this is great because it means that she does not appear to be aspirating when she eats and it makes a trach an option for her (which is probably what we will end up doing). They are sure that a trach will solve her apnea issues, but they are not sure how it will affect feeding. She does have some anatomical variations that complicate the feedings/breathing too. Please pray for wisdom on what we need to do and that God will continue to bless Rebekah and, if we go the trach route, keep everything else working like it already is. The trach is what they would recommend for 'normal’ children with the same floppy airway issues. It can be reversed as she gets bigger if she grows out of the problem. Although it has complications associated with it, it is a much better long term solution then a constant high pressure airflow that could cause future lung problems. The only down side is that we probably won't be able to get it scheduled before Tue and the recovery time is at least a week. :-( Guess its more hospital food...

5/28 11 pm - Stay here long enough in the hospital and you get to ‘move on up.’ There are two coveted rooms on the PICU floor – corner suites, if you will. One resident just moved out, so we are moving on up! We are now in the PICU room 5616. We have an extra chair, a more comfy bed, and a toilet that cannot be seen from the door. Our last room was square with one whole glass wall facing the PICU hallway and desk. It was exactly like being in a fishbowl! We are still close to the nurse station and main desk, but have a much smaller viewing area into our room from the hallway. I am so happy to have a little more privacy!

Getting set up for the bronchoscopy. I had to step outside during the procedure, but curiosity got the better of me and I went back in to watch it on the screen. It was quite interesting (but heart breaking to hear Rebekah screaming her head off). As the scope penetrates the vocal folds, you no longer hear the crying, just the rush of "mad" air coming out.

For the medically geeky, here is a copy of the bronchoscopy video.

5/29 - DAY 39 and Day 10 in the Hospital

Can you believe it, I actually did not report an update this day! Or take a picture. I have NO idea what I was doing this day.

5/30 - DAY 40 and Day 11 in the Hospital

5/30 4 pm – Looks like we are on the Monday 'wait list' for the tracheostomy. We'll find out sometime Monday morning what time it will occur. We will be in the hospital probably 2 more weeks after the surgery (barring complications) because it needs time to heal, we need to reestablish her swallowing with the trach, and we need to learn how to care for it. Please be in prayer that this will not mess up her eating and that there will be no further complications and this will resolve all of the apnea issues. If all goes well, this will give us mobility again and help us to be a family once again doing things together and taking her places with us. The high flow air scenario just wasn't going to work long term or be portable for us. Our greatest risk right now is that the trach will increase her probability of aspirating and result in having to tube feed her. We are praying that God will allow her to continue eating by mouth, which she is so awesomely doing right now! Since we’ve been in the hospital, her average feeding has increased from 1.5 ounces to over 2 ounces per feed, and we’ve even had some 3 ounce feedings!

The conclusion from Rebekah’s sleep study is that she is experiencing all obstructive apnea. The doctor’s recommendation was to stop her caffeine as we move forward. However, it is not with 100% accuracy that we can say she does not have any central apnea. It could be that the obstructive apnea is so bad that it is masking central apnea, or that her caffeine actually is taking care of the central apnea. But while we are in the hospital, we are experimenting to see if she can come off of it. Rebekah has been off her caffeine for several days now. She has been having a few oxygen desaturation issues with bradycardia (low heart rate) yesterday and today, but it is hard to tell if that is a factor because of the caffeine working its way out of her system or that the high flow nasal cannula just isn’t 100% effective (which we already know) or some other unknown factor. I’m somewhat on pins and needles today just wondering what will happen as it completely works its way out of her system. But this is something we can easily start her back up on if we need to.

Rebekah is thought to have laryngotracheomalacia (floppy airways) but a second opinion said that her throat looked pretty good but was collapsing because of a blockage further up that was causing extreme negative pressure on her airway - most likely that blockage is her tongue. She has micrognathia (very small lower jaw) but a normal tongue, so the tongue falls back and blocks her airway. If she were older, there are a few different surgeries we could consider that would resolve the problem. However, for various reasons, they are not an option for a 1 month old. So this other doctor is also making a recommendation for a trach. On the positive side, this is a good sign that we could have the trach removed in the future and, if she grows normally (which is not expected in a t-18 child), she might even outgrow the source of the problem and not need any further surgery except to close up the trach hole.

During her swallow study, it was shown that because of Rebekah’s small lower jaw, large tongue, and some other minor anomalies, she has a higher risk factor for aspirating when she eats. When she swallows, what she swallows actually penetrates the vocal folds (this is not normal), but does not actually go down her trachea. We know from chest x-rays, the bronchoscopy, and the swallow study that she definitely is not aspirating when eating (but remains at risk). However, with the tracheostomy, the pressure in her trachea is going to be different and we may or may not create a problem with her current swallow pattern. After she recovers, we will need to do an additional swallow study and see what happens. We are praying that her body will correctly compensate and this will not be a risk. We are so in awe of what God has done so far for Rebekah – compared to what I read about t-18 children, it is amazing that she is feeding so well by mouth, and eating enough to not just maintain but grow at a healthy rate. It would be somewhat devastating to go from being able to completely feed her by mouth to getting a g-tube (a feeding tube surgically placed directly into the stomach) to feed her. But this is a risk worth taking when we consider current quality of life for her and for our family.

Out of all of the things that should be wrong with Rebekah, to have a trach possibly be the only thing she really needs right now is, well, a miracle! Time will only tell, but if the trach does not cause a feeding issue and completely solves the apnea issue, this will hopefully buy us much precious quality time with our sweet daughter that would not be otherwise possible. We are so looking forward to being together again as a family – and actually being able to take Rebekah places with us! We have been praying that this summer can be a summer in which we create some beautiful family moments.

Everyone making themselves at home in the PICU.

Mommy feeding Rebekah dinner.

Life must go on outside of the hospital! Michael took Elijah and his brothers to his cubscout graduation picnic. He was a 'Wolf' (2nd grade) and is now a 'Bear' (3rd grade).

Michael with Josiah and Isaiah at the picnic. (Susan was stuck in the hospital.)

5/31 - DAY 41 and Day 12 in the Hospital
Also a day I didn't report anything on facebook! The boys came to visit again and took turns holding Rebekah.
"Ewwww, Rebekah's diaper stinks!" (A friend noted that Rebekah looks like she is actually laughing at Isaiah.)

Friday, June 12, 2009

The Apnea Study

The 'books' will tell you that for the trisomy 18 babies that make it to birth, 90-95% of them will die before they are 1 year old. The primary causes of death are usually quoted as major heart defects or central apnea. Central apnea is where the brain is not telling the body to breath or the heart to beat while a person is asleep. Many of the doctors think Rebekah's issue is probably central apnea and there will not be an easy solution. We are hoping for a different story. This is what happened the day of and following the sleep study until we had an apnea diagnosis of central versus obstructive apnea.

5/22/09 – DAY 32 and Day 3 in the Hospital

5/22 4:12 pm - PTL! Today has been a great day! The current intervention continues to be extremely successful - we've gone from >300 'incidents' (with at least 10 full blown blue spells) in a 24 hour period to only 6-7 incidents with only 1 short blue spell. What a break! She had her first bottle after 36 hours of not eating and for the first time did not desat during the feeding. The challenge will be duplicating the current process at home since she is using a machine that isn't used in homecare (hi flow nasal canula) and her size is making cpap at home something that might not be doable. We have the sleep study tonight and more studies next Tue. We will be here into Wed unless they think up more studies.

Pretty in pink!

How do I eat with all this stuff on my head?

All ready for the sleep study.

5/23/09 – DAY 33 and Day 4 in the Hospital

5/23 9:40 am - I backed into the pizza delivery guy the other day who decided to street park behind our driveway just as I was backing out of it. Then I dropped my cell phone in the bathtub while giving the boys a bath. ~:-/ But at least I am getting some sleep finally!

5/23 9:50 pm - Update by Michael: We're ending another pretty good day. Our only "real" incident occurred during an experiment with a set up that would be easier to take home, so we're back to the 5 liter flow which seems to still be working well. I realized tonight (with Mark and Amy) that being here alone with Rebekah has helped Susan and me to focus on what she is doing. That focused attention has allowed us to see her obstruction patterns. The challenge is resolving the obstruction issue in a way we can take home. Tonight I am praying for the answer to that question.

The morning after the sleep study, we had to clean all the goop out of her hair. I think it actually took several days and baths to to get it all out!

Rebekah had to get a new IV line today.

My brother and sister-in-law stayed the weekend and brought their dog (and kids). Josiah loves the dog and apparantly the dog crate. He put himself in the crate and shut the door, then acted like a dog.

5/24/09 – DAY 34 and Day 5 in the Hospital

5/24 10:56 am - Update by Michael: Rebekah is eating exceptionally well today (60 cc's from a bottle twice) and she just weighed in at 5lbs 2 oz (3oz more than two days ago). She is back on a positive growth curve. PTL! She had some incidents last night, but they may have been caused by the nasal cannula falling out of her nose. Since it was retaped, we haven't had any problems. Susan and I will be switching places later today. In case your wondering, Rebekah was actually 5lbs. 4 oz., but we took off 2 oz. to account for what she just ate. For me to have the same percent increase in weight as 3 oz to her, I would have to put on 7 lbs.

5/24 7:20 pm - It's amazing what a few night of decent sleep can do for one's spirits! Well that and knowing that I have hundreds of prayer warriors out there and that I am a blessed child of God. :-) Ephesians 3:16 I pray that from his glorious, unlimited resources he will give you mighty inner strength through his Holy Spirit. Rebekah continues her great behavior and progress. We MAY be looking at a trach for a solution, but that answer will come after her Tue & Wed tests and meetings with the doctors. I'm just so happy that her problems are mostly physiological and a solution is in the near future!

Holding my baby girl...

Josiah helping out with the trash back at home. Gotta teach 'em early!

5/25/09 – DAY 35 and Day 6 in the Hospital
5/25 3:40pm - Dr. Gault (the sleep doctor) came in today just to see Rebekah! There are about 900 pages of a report to be reviewed but his preliminary report is... obstructive apnea! (not central which would be her brain function). I know we have to wait for the 'official' report, but this is AWESOME news! So another test will be added to the list and we will probably be here the whole week. But PTL for good news! Rebekah also had problems with desating this morning (her oxygen levels dropping), but it turns out that her nose was full of boogers. Once again - obstructive! Nose was cleaned out way back with a little tube thing and the humidity turned up on her high flow air. So far, no more episodes. And she is still eating great - about 2 ounces per feeding. WTG Rebekah!

Looking pretty for today's visitors!

Aunt Amy and Uncle Mark in the hospital room with Josiah.

Elijah, Isaiah, Josiah and cousin Nick.

Jeremiah and cousin Ben playing on my laptop in the hospital room. Thank goodness for wi-fi!
5/26/09 – DAY 36 and Day 7 in the Hospital

5/26 5:37 pm - The official word is definitely obstructive apnea! In fact, the doctor is pulling Rebekah off her caffeine. The most important test comes Thu - a bronchoscopy where a little camera will be inserted up her nose and down her wind pipe to below her vocal cords. We are so appreciative of all the support we've been receiving. We do still need a little more childcare help this week. Oh, and the doctor said that it is a significant finding that she does NOT have central apnea since she is a trisomy 18 child. Hip Hip Hooray! Your prayers are working and God is good!
Rebekah also had a swallow study today which showed some anomalies. In the swallow study, they mix barium in the formula, sit her up in a special chair, then take an x-ray movie of her swallowing. It's really quite fascinating! Anyway, her bottom jaw is small and her tongue too large for it. Her palate (roof of her mouth) is a little short, so when she swallows, she actually sometimes pushes the food up her nasal passage! This will probably mean she will be prone to sinus infections. She also swallows in a way that each swallow dips down to the vocal folds in the trachea, but doesn't necessarily penetrate it. But that means that she has a higher probability of aspirating and probably micro-aspirates. (Good thing she doesn't know this, because she's been doing a great job eating!) We were able to play around with some different nipples and find one that works best for making her swallows more 'normal'.

Sound asleep after the swallow test and a bath. Doesn't she look like a little rocker girl?

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 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 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 & 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!

Tuesday, June 2, 2009

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"