I (Alan) am sitting here next to Chloe's isolet now, watching the many lines and monitors keeping track of her, so I thought it would be good to let you all know how yesterday went.
Yesterday, the Lord decided to continue our Master's course in understanding that we are not in control and His plans are not our plans. As you know, our plan was to come in yesterday (Friday) for one last ultrasound to try to get a good feel for what issues she would have when she was born, stay through the weekend, and then deliver first thing Monday morning.
After saying goodbye to the kids, we drove over in the morning for our appointment at 11:00. We were early, and the appointment was late, so after sitting in the waiting room for a long time, we headed back for the ultrasound. Really the two goals for the ultrasound were to do a BPP (biophysical profile) and take a look at heart, kidneys etc.. Chloe passed the first three parts of the BPP (breathing, whole body movements, and tone) right off the bat, and so the sonotech settled into taking images of her various organs. The very last thing she did was to check the final part of the BPP, which is amniotic fluid levels. The sonotech went on a fluid hunt, and wasn't having much luck (having just had a BPP Monday, we knew this was odd). The most she was able to find was a pocket with 3.8 cm3 of fluid. The minimum to pass a BPP is 5, and last Monday Jodie was at 6.8. In a normal situation, they would probably hook up an IV for Jodie to hydrate her and see if they could get the fluid levels back up, but since we were planning on delivering on Monday (the 28th) anyway, the doctors recommended we deliver now.
Jodie and I had finished breakfast on the drive at 8:30, and the anesthesiologist wanted her to have not eaten for 6 hours, so they planned to begin the C-Section at 2:30. Thus began a flurry of activity to prep and get ready for surgery and our little baby to arrive. At one point (at 2?) the doctor was explaining to me how the process would work. The operating room is adjoined to a room to care for newborns, and so after Chloe was born, I could go over to take pictures and watch her. To this I responded, "Um, I don't have the camera." The doctor, surprised, asked why not. I responded, "We came in for an ultrasound...." She sent me down to the car to grab the camera assuring me they wouldn't wheel Jodie back without me.
Having had two prior C-Sections, the C-Section did seem to take longer, and then Chloe was born. She let out one quick little cry, which was so good to hear, and they hustled me over to the neonatal room. The doctor let me know that her blood oxygen levels were low, and so they would be starting Chloe on the drug to keep her ductus spinosis (sp?) open. Chloe protested much as they worked to get her cleaned up, and started to check her out. They put in her umbilical IV line, and by that point her blood oxygen levels had come up to a good level, so they didn't have to administer the drug immediately. This means that currently, she is only receiving some iv fluids, and she's not on any medication at all!
Chloe began to grunt, which I'm hoping means something to lots of you, but I'm not sure I can reexplain what was happening in medical terms, but long story short, she needed time on a CPAP machine. Due to her cleft palate, they weren't able to do the nose oxygen, and she super small, so they found a mask that would work for her, and the nurse held the mask there for 45-60 minutes to help her breathe while they continued to work. They did have a discussion in there about what they would do for a mask if long term was needed since she is too small for the normal mask.
The cardiology team came in and did sonograms of her heart, which took about 30 minutes. Everything that was diagnosed via ultrasound was confirmed by the eco-cardiogram. At this point, it looks like she will be able to go the 6 months without the initial heart surgery until they do the first of the two that she needed no matter what. After the cardiology team left (much to the relief of the nurses), they continued to evaluate Chloe to see if any interventions were needed. After a while, she began to cry into the mask, which told the nurses that she didn't need the CPAP anymore, and she hasn't needed it since.
During all of this, the doctors continued to stitch Jodie up. There was extra internal scarring from the previous C-Sections, so it took them quite a bit longer than a normal procedure, but finally got Jodie stitched up and wheeled back to the room to begin recovery. After the doctor and nurses finished all of their checks with Chloe (maybe an hour or longer later), they wheeled her into Jodie's room so that Jodie could see her. In what was a delicate dance of isolet, hospital bed, Chloe's wires and tubes, Jodie's wires and tubes and about 5 nurses, they managed to let Jodie hold Chloe for a few minutes. I haven't been able to hold her, and probably won't for several weeks. When Jodie asks why not, I tell her, "Did you see how complicated it was for you to hold her???"
Jodie is recovering well, though not quite as fast as after Abi's C-Section, so we would ask for your prayers that she would recover quickly so that she can come and be by Chloe's side as soon as possible. We were blessed that there were no unexpected concerns with Chloe. She does have a cleft palate, which will probably prevent her from feeding, so at some point, it is likely that they will need to put in a G-tube to feed her. She has two clubbed feet, but apparently they both looked correctable, one with a cast here in a couple of days, and the other with some physical therapy from the nurses.
All of the information they had gathered about her heart was accurate, so if you would like to read more about her condition, you can see more here. Pray that her blood oxygen levels continue to be good as the ductus spinosis closes, and that she will not be under-oxygenated or over-oxygenated. They will check on her kidneys here in a couple of days to make sure they they are functioning correctly (there was some concern from an ultrasound 2 months ago). Also, they will begin working though tests and evaluations to check for possible symptoms from a very long list of possibilities for Mosaic Trisomy 22 babies.
Pray that she grow!!! She's very tiny (3 pounds 7 ounces at birth), and will need to start putting on some weight when they put in the G-tube. The more she grows, the better. Much like the CPAP machine issues at the beginning, her small size limits options sometimes, and so every pound helps!!! Pray for the kids in Manhattan, who I assume are doing fine.... :-D Pray for doctors and nurses, that they would have wisdom as they work with Chloe, and that we would have good experiences there.
We thank you so much for all of your prayers and support that brought us to this point. I was amazed to see when Terri posted on the Our Chloe Elizabeth page yesterday that over 2100 people had seen the post (Facebook offered to advertise to get the views higher...), and we know that so many people have been praying, that I'm not super shocked that she's doing so well for how small she is.
The doctors just came by, and gave a quick update. In the next couple of days, we will see the orthopedic team for her cleft palate and club feet, and a sono of her kidneys and a sono of her cranium, so we'll learn a lot hopefully in the next couple of days. They are going to try to feed her a little bit today with a regular feeding tube, so pray she tolerates that well.
Again, thank you all so much, and we'll keep you up to date!
Saturday, April 26, 2014
Monday, April 21, 2014
Week 36...
9 months.
We hit 9 months today.
We've had doctors tell us she won't make it this far. We've had geneticists and doctors that asked if we're sure we want to continue this pregnancy. We, at one point, were told to simply go home and wait....for no heartbeat.
But we fought for her. And a thousand ultrasounds later, and delivery is now 7 days away.
We had our last regular OB appointment and ultrasound today. We gave some little gifts to the receptionists (who have even started offering the remotes to us ;) ), nurse, and our doc as thank yous for putting up with us every week since December 23rd, and as a thank you for not fleeing the country or retiring thanks to all of our endless questions and freak out moments. We gave and received hugs, and we prayed together one last time.
I've been to Target for hospital/Ronald McDonald House stuff no less than four times in the last 2 days. I think the cashiers are taking bets on what time I'll be in tomorrow. I've made lists of to-do's without actually doing much of them yet...i.e. hospital bag...eek! Should really get that done!!!
We've had many people ask how we're coping/doing with this being so soon, and honestly, we don't really know how to answer that. We've been having a lot of family time with the kids. We've done a lot of talking through things in preparation. We've tried our best to get schedules ready.
But in terms of the actual delivery...I honestly don't know how to answer that. On one hand, I'm panicking and freaking out about c-section again. I'm fearful that I won't hear her first cry. I'm nervous as to how she'll do during delivery or if she'll be in any distress. I'm curious if we'll get to see her before she's whisked to the adjoining room where her doctors will begin to care for her. I'm scared but prepared that we might not be able to hold her...and yet on top of all of this, there are moments of calm, which can only be of the Holy Spirit and nothing else.
So this week, we pack. We attack the to do lists. We give up on the lists and sit and cuddle the sleepy two year old, or play cars with the four year old. We pack. Then we realize we needed something in the bag, wear it, wash it, pack it again. We try to remember to pray before letting fear set in on the moments we get nervous. We hold back tears. We let tears flow. We lean on one another. We talk about this with the kids. They're excited for all of the grandparent spoiling they're about to receive. We pray.
And we try to remember that,
" '..My thoughts are not your thoughts,
neither are your ways My ways, ' declares the Lord.
'As the heavens are higher than the earth,
so are My ways higher than your ways,
and My thoughts than your thoughts.
As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower
and bread for the eater,
so is My Word that goes out from My mouth;
It will not return empty,
but will accomplish the purpose for which I
have sent it.' "
Isaiah 55:8-11
We trust in the Lord.
And we pray and ask for prayers:
Praises:
-We've made it to 36 weeks!!!
-We've been surrounded by SO many people that have loved on us and encouraged us, and prayed for us.
-That the Lord provided to meet our EVERY need.
-We've been blessed with an amazing medical team, both here and in KC.
-When we've lost our grip on this, He's pulled us back to Him and reminded us of His love.
Prayers:
~For safety in travel for all family that will be coming from Iowa in the coming weeks starting this weeks, and also safety in travel for us to and around KC. (We head over very early Friday morning).
~For wisdom and discernment of the doctors, especially during the last sonogram on Friday morning at 11am.
~For a sort of retreat weekend between Alan and I, and time in the Word and prayer as we anticipate Monday's delivery.
~For a safe and healthy delivery for me, and that Chloe would do great during it as well.
~For no surprise issues at birth for Chloe.
~For peace in our hearts.
~For peace in our children's hearts as we're away from them.
~For sanity for the grandparents who will be loving on the kiddos.
~For the Lord's will in all of this, that it would bring Him glory.
Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
I will call upon Your name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine
We hit 9 months today.
We've had doctors tell us she won't make it this far. We've had geneticists and doctors that asked if we're sure we want to continue this pregnancy. We, at one point, were told to simply go home and wait....for no heartbeat.
But we fought for her. And a thousand ultrasounds later, and delivery is now 7 days away.
We had our last regular OB appointment and ultrasound today. We gave some little gifts to the receptionists (who have even started offering the remotes to us ;) ), nurse, and our doc as thank yous for putting up with us every week since December 23rd, and as a thank you for not fleeing the country or retiring thanks to all of our endless questions and freak out moments. We gave and received hugs, and we prayed together one last time.
I've been to Target for hospital/Ronald McDonald House stuff no less than four times in the last 2 days. I think the cashiers are taking bets on what time I'll be in tomorrow. I've made lists of to-do's without actually doing much of them yet...i.e. hospital bag...eek! Should really get that done!!!
We've had many people ask how we're coping/doing with this being so soon, and honestly, we don't really know how to answer that. We've been having a lot of family time with the kids. We've done a lot of talking through things in preparation. We've tried our best to get schedules ready.
But in terms of the actual delivery...I honestly don't know how to answer that. On one hand, I'm panicking and freaking out about c-section again. I'm fearful that I won't hear her first cry. I'm nervous as to how she'll do during delivery or if she'll be in any distress. I'm curious if we'll get to see her before she's whisked to the adjoining room where her doctors will begin to care for her. I'm scared but prepared that we might not be able to hold her...and yet on top of all of this, there are moments of calm, which can only be of the Holy Spirit and nothing else.
So this week, we pack. We attack the to do lists. We give up on the lists and sit and cuddle the sleepy two year old, or play cars with the four year old. We pack. Then we realize we needed something in the bag, wear it, wash it, pack it again. We try to remember to pray before letting fear set in on the moments we get nervous. We hold back tears. We let tears flow. We lean on one another. We talk about this with the kids. They're excited for all of the grandparent spoiling they're about to receive. We pray.
And we try to remember that,
" '..My thoughts are not your thoughts,
neither are your ways My ways, ' declares the Lord.
'As the heavens are higher than the earth,
so are My ways higher than your ways,
and My thoughts than your thoughts.
As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower
and bread for the eater,
so is My Word that goes out from My mouth;
It will not return empty,
but will accomplish the purpose for which I
have sent it.' "
Isaiah 55:8-11
We trust in the Lord.
And we pray and ask for prayers:
Praises:
-We've made it to 36 weeks!!!
-We've been surrounded by SO many people that have loved on us and encouraged us, and prayed for us.
-That the Lord provided to meet our EVERY need.
-We've been blessed with an amazing medical team, both here and in KC.
-When we've lost our grip on this, He's pulled us back to Him and reminded us of His love.
Prayers:
~For safety in travel for all family that will be coming from Iowa in the coming weeks starting this weeks, and also safety in travel for us to and around KC. (We head over very early Friday morning).
~For wisdom and discernment of the doctors, especially during the last sonogram on Friday morning at 11am.
~For a sort of retreat weekend between Alan and I, and time in the Word and prayer as we anticipate Monday's delivery.
~For a safe and healthy delivery for me, and that Chloe would do great during it as well.
~For no surprise issues at birth for Chloe.
~For peace in our hearts.
~For peace in our children's hearts as we're away from them.
~For sanity for the grandparents who will be loving on the kiddos.
~For the Lord's will in all of this, that it would bring Him glory.
"Oceans (Where Feet May Fail)" {Hillsong United}
You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand
And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now
So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand
And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now
So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
I will call upon Your name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine
Friday, April 18, 2014
Saturday, April 12, 2014
"He has made everything beautiful in its time..."~Delivery Date {Part 2}
In the previous post, I mentioned how the doctors were going to have their round table discussion and decide dates for us to head over.
I didn't know I'd get that call when I was home alone with the kids before Alan was home from work. And I didn't expect to hear the words April 28th.
Apparently when the doctors met, they decided it's best to deliver the micro-minute that we hit 37 weeks. We're to head to KC on the 24th or morning of the 25th. Ultrasound morning of the 25th, required to stay at Ronald McDonald house for the weekend (can't come home to Manhattan and then back) and deliver first thing Monday morning April 28th.
I was shocked. I didn't understand why they bumped it up another week-and deliver none-the-less, not just be monitored for the week and perhaps deliver at week 38.
I was caught off guard and not sure what to say, so I'm still not even entirely sure why they are so concerned and bumped the date up nearly 2 weeks. Needless to say, we have a ton of questions for my regular OB at Monday's appointment and ultrasound...
Is it due to her size? And what if she puts on more weight and really gains?? Can we just monitor at that point and not deliver the moment we're 37 weeks?
Will she need the steroid shot for her lung maturity before surgery??
What expected weight do they think she'll be at that point?
And so much more. Some have said, "Oh, 37 weeks-that's full term!" But we're not thrilled. She's still so small and has the world stacked against her because of her conditions and weight. For a normal, healthy pregnancy to go into labor or be delivered at 37 weeks is one thing...but in Chloe's case...
We're thankful beyond measure to our families-esp. grandparents who have already been nearly all lined up for what days/week they can come and will mostly watch the kids for us in Manhattan. Bummed that we can't take the kids with us now like originally planned for some last minute family time doing things in KC, but at the same time, don't want to risk them doing the ultrasound on the 25th, and then for whatever reason say let's deliver now and us have the kids with us. The majority of May is already scheduled for family helping, but a few days the kids might be with us, and once we know those days, we'll let those of you in KC who have offered to watch the kids during the day for us know the schedule to sign up for days/times.
Prayer warriors, please pray...
-For growth. PLEASE beg the Lord to grow our sweet girl and pack that weight on her.
-For wisdom and discernment for both us and all of our doctors. Please pray for the discernment and guidance of our OB here in Manhattan. We have so many questions and concerns to go over on Monday, and at the same time, don't even know what to ask...praying we can go over the report from Children's and gain more clarity on why this got bumped up.
-For focus. So much to do before then, and yet also balance family time.
-For knowledge. We've made two trips to Labor & Delivery this past week. Once because she was not showing much movement, which the nurse from Children's said to really watch for, but in this case, it's SO hard to know what movements are like-she's small, placenta is in front, and mosaic trisomy 22 trait is low muscle tone. I was also cramping a lot yesterday and we wanted to play it safe and make sure that it was signs of preterm labor (I never went into natural labor with the other two, so I don't really know what to watch for, even being told a million times). Praise the Lord, she started moving more, and yesterday her monitoring looked great. She was very upset that the monitor was snug around her, and tried her best to kick that thing off ;).
-For peace. I asked Alan today while we sat and watched the kiddos play at the park what his thoughts were, "Are you freaking out a bit too?" was the way I phrased it. Thankfully he said yes ;)-didn't want to be the only one freaking out! But mainly because we just don't know what any of this will look like or what to expect, what to ask, what to advocate for. You can only read, google, try to gather or prepare so much, and yet, until it's upon you...we don't know what to do.
-For peace for me and safety/health for C-Section. Really scared to deliver in a hospital I don't know, with doctors I don't know and nurses I don't know, and not be able to hold our daughter or feed her. However, I will add, I'm so thankful for the Lord's gift of modern medicine and the fact that we do have such things as c-sections, especially considering if we'd planned a natural birth with her (if my other children weren't c-sections), then the labor itself might cause her even more distress with her heart. Every mom has an idea of what she wants the birth of her child to be like, some write up their birth plan. But no mom says she wants a c-section at a Children's hospital with doctors she doesn't know and a NICU team on standby. That's rarely in the birth plan. For those of you delivering in the coming months, embrace the gift of the birth of your child. Be thankful for modern medicine if you do end up needing a c-section. Be thankful for the epidural and just get it already if you're in that much pain ;). Be thankful that you can hold your child close to your chest and breathe in their newness. If your birth plan doesn't exactly go accordingly, be thankful your child comes safely and healthy.
Thank you in advance for all of the prayers on behalf of our family, and for all of the help, meals, emails with encouragement, and especially to the angels that fixed our van ;). You are all loved and thought of often with joy in our hearts as we see the family of Christ come together through you. Thank you for being His hands and feet.
I didn't know I'd get that call when I was home alone with the kids before Alan was home from work. And I didn't expect to hear the words April 28th.
Apparently when the doctors met, they decided it's best to deliver the micro-minute that we hit 37 weeks. We're to head to KC on the 24th or morning of the 25th. Ultrasound morning of the 25th, required to stay at Ronald McDonald house for the weekend (can't come home to Manhattan and then back) and deliver first thing Monday morning April 28th.
I was shocked. I didn't understand why they bumped it up another week-and deliver none-the-less, not just be monitored for the week and perhaps deliver at week 38.
I was caught off guard and not sure what to say, so I'm still not even entirely sure why they are so concerned and bumped the date up nearly 2 weeks. Needless to say, we have a ton of questions for my regular OB at Monday's appointment and ultrasound...
Is it due to her size? And what if she puts on more weight and really gains?? Can we just monitor at that point and not deliver the moment we're 37 weeks?
Will she need the steroid shot for her lung maturity before surgery??
What expected weight do they think she'll be at that point?
And so much more. Some have said, "Oh, 37 weeks-that's full term!" But we're not thrilled. She's still so small and has the world stacked against her because of her conditions and weight. For a normal, healthy pregnancy to go into labor or be delivered at 37 weeks is one thing...but in Chloe's case...
We're thankful beyond measure to our families-esp. grandparents who have already been nearly all lined up for what days/week they can come and will mostly watch the kids for us in Manhattan. Bummed that we can't take the kids with us now like originally planned for some last minute family time doing things in KC, but at the same time, don't want to risk them doing the ultrasound on the 25th, and then for whatever reason say let's deliver now and us have the kids with us. The majority of May is already scheduled for family helping, but a few days the kids might be with us, and once we know those days, we'll let those of you in KC who have offered to watch the kids during the day for us know the schedule to sign up for days/times.
Prayer warriors, please pray...
-For growth. PLEASE beg the Lord to grow our sweet girl and pack that weight on her.
-For wisdom and discernment for both us and all of our doctors. Please pray for the discernment and guidance of our OB here in Manhattan. We have so many questions and concerns to go over on Monday, and at the same time, don't even know what to ask...praying we can go over the report from Children's and gain more clarity on why this got bumped up.
-For focus. So much to do before then, and yet also balance family time.
-For knowledge. We've made two trips to Labor & Delivery this past week. Once because she was not showing much movement, which the nurse from Children's said to really watch for, but in this case, it's SO hard to know what movements are like-she's small, placenta is in front, and mosaic trisomy 22 trait is low muscle tone. I was also cramping a lot yesterday and we wanted to play it safe and make sure that it was signs of preterm labor (I never went into natural labor with the other two, so I don't really know what to watch for, even being told a million times). Praise the Lord, she started moving more, and yesterday her monitoring looked great. She was very upset that the monitor was snug around her, and tried her best to kick that thing off ;).
-For peace. I asked Alan today while we sat and watched the kiddos play at the park what his thoughts were, "Are you freaking out a bit too?" was the way I phrased it. Thankfully he said yes ;)-didn't want to be the only one freaking out! But mainly because we just don't know what any of this will look like or what to expect, what to ask, what to advocate for. You can only read, google, try to gather or prepare so much, and yet, until it's upon you...we don't know what to do.
-For peace for me and safety/health for C-Section. Really scared to deliver in a hospital I don't know, with doctors I don't know and nurses I don't know, and not be able to hold our daughter or feed her. However, I will add, I'm so thankful for the Lord's gift of modern medicine and the fact that we do have such things as c-sections, especially considering if we'd planned a natural birth with her (if my other children weren't c-sections), then the labor itself might cause her even more distress with her heart. Every mom has an idea of what she wants the birth of her child to be like, some write up their birth plan. But no mom says she wants a c-section at a Children's hospital with doctors she doesn't know and a NICU team on standby. That's rarely in the birth plan. For those of you delivering in the coming months, embrace the gift of the birth of your child. Be thankful for modern medicine if you do end up needing a c-section. Be thankful for the epidural and just get it already if you're in that much pain ;). Be thankful that you can hold your child close to your chest and breathe in their newness. If your birth plan doesn't exactly go accordingly, be thankful your child comes safely and healthy.
Thank you in advance for all of the prayers on behalf of our family, and for all of the help, meals, emails with encouragement, and especially to the angels that fixed our van ;). You are all loved and thought of often with joy in our hearts as we see the family of Christ come together through you. Thank you for being His hands and feet.
Children's Visit #3 Recap Part 1
I've tried multiple times to write this post.
I tried the day after our visit, but didn't know what to say.
I tried writing it in my head the other day so I'd know what I wanted to say and could blurt it out and get back to the kids.
I tried writing a raw version-from the heart-but it made even myself nervous ;)
I tried writing a normal facts only post, but got a call from Children's in the process of writing it. Literally had to take notes in the blog "new post" page. Glad I didn't accidentally hit the "publish" button on that one.
I'm trying now, but with funny google text messages coming through from my husband, who is downstairs with the kids, and making me laugh and get distracted.
Sigh. I'll try again...
I don't exactly know how to sum up our visit last Monday at Children's. We went in thinking simple, easy ultrasounds just to check on things. We only had regular ultrasound, the echocardiogram on her heart, meet with social work about the Ronald McDonald house, and meet with Palliative Care team {didn't really know why or what we'd discuss there, but weren't intimidated}. We were mainly just thankful it was only a morning of appointments and not all day this time.
But we were surprised at how the day turned out.
First ultrasound went great. Chloe was in vertext (head down) position and got good images and passed her BPP (biophysical profile that checks four specific things) right off the bat. Everything else looked good. Weight made us nervous, being that she was only still at 2lbs 11 or 12oz, but the fact that she put on something this month made us happy.
But then OB came in and was asking if we had dates yet to come over. Nope-that was to be discussed today. So he said that most likely we're still on for coming over at week 38, but that he's a bit concerned at her slowed growth. I asked in what way/how much should she weigh and he said at this point she should be between 3lbs and 3.5lbs...she hasn't even hit the 3lb mark yet, and it made him nervous. He talked slightly about the possibility of us coming over a bit earlier, but sounded like mainly for keeping me close to the hospital and monitoring. The OB left, and I lost it. Not really sure why it hit me at that moment of all moments because he didn't seem too concerned just yet, but he did say it would greatly depend on the round table discussion with the other doctors to see what they thought, and that wouldn't be till later that day after we'd left. Thankfully one of the nurses handed me kleenex and then tried to take my mind off it by complimenting me on my shoes, which worked, a tiny bit.
Next was fetal echocardiogram {aka ultrasound on Chloe's heart}. We were happy to finally know she was in vertex position to get good images, but in true Chloe fashion, the sonotech got started and said, "Um, no she's not-she's transverse." Wait-what? She was JUST vertex at the last appointment! Yep. She flipped around somewhere between the two ultrasounds, and now was back in a not so good position for images, which is exactly what we got...not so good images.
Chloe's fetal cardiologist met with us next, and her nurse coordinator Amy came with her. Amy grabbed a box of kleenex to have ready at hand, but Dr. Swanson laughed and said we shouldn't need those today. She started in repeating what Chloe's heart condition is just to review, but somewhere in discussing this, she started talking worst case scenario, but without actually saying those words. Instead, things like, "...most kids I focus on heart, but Chloe's condition, we look at all the issues, and she has a lot stacked against her. I can't say 70% or 30% or what chance since we don't usually have cases like Chloe's, but there is that chance she might not make it home." Kleenex. NOW. Wow...didn't see that coming. The term stillbirth even came up again, along with a lump in my throat.
After that appointment we sat in the waiting area with tears and thinking how in the world this turned into worst case scenario day. We met with social work next, which wasn't so bad, and then palliative care came in. The idea of palliative care (or PACT Team) is to be a liason between the doctors and us-to give us a voice on what procedures we do or do not want Chloe to have, to explain medical stuff, etc. It is made up of (and I could be wrong) but a social worker type person, and two doctors. We met with the social worker person and one of the doctors.
Wasn't sure I wanted to share the weight of this next appointment here on the blog, but I feel without sharing it, the weight of what we're going through would be somewhat sugar-coated...and I've committed to keeping this as real as possible so that others know how to be praying for our hearts...
The social worker with PACT started off asking how our morning was so far and I burst into tears and explained it was turning into worst case scenario day and we were drained. She listened to us share why, then asked what our hopes are for Chloe, and we answered get her healthy, get her home, figure out the new normal for our family. She responded good-you understand there is ALWAYS hope. That hope might change, but there is always HOPE. Then she said, "What's your biggest fear?" Without a beat we said, "We lose her. She doesn't make it." The PACT lady said something to the effect of good that we understand that possibility. The she asked, "And what are your wishes should she not make it?" Excuse me? We just said we were drained from "worst case scenario day" and you want us to spontaneously answer that question? We shook our heads in disbelief and even said we didn't exactly understand how to answer-what did she mean by our wishes? She said, "Do you want to hold her? Do you want to be alone with her or have family with you? Do you want pictures?..." The questions droned on. I think I used half the kleenex box in about two minutes flat. We explained that we spent two months in limbo thinking we were going to lose her at any moment, and that in that time yes, we did discuss these hard questions, but that now, we were choosing to Focus On Life. We were trying to stay POSITIVE. To keep FAITH in all of this, and that we weren't in denial, but that with all due respect, we weren't ready to discuss this today. This lady was a very nice and caring soul, and I know it was probably just protocol, but she explained further that they needed something on file if the time comes and then we could put it out of our minds and stay positive. Our response was no. Not today. Too much to discuss. Too much to think about and we'd do that in our own time.
No parent should EVER have to discuss their wishes should their child die....no parent should ever have to bury a child...can't even explain the heartache of this conversation that day...and in our case, we've already lost one child to miscarriage...we can't fathom losing another baby...
That was the last appointment we had that morning, and it left this incredibly dark hue over what we thought would be an easy morning of appointments. We didn't know how to take the news and assumed all of the team was just trying to prepare us for the worst...just wish we'd know that's what we'd be in for that day so we could prep our hearts and minds and pray for peace in our hearts for those discussions.
So thankful for my amazingly supportive and focused husband, who, repeating the words of a great parenting message we'd listened to on the way over to KC, reminded me...but God....
There is so much we don't understand, but God does.
There is so much we're afraid of but God is already ahead of us in this and He knows our fears.
There are so many questions but God knows the outcome and He'll work all things for the good of those who love Him.
The doctors let us know the worst possible, but with God all things are possible.
Trying to focus on the fact that we can hate all of this, want to run, want to hide, want to scream, but instead choosing to focus on the fact that God is still present, even now. He will not leave us or forsake us. We will hide in the shelter of His wings.
I tried the day after our visit, but didn't know what to say.
I tried writing it in my head the other day so I'd know what I wanted to say and could blurt it out and get back to the kids.
I tried writing a raw version-from the heart-but it made even myself nervous ;)
I tried writing a normal facts only post, but got a call from Children's in the process of writing it. Literally had to take notes in the blog "new post" page. Glad I didn't accidentally hit the "publish" button on that one.
I'm trying now, but with funny google text messages coming through from my husband, who is downstairs with the kids, and making me laugh and get distracted.
Sigh. I'll try again...
I don't exactly know how to sum up our visit last Monday at Children's. We went in thinking simple, easy ultrasounds just to check on things. We only had regular ultrasound, the echocardiogram on her heart, meet with social work about the Ronald McDonald house, and meet with Palliative Care team {didn't really know why or what we'd discuss there, but weren't intimidated}. We were mainly just thankful it was only a morning of appointments and not all day this time.
But we were surprised at how the day turned out.
First ultrasound went great. Chloe was in vertext (head down) position and got good images and passed her BPP (biophysical profile that checks four specific things) right off the bat. Everything else looked good. Weight made us nervous, being that she was only still at 2lbs 11 or 12oz, but the fact that she put on something this month made us happy.
But then OB came in and was asking if we had dates yet to come over. Nope-that was to be discussed today. So he said that most likely we're still on for coming over at week 38, but that he's a bit concerned at her slowed growth. I asked in what way/how much should she weigh and he said at this point she should be between 3lbs and 3.5lbs...she hasn't even hit the 3lb mark yet, and it made him nervous. He talked slightly about the possibility of us coming over a bit earlier, but sounded like mainly for keeping me close to the hospital and monitoring. The OB left, and I lost it. Not really sure why it hit me at that moment of all moments because he didn't seem too concerned just yet, but he did say it would greatly depend on the round table discussion with the other doctors to see what they thought, and that wouldn't be till later that day after we'd left. Thankfully one of the nurses handed me kleenex and then tried to take my mind off it by complimenting me on my shoes, which worked, a tiny bit.
Next was fetal echocardiogram {aka ultrasound on Chloe's heart}. We were happy to finally know she was in vertex position to get good images, but in true Chloe fashion, the sonotech got started and said, "Um, no she's not-she's transverse." Wait-what? She was JUST vertex at the last appointment! Yep. She flipped around somewhere between the two ultrasounds, and now was back in a not so good position for images, which is exactly what we got...not so good images.
Chloe's fetal cardiologist met with us next, and her nurse coordinator Amy came with her. Amy grabbed a box of kleenex to have ready at hand, but Dr. Swanson laughed and said we shouldn't need those today. She started in repeating what Chloe's heart condition is just to review, but somewhere in discussing this, she started talking worst case scenario, but without actually saying those words. Instead, things like, "...most kids I focus on heart, but Chloe's condition, we look at all the issues, and she has a lot stacked against her. I can't say 70% or 30% or what chance since we don't usually have cases like Chloe's, but there is that chance she might not make it home." Kleenex. NOW. Wow...didn't see that coming. The term stillbirth even came up again, along with a lump in my throat.
After that appointment we sat in the waiting area with tears and thinking how in the world this turned into worst case scenario day. We met with social work next, which wasn't so bad, and then palliative care came in. The idea of palliative care (or PACT Team) is to be a liason between the doctors and us-to give us a voice on what procedures we do or do not want Chloe to have, to explain medical stuff, etc. It is made up of (and I could be wrong) but a social worker type person, and two doctors. We met with the social worker person and one of the doctors.
Wasn't sure I wanted to share the weight of this next appointment here on the blog, but I feel without sharing it, the weight of what we're going through would be somewhat sugar-coated...and I've committed to keeping this as real as possible so that others know how to be praying for our hearts...
The social worker with PACT started off asking how our morning was so far and I burst into tears and explained it was turning into worst case scenario day and we were drained. She listened to us share why, then asked what our hopes are for Chloe, and we answered get her healthy, get her home, figure out the new normal for our family. She responded good-you understand there is ALWAYS hope. That hope might change, but there is always HOPE. Then she said, "What's your biggest fear?" Without a beat we said, "We lose her. She doesn't make it." The PACT lady said something to the effect of good that we understand that possibility. The she asked, "And what are your wishes should she not make it?" Excuse me? We just said we were drained from "worst case scenario day" and you want us to spontaneously answer that question? We shook our heads in disbelief and even said we didn't exactly understand how to answer-what did she mean by our wishes? She said, "Do you want to hold her? Do you want to be alone with her or have family with you? Do you want pictures?..." The questions droned on. I think I used half the kleenex box in about two minutes flat. We explained that we spent two months in limbo thinking we were going to lose her at any moment, and that in that time yes, we did discuss these hard questions, but that now, we were choosing to Focus On Life. We were trying to stay POSITIVE. To keep FAITH in all of this, and that we weren't in denial, but that with all due respect, we weren't ready to discuss this today. This lady was a very nice and caring soul, and I know it was probably just protocol, but she explained further that they needed something on file if the time comes and then we could put it out of our minds and stay positive. Our response was no. Not today. Too much to discuss. Too much to think about and we'd do that in our own time.
No parent should EVER have to discuss their wishes should their child die....no parent should ever have to bury a child...can't even explain the heartache of this conversation that day...and in our case, we've already lost one child to miscarriage...we can't fathom losing another baby...
That was the last appointment we had that morning, and it left this incredibly dark hue over what we thought would be an easy morning of appointments. We didn't know how to take the news and assumed all of the team was just trying to prepare us for the worst...just wish we'd know that's what we'd be in for that day so we could prep our hearts and minds and pray for peace in our hearts for those discussions.
So thankful for my amazingly supportive and focused husband, who, repeating the words of a great parenting message we'd listened to on the way over to KC, reminded me...but God....
There is so much we don't understand, but God does.
There is so much we're afraid of but God is already ahead of us in this and He knows our fears.
There are so many questions but God knows the outcome and He'll work all things for the good of those who love Him.
The doctors let us know the worst possible, but with God all things are possible.
Trying to focus on the fact that we can hate all of this, want to run, want to hide, want to scream, but instead choosing to focus on the fact that God is still present, even now. He will not leave us or forsake us. We will hide in the shelter of His wings.
"When I said, "My foot is slipping," Your love, O Lord, supported me. When anxiety was great within me, Your consolation brought joy to my soul." Psalm 94:18-19
Wednesday, April 2, 2014
Signs of Spring
Last night after putting kids in bed...ish (aka they fought bedtime for quite a while), I happened to notice the sunset out the door window as I was coming downstairs. It was beautiful-firery oranges and pinks, but still with white clouds against the blue sky. I stood there at the window for a moment and prayed, and while watching the sunset, I noticed that the tree in our yard, and the neighbor's hard, has buds on it.
Spring is here. Sixty degrees and rainy today. April showers bring May flowers, right? {Click here to see some beautiful free printables by my favorite graphic designer. I have one printed out and framed on our entryway table. And this one as well which is taped to my chalkboard in my office right now.}
Spring is here. Buds are on the trees, weather is getting nicer {and windier!} Hope has sprung. Easter will be here soon. We'll remember why He came to die-to give us Life. We'll celebrate why He clung to a cross-to give us Hope.
Spring is here. That means Chloe comes soon. We hit 33 weeks this week, and our doctors even breathed a slight sigh of relief that we've passed the 32 week mark. We'll pray she makes it full term. We're thrilled she's packing on the weight {2lbs 2oz back at the beginning of the month; 2lbs 14oz this week}.
The house is beginning to show signs of all things baby, even if we can't bring her home for nearly a month or more after she comes in May. It's the planner-the nester in me. With everything else we'll be focused on {making sure she's feeding ok, making sure she's not turning blue if she doesn't have that first heart surgery! That one freaks me out, a lot! Making sure we're figured out meds and so on}, I want to at least know when we walk through the doors a month after delivery that everything else is ready.
A friend blessed us with a swing/vibrating seat for her. I'm googling today how to clean the seat lining to the kids' old carseat {why does it not have washing instructions on it!!}{I think carseats and DIY nursery decor are about the only thing my husband and doctor have allowed me to google these days!}, and excited to put in the new carseat head protection for wee little babies and carseat straps...they're pink with little grey birds ;). Bought a cute little headband set. Found a set of pink crib sheets on clearance {Lord knows we'll need them, esp. since she'll have a G-Tube and might have many messes...and because a certain older sister ruined all the other ones with the great crayon-in-the-washer-and-dryer-incident}. Bought my first ever pack of preemie sized diapers...CANNOT believe how TINY they are! Tempted to put one on Abi's baby doll for a size comparison pic. Washing up all the receiving blanket material I bought for a friend to sew the edges-will need them to tuck beside her in her crib and carseat since she'll be so little. Laying in bed at night feeling her movements. And she flipped-head down now, but still CSection. Still thankful for a bit of relief though from her flipping.
I called a friend who'd offered her pack-n-play with bassinet and changing thing on it. Borrowed it the other day and gave her our plain pack n play to borrow. I set it up in our room with the kiddos the other evening. Then yesterday while in the garage I spotted the box from our pack n play, the one we were blessed with as a gift from the staff my husband works with back when our son was born, the box that showed the bassinet included on the side and thought what in the world??? Took the box down and opened it to find, get this, a bassinet attachment and changing thingy. We HAD ONE THIS WHOLE TIME!!! How did I not realize we had this?!? I even borrowed a bassinet when our daughter was born because we were needing one, all the while it was in our BASEMENT! Sigh. So I'll be taking down my friend's and setting up ours instead. Go ahead. Laugh at me. My husband did.
Don't get me wrong-still a LOT of fears and concerns now that we're in the homestretch of 6 weeks till delivery, but continuing to choose to wrecklessly love her.
It was a long winter. The longest I've known. Oh how I wanted to get past the snow and grey and gloom. But I think there are times we have to go through the greyness and gloominess of winter to truly appreciate the blossoms of spring. We have to go through the valleys so that our eyes are forced upward to the Creator of the mountains. We have to feel the burn of fire to appreciate the scent of the spring rain on the way.
New baby birds are chirping. New grass is growing. New stems are starting to burst through the ground. New buds are on the trees. And soon we hope to hear a baby's newborn cry and celebrate new life.
Welcome, Spring.
Spring is here. Sixty degrees and rainy today. April showers bring May flowers, right? {Click here to see some beautiful free printables by my favorite graphic designer. I have one printed out and framed on our entryway table. And this one as well which is taped to my chalkboard in my office right now.}
Spring is here. Buds are on the trees, weather is getting nicer {and windier!} Hope has sprung. Easter will be here soon. We'll remember why He came to die-to give us Life. We'll celebrate why He clung to a cross-to give us Hope.
Spring is here. That means Chloe comes soon. We hit 33 weeks this week, and our doctors even breathed a slight sigh of relief that we've passed the 32 week mark. We'll pray she makes it full term. We're thrilled she's packing on the weight {2lbs 2oz back at the beginning of the month; 2lbs 14oz this week}.
The house is beginning to show signs of all things baby, even if we can't bring her home for nearly a month or more after she comes in May. It's the planner-the nester in me. With everything else we'll be focused on {making sure she's feeding ok, making sure she's not turning blue if she doesn't have that first heart surgery! That one freaks me out, a lot! Making sure we're figured out meds and so on}, I want to at least know when we walk through the doors a month after delivery that everything else is ready.
A friend blessed us with a swing/vibrating seat for her. I'm googling today how to clean the seat lining to the kids' old carseat {why does it not have washing instructions on it!!}{I think carseats and DIY nursery decor are about the only thing my husband and doctor have allowed me to google these days!}, and excited to put in the new carseat head protection for wee little babies and carseat straps...they're pink with little grey birds ;). Bought a cute little headband set. Found a set of pink crib sheets on clearance {Lord knows we'll need them, esp. since she'll have a G-Tube and might have many messes...and because a certain older sister ruined all the other ones with the great crayon-in-the-washer-and-dryer-incident}. Bought my first ever pack of preemie sized diapers...CANNOT believe how TINY they are! Tempted to put one on Abi's baby doll for a size comparison pic. Washing up all the receiving blanket material I bought for a friend to sew the edges-will need them to tuck beside her in her crib and carseat since she'll be so little. Laying in bed at night feeling her movements. And she flipped-head down now, but still CSection. Still thankful for a bit of relief though from her flipping.
I called a friend who'd offered her pack-n-play with bassinet and changing thing on it. Borrowed it the other day and gave her our plain pack n play to borrow. I set it up in our room with the kiddos the other evening. Then yesterday while in the garage I spotted the box from our pack n play, the one we were blessed with as a gift from the staff my husband works with back when our son was born, the box that showed the bassinet included on the side and thought what in the world??? Took the box down and opened it to find, get this, a bassinet attachment and changing thingy. We HAD ONE THIS WHOLE TIME!!! How did I not realize we had this?!? I even borrowed a bassinet when our daughter was born because we were needing one, all the while it was in our BASEMENT! Sigh. So I'll be taking down my friend's and setting up ours instead. Go ahead. Laugh at me. My husband did.
Don't get me wrong-still a LOT of fears and concerns now that we're in the homestretch of 6 weeks till delivery, but continuing to choose to wrecklessly love her.
It was a long winter. The longest I've known. Oh how I wanted to get past the snow and grey and gloom. But I think there are times we have to go through the greyness and gloominess of winter to truly appreciate the blossoms of spring. We have to go through the valleys so that our eyes are forced upward to the Creator of the mountains. We have to feel the burn of fire to appreciate the scent of the spring rain on the way.
New baby birds are chirping. New grass is growing. New stems are starting to burst through the ground. New buds are on the trees. And soon we hope to hear a baby's newborn cry and celebrate new life.
Welcome, Spring.
Tuesday, April 1, 2014
Tonight's Playlist...
All Of Me {Matt Hammitt}
Holding You {Matt Hammitt}
Let Go {Matt Hammitt}
Trust {Matt Hammitt}
God Help Me To Be {Cloverton}
Perfect Peace {Laura Story}
10,000 Reasons {More Than Rubies}
Shepherd God {More Than Rubies}
Make Something Beautiful {Laura Story}
Lord, I Need You {Matt Maher}
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