Me: "Who has the best seat in the house, me or daddy?"

Adam: "Well, Daddy's is nice, but yours is best. Your's is squishier."
Showing posts with label preemie. Show all posts
Showing posts with label preemie. Show all posts

Thursday, March 28, 2013

Blessed and blessed

 
Guy dreamed last night that he was on a roller coaster and he wasn't strapped in.  Sitting sideways in the seat, he was trying to strap himself in, all the while holding on for dear life.
It was a dream and it wasn't.
 
***
 
As of Tuesday afternoon, the Chief of Radiology had agreed with my Perinatologist, Dr. M and my Interventional Radiologist (I.R.), Dr. F. that I should have the filter placed to take me out of danger of a pulmonary embolism and let the baby stay in me longer.  Dr. F. had arranged with his friend up where we were at Roseville to do the procedure, and they were prepping me for it, and even came in and told me to be ready to go any time.  A few hours went by and a nurse came in at about 10PM and said that to make sure my blood thinners had dropped in their levels to make it safe enough, they would wait until morning.
 
I was relieved.  I had been scared about the prep being done right, and it was helpful that I would have a few hours to wrap my head around everything.  I got about 4 hours of sleep.
 
The next morning Guy came very early.  We waited and waited.  The resident and then Dr. M. visited and said that it was a go, and we were just waiting to hear from radiology for someone to come give me the run down and sign consents.  After a few hours, my awesome nurse, Steph, began calling and even took her break time to go past radiology ("I happened to be in the neighborhood," she has said), only to learn I was not on the schedule at all.  A flurry of phone calls, begun by our amazing nurse manager Marina, revealed that while the Chief had approved it, and the Roseville IR from the day before had agreed to proceed, the IR that was on yesterday refused to do the procedure, feeling it was not the right choice.  Dr. M. still wanted it done as did my I.R. from South Sac, and Marina was going to do everything in her power to help, but for now, my very needed procedure was off.
 
I cried.  This meant no procedure for my leg on Friday either, because who knew now when I could be released safely from the hospital.  I looked into a future of debilitation, pain, and swelling for the rest of my life.  It also meant if I was released, that every time I became short of breath there would be a question of a pulmonary embolism, a rush to the hospital, and likely that awful VQ test with radiation.  It also meant a very early delivery in just 2 weeks and a preemie with problems being tended by strangers in the NICU.  I felt defeated, devastated and like letting go of hope.
 
They brought me my blood thinner shot and I sadly took it, and they brought me a tray of food.  I had been so hungry, but the news had killed my appetite.  In just a few minutes, Dr. M. called. "DON'T EAT!" he said, "We may get your filter after all.  I'll call you right back."  Just then my poor dad called.  I had to cut him off and leave him in the dark, the phone line had to stay open and I was mentally gone.  In a few more minutes Dr. M. called and said that he had been talking to Dr.F. at South Sac hospital.  Dr. F. would try to call his IR friend and get him to come in on his day off to do the procedure.  If he couldn't, they would send me to South, where Dr. F. had agreed to place me on his schedule for the day, and not only do the filter, but take care of clearing the clot from my leg at the same time.  I told Dr. M. to skip trying to get the friend in, I wanted to go South.  Dr. M. said "I am putting in orders for your discharge now.  Guy can drive you straight there."
 
Dr. F. texted me while we were on the road to say they were set up and waiting for my arrival (with a smiley face).  When we arrived, they had me brought straight into pre-op where Dr.  F. was waiting.  I was in the procedure within half an hour. 
 
I chose not to be sedated and just got a local.  I can't justify more chemicals going to this baby just because of my fear.  They draped my whole neck, face and then head.  It was rather smothering, even with the airway they made by lifting the corner of the drape.  They wrapped the baby in a lead blanket that would only be opened slightly when it came time to actually place the filter.  It was very scary as they poked the hole in my neck, cut it wider, and pushed the instruments and catheters through the muscle wall, and I am not ashamed to say it hurt like crazy even with the local.  As they worked I could feel my adrenaline spike and the baby kicked constantly through the whole thing, which was reassuring.  As they opened the blanket to scan lower on my chest and belly, I cried at the radiation our baby was getting.  I noticed at that moment, though, that all the movement of the baby, that up till now had been all over my belly, was pressed up to my left side under the lead blanket.  I tried to pray a spiritual blanket to cover the rest of the baby and protect it. 
 
The filter went in well, and Dr. F. announced it as a success, with very little bleeding.
 
 Next he moved to my leg, and rather than open me up and do an x-ray with contrast dye, he performed an ultrasound first.  He found that like last month, the clot had nearly completely disappeared.  This time more than 95% of the clot was gone from my leg, and the parts that remained were very small.  He said if I were his family member, he would not recommend proceeding with the thrombolysis.  He said that my body is responding so well to the medication that he is confident that in the next few days the clot will be completely clear from my leg.   I trust him implicitly and felt very good about his counsel.  I was observed for a while in Labor and Delivery, and though I felt miserable from pain, hunger, shortness of breath, prednisone let down and sheer exhaustion, they saw no need to keep me.  I came home last night to my sweet, glorious family, my luscious bed, and the best food on the planet (I had lost 6 pounds in 9 days).  Last night I slept in my sweetie’s arms for 10 hours.
 
We are so grateful.  I have had so many sacred experiences throughout this journey.  My nurses were so important to me and certain of them, Julie, Jenn L., Steph and Marina, were the moving forces that gave me the support, counsel and resources that I needed that several times changed the whole course of my care.  Others, like Kelli, Stasia, Michelle, Stacie, Catherine and Sharon stepped into a roll of sister and friend allowing me to process my emotions, or just by spending quality time with me and giving me something else to talk about besides PENDING DOOM.  I don't know that they will remember me, but I will always remember them.
  This experience has been a testimony of prayer and of God’s love for all his children.  This has been a gift for all of us, every soul that has prayed and fasted for us and served our family in any way.  This has not been for me.  I believe this has gone the way it has to show that God has this in his hands, and has been aware of the time frames that needed to take place to get me to the safest place possible at each point.  As we look back at the chaotic path we have traveled, we can see God’s plan as it has unfolded intricately in our lives.  I have split my time in prayer between gratitude,  praying for my baby and praying for all of you. 
With the filter I am now safe to carry the baby to 37 or 38 weeks and there are no imminent plans for a preemie anymore.  We are having a brain scan (ultrasound) of baby tomorrow and are praying that despite all the clot crisis, the baby has been tolerating my RH antibody situation.  I am prepared for another ride on the roller coaster, but hoping that it won’t be necessary for baby to have a transfusion.
So, we are home.  I am exhausted and spending precious time with my family.  We won’t be ready for visits for a day or two, and after that it would really help to get a call first before folks drop by.  I am anxious and thrilled to see you, but I am in a lot of pain from the procedure, and coming down off the meds, so I don’t last very long with company, but please know how grateful I am to all of you.  All my love and gratitude!!!!  We are happy and peaceful.

Monday, March 25, 2013

Update


Hello from the hospital.

What a ride.

I haven't got the energy for a well thought out post right now, but I can give an update.

So much has happened in so short a time.  My perinatologist told me I am an enigma; they have never seen this happen before, and so my care is moment by moment as there are no rules to follow with this one.  At the moment we are waiting on test results to see if the new levels of medication are being reached.  The last test found we were on the low side, and that was before they raised their goal for the levels (they wanted to be at .7, they were at .6 and some change).  The new goal is 1.2, safe simply because of my nearly double blood volume from pregnancy.  The first test they drew a few days ago was lost by the lab in San Fransisco, so they drew another that they are waiting to hear back on.

My follow up ultrasound showed no change to my blood clot, which is actually good news.  No change means no growth.  We are hoping it will start to reduce like it did before, but lately all of our prayers are going to getting me safe so that we can keep baby inside.  The clot itself is sort of a back burner issue because the threat to my life is still so high right now.

My perinatologist is talking about delivering me at 32 weeks so that baby will be safe enough and then they can start working on getting me safe.  That is in 2 weeks and 2 days.  As long as I am pregnant and because I managed to reform the blood clot while on blood thinners, I am a bit of a ticking time bomb.  Since pregnancy is the cause, getting me un-pregnant is one of the possible and  most obvious solutions. 

I have been having suspicious episodes of low oxygenation and tight lungs, and the doctors think I may be having Micro-pulmonary embolisms, tiny pieces of the clot which break off and go to my lungs causing distress, but not a full blown PE (embolism).  I am on continuous monitoring, and if I get bad then I am on oxygen.  Friday and Saturday were the worst episodes of these, and yesterday was a bit better.  Today has been a little dicey but not as bad as before.  When these episodes happen, I am suddenly overwhelmed with sleepiness, but when I close my eyes and drift off, I suddenly drop in oxygenation and my alarm goes off.  The drop had not been a big enough drop (into the low 90's) for the nurses to get worried, but then the alarm would wake me, I would breathe, alarm off, doze, O2 drop, alarm, wake, breathe... over and over every 1-3 minutes for over an hour before I had the strength to call for help.  The second event was dropping me into the mid to low 80's, and I am not sure why the nurses were not on top of it, but a later nurse took it very seriously and got a plan put in place to make it so that I don't have to get distressed before I get relief.  Unfortunately, by giving me control of my own oxygen use - having it available to grab if I feel "off"- has made it so that they don't know if I am saturating well on my own or requiring O2, so they had turned it off again, but I began the cycle of drops and am on the O2 at this moment.  Before I can go home they will need to scan my leg again to check the clot size, make sure my levels are okay on the blood thinners, and establish that I am no longer having breathing problems. 

I am researching cord blood banking for the baby in the event the radiation exposure causes cancer later in life.  Looks like it will be $2000-$4000 dollars.  We are also trying to track down an RV so that I can stay here on site after they release me so as to be close to baby if it is in the NICU.  If I can make it to 35 weeks, baby may not have to stay.  Wouldn't that be wonderful? 

My spirits are pretty good.  I do have my moments.  I cry sometimes, but am trying very hard to keep positive hormones flowing throughout my body so that I am creating the most healing chemical environment possible.  I pray a lot.  I ask God to protect the baby and keep me safe so that I can keep the baby inside me and be a mama to all SIX of my sweet kiddos.  I tell him my heart and all that I hope for in detail, if that is His will for me.

Your prayers are so important in all of this.  Each person who prays for me becomes a partner in this plan as it unfolds, and healing and miracles that take place are being called down from heaven by each person who shares their faith with me in that way.  God is using this for His purposes, and I am humbled to be part of the process as he brings others into connection with the Spirit and their capacity to call upon their creator.  I pray each day for you, prayers of gratitude for the offerings that have come in so many ways.  There have been no small offerings of love and support.  I testify that we are God's children and that he loves us, and while I don't know how this will ultimately unfold, I believe we will be held by Him throughout the coming months.