Our Little Cedar Sapling

today was supposed to be surgery day for miss cedar-pants.  we have read a little too much, prepped ourselves as much as possible for two surgeries in 8 days, found some faith that it is all going to be fine, and braced ourselves for whatever outcome occurs.  and now we wait.  cedar’s white blood cell count is high.  it is not any higher than it was yesterday, but the surgeons are not risk-takers.  which is good.  but right now, a little hard to swallow.  she is not showing any sign of infection, and the elevated white cell count could very well be from the steroids she is on.  but the fact is, they don’t know why it is high and until they figure it out, we are on hold.  she has been stable the last day or so.  apparently, she needed a little more time.  they removed her tanning bed this morning, her billi levels are back within normal range.  this means she does not have to wear her paper tanning helmet and we can see so much more of her beautiful little head. we got a one-eye-open goodmorning this morning.  it was really good to see that one eye.  we will give you white blood cell updates as they come.  we are hoping they are within a normal range soon because this surgery is the only way forward right now.  cross your fingers folks…

i am going to make this brief, as it feels much later than it actually is, and we have a meeting in the morning with cedar’s surgeons.  cedar is scheduled for surgery late tomorrow morning.  she has been stable all day and has shown everyone that she is ready.  ready for her heart valve to stop causing trouble. ready to kick the ventilator’s butt.  ready to get off the dang billi lights so that she can look us in the eye again.  ready to grow.  we are ready too.  scary as it is to prepare for yet another operation on our tiny peanut of a girl, this is what is necessary if she is going to start moving forward in her healing.  so once again, it all comes back to trust.  we are choosing to trust that this is the right thing.  right now it is the only answer.  so it is going to be ok.  because it has to be.  a few prayers wouldn’t hurt though.

Surgery for Cedar’s PDA is at this point inevitable so she is tentatively scheduled for Friday – the tentative part mainly has to do with scheduling of the surgeons. Apparently, the ICU is totally full and elective surgeries have been put on hold – while Cedar’s surgery isn’t really elective – it is also not an urgent life saving procedure. Without this surgery, she will be unable to have properly functioning lungs and overall optimum blood pressure and circulation . The main purpose of PDA ligation is to prevent complications of the lungs and the heart due to increased blood flow and pressure.

In my google searching and preemie book reading, I found this explanation of the surgery to be the easiest to understand and the least worrisome:
“PDA ligation/surgery does not require opening the heart. The patient is under general anesthesia during the whole procedure (I was also told that here at Children’s surgeons will likely perform this procedure at her bedside). For breathing – a breathing tube or endotracheal tube is inserted down the throat and is connected to a ventilator (Cedar already has this). The patient will be lie on his/her side with the right side down. The incision is made near the left armpit on the left side of the chest. A small cut is made between the ribs to open the chest cavity to reveal the PDA between the pulmonary artery and the aorta. This incision is called “Left Posterolateral Thoracotomy”. Several nerves like the vagus, phrenic and recurrent laryngeal nerves are close to the PDA shunt. The surgeon takes great care to identify and avoid any damage to these nerves. The PDA is then tied with sutures or closed with surgical clips. Tubes will be placed in the chest cavity to drain the blood and fluid produced after surgery. Then the incision will be closed with sutures, cleaned and dressed.”

Easy as that right? Then I look over at our two pound nugget and wonder how in the world surgeons are able to do such a delicate procedure on such a delicate being…I get scared, I try to avoid googling all the complications and risks associated with this surgery and with Cedar’s current condition in general. Most moments, I’m good at regulating my fear….breathing through it….surrendering to the unknown and trusting that Cedar’s doctors know best and that Cedar is here to stay. She is having a much better day today – more stable, although she is no longer being called that. The hope is that after this surgery she will be able to have the foundation to really overcome all the other issues she is dealing with. I have no doubt that we’ll be on a run of good days again soon and that she’ll be breathing again on her own in the near future. In the meantime, we wait and we trust.

This is a song that my good friend Joe Stevens (of the band Coyote Grace) wrote…                             it has been infusing us with much comfort and hope for Cedar…

Little Tree – Coyote Grace

Little tree, the moon is high
Darkness covers the world tonight
From your tiny seed, I’ve watched you grow
Cradled in the dirt, your soul
The earth will teach you all it knows

Little tree, don’t be afraid
Dream your dreams of making shade
If the wind blows strong, then learn to bend
If the fire burns, don’t fear the end
Take joy in holding a nest for a friend

Little tree, the sun is here
There’s a reason you were planted here
Though you may be weak and small today
May your roots grow deep so you may sway
You’re of this world, this beautiful day

Cedar Francis – 2 weeks old

Last night Heather headed back to bellingham. Needless to say, i don’t think either of us slept – we have become so accustomed to sharing this single bed at children’s hospital. I’m trying not to dwell on being here without a hand to hold and someone to help ingest every new piece of information about Cedar.

Heather is starting a new teaching job and I couldn’t be more proud of her. when i think about how hard it feels to be here without her I am immediately reminded of how hard it would be to leave here – sure, be in the comfort of our home and back with our other daughter hazel, but away from Cedar…and how can you focus on a new job when all of this is going on? Heather is incredibly strong and such an amazing teacher – i have no doubt she will be able to find a balance.  We will find a balance…

Today was a rough day for Cedar as well. Early this morning her blood pressure started to drop, her blood gases were coming back high and she wasn’t responding very well to ventilator changes. After another chest xray it was apparent that her lungs have taken on lots of fluid again and her PDA is now really starting to affect her overall health. Thus, surgery is back on the table. At our meeting with the doctors this morning the word “stable” wasn’t part of the vocabulary – after a few days of ease, this is hard to take. Cedar was put on a blood pressure medication. She was given a platelet transfusion and a blood transfusion. They also started her on another antibiotic which will also cover viral infections (some of her symptoms could indicate she is dealing with infection as well). Cedar also had to have a new arterial line put in so that they can more accurately monitor her blood pressure – this also makes it much easier to draw blood (for the past few days they have had to prick her heel and squeeze blood out for testing). The other hurdle we are up against is that her lung function seems to be decreasing and she may need to be moved to an oscillator vent as early as this evening. This different kind of ventilator puts less pressure on the lungs and uses a higher frequency air exchange to help clear out bad gases more easily – the drawback to the oscillator is that it is louder and makes the baby appear to vibrate – it also has a rigid tube which means that Cedar wouldn’t be able to be repositioned and/or held. Lastly, Cedar is still on a morphine drip which has made her very sleepy for a few days now. I haven’t seen her open her eyes since Saturday….i miss seeing them. Cedar seems comfortable enough all swaddled in her bed – but it is getting more and more difficult as the days go on to not be able to hold her – and the tubes and tape all over her body seem to be increasing. I know our baby is under there somewhere.

So what’s next? The big thing is surgery. It sounds very likely that she will be needing surgery to close her PDA. We are tentatively scheduled for surgery on Friday. Until then, we’re praying that Cedar can get stronger and stronger….please keep us all in your thoughts.

i guess you could liken this roller coaster we are on to space mountain, as it feels we are in the dark and have no idea what is coming next.  right now we are riding steady- stability continues to be the theme this week.  there are no major changes to report.  cedar’s doctor said again this morning that she ‘looks great’.  he called her pink and cute. which she is. they have her on a 10-day round of antibiotics to fight any infection that may result from her surgery.  she continues to need the vent and will probably need it for a while, but this is not unexpected after a major surgery on such a tiny tater tot.  she resembles a burrito all swaddled up in her receiving blanket.  she is so much calmer now that she has something to push against. that is all for now.  no news really is good news at this point.

it is almost 9 am on what is probably one of the last sunny summer sundays of the year.  i am planted firmly in a chair at cedar’s bedside-right where i promised mama-bear amber i would spend this day.  she woke up missing home this morning and knowing that i am headed up north tomorrow to start work, i kind of pushed her out the door.  she is needing some animal therapy, some hazel therapy, some little piece of normal.  i worry about her loneliness when i leave this place.  i worry that she won’t go outside.  i worry about my torn heart- wanting desperately to stay in this chair, but needing to go begin the new school year.  i know that there is a balance here somewhere.  yesterday, we had a party and  it was exactly the soul-food we were needing.  a little slice of normal everyday has become the new goal.  a sweet friend told me yesterday that we may just be the sanest people she knows.  it struck me as funny at the time, but when amber and i were talking about it later, we had to agree.  we are maintaining sanity in crazy-ville.  our entire world has been turned completely upside down in a way that we could never have prepared for-and we are still standing. still holding each other up.  still laughing everyday.  we cry everyday too-don’t get me wrong, but we are aware of our strength in almost every moment.  we have a pretty solid foundation 7 and 1/2 years in, and while it does not at all make this easy, it makes it do-able.

that is enough about us-you are really reading this for a cedar update, so i will give you one.

the surgeons came into check on her this morning and are very pleased with her progress.  her incision site is not showing signs of infection.  this morning, the nurse did hear the heart murmur which really doesn’t tell us anything.  when they don’t hear it, it could be that the valve is open so wide that it does not even make a sound; when they do hear it, it could be that it is closing enough to be making the ‘whooshing sound’ that they call a murmur.  so we take that information and just continue to hope that it closes on its own.  which it can do, so you can hope for that too.  cedar is still using the vent to breathe.  there was talk yesterday of beginning to wean her off, but that process has not begun yet.   yesterday we found out that the grade 1 brain hemorrhage we thought we were looking at is actually a grade 3.  this means that at some point, there was a fairly significant brain bleed and the good news is that her brain is not actively bleeding now.  there is nothing they can do about this except monitor it for swelling or active bleeding.   cedar continues to ‘look great’.  i cannot count how many times we have heard this from doctors, surgeons, nurses, and friends.  it is pretty incredible how easy it is to look beyond the machines and the tubes and just see this amazing little being who is fighting so hard to be here.  she is a fighter, that much we know.   she is once again gaining a reputation for being feisty- she is incredibly active, and incredibly charming.  she has a whole new staff of nurses to woo, and she does it well.  right now, she is swaddled, which seems to be calming for her.  she looks peaceful.  i just went to rounds and it was the briefest meeting we have had to date.  no real changes to report.  the doctor did say that surgery to close the valve is not even on the table at this point because it does not seem necessary right now.  this is good news.  the consensus at rounds was ‘stable’.  more good news.  so, your prayer list if you want something specific to focus on:  continued healing of cedar’s brain, her heart valve to close on its own, continued healing from surgery, successful weaning off the vent, and billi levels staying low.  thanks friends. we love you. now go outside and enjoy this beautiful day.

as many of you know, today was to be our wedding day.  instead we are choosing to celebrate love and to embrace our new normal.  we have been looking forward to so many things this summer: the wedding, my new teaching job, hazel starting middle school, and of course cedar’s arrival.  we kinda thought that things were going to happen in that order, but miss cedar really wanted to be first.  we have been dreaming of cedar’s participation in our wedding day-perhaps being pulled down the aisle by big sister hazel in a wagon.  it is a vision that makes this day a little easier to take.  spending time holding cedar’s hands as she heals and grows keeps us going.  feeling the love from around the country keeps us going.  we are still going strong.  cedar is so strong.  we met with her new team of doctors and nurses this morning for our first ’rounds’ in our new hospital.  the word ‘rockstar’ was thrown about.  the word ‘stable’ has become a new favorite.  she is stable today.  the surgeons came this morning and are happy with her recovery so far.  they did not hear the heart murmur this morning.  that does not necessarily mean that the heart valve has closed, but they are not concerned about it today.  we will take that.  her lungs are continuing to improve and they will be weaning her off of the ventilator for the next few days.  we will take that too.  we are so happy to be at children’s where it seems everyone is so confident in what they are doing.  we walk the art filled hallways getting to know our new temporary home and feel like we can breathe a little easier.  amber was able to rest some last night, knowing that cedar is in the best place she can be in the best most caring and competent hands available.  we are even leaving here for a few hours today to spend some time with family and friends.  it is not our wedding day, but our hearts are filled with love and hope and trust and right now, that is all we need.

Late last night we were woken up by the head nurse – something I have been dreading….to tell us that Cedar needed us because there had been a development. Throughout the night Cedar’s oxygen levels were all over the place so the doctor decided to order a chest xray to look at the lungs. The xray came back showing that her lungs were full of fluid again but more concerning was that her bowel showed significant leakage – meaning a bowel perforation. This is fairly common in preemies – although very serious – and also potentially a side effect from the medicine she was given over the past few days for her PDA. We were transported to Children’s Hospital around 4am and are now waiting while Cedar is in surgery to hopefully correct the tear in her bowel. The good news is that Cedar is very strong and all her vitals were very good considering how much pain and possible infection is going on in her body. We’ll have more updates soon. In the meantime, please pray for Cedar and the surgeons…this is just another step back…but we know there will be forward steps made again soon. holding on for now…

UPDATE:

Good news!!!! Cedar was rock solid during surgery and the damage to her bowel was just a pin hole really…best case scenario – they only had to take out 4cm of intestine. Here’s to a speedy recovery and warding off all infection…

Cedar Francis recovering from surgery. We are so in love with this little trooper…

Baby Cedar has had a busy morning already…2 failed attempts at an IV..finally got one in her foot so that she is all set for a blood transfusion here shortly…we knew this was coming. She will hopefully feel so much better after getting a boost of blood – for the past week it has just been take take take from that little body of hers. Please pray for a smooth process and continued ease on Vapotherm….

Right before her blood transfusion, I was able to hold Cedar for the 2nd time – only this time it was our first skin to skin love fest….oh how it filled my heart. I can’t wait until Cedar is strong enough to do this regularly and Heather gets to hold her for the first time…soon enough. In the meantime, counting our blessings. over and over again.