A peaceful night...

We had a peaceful night in the PICU!  Ryder's blood pressures, oxygen sats and labwork are stable since yesterday afternoon.  His kidneys appear to be working well now with good urine output.  We are awaiting results of todays head ultrasound but otherwise plans to keep the ECMO on until Saturday morning and then will try to wean and see how his heart pumps and lungs ventilate without the help. 

To our little warrier, sleeping so peacefully-

We love you!!  Be strong and courageous...know that when we are not holding your tiny hands you are being held by God and he will never ever leave you...

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time & prayers

Ryder had a rocky night...he was initially stable but his doctors had trouble ventilating him (getting the carbon dioxide off)...labs looked better then not so good.  He started ECMO around 7 am.  Basically it does the work of the heart & lungs for you - will give his body some time to rest.  This will be on likely a few days before they try him off again while he is fast asleep in the meantime...  Please pray that he stays strong and that his lungs will recover with a few days of rest.  We miss his squirming & kicking already...

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Waiting...

Know a lot of you have been waiting.Ryder had a rough day.  After ups, downs, & some more downs in surgery he is now stable in the ICU for the moment.  The five hr surgery turned to a 9 &1/2 hrs surgery requiring some extra time on bypass.  He is now settled in the ICU with plans for at least a few days on the ventilator before any other big changes.  We are so thankful for a GREAT surgeon and all of your love & support.  Ryder is our little warrier -please keep praying he receives the strength to keep on fighting!

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Ryder's big day...

Tomorrow is Ryder's Norwood surgery, one of three open heart surgeries he will need to redirect blood flow; the 2nd is usually done at age 4-6 months and the final one at a few years.  In tomorrow's surgery he will go on heart-lung bypass while the surgeon creates a new aorta using a patch and his pulmonary artery (that normally goes to the lung).  Then the atrial septum is removed completely and the Blalock Taussig shut is placed (a piece of tubing allowing blood flow to the lungs).  The stent may be removed but it just depends on how well it is embedded; they might have to leave it for now.

Ryder will get taken to the operating room tomorrow at 7 am and the surgery is scheduled to last about 5 hours.  Thankfully [thus far] we had another quiet day!  Ryder got a blood transfusion and some pre-op labs; we are headed back to the hospital soon so we can spend some time with him, give him some loving and hopefully hold him for a little while...he will be on the ventilator and sedated for the next few days-week so this is our best chance to get cuddles in for a bit...

Obviously this surgery carries a lot of risk, but Ryder's course so far has been nothing short of amazing.  He has surprised all of his doctors and nurses with how well he has done and how peaceful his first week of life has been.  We are praying and hoping that he will keep doing this well.  He has a great surgeon and care team and I am very confident they will do everything they can to keep supporting him.  Ryder's life is such a precious gift and in his short time as a part of our family he has taught us so much - I hope you will pray with us that he makes it through this surgery with flying colors and that he will keep making progress and get to come home with us in a few weeks.  Thank you so much for all of the well-wishes and prayers so far!!! 

Love you so much sweet baby boy!!

Now faith is being sure of what we hope for and certain of what we do not see.  Hebrews 11:1

A surgery date...

Ryder had a big day yesterday with a lot of new visitors!  Despite all the activity he had a relatively quiet evening and quiet day today so far.  This morning daddy got to hold Ryder for the first time...I brought Addy in while he was still in daddy's lap and Addy about fainted - I've never seen her run or talk so fast...I think she may have said:  "you hold baby Ryder...I hold baby Ryder? I kiss his feet? I give him hug!  Look at this horse!  Daddy - you hold him! I touch his hand?  I will give him hugs!".  Phew!

Ryder's first open heart surgery has been scheduled for Tuesday - we haven't got a time yet.  We should be meeting with his surgeon tomorrow to review details.

In addition to routine vitals, we have been watching blood gas #s closely - for the first time late this afternoon Ryder is slightly acidotic; this was expected at some point and pretty amazing he made it 5 days on room air but we are expecting some changes when we get back tonight - not sure what they will do yet...

Despite the numerous attempts to swaddle his little hands he always manages to get out - the right hand goes for the scalp IV and the left for the NG tube.  He wants to make sure we know that he is the boss :)

We will all be very sad to see nanny Cody leave tomorrow...Addy in particular!!

March 3rd

Mr. Ryder is doing well this morning.  Here are the updates:

Yesterday we had a good day, Ryder was moved to another POD as he was needing a little less nursing attention (a good thing!); he is cozy in his new spot and was keeping a good temperature so he only got to wear his leg warmers for a bit before spending the rest of the day chilling in his diaper!  His umbilical vein line was taken out and switched for a PICC line put in in radiology - it is a special IV line that is fairly secure - can be used for blood draws and for his medicines and fluids.  This IV is in his leg so last night I got to hold him again for almost an hour and a half! 

His oxygen levels are still on the high side, these are being watched very carefully.  His other labwork looks good though.  He had another ECHO yesterday too and the blood is still moving across the atrial septal hole so we are hoping nothing will need to be done with that before his surgery.

I was discharged  home yesterday afternoon...bittersweet.  Anyone who's ever had their baby in the NICU knows this feeling but it is unbelievably sad no matter how baby is doing to leave the hospital without him/her.  He is being well cared for though and it is so nice to see more of my little princess!!  Addy is loving her little "bwother" and was very excited to give him more kisses on the feet yesterday :)  She will be busy this morning though at soccer with her uncle Cody.  Just don't tell him that "soccer" is not so much soccer as practicing listening and trips to the potty...

Ready for combat...or deer-hunting maybe??

Mommy snapped a quick shot without the forehead monitor on

Addy offering her baby bwother the chocolate milk she brought in a medicine bottle

Thank you for all of your prayers thus far! 

It is of course very hard for our toddler to comprehend what is going on with a new baby...Addy has seemed to be fine with us telling her that baby Ryder's heart is broken and he has to stay at the hospital until it gets fixed.  Yesterday she kissed him and said "baby Ryder's all better now, I fixed his owie!".    Seriously, break MY heart.  Please keep praying for a quiet weekend for Ryder heading into his big surgery next week and we will keep you updated on his progress.  We are so thankful for each of these precious moments we have had with him so far!! 

A good day in the NICU!

Mr. Ryder had another good day!  Oxygen sats, blood gasses, respiratory rate are all stable.  So far haven't had to plan for the heart cath or placing him "under the hood" due to too high o2 sats.  There was a couple of trials for a PICC line (special IV) today without success but on trial #2 he got to suck on a pacifier covered in sugar water.  A HUGE hit!  He will go to radiology tomorrow to get the IV placed instead.  He also had a repeat ECHO today without much change.  His surgery plan will be discussed at the cardiology conference tomorrow morning and hopefully we will get a date then.

He is looking forward to some more visitors this weekend and some more footsie kisses from his big sister!