Another Good Day

Riley had a busy day. Today, she had her ventilator rate and pressure lowered (almost to pre-surgery levels!), had her chest tube taken out, had her NG (nose) suction tube taken out and then had a smaller, softer NG feeding tube put back in down to her stomach. All of this without too much sedation and still kept her stats at or close to where they need to be. What a girl! As one of the nurses said early on, she's certainly tougher than her daddy.

Riley will have her epidural removed tomorrow, so the doctors will be working to find a good balance between pain management and respiratory stats. On a brighter note, now that the feeding tube is in place, Riley has started taking some of Mommy's milk! We are both excited that she can start getting the benefits of this and I'm sure that it is especially gratifying for Sandy.

The doctors have VERY cautiously said that if Riley continues to progress well, they may be able to take her off of the ventilator in about a week. We were obviously happy to hear this, but we are taking things one day at a time with no expectations. We know that once Riley is off of the ventilator, she may need to go back on it or be on oxygen support for some period of time. We know it will be many more weeks before she is able to come home to her loving family and friends.

Thank you all for your support and prayers! Our buttercup tried on another outfit today. The picture may not reflect it because of the outfit, but Riley's swelling has gone down quite a bit since the surgery.

If Dr. Wilson is Happy, We are Happy

Good Sunday Morning!

Riley had a good night last night.  After surgery on Thursday, her vent pressure levels were raised, and her sats we not coming back as good as we hoped they would be.  Dr. Wilson, the surgeon we had originally met for her case back in November came back on Friday and started her on a track to decrease pressure levels in the hopes of getting her numbers back to good.

We received the good news this morning that we are almost back to where we started before surgery.  They have decided to leave everything where it is and to give Riley a "break" today before starting anything new so that we have some baseline levels set.  When the rounds were over, Dr. Wilson said "I'm smiling, and I don't smile."  Those were the best words we have heard all week!

Riley was graced yesterday with a visit from Grandma and Grandpa Coombs.  They brought lots of new outfits and the nurses let us put on the one below for a few hours:

She is just as cute as a button, and all the nurses headed over to see the talk of the ICU yesterday.  On a side note, Riley has had a tremor in her left arm and we are not sure what is causing it.  She is having an EEG done wich started Friday night at around midnight.  They should be finishing today.  They gave her a stocking cap to cover all the wires on her head.

Also, we feel so lucky that we found a website dedicated to CDH babies while I was pregnant.  There is not much information out there about CDH, so this website was very important to us (www.cdhsupport.com).  They give all expecting parents of CDH babies a care package filled with items donated in memory or in honor of a CDH baby.  In the picture below, Riley is rocking her new slippers, and snuggling with a bear from the package.  There were many other things included such as a puzzle book to keep us busy, hand sanitizer, a onesie, a blanket and many other things.  My mom will be planning a "baby shower" at some point this summer to collect items to donate for these boxes.  More news on that will follow.

We hope you all have a great week going forward.  Thank you so much for the supportive messages and prayers.  We truly believe that it is helping our little girl stay strong and make it through this time.

Friday Update

The past few days seem to have flown by, I don't know where the time goes. Riley is continuing to do well. While her pulmonary pressures have decreased slightly since the surgery, today's echo confirmed that she stills has hypertension. This was not unexpected and we are happy that her heart is under a little less stress than it previously was. The doctors just did rounds, the consensus seems to be to get her back to the vent settings that she was on prior to surgery, i.e. lower pressures.

Riley had all of her tubes changed out, and had her bedding changed, so her crib is looking pretty spiffy. She is swollen as a result of the surgery and the fluids that the doctors use to keep her blood pressure in check, but she should pee the extra fluid out over the coming days. Updated picture of our buttercup is below.

Surgery Complete

Riley was out of surgery and back to her room by 12:30 today. She had a good amount of organs up and had a large patch put on her diaphragm. She has been under sedatives and pain killers since then and has not moved or taken a breath on her own because of it. She looks wonderful considering everything.

They will start weaning her off the medication tonight and we will see where she goes from there. The next 48 hours are crucial and we are hoping she stays off ECMO. The survival rate is still at around 80-90% so please continue to keep Riley in your prayers.

All Systems are Go

Riley had a good night and was brought to surgery this morning. Thank you for all the thoughts and well wishes. They are very much appreciated.

(picture is Riley heading for surgery)

Surgery

Surgery has been scheduled for 7:30 tomorrow morning. Riley had another ECHO done today to make sure her heart was up to snuff for the surgery. Her numbers are still looking good and the doctors feel comfortable with fixing her up.

That being said, if anything changes where they think she might not be stable enough for surgery, they will cancel. They have actually had patients that get to the OR and turn around only to get the surgery a week later. Once the surgery is over, Riley's organs will all be in a new place and her body will have to begin learning how to function again.

We have been informed as to the different possible outcomes of the surgery and would like everyone to keep Riley in their prayers for the next few days. She is going to have to go through a bit during the first 48 hours as far as stabilization goes.

We are also asking that we have no visitors or calls about her status until further notice. We will do our best to keep this site updated as well as our parents updated (we ask that you also let them have some time to digest any information as well).

Riley's Stats

At the request of Pam ;o) here is Rileys Info:

Riley Mae Coombs
02/20/2011 @ 9:00am
7lb 4oz
18"

Cute as a button! <--professional mom opinion

Sent from my iPhone