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

New Hat

Thanks for the stylish new hat Grandma Trask!

Riley also enjoyed a visit from Grandma Coombs, Auntie Mary and Cathy this afternoon! Thanks for helping with the move Cathy!

02/22 Update

After a good nights rest, we travelled over to Children's to see our little Riley.  She had a good night and her sats stayed pretty consistent and good.  Her bili levels came back normal so we are not dealing with jaundice lik we did with Chase.

Everyone here seems to be in love with her.   A respiratory lead, Nancy, even stopped by when she didnt need to (she is not assigned to Riley) just to check in and let us know how beautiful she thinks Riley is. 

Brian and I got a chance to change Rileys diaper last night which might seem small, but it was the first time we were really able to interact with her.  It was a little more awkward than with Chase because of all the tubing and wires, but we will get the hang of it soon!

I love sitting here watching her (like I did with Chase).  She is on sedatives to keep her calm so I havent seen her awake yet, but hopefully after surgery I will once she is stabilized.  Riley has an Echo scan today to make sure her heart is still working well.  She is also looking forward to seeing Grandma Coombs and Aunt Mary and Cathy today.

Riley the Investigator

Riley just spent a half hour awake and exploring the buzzing and beeping world around her. She woke up when the respiratory doctor suctioned her airway and decide to stay awake for a while. I wonder if she can make out my beard from a foot away? Her beautiful blue eyes were certainly taking everything in.

Riley's doing very well. Her heartrateand oxygenation levels have been good. Her blood pressure has been a little low, so the doctors have been managing it with extra fluids and a little bit of dopamine, as needed. Overall, she's doing well and initiating a large majority of her own breaths. Let's hope she keeps up the good work!

Sent from my Verizon Wireless phone

Our New Addition

We are so excited to say that Riley made her big debut into the world
at 9 on the dot this morning!  Brian and I have both had the chance to
see her and touch her before she headed over to Childrens.

Please keep us in your prayers and hope that she continues to be
feisty (as the doctors called her this morning)!

Pictures will come soon!

Sandy

Ps. Happy birthday to Allie and happy anniversary to Becky and Justin.
 Riley couldn't pass up being a part of the 20th too! :o)

All Systems Are Go

Sandy started contracting around 6, so we came in to have her evaluated. The contractions have gotten stronger and more regular, so it looks like Riley will be joining us soon!

2/17 Update

Well I had my Dr.s appointment yesterday and not much has changed.  Riley is doing wonderfully and she scored an 8/8 on her vitals (no this does not change the outcome of the CDH, it just means that her other organs are functioning properly)!

We have our induction date set for the 28th at 6am.  Neither the Dr. or I are sure I am going to make it that far, but it is a goal.

Things at the Yawkey are still good.  People are just so caring here.  I miss my guys but will get to see them this weekend again.  I am also looking forward to the possibilities of visitors next week if I am still here. :o)

Hope all is well with everyone!
Sandy

The Cow!

Sometimes it's easy to forget just how amazing people can be, especially kids.

Happy Valentines Day

Happy Valentines Day to everyone reading this! I can't believe it's been almost 2 weeks since I have been home. I had a great time with Brian and Chase this weekend. Chase really enjoyed playing in the playroom and climbing the big staircase with daddy. He even learned to come down the stairs by walking instead of crawling.

Everyone around here quickly learned at Chase's favorite animal is a cow and a couple of the girls even made him a valentines day card with a cow on it. They hung it on our room door and when we came out Chase saw it and let out a big mooooooooo.

Last night, there was a trivia game that one of the volunteers (Tom) hosts the second Sunday of each month. There were plenty of prizes to go around! After that, we all ate BBQ wings and mac and cheese cooked by one of the workers mothers. It was great!

People here have been so good to me. Everyone knew that Brian and Chase went home yesterday so they were so great to me by getting me dinner and taking care of my dishes. There was even a new couple here last night who offered their phone number in case I went into labor last night and needed a ride to the hospital.

Hope everyone enjoys their day!
Sandy

All is Well

2/10 Update

All is still quiet here.  Great news: I get to see Chase and Brian tomorrow!  I am super psyched.  They will be able to stay here with me for the weekend before heading back for another week at home (or at least till i deliver).

More good news: tonight is pizza night at the Yawkey Inn.  A local place donates pizza for all the families here.  Yum Yum Yum! :o)

Out of the hospital but still in Beantown

Well, it has been a week since the contractions started, and with no contractions to be seen at this point, I cannot stay at the hospital anymore (go insurance). I have been moved to the Yawkey Family Inn which is an affordable inn through boston children's hospital for patients and their families.

Things are good here and I have already been able to meet several people. We are hoping that Chase will come in with Brian this weekend as long as I am still here. It will be good to see him after more than a week. It is truly amazing how much you can miss someone (and that goes for both of my Coombs men).

Sandy

2/08 Update

All is still quiet on the baby front. Brian drove back in last night in anticipation of staying ahead of the snow we got. He just headed out to go back to the little man.

We signed up for 2 CDH studies which will hopefully help out other families in the future. One deals with genetics and the other deals with social/emotional impact.

We are hoping that Riley bakes for a bit longer (the larger she grows, the better).

Sandy

2/6 Update

No contractions so far today. The nurses come in to check the baby's heart rate about every 4 hours and inevitably, the comment is either "great heart rate!" or "wow she's a kicker!" Sandy is resting comfortably and doing well overall.

We talked over the last couple of days and decided that if there are still no contractions today, I will head back home later this evening. This will give me the opportunity to spend some time with Chase. He'll still go to daycare and I'll head back to work tomorrow. I'll be waiting for the call from Sandy to jet back to Boston, should any contractions start at any point in time.

I want to take the opportunity to thank everyone that has been helping us out, whether taking care of Chase, running odd 'n ends out to Boston or just sending us a kind word. We truly appreciate your support.

Brian

Saturday 2/5 Morning

No new news as of this point. I received mY last dose of nephedipine this morning to stop the contractions. We had asked to extend the time taking it to hold out till Monday for delivery when Dr. wilson is back from a conference but the drug has been shown to have no real effect after 48 hours (which is how long I have been taking it). At this point we are just waiting to see when I will start contractions back up.

Update

Well, the contractions have stopped and Brian and I were able to get about 7 hours of sleep (after running on 2 hours within the previous 42 hours). They moved us up to a labor prep room where we will be until I start going into labor again. The nice thing about that is that the beds are MUCH more comfortable.

I got a second dose of steroids this morning to help Rileys lungs grow and they will take me off the meds that are stopping the contractions in 24 hours. Thank you all for the prayers and well wishes. They are very much appreciated.

Sandy

P.S. We love you Chase!!!

Keeping our hope up

Hi all,

I am writing this from my bed at brighams so please excuse the typos. We went to baystates eval unit last night around 9 after I started having contractions. I was transferred out to Boston around 2 this morning and came here at about 4 cm dilated. I was given a steroid shot to help mature Rileys lungs and they are currently working to stop the contractions for 48 hours. All seems to be on track for that at this point.

Please keep us all in your prayers (even Chase who won't see mommy and daddy for a while). We will update when we know more.

Sandy

Setbacks and Progress

Well, with yet another winter storm upon us, we had to push back our latest trip to Brigham and Women's in Boston. So now we will be heading out next Wednesday. Guess what? Snow is anticipated for next Tuesday! We are keeping our fingers and toes crossed that the snow stays away from Wednesday. If not, we'll just have to overnight in Boston like last time. Thank goodness for having family and friends that are able to take care of Chase!

We do have some good news! Sandy is tentatively scheduled to be induced on Monday, February 28th. We've been told we're first on the schedule at 6AM. So if Riley behaves herself, we have 26 more days until the BIG DAY.

I hope everyone is enjoying being inside with loved ones during these snow storms. Stay warm and safe!!