One tough little girl

It has been a crazy week running from home to the hospital and back. We have tried to enjoy Thanksgiving with all the family in town, but it has been difficult without the newest member of our family there with us. We miss Rubalicious.

This last week they took off the air tube that helped push air up her nostrils, as well as the picline in her arm that was delivering antibiotics. Since she was off the UV light to help with her jaundice, we could hold her for hours without having to put her back in her bed. Actually, she was out of the heated bed and in a little crib! The only thing that we were waiting on was the feeding tube in her nose. Her breaths per minute were still high at the beginning of the week and the doctors feared she could suck some milk into her lungs if she tried to nurse too soon. So they pulled her off the bottle for the week. Ruby's breathing had come down steadily day by day and the nurses had been introducing small amounts of milk into her pacifier late in the week. Today was the green light and she nursed without any problems.

We cannot believe how strong this baby really is. There have been literally more than 20 milestones where she could have gone either way, and she has beat every one. It has been a string of miracles that have got us here today.

Finally held her

When we arrived Sunday the medical staff had removed all of the lines going into her bellybutton. (they had tapped into one artery and one vein) They asked us if we wanted to hold Ruby and we jumped at the chance. We finally were able to hold her after 6 long days. Whitney was beyond excited to hold our little girl for the first time and was very emotional. She was able to hold her for an hour and a half. She said it was amazing. Later that day we came back to the hospital. I held her for a few minutes and she passed right out. I was able to try offering her a bottle of breast milk but she was not interested. The nurses were pretty sure her throat might still be irritated from the tubes. We would try again the next day.

Today an OT specialist helped us with feeding and she seemed a little better. They plan on helping us out throughout the week and they think that she should be feeding normally in the next couple of days. We also did some skin to skin therapy to get Ruby familiar with mommy. This has really been the first setback. We have to remind ourselves how far she has come in just one week. Whitney just really enjoyed being able to hold her again for 2 WHOLE HOURS! It is hard seeing her and not being able to take her home but we are so grateful for how she is doing. We hope to have her with us soon.

Goodbye ventilator!

It had been pretty hard on us (Josh again) leaving the hospital yesterday without Ruby. We got the kids situated this morning and returned just in time to witness another great milestone. They had just removed her breathing tube. The ventilator setting had been turned down to 18 breaths per minute, and she had been breathing 45-50 per minute on her own. Her chest looked like it was heaving, but she was getting all the air that she needed and the oxygen level in her blood was excellent. This means that other than the small tube in her nose that she was being fed through, she is now breathing and recovering on her own. She will need to continue resting from her surgery, but every day we see more and more life in her. Tomorrow they begin introducing breast milk, and then on to normal feeding from there. They told us today that she might be home for Christmas, so we are hoping she beats that time line as well. Every day we have something more to be grateful for.

News from the Doctor!

Whitney and I (Josh writing) got a call this morning and it was the Neonatologist that had been taking care of Ruby overnight. Whit passed the phone to me and he began telling me about Ruby's progress. The nose tube for deflating her stomach and intestines was removed today and they were feeding her water (pedialyte). They have been scaling back the meds since early this morning and plan to have her off all meds in the next day or so. As for the breathing tube, the doctor told us that he will most likely remove it tomorrow so that she can breathe on her own. If her stomach and intestines work well with the pedialyte they will be introducing breast milk later tomorrow.

We cannot be more thrilled with the news of her speedy recovery and pray that it continues. I went up there a while ago and the nurse told me that I could wipe her chapped lips if I wanted to. The nurse took the cover off her eyes (protection from the UV light) and as I started talking her eyes opened right up. I got to sit in the room and watch her eyes move, her arms flail, and her feet kick. It was more life than I had seen in her all week. I had such a hard time walking out of the room and leaving the nurses while they did their tests and cleaned her tube. We believe in miracles.

Getting Stronger Daily

Thursday was a blur and we forgot to write anything down on this blog. (This is Josh writing) Ruby was continuing to breathe better and better and so they started to scale back the O2 setting and pressure on the ventilator. By noon she was breathing 20% oxygen, which is the same oxygen levels that you and I breathe at normal room levels. They had began scaling back some of her pain meds, but it was slow and they were monitoring her closely. All in all, they just wanted her to rest after her surgery from Wednesday. I took my daughter, Jane up in the late afternoon to see her and the nurse opened one of the x-rays that they had just done, comparing them with the ones from earlier. The left lung looked larger in the newer x-ray than the one from this morning. This did not really register with me until I made the trip back up with my son, Joey. It meant that there was more lung tissue than they had originally thought. In just 12 hours, her left lung had expanded as it was allowed to work and it was STRONG. The second time up I bumped into the surgeon, Dr. Chan, and he was overjoyed at her progress. He commented about her O2 levels and the reduction in her meds, saying that it was a great sign and she was doing amazingly well.

We know that Ruby is a fighter and that she came into this world kicking. For that reason Whitney and I chose Karyn as Ruby's middle name to honor Whitney's mother and to show the world how strong this little girl is. If you know Karyn you understand what I am talking about. It was a fitting name for little Rubalicious.

Ruby Karyn Holley

Miracles Do Happen!

Baby Ruby's surgery was a complete success!

There were a lot of concerns going into the surgery. They made a 1 inch incision below Ruby's ribcage. Through the hole in the diaphragm they pulled the stomach, spleen, and intestines back. Doctors were worried with the intestines because they grow in a circular pattern and if there is malrotation she could have feeding and digestion problems in the future. Luckily there were no problems with the intestines at all. Josh asked about the lung (her left lung was the one that was squished) and regardless of the size, the lung is doing phenomenal. They patched the hole in the diaphragm and they use some tissue from the esophagis along with a medical type of gortex that the muscle will eventually grow around. Finally, they patched her up!

Ruby is now recovering in the NICU. She is breathing great on her own and they have already turned the ventilator down twice. Also, doctors are finally using words like "phenomenal," "amazing," and "magnificent" when describing how Ruby is doing.

Next steps for Ruby are to slowly ween her off oxygen (or the ventilator) and begin to feed her. Right now she has IVs going into her belly button.

After the surgery everyone was so releaved! We had Tyler (whit's brother) go to 5 Guys Burgers And Fries and pick everyone up a Double Double burger. It was amazing how fast we scarfed those down. :) We were hungery!

Good job Rubes! Way to kick that diaphragmatic hernia's bootie!!!!!!

Morning Phone Call

Goodmorning everyone! I received a call this morning from Whitney pretty early.  At first I was freaking out because I was wondering why she was calling so early. But I guess she had no clue what time it was. :) She was calling to tell me that the Neonatologist (??? is that what he's called??) called them and said that Ruby was doing "fantastic!" Obviously we're not out of the woods yet, but for a baby with this type of defect, she is doing as well as possible.  Woot woot!!

Also, I received a text this morning from Josh with the below picture.  Last night after the family left the hospital, Whitney and Josh couldn't sleep, so they decided to go visit Ruby.  It's been an emotional journey for Whitney, not being able to hold her own child.  But last night Whitney got to hold Ruby's hand for 15 minutes and change her diaper.  :)  After the doctor called them this morning, Josh said that the reason Ruby was doing "fantastic" and had a good night was because she was able to hold Mommy's hand. :) :)

Surgery is still on for 11am.

Let's go Rubalicious!!!

Photos of Ruby

We were lucky enough to have our cousin take pictures of Ruby. You can see those at her blog here:
http://www.j-richardsonphotography.blogspot.com

Thanks Jenny!

Tomorrow's Schedule

Ruby has been stable throughout the day. She continues to do well with her breathing tests and the ventilator has stayed on low. Therefore she will have surgery tomorrow at 11am. The surgery will consist of the following:
-Doctors will make a 1 inch incision below Ruby's ribcage.
-They will then proceed to move the stomach and intestines back to the correct position.
-Finally, they will close the hole in the diaphragm.
From what the doctors have told us, the surgery is pretty "elementary." The main concern for them is how well she is able to breathe on her own (or her lung capacity) afterward.

Thanks again to all our friends in family that have given us so much love and support!

Feel the love Rubababy!!!!!

ps. Happy Anniversary Josh and Whitney!!

More of the same...

Just checked in with Josh and Whit and things are still going well.  I have Jane duty today so I haven't been to the hospital yet.  Not much has changed which is good.  They did another oxygen test today, and Ruby's lungs are still doing well.  Wednesday is still the day for the surgery as of right now. Since there isn't much to post about here is a picture from yesterday right after Josh told us the news that Ruby came out screaming. 

Josh and Joey

Keep things boring Rubes!!

Cautiously Optimistic

What a day! Sorry this has taken so long. I was posting updates from my phone, and of course my battery died before we had a good idea of what all was going on.  So here is everything that is going on to the best of my knowledge. 

• Ruby is in the NICU stabilized with a ventilator.  The ventilator is on at a low level because she is able to breathe pretty well on her own, which is great.  
• Tests have been run to test the strength of her lungs including one that measures how much CO2 she is breathing out.  The level of CO2 she is breathing out indicates that she has adequate lung tissue, which is also great.
• If she continues to do well, surgery is scheduled for this Wednesday.  Doctors want Ruby to be stabilized a couple days before surgery.
• I was able to go see her with Josh (only one person at a time with Josh is allowed to see her) and she looks beautiful.  She has great coloring and if you took away all the tubes and IVs, she would look like a normal healthy baby, in my opinion. She's not skinny or small, being 7lbs 3oz, and 20in long.
• Although she is doing well, we have been informed that babies in this condition still have their ups and downs.  So tomorrow could be a different story. BUT, today was as positive as it could be with how critical she is. 
• Whitney is feeling really good. She didn't seem to be in too much pain and didn't ever feel nauseous. 

 Whitney still had not seen Ruby when I left the hospital at 8:30pm because she wasn't allowed to until she was able to get into a wheel chair.  Luckily all day Whit was able to hang out with all three of her baby nieces which she said was almost as good. :) We spent most of the day showing her all the pictures we took and described to her all of Ruby's gorgeous features. Ruby definitely has a lot of Lynn features.  She looks more like Joey than Jane but with Whitney's eyes.

Whitney and Josh want to thank everyone for all the kind comments/posts/texts/etc on Facebook or this blog.  Our family has felt so much love and support from everyone. Please continue to keep Ruby and the Holley family in your prayers. Ruby still has battle ahead of her.

Keep fighting Rubes!!

7 lbs 3 oz

Came Out Screamin'!

Baby Ruby has arrived and came out screaming! We received a short update from Josh and he told us she is a fighter. Because she is so strong, it took 4-5 nurses to restrain her in order to put in a couple different tubes. These are all great signs. Ruby seems to have strong lungs so far. Will post picture soon along with any further updates.
As Joey says, "The baby came out!"

Go Rubes!!!!!

C-Section

Whitney's C-Section is scheduled for Monday, Nov. 15, at 12:00 noon.  She will be delivering at Sacred Heart.

What is Diaphragmatic Hernia?

About a month ago, the Holley family received some scary news concerning their unborn baby, Ruby.  Ruby was diagnosed with what is called Diaphragmatic Hernia.  In a nut shell, Diaphragmatic Hernia is a birth defect in which there is an abnormal opening in the diaphragm.  Our diaphragm is the muscle that helps us breath.  Also, the diaphragm separates our heart and lungs from our other internal organs, like the liver, stomach, and intestines.  Without our diaphragm, our other internal organs would smoosh into our heart and lungs.  Ruby's diaphragm has a hole in it (or abnormal opening), which has allowed for her stomach and some of her intestines to travel up through it into her lungs.  Though this is very scary, there is a surgery that can be done to correct this defect.  So surgery is inevitable for Ruby.  But the main concern for Ruby is how strong her lungs are when she is born.  Usually, the outlook is very good for infants who have enough lung tissue.  That is why you might have heard to "pray for strong lungs!"

Taking all things into consideration, Josh and Whitney have been pretty optimistic.  Josh gave Whitney an amazing blessing and ever since Whitney has felt a lot of peace and comfort.  Both are still very scared and nervous (how can you not be), but the overall feeling is that everything is going to turn out okay.  

I, Courtney Shelby (Whitney's sister) has been asked to keep friends and family informed and updated with this blog.  I will try hard to update it often.  Thank you everyone so much for all your prayers and fasting. It has meant the world to Whitney and Josh and the rest of our family.

Lungs for Rubalicious!!!!!!!