Ruby came home

I had been sending pics to FB over the last 24 hours and kept forgetting about this entry that needed to be written. Whitney had been staying at the hospital around the clock to feed Ruby since Monday and we were just waiting to see how she did. The doctor on Wednesday told me that if she fed well all day Wednesday they would release her Thursday. I guess these kids need a good 48 hours of feeding to leave the NICU. She fed well through Wednesday and Thursday morning Whitney called me after the doctor discharged them. Jane and I drove to the hospital and I was completely overwhelmed walking up to the NICU. It's still a bit hard to feel good to carry your child out of that room, yet to realize that there are children in that ward who have parents still hoping for that same moment. I guess all you can do is be grateful that your child beat the odds. At one point during Ruby's stay one of the nurses told us about how this little girl was such a miracle. The nurse then proceeded to tell her about how she had seen Ruby's condition in 8 other children during her time at Seattle Children's Hospital. Not one had survived.

We kept thinking about how these last few weeks have seemed like an eternity. It feels like a year has passed and gone. Most times I never thought we would get to take hew home, yet every day we gained more and more hope. I cannot fully describe how grateful we are for our friends and family. Without the thoughts and prayers that have been said in Ruby's behalf, it is unlikely that we would be here today. Children with Diaphragmatic Hernias often do not have happy endings. Whitney and I are grateful for being able to tell people that Ruby is one.

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!!!!!!