Blessings

1 week later

It has been a week since my last post.

They had finally taken out the breathing tube and off the ventilator last Saturday.  She still has congestion due to the RSV and has nebulizer treatments every 4 hours.  She is awake and they had taken out her central line today.  That means she is not hooked up to any IV’s, drips, anything.  Any medication she has is taken by mouth.  The only thing she has is the pulse ox and the leeds for her heart rate.  She doesn’t even have the oxygen line on her face.  She happened to kick her arterial line last Friday and there was a blood.  Good thing the nurse saw it quickly, they decided not to put it back in and just leave it out.  Poor Daryl he was the one with Caitlynn, I could only imagine how freaked he was.

She is really irritated with the pulse ox on her foot and tries to rub her feet constantly.  There are marks on her feet from rubbing too much that they look like they’re about to bleed.  Putting it on the hand doesn’t work at all because she is always trying to play with it.  PT came in and they said she looked fine and to keep socks or my hand inbetween her feet.

She had a speech consult today and they decided to try to thicken her formula.  I had relayed my feeding issues with her even from before coming to the hospital.  She’s scheduled to have an xray done tomorrow of her swallowing.  Hopefully we can get to the bottom of this.  She is no longer taking breast milk but just having formula thickened with rice cereal.  i’m not too thrilled about no more breast milk, but I did the best i can for the past 6 months.  if this is what she needs to do then so be it.  They can’t thicken the breastmilk because the milk seperates and wouldn’t be as nutrient as the formula?  I’m not too sure I’m going to have to clarify this.

We are still in the ICU and under isolation.  Thursday will be 2 weeks since she tested positive for RSV.  They were thinking of putting us on the regular floor, but if she’s under isolation I’m not sure how that would work because the rooms are shared by 2 patients.

I got to spend some time with Christianne and Cayden last weekend.  Christianne is rolling over and over and over again.  She truly is a joy, easy going and such a wonderful happy baby.  Cayden misses his sister and is constantly asking to come see Caitlynn.  I brought him to the hospital on Monday.  He wasn’t able to see her because of the isolation, but he did get to spend time with us and see where his Mom and Dad have been.  He had fun at the Brown Family Life center and he picked out some beanie babies to come hom.  A green bear for himself, a Purple bear for Christianne and a praying bear for Caitlynn.  What a sweet boy!

Hopefully the next time I write we will be home! 

First day

The first day after surgery has been up and down. Caitlynn had woken up from sedation but was not a very happy camper.

She spiked a fever at 6 am this morning at 102. She was tested for RSV and the test was positive. She is under isolation. Anyone who comes into her room whether to visit or give her care has to wear a yellow gown and a face mask. Worried that Cayden may have it as well, he has an appointment to see his pediatrician tomorrow. Caitlynn was tested for RSV exactly a week ago at the pediatrician’s and it was negative.

She will be on the ventilator another night. She is not doing any breathing on her own. She has been in a twilight state and would move too much by kicking and flailing her arms suddenly. Her saturations became low and she wasn’t letting the ventilator expand her lungs fully and would contract them instead. They had decided sedate her and give her a muscle relaxant so she could let the machine do it’s job at least for right now.

With the RSV she gets suctioned and not that many fluid/ mucus comes out unless they open suction her. They had also started an Albuterol treatment as well.

An audiologist came by and did a newborn hearing test because she has failed numerous ones. She had failed again and was found to have fluid in her ears. Not sure what happens next. The ENT said she’ll consult with Dr. Nancy Young and let me know. Christianne is going to see an audiologist tomorrow outpatient. Hopefully she passes.

We were able to get a room at the Ronald McDonald house. What a beautiful place, it was a house meaning it was someone’s home in the 1800s and then a convent for the church down the street. I think I’ll post details another time about the house.

Mindy was able to stop by for a couple hours and grateful she was at the hospital when Corey and I wasn’t. Pastor Larry Leonard also visited us and said a faithful prayer. Daryl had stopped by as well while we checked into the house. He got us dinner from Del Seoul, thanks again. We prayed before Daryl and Corey left. I had to tell others to hold off on their visit until tomorrow or the weekend.

This afternoon was a doozy. So many people coming in and out especially when she wasn’t
breathing how she was supposed to be. It was all so overwhelming and had so many emotions
go through me in the matter of minutes. This is in God’s hands and need to remember that I can do all things through Christ who strengthens me. Philippians 4:13

We are 3 hours into Caitlynn’s Ventricular Septal Defect (VSD) surgery. She will be 6 months old tomorrow along with her twin sister Christianne. They told us this procedure will be 4-6 hours long. Her surgery is at Children’s Memorial Hospital, with Dr. Carl Backer and his team.

A nurse has come every hour to give us an update on surgery.

3 p.m. 1st hour…they had put her to sleep and made an incision.

4 p.m. 2nd hour…after seeing the hole they decided to use her own tissue instead of a gortex patch. Which I didn’t know was an option when they explained the procedure to us before.

5:15 p.m. 3rd hour…they have taken her off the heart and lung machine and closing her up. The surgeon should be coming out to talk to us in half an hour. It will probably be another hour and a half before we can see Caitlynn.