I don't eat food with eyeballs...

Sunday, March 27, 2011
Cayleigh Jean is 38 Days Old

One of the 'perks' of living at the Ronald McDonald house is that some businesses extend 'treats' to the residents here. One such business is the Exploratorium in San Francisco. The place has a very old look to the outside, with a huge, gold dome top and Romanesque carvings in the, large pillars and the like - it's really a beautiful building. Inside is quite fun with TONS of stuff to do for kids of all ages. So we took the kids there yesterday and they had a really nice time.

Today we took the kids back to Mountain House after going to church this morning in Livermore. Jacob had a birthday party to attend at 1 pm so we no sooner got to my moms than we turned around and had to get him ready to leave. Tayla was excited to be home and back in her comfortable environment...but did give me kisses and hugs before we had to leave again.

When we left, we headed straight back to the hospital. Unfortunately, there is no shuttle transportation on the weekends. Paying the parking prices at the hospital is not something I miss very fondly. It's just unfortunate that they don't provide free parking to those who are family of patients staying there. As a matter of fact, even employees have to pay for parking from what we were told. I think the parking garage alone (as, almost frighteningly jam packed as it is) pays the hospital's bills. :)

We get upstairs and take Juliette with us to see Cayleigh. I walk in a little behind Nic and notice a tall, bald man wearing blue scrubs standing over Cayleigh. I get a panic feeling when I walk up and see him looking at her. I didn't know what was going on as 2 nurses and him stood there looking at her face. Come to find out, the small patch of pimples on her left cheek that I noticed yesterday (and pointed out) and little bumps Nic had seen the previous day (and pointed out) got progressively worse and was all over her face, chin and forehead. He assured us that this was just baby acne. The nurse had called him to look at it because of how rapidly it spread. Given its locality and coloring, however, the Dr (resident) assures us that it's just baby acne. At worst, he thought it might be a yeast thing but it would have been much redder - and that would have been easily treatable. *PRAISES*

Cayleigh was out of her harness. The nurse today tells us that its now 4 hours on, 4 hours off. Before, she says, it was 3 on and 3 off. We tell her that we were told it was 23 on and 1 hours off. She says no, 4 on 4 off. We say ok. It seems like stuff changes with each shift.

She did really well while were were there. She was sleepy and we prayed over her. The nurse showed us her G-Tube site which was MUCH less red than it was before. She was really easily moved (limbs) and we were, overall, happy with how she was doing. One thing different is that they were no longer 'venting' her during her feeds. So now, they have her tub thing closed (and not attached to a hanging syringe) during her feeds (which are up to 6 ml now). They are going to watch and see how she does. Ideally, she will have it vented an hour after she eats. She did seem gassy. She was farting and even burped from her mouth. I don't know what the think about all of this because I don't know the first thing about G-tubes. The nurses think I'm a little 'overly worried' about her - I call it being her MOM. If I have a question, I ask. If I have a concern, I voice it. She's my daughter. That's MY job. (her Daddy's too. But apparently he isn't the 'worrier' - I am) I think it's just me being cautious, curious and needing to ask the same question to different people over and over because they give me a different answer depending on who I ask.

So anyhow, we ended up leaving just as Jessica (my sister) and Gary (brother in law) were getting ready to head up to the hospital. Nic and I headed home with Juliette and settled in to the room for a little while to decompress from the day. Jessica had asked if we wanted to go with them to a Broil Crawfish place in San Fran that our husbands had gone to before with my dad & brother. We said sure - it would be nice to get out of the house.

Jessi and Gary picked us up and we headed to dinner. It was raining - as is a seeming constant in San Fran - when we arrived. It was a blessing that we even found parking remotely near the place. We walk in and the place is small, but seems large. If that makes sense. We all order. The guys get crawfish, Jessi and I split crab legs. We were going to order shrimp - but after seeing the table behind us who had shrimp that were fully in tact - eyeballs, legs and all - we decided on the crab legs! I don't eat food with eyeballs, neither does she.

Dinner was terrific. Being 'away' from it all was terrific. All in all it was a very nice night. Though, Jessi did tell me that while she was there Cayleigh had a desat which require suctioning. That's always a bummer for me. She did, however, tell me that the nurse mentioned that if Cayleigh weren't swallowing at all she would have alot more secretions that she does. that made me really think about it - and smile inside.

In all of this God has been very, very good to us. We've been blessed with a beautiful little girl who is here with us and is a real fighter! She's strong. She has come a LONG way since when she was born and she continues to prove everyone wrong.

We do ask that the Lord would continue to heal her. That her G-Tube site would be free of redness, puss and any infection. That her secretions would no longer cause Desats of any kind. That she would 'awaken' and begin to swallow stronger and handle her own secretions without assistance. That she would have increased flexibility, movement and alertness. We pray for wisdom for the doctors and nurses in caring for her, that they would have compassion and wisdom. We pray that the Lord would put a hedge of protection around her and protect her from the enemy, from sickness or disease.

Please pray for our children. That they would know they are loved, have comfort no matter where the are (San Fran or Mountain House or here). That the Lord would watch over them, protect them and keep them safe from the enemy. That they would be kind and loving..and obedient. :)

Please pray for Nic and I. For strength in our marriage, in our faith and for each day to bring new affections and love for one another. Thank you all for every prayer you pray. I'm including some pictures of her today. One is of her, getting better, g-tube site, the other is of her double chin (I love it) :)