Wednesday, June 10, 2009

Jam Packed Days

The past few days have absolutely flown by. I posted Elle's raspberries on Saturday with the intent of following that up with a doctor update. Now it's been 4 days and I am just now getting to the update! Friday, June 5, 2009, Elle had her doctor appointment for her 2 month exam and vaccinations. Elle did great during the check up! I made a request for the doctor to write a referral for occupational and physical therapy for Elle. She has plateaued at 15cc - 20cc for her feedings and I am concerned about that. I don't know if she has become accustomed to the feeding tube and knows that she will be fed that way so she just stops with the bottle or if there is something else going on. She definitely knows what the milk going into the bag means at 12:30, 3:30, 6:30, 9:30... She watches me so intently while I fill up the bag and prime the machine. I know she has it all figured out by now. I am hoping that an occupational therapist will be able to help with the bottle feedings. As for physical therapy - I want to know how to work with her for tummy time with her button. We got the ok to allow her to be put on her tummy - but she screams every time we do it so I'm thinking her button might be digging into her stomach and making it uncomfortable for her. Every little piece of advice will help!! The doctor also gave us the ok to start introducing Elle to the world. We can't go over board - no Wal-Mart, no church, no crowded restaurants..but we can start living our lives a little more normally than being stuck inside 24/7. This means Elle can slowly start having visitors! BUT - we ask that if you are sick or have been in contact with anyone that is or has been recently sick (including children) - please stay away! Lee and I are still leery about too many visitors so don't get upset if you drop by without calling first and I ask you to come back! The last thing we want is for Elle to get sick and end up back in the hospital! Speaking of sick, Elle had to get all her vaccinations. I couldn't watch because I was holding Elle's arms down - but she screamed so loudly! I felt so bad for my little baby!! She was miserable all weekend too because of the shots. Her little legs were just killing her and she screamed every time we would even touch them. Sunday afternoon she was feeling better so we took her on her first outing (other than to the doctor). We went to Lee's brother's (Austan) house that is being renovated after being demolished during Hurricane Ike. It looks so good! Vickie, Lee's mom, and I stayed outside with Elle and pushed her around in her stroller while Lee, Austan and Mark worked on taping off stripes for Elle's cousin, Witt's, room. We eventually had to turn the AC on in Mark's car and let Elle sit in there. Vickie got some great pictures of our little princess reclining in the AC. On the way home, we stopped at Garden Ridge to look at patio furniture. It wasn't crowded so we felt ok taking Elle in. I must admit that it was terrifying to take her into a store for the first time. She ended up getting hot so we had to take her out of her carrier and hold her. I kept looking at people that would walk by us and the first thought usually was "that person looks germy." I don't think I will ever get over that feeling of analyzing people that walk by me now. I think I picked it up in the NICU where I would scowl at people if they didn't wash their hands for long enough or if they had a runny nose or anything. Monday morning we had an appointment with Dr. Edmonds. We were praying that both holes he surgically made in her nose had remained open. He put some numbing stuff down her nose and then inserted the scope. We got to watch on a television screen what he was seeing as he inserted the scope. Her left nostril is still pretty open but her right nostril has closed a lot. There is a membrane covering the hole and only leaving a tiny opening. He said that the hole is big enough for her to still be able to breathe but we will have to have it corrected in a month or so. This means another surgery and more stents. Great. While he has her sedated he will also go in a snip her frenulum (the little piece of tissue that connects your tongue to the bottom of your mouth). Elle's frenulum is at the very tip of her tongue which may be inhibiting her ability to take a bottle and will definitely inhibit her ability to talk. Dr. E said that when she starts talking Spanish she won't be able to roll her "r's." I said that considering where we live - we should probably fix that! We go back in a month to check on the holes in her nose and probably schedule surgery. She will have to have this surgery before heart surgery so she can breath after having her heart fixed.
Elle is learning more and more every day. She is a little sponge! She is mimicking me and I swear I saw her do the sign for hungry yesterday. Vickie taught her "patty cake" and now she is rolling her little hands like Vickie showed her to do. She is holding her head up great and this morning my mom and I even put her in her bumbo chair. Now we just need her to figure out how to keep her pacifier in her mouth! She is sleeping through the night from 9:30ish until 3:30ish. She is only awake about an hour and then sleeps until 7:00am. I am going to ask the doctor if we can stop the 3:00am feeding because she is waking up when I attach her feeding tube. I'm pretty sure she would sleep all the way until 6:00am if I didn't wake her up.
Lee and I started a class at church on Monday night that is called "Shepherding a Child's Heart." The first meeting was quite interesting and the class revolves around Proverbs 4:23 - "Keep your heart with all vigilance, for from it flow the springs of life." Basically, "For out of the overflow of this heart his mouth speaks" (Luke 6:45). The part that I thought was the most interesting is the fact that frustration is not a "biblical term." There are no passages of Scripture that speak to frustration. We need to assign terms to attitudes and actions that are biblical terms and move our thinking toward the Bible instead of away from it. I'm not "frustrated" when Elle starts screaming - I'm angry that I can't calm her down. I'm not frustrated when I see other moms with perfectly calm babies - I am coveting what they have (a calm baby). It really put a lot of my feelings being a new mom into perspective. Until I can identify my feelings using biblical terminology, I can't use the Bible to understand them. It should be a very interesting class and I am so glad Lee and I signed up for it. It's our "date night!"
Tomorrow Elle has a day filled with doctors. We will go and see the Endocrine doctor as well as the Audiologist. Yeah for a full day at TCH! Hopefully we will get to see some of our old nurses and say hi!

I couldn't resist taking this picture at 3:00am this morning - she just looks so cute all snuggled up!


annalee said...

she is quite the cutie.
that parenting class sounds really good. i hope you share some more tidbits of wisdom from it soon!

Grma Anna said...

As Dr Seuss says " oh the places you go" will become your theme as you become more mobile with our little princess.

amy johnson said...

Elle is looking so big now!! She is just too cute. I think that with your 3 am feeding if the only reason she is waking up is because you are in there then she might sleep longer for you. I know when they are so small you want them to get all the milk and nutrients (sp?) you can, but if she can do with out it, you will feel so great having a full nights sleep. Keep up the wonderful work, it looks like she is thriving :) Yeah Elle!!! She will be swinging on the baby swings at the park before you know it!!!