G-tube or NG tube?

Still meeting with your OT--I think we are making progress. You aren't really taking more milk, but you are protesting less. And you are up to 60 CCs per feeding—that’s a full feed! You will stay at that for a while. I spoke with Dr. Ahmed and it sounds like you might get to come home next week. This weekend Daddy and I need to make a decision on whether we should take you home with an NG tube or a G-Tube. The G-Tube is a button valve in your stomach and the NG tube is the tube up your nose and down into your stomach. They both have pros and cons of course. I am praying you will do a great job eating tomorrow and make our decision easy for us. We also found out today that your cataract surgeon will be Kimberly Yen. When we first found out you had cataracts, your Granddaddy did a lot of research and found she is the best, so we are so excited about that!

Changing of the Guard

This is a pretty slow week for us. We are still waiting on the results to come back--we are kind of in a holding pattern until we get some answers. The genetic reports aren't back today like we were hoping they would be. We have a pretty good system down for keeping someone by your bed at all times. The NICU closes the unit 4 times a day for shift change. I get there when it opens at 7:45a and stay until the afternoon. Grammy or Honey come at 11:00a and then the other grandma comes at 1:00p and stays until the NICU is closed at 2:45 for shift change. At 3:45p Mema comes and stays until the 6:30 shift change. Dad and I come back to see you at 7:45p and stay until the 10:45 shift change. You are getting to be a spoiled baby already, since someone is always there who wants to hold you. The nurses try to tell us we shouldn't hold you so much. But we are in the hospital! There are a whole new set of rules here! When we get home things will be different, but for now I am so glad you feel secure and comforted all day. What a blessed girl you are!

Food We Know Nothing About

I was expecting you to be allowed to eat today, but since your first barium enema results were inconclusive, the doctor wants to wait a few days for all of the contrast to leave your system and then we will try again on Thursday. And since we don't know what is going on with your digestive system, the doctors feel it is best that you don't eat anything until we figure it out. You already haven't eaten since Thursday and I hate to think how hungry you might become. I had been praying that God would make your tummy feel full when your Grammy called to remind me of a verse in John. After Jesus spoke with the woman at the well, His disciples were encouraging Him to eat. Jesus replied, "I have food to eat you know nothing about" referring to doing the will of God. You are such a special girl. There are probably thousands of people all over the world praying for you. We get emails from people we have never met saying that you have impacted them in amazing ways. You won't know the difference you have made in strangers lives until we get to Heaven--your Daddy and I are so proud you are ours. God is doing great things through you while you unknowingly rest in your little crib, and in the meantime we are praying that He will give you food we know nothing about.

Father's Day!

Today is yours and Daddy's first Fathers Day together! You were extubated this morning at 10:00 instead of last night at 8:00. The nurse practitioner had a really hard time intubating you, and they wanted the same people to be there when they removed the tube in case you had complications that required it to be replaced. I was so sad that you had to have it an extra 14 hours--especially during the night when I couldn't be there to comfort you. But it was best to play it safe. When the tube was removed your little voice was so hoarse, but you didn't look or act too uncomfortable and were in good spirits. You got Daddy a couple Father's Day cards, and asked Mema to pick him up a treat from you--that was sweet! The two of you spent lots of time rocking and talking together. Aunt Paula snuck into the NICU again this morning and spent some time sitting next to you, and then later we got actual permission for her to stay! So she spent the last couple hours holding you--what a special gift that was for everyone.

Your face in this first picture makes me laugh so hard everytime I see it.

Central Line and Aunt Paula

Today was a big day for you! First thing this morning you had your first surgery to insert a central line. You have some abnormal tracheal anatomy so they had a tough time intubating you, but they eventually got it. I wasn’t there this morning during your surgery…Daddy and I were at home. But your Grammy sat there while you were in the OR and she told me the power went out for 8 minutes while you were in there. So the nurses had to hand bag you during that time. I am so glad I wasn’t there for that, because I probably would have panicked. But thank you Jesus for protecting you during that time! You did so well--it didn't take you much time at all before you started to wake up and squirm. No one could hold you because you were still intubated, and it was so hard for us to sit next to you and not be able to hold you while you were fighting the tube. But you did ok with us just holding your hands and talking to you and kissing on you. You also felt better when you were cuddling with your Lambie that the church brought you! You love that Lambie.

Today was also special because your Aunt Paula came to meet you! Since she used to work at Texas Women's, she knew the back ways into the NICU and had some connections, so Paula put on some scrubs and a good friend helped to sneak her in to see you! Aunt Paula--ahem, I mean Anesthesiologist Paula (wink, wink)-- and Daddy kept singing the Mission Impossible theme song--they thought they were so sneaky! We were so grateful Paula came down and spent some time with all of us--Saturday was such a good day.

First Surgery Scheduled

In these first 5 days, you have had dozens and dozens of IV's started in your arms, legs and scalp. The nurses are running out of places to stick you--and they shaved several patches of that beautiful hair we were so proud of! So the docs tried to place a PIC line, which is more long term than a normal peripheral IV. After several attempts, they couldn't do it and decided the best option was to place a central line. You will need surgery tomorrow to have it placed, hopefully in your leg, but maybe chest or (eek) neck. This should last at least a month, and although it worries me for you to undergo anesthesia already, I know it is for the best and will make you so much more comfortable.

Hear this!

You can hear! Mama insisted the doctors give you a hearing test...they wanted to wait until you were discharged. I was so worried you might be deaf and blind. Grammy beat me to the hospital this morning and texted me the news. I collapsed onto my bed, sobbing with relief. It seems like most of the news we receive is negative, and it's a bit overwhelming. I am thankful for this piece of good news.

I was anxious to come back to the hospital this morning and talk to you knowing you could hear me and recognize my voice. Our days are pretty easy and quiet. You are still recovering from the birthing process and do nothing but sleep all day long. You have taken a couple very small bottles, but it doesn’t seem like you are digesting much. Today they did a barium enema to watch how your food travels through your body. The results are inconclusive so they may have to do a biopsy in a few days to get more of an idea what is going on.