Saturday, March 28, 2009

HOME BOUND!!!

This last Wednesday I went out to Salt Lake by myself, and this is what I arrived to. She is so bright eyed and alert! She is doing really well, and off oxygen.....again. It looks like it will stay that way too. She went into surgery Wednesday night to have her G tube placed in her belly. She did really well. They started to feed her again Thursday night, and she is tolerating her feeds. Which is also good. This whole tube thing is going to be very interesting, I took a two hour class at the hospital on Friday. It was actually kind of fun and we learned hands on, on how to tend to the tube and all the dressing etc. All I have to say is that I hope it never comes out until it is actually supposed to. As long as she continues to tolerate her feedings, they are saying we should be able to go home next Thursday! We are very excited for her to join us!
one hour after surgery, she is a little druged up as you can tell

sleeping peacefully two days after her second surgery


Thursday, March 19, 2009

Discouraging Trip

Well she was sleeping peacefully until I picked her up. This was kind of a discouraging trip. She is back on oxygen (very little) but we don't want her on it at all. She also is not taking her bottle like they want her to, she isn't swallowing good. So they are going to do another broncialoscopy so see if possibly there is something still blocking her airway. If there is not anything, which of course we are hoping, then they will decide if they will do a G tube (a tube surgically placed in her belly) so she can eat. She would come home with it, and then we would still work with using the bottle as well. But what I found out today was that I would have to clean the site where her feeding tube would be. Not to mention the two other wounds that I would have to clean as well, because the cut they made under her jaw to cut the bone to begin with opened up and they have been treating it. For some reason they feel they don't need to put a butterfly or steri strip on it so it looks horrible. Then when Shawn and I got there yesterday we saw that her cheek had split where one of the screws is going into her bone on her left side. So now they are tending to that too! So pretty much I am beginning to think that we may never make it home. It has been one thing after the other the last two days. Tuesday afternoon the E.N.T changed the distracters on her cheeks to just bars. We were under the impression that they would be smaller. But no... they are just the same size! There is no way I can pull things over her head. So now I have to buy more clothes, some that will either zip up or snap. I not complaining about buying more clothes, that is the fun part! But I am bumbed. It may very well be another three weeks before we are home. If that is the case she will be in the hospital almost as long as Jackson, and he was 3 months premature! One good thing, she weighs 9lbs. 7oz.!
peeking at my nani (Shawn's mom) she is taking my picture

when she gets hungry she gets mad, what you can't see is the nurse scurring around and getting her milk ready


Mommy's favorite girl!



Friday, March 13, 2009

Happy Baby

We went out and back yesterday. She is doing well. A little slow on the bottle feedings but it is because her tongue is still to far back. So the E.N.T doctor said they are going to adjust her jaw for another week. So that has pushed our coming home back a little. Hopefully once they are done adjusting her jaw she will pick up on the bottle really fast. I would rather not come home with a feeding tube. She is off oxygen so that is great. She is a funny baby. She loves attention, and to be held. The other day she was crying and crying, and the nurse was tending to another baby and kept saying I will be right there. So the second that the nurse walked over to her and talked to her, she was happy like nothing happened. I am excited to get her home, I am sure she will thrive off of the attention that her brothers will give her!
relaxing in her big girl bed. she graduated to a crib.

talking to my Poppy (my mom)


time for a bottle



Tuesday, March 10, 2009

My first bottle!

This was her first bottle feeding. It is going to be interesting, because with her cleft it is going to take her a little longer for her to learn to suck, swallow, and breathe at the same time. But it was fun to watch her discover that hey, this stuff is good! Otherwise she is doing really well. They are weening her off of the oxygen, and hopefully she will do well enough with the bottle that we won't have to go home with a feeding tube in her nose. It looks like they will be finished adjusting her little jaw by wednesday, or thursday. Then they will take the hardware out of her cheeks. So I am hoping we are home in two weeks.
this is her special bottle nipple for her cleft pallet

Uhhh... hello put that back in my mouth please!


Saturday, March 7, 2009

Toothless....

This is what you get when you cross Auntie April (my sister) with Jackson in the back seat on a three hour drive back home! Mind you these are only reese's pieces wrappers!

Progress Report

This is only the second time I have been able to hold her. I was able to hold her for over an hour and it was weird because she was getting heavy. Despite the hardware in her little cheeks, she is our heaviest baby. She is doing really well. The took out the breathing tube this last Thursday because her chin has come forward enough that she can breath on her own now. They also took out her pick-line(an i.v. that can last up to two weeks). All her medication will be given oraly, which is really good. She is still being fed through a feeding tube in her nose, but hopefully they will try and start bottle feeding soon. We are not sure when the gadgets will come off, but they are moving her jaw twice a day so maybe sometime next week. The enitial time line was 7-10 days. Then we should be getting ready to come home!
my auntie April flew all the way from Seattle just to hold me

checking things out


Wednesday, March 4, 2009

Hours before surgery

Hannah Lu ten days old. I took this picture about an hour before her surgery, since she didn't have anything on her face. The doctors took out her breathing tube two days before to see if she could manage on her own. She did ok, but struggled. It was hard work for her, since her little chin is so far back it obstructs her airway. When they finally came and got her they were an hour late! We walked down to the O.R. and we went to the waiting room. Her surgery didn't get started for another two hours. By the time all was said and done we had been at the hospital for seven hours. What a long day. I didn't take any pictures after the surgery. She looked horrible. We are going back out this Thursday, I am excited to see her. They started adjusting her jaw this past Monday and have been moving it twice a day! She is going to look different. The doctors are anticipating that we should be able to go home in 3 weeks! I will have more pictures from my upcoming visit soon! We love everyone, and are greatfull for the prayers that are being said on Hannah Lu's behalf. She is truely being blessed. We are as well!
peacefully waiting for the surgical team to come and get her