Christmas

We know it hasn't been too consistent since we've gotten home but just know that no news is good news. Five kids are keeping me in line with Ryan finishing up at St. Marks and doing some days at Hill this past week. We had such a nice Christmas and felt love from so many people this season. Our family has felt concern and care over these months of back and forth. We are so grateful! As you can see, a little baby is growing up! She's tipping the scales at 9 pounds 10 ounces!

Big Day

Hi everyone--I haven't posted in a few days because we have her home now and she has been doing well for the most part. Annie doing well is worthy of note though! The past few days have been pretty rough health-wise for our family, though, and we are hoping that Annie is not too adversely affected. It seems like she came home to a house full of sick people, so it looks like she'll definitely be exposed to what the world has to offer germ-wise. We just pray that she can manage it and not get too sick through it all.

Today was a pretty big day for our family. It all started out with Caleb getting baptized. While he and I were sitting up in the choir seats waiting for his turn, he leaned over to me and said "Dad, I'm never going to be the same again now that I'm getting baptized. I won't be how I was when we left home this morning--I'll be different." I thought that was quite the observation on his part. About his baptism Caleb said he was pretty shocked at how cold the water was (as was I), but then was amazed at the warm feeling he felt when he went under the water. He explained it as a warm feeling in his chest and understood it as the Holy Ghost. It was pretty neat to hear him explain that.

After the baptism and confirmation we came home and performed Annie's baby blessing. She looked so beautiful, as you can see from the pictures. She was quite fussy before the blessing but seemed so calm and relaxed during and afterward.

One final thought for tonight: we just can't say enough how thankful we are to all of you for your love and support of us over the past several weeks. You have been so kind in so many ways and we feel extremely grateful. We are just blown away at all that has been done for us--the prayers, fasting, meals, phone calls, e-mails, letters, gifts, and most recently a fund-raiser. Thank you so much.

Home again

Tonight we brought Annie home...again! She is now on a little bit of O2 (we have the oxygen tank tower and never-ending tubing for easy roaming around the house) and has a pulse oximeter monitoring her sats as well. This gives us a lot more comfort during her sleeping hours. It's also nice to have a live in nurse with us for the next few nights (Nicki's mom!!). Thanks Chris! Annie is doing great so far and the kids are absolutely ecstatic about it. When Ruby saw Annie for the first time she just sort of shook and went "oooooooohhhhhhhh!" That was pretty great to see. Much different than when we brought Annie home the first time and Ruby turned her back on her! So, things are looking pretty good right now and we are so happy to have Annie back here with us. Thanks so, so much for all of your kindness, love, generosity and prayers on our behalf. We have definitely felt the support and so has Annie!

Out of the ICU

Today Annie did such a great job with her breathing! As the day progressed Annie was able to be slowly weaned off of the O2 flow amount until ultimately she had all O2 removed and she is now moved from the ICU to a regular room on the floor. This is exciting because it suggests she's doing a lot better. It turns out Annie has a strain of the flu and that could very well bear some of the responsibility for her sickness. She's still pretty wheezy and raspy, but that does not stop her from wanting to bottle feed. She still hasn't been too keen--as of yet--to breast feed. We'll see as she gets even stronger and recovers from her sickness. Tonight Nicki is spending the night with Annie to try and feed her when she wakes up for feedings. We are pluggin' right along and excited for the progress Annie's making!

Extubated Annie

After extubation

Pre extubation

This afternoon Annie was extubated from the ventilator and her O2 saturation really has been good ever since. However, she does have a very soar throat and there is quite a bit of inflammation in the breathing passageway. This is making her work very hard to breath so her lungs are retracting quite a bit. This causes her heart rate to increase and tires her out. She has also been secreting quite a bit of gunk during and after her intubation which has been difficult for Annie to cough up and swallow. All of this makes her anxious and irritable--it's hard to see her this way. Right now she cries but has a horse little voice so she can't make much noise. This is a time when we would actually welcome a nice healthy cry from a baby!!

So, tonight the staff gave Annie some morphine, a breathing treatment (to open the airway) and some adivan to help her be more comfortable and sleep tonight. Since intubation Annie has been on 1/2 Liter of regular O2, but may be moved to some high flow tonight just to spell her breathing mechanism (which is getting exhausted from the constricted airway). We hope she will be able to rest and recuperate tonight!

I have to say--I as away this whole weekend helping out with a marriage and family retreat for the USAF up at Wolf Creek--Annie looks so much better than when I left! She was so swollen and sad when I left. She's still a bit sad, but the swelling is down quite a bit. Her weight gain is good and normal for her growth pattern. Today she weighs 8-1/2 lb! That means she has basically quadrupled in weight since August 17th. Go Annie!

Thank you all for your fasting, prayers and thoughts these past few days. We have felt the support and are grateful.

Weaning

Annie is slowly being weaned off the vent, but it is slow going. Today the staff let Nicki hold Annie very briefly, but it was interrupted when a piece broke on the ventilator, Annie started vomiting and turning blue, and ultimately they had to bag her. We are all pretty baffled about the cause of all of this. All the tests have come back negative--even for rhino virus. So, it seems there is no real causes, yet Annie is very congested and having breathing problems! Very perplexing. Tomorrow the hope is continue the weaning from the vent. During today's weaning process Annie was actually doing more breathing on her own than she's done in the recent past, so that is good! We will hope and pray for continued improvement tomorrow and as the days go by.

Annie day 5

Hi all: We are feeling pretty positive right now about how things are going--that's the bottom line up front. Today was a big day of tests and results. Earlier this morning Annie had an MRI to check for brain function and possible centrally caused apnea (neurological apnea). In preparation for the MRI Annie had to have some morphine and adevan (for anxiety) and specifically prepared breathing support (vent) for the 30 minute test. The results from the test show absolutely no problems--this is very happy news! Notice the beautiful picture here of Annie's brain--you can see all the parts and that they are healthy. We also got the results back from the PH study....drum roll...the findings: reflux is not really a factor here. The test results show that just a small handful of her breathing episodes coincided with acidic reflux. Most of the time, however, the episodes just happened--independent fromt acid reflux. The test did show that zantec (reflux medication) did eliminate the acid reflux, so Annie will remain on that med for a short period of time.

The attending doc spoke with us several times today, and one other test she proposed was a spinal tap to check for possible meningitis. They were slightly concerned about this being a possibility because of how quickly her fever and lung congestion spiked over the night. This was of course scary to hear that this might be a diagnosis! So, they did the spinal tap--which was sort of traumatic in and of itself watching a big needle being inserted into her lower back! It was also fascinating to watch the resident who did it, who was also training a medical student how to do it. I was glad the resident did it instead of the student. After they did it I asked them how it was for them to do such a procedure...do they ever feel nervous? Yes! The resident said she did feel nervous at first but now that she's done so many she doesn't anymore. Although, it did seem like I saw her hand shaking as she was capturing the spinal fluid droplets into her vial. We are all humans here right? I think I'd be nervous too. So, the spinal fluid came back clear and no signs indicating high white blood cell counts (hinting at meningitis). In fact, Annie only had 2 white blood cells in her fluid. Good news.

Annie also had another chest Xray today which revealed that the fluid in her lungs is still there, but it has now moved around and is diffusing a bit and breaking up. The team suggests it will get even clearer once she's off the vent.

So, for now Annie is resting and riding happily on the ventilator. We are hoping to wean her off the vent very soon and then introduce feedings again. The feedings at that point will be dairy free to see if that might help with things. As far as the weaning is concerned, Annie seems SO tired and is enjoying the break from breathing on her own right now. The hope is that as her cold virus passes and she gets rest she'll have more energy to begin breathing on her own again.

So here's what we'ver learned: reflux is not the primary cause, there is not a clear neurological problem, she has an infection and had a fever--but now has her temp under control, the cause may be age related (still a premie baby), it could be allergy related, and she's going to be here for a bit more. More to follow!