Another Miracle!

Yesterday when we were going through the "what ifs" with Faith's team we agreed the best scenario in today's bronch would be that she wouldn't require the surgery and she would come off the vent right away. We all brushed this off and said, "in a perfect world." Well- IT HAPPENED!!!! Faith did not need the surgery and she came off of the ventilator right away!!!!!!!!! Can you believe it? We are still not out of the woods yet airway wise- basically the doctor saw swelling and scaring at the vocal chords- he described it as a "difficult problem" but not a problem that would be solved by a split. A Trach would be more appropriate, however that is the absolute last resort. He suggested to give Faith time (although he did say this is a problem that will last many months). Receiving treatments (such as inhaled steroids, nebulizers, etc) will help the swelling. But we know what will ultimately help this all: PRAYER! So we are staying positive that she will not need a trach and her airway will heal completely.
Now we tackle another issue: feeding. Faith is a full term 42 weeker now- who is supposed to be nippling. As you know she stopped nippling about a week ago. If she continues not to eat, she may require a gastronomy tube (a feeding tube inserted into her stomach). This is also a last resort- Once Faith gets off of the high flow cannula (which will be a while) and is on an amount of oxygen that is appropriate to come home on, then a g-tube will be discussed. But we are praying that we won't get to this point! So that's where we stand. Right now Faith needs to get of off CPAP (she was put on CPAP right after the procedure today).
Well we are so thankful for today's miracle- really the fact that she came off of that vent so quickly is amazing considering her history!
Let's keep the faith!
Brian and Jen :)

Ok Here we go...

Remember this bear? Faith at 1 pound 3 ounces (her weight a week after birth)

Look at the bear now! Faith at 5 pounds.

Tomorrow Faith is going to have a rigid bronch. She will have to go down to the operating room (her surgeries in the past have all been in the NICU) she will be placed on the ventilator, and will more than likely have a cricoid split surgery. Basically this means they will surgically widen her airway. They think this is really going to help Faith. For the past four months she has struggled with breathing- her lungs look ok- it is her upper airway that is concerning. The post-op for the split will be difficult. She will have to be on the ventilator for a couple of weeks with limited movement so everything can heal. We know this is going to be a couple of difficult weeks ahead of us.
Today's other news was her eye exam. Everything kind of stands as it did last week. In both eyes there is pulling of the retina- the doc. said "we are not out of the woods" meaning the retina could still detach- the good news today is that it hasn't. Once again she will be closely watched.
Today we spent some quality time with Faith watching her do the baby things we won't get to see for a while (we gave her a bath, watched her in her swing, etc.) We really appreciate your prayers over the next few weeks. We pray that Faith will heal quickly and this will really help her. On a positive note we will finally get to the point of what has been interfering with Faith's breathing.
Thanks so much,
Brian and Jen
For more info on what a cricoid spit check out: http://ivillage.medicdirect.co.uk/diseases.asp?pid=1664&step=4

It's the little things........

We thought we'd do something we haven't done in a while- post a note that is nothing but positive. Today Faith had her first ride in her swing. This was exciting for all of us- for a moment we forgot that she was sick- she happily swung in her swing just like a "normal," healthy baby. Watching her "be a baby" for once was such a delight. :) We know this is just the beginning in Faith doing "baby" things- and we'll certainly enjoy and appreciate every minute of them!
Have a good week!
Brian and Jen Whoa! What is this thing? I've never experienced this before!!!

Ahhhh......actually this is kinda of nice!

Boy! All of that swinging tired me out! (This is one of Faith's favorite positions- while she is in our lap she rests on the boppy). She is so funny- she always has to have her arms near her face- her favorite position is sleeping on her hands. We do this too!

Happy 16 Weeks Faith!

Today Faith is 16 weeks old. Honestly we are beginning to grow a little weary- especially since two weeks ago we were told that Faith might go home soon, then this week we had some set backs that have not put an end in sight. 16 weeks is a long time to drive to the hospital everyday and watch your baby be poked, prodded, and fight for life. Nevertheless she keeps us going!
Faith's breathing continues to be a struggle. It is very evident that she is very air hungry. Everyone is still a little concerned about this. Although her last Bronch showed minor swelling, by the sound of her breathing there seems to be something more. It was brought up today that Faith might need a rigid Bronch. The last Bronch she had was flexible- this is less invasive and provides a "quick look" at the airway. A rigid Bronch goes much deeper into the airway and gives a more detailed look. The troubling thing about a rigid is it requires general anaesthesia (yes, that means a ventilator). While the doctors have brought it up, it doesn't mean she will necessarily need one- they are going to speak with the ear, nose and throat doc that did her last two bronchs to see if there is a need. The other alternative would be to wait and let her grow. The troubling thing with that is that they don't want to miss something. If there is something wrong with her airway, they want to know- because when she does eventually come home if she got into trouble we would not be prepared to help her.
As for the eyes she will have them examined on Wednesday. This a a big day- last week the doc. said the retina could be detaching in one eye- let's pray for a healing! Faith is proof that miracles do happen, and her eyes are going to be a testament to another one!
We cannot thank you enough for keeping our angel in your prayers this week.
Brian and Jen

Faith needs time.

Today we had a meeting with Faith’s doctors and primary nurses. We discussed the plan of action for Faith. Basically Faith just needs more time. There are a number of factors that could have contributed to Faith’s recent decline. One of those could be fluid retention. Faith has been looking puffy lately and has been gaining a lot of weight (which we know is not like Faith). This extra fluid could be making it difficult for her to breathe. They have increased her diuretic and have decreased the amount of fluid she is taking in (but increased the calories so she will grow). We also think that we were weaning her off of her high flow cannula too fast. We are going to take this very slowly which means that it will be a while before Faith comes home (at least another month or so). We are not concerned with her eating on her own right now- even if she did eat on her own she wouldn’t be able to come home for a while. It is unrealistic to expect her to eat when she can’t breathe! We will focus on that when she is on the low flow cannula. This week has shown us how fragile Faith is. She has a very reactive airway which means she is very sensitive to common things that wouldn’t bother a typically newborn (stuff in the air, germs, etc.) This just reiterates what we already know- we need to be very careful with Faith both at the hospital and at home. Even though it is going to be a while, we are already preparing our home for her- like putting purrell in every room. We know that this too shall pass- Faith is not like most babies and will need some extra time. Which is ok by us- we’d rather catch all of these problems before we go home, because often times with babies like Faith after they go home they have to go back to the hospital (and we’re not doing that!) Well thanks for your continued support and encouragement!
Brian and Jen

Day 108

Ok here it comes- Faith had an eye exam yesterday. The good news is her left eye seems to be healing fine. The bad news is that in her right eye it looks like the retina is detaching. If the retina detaches she will lose her vision in that eye. The retinaologist that performed her last two eye surgeries is coming to look at her eyes again today. If it detaches there is really nothing they can do to save her sight. In other bad news Faith is still struggling to breathe. She is receiving inhaled steroids and nebulizer treatments to help her breathe.
Faith is our hero. She works so hard to do things we take for granted everyday; breathing, eating, and seeing. Every breath is a struggle- but she keeps on breathing. If we were her, we would have given up by now- but she is a fighter. The poor thing- her first four months of life have been filled with nothing but pain. True, she is happy when we hold her, but you can tell she still is in a lot of pain. She is truly an inspiration!!!
Thanks for checking in today,
Brian and Jen

Faith needs prayer

We were a little premature in announcing that Faith could be coming home in the next few weeks- she is defiantly going to need more than a few weeks to recoup. She is not doing very well. She is now being fed by a feeding tube, and she is back on the CPAP. She was really struggling to breathe yesterday and tired out. They took several x-rays which showed an enlarged heart. This could just be from the stress of breathing with chronic lung disease, but just in case she is going to receive an echo today. They are considering doing another Bronch to look at her lungs. A baby that is 41 weeks should not be having the problems that Faith is. She's gotten through so much we know she can get through this.
Thanks for praying for Faith today,
Brian and Jen