Thursday, May 31, 2007

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 :)

Wednesday, May 30, 2007

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

Monday, May 28, 2007

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!


Sunday, May 27, 2007

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

Thursday, May 24, 2007

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

Wednesday, May 23, 2007

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 Check Spelling

Tuesday, May 22, 2007

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

Monday, May 21, 2007

Eat Faith Eat!!!

Faith is having a very difficult time eating. We have experimented with various kinds of nipples, bottles, and techniques and nothing seems to be doing the trick. Babies who have been on ventilators for long periods of time often have nipple aversions. We hope this is not the case for Faith- but getting her to eat is like pulling teeth. She will not be able to come home until she can successful nipple all of her feeds. This might keep us there for a while- please pray that Faith will catch on!
Thanks,
Brian and Jen

Friday, May 18, 2007

Day 104

Rib-it! Being a big girl is so much fun! I get to wear really cute clothes now! Below: Faith sleeping in her oxygen hood. She is receiving oxygen through her cannula, the hood is putting out a warm mist (much like a humidifier) to help the swelling in her airway.

Well we made it- we are in the home stretch! When the doctors come to talk to us now it is about preparing Faith to come home. They have begun to wean her oxygen settings- which still
have a far way to go before she can come home, but the point is that we are getting there. Faith is now a little over 5 pounds! She has quadrupled her birth weight (1 pound 6 ounces). She is an entirely different baby.
Her feedings have been going better. It just takes her a while. She drinks about 2 ounces every 4 hours. It takes her about 40-50 minutes to take down each feeding. We have learned the key with Faith is to have lots of patience. Which isn't a bad thing to practice- this little girl teaches us a new lesson every day!
Well thanks for checking in on our little sweetie today!
Brian and Jen

Thursday, May 17, 2007

PHEEEEEEEEW!

If you do not believe in miracles, keep reading and prepare to have your mind changed. Faith had her Bronch today and the doctor said that her airway looked good and she does not need any intervention! He said it looked much better than before! She has a little bit of scarring on her vocal chords, which has been causing her raspy, noisy breathing. He said that this will not affect her breathing, she’ll just be a little noisy. After hearing this her doctor said, "Let’s get this girl home" !!!!!!!!!!!!!!!!! Can you believe it? This truly was a miraculous healing- anybody who has heard Faith breathe can testify that she sounds bad- but nothing is going on down there!!!!!! Alright, so now we are focused on her coming home. In order for her to come home she needs to eat better; today she was really struggling to take bottles and had to have partial feeds through her tube. She also needs to move to a low flowing nasal cannula on a lower amount of oxygen. Right now she is on a high flow cannula where she is receiving some pressure in her airway. Both of these problems could be resolved in a matter of weeks. In fact, her doctor thinks it could be in as little as two weeks. You have no idea how good that sounds- we were expecting months- not a few weeks!!!!! It hasn’t really sunk in yet- it’s kind of like winning the lottery- in a few short weeks our precious baby girl could be home with us- really just the thought of that is incredible!!!!!!! YAAAAAAAAAAAAAAAAAAAAY!!!!! We want to say Thank you, thank you, THANK YOU for your prayers. Miracles DO happen- Faith is living (BREATHING!) proof!!
Thanks again,
Brian and Jen :)

PHEEEEEEEEW!

If you do not believe in miracles, keep reading and prepare to have your mind changed. Faith had her Bronch today and the doctor said that her airway looked good and she does not need any intervention! He said it looked much better than before! She has a little bit of scarring on her vocal chords, which has been causing her raspy, noisy breathing. He said that this will not affect her breathing, she’ll just be a little noisy. After hearing this her doctor said, "Let’s get this girl home" !!!!!!!!!!!!!!!!! Can you believe it? This truly was a miraculous healing- anybody who has heard Faith breathe can testify that she sounds bad- but nothing is going on down there!!!!!! Alright, so now we are focused on her coming home. In order for her to come home she needs to eat better; today she was really struggling to take bottles and had to have partial feeds through her tube. She also needs to move to a low flowing nasal cannula on a lower amount of oxygen. Right now she is on a high flow cannula where she is receiving some pressure in her airway. Both of these problems could be resolved in a matter of weeks. In fact, her doctor thinks it could be in as little as two weeks. You have no idea how good that sounds- we were expecting months- not a few weeks!!!!! It hasn’t really sunk in yet- it’s kind of like winning the lottery- in a few short weeks our precious baby girl could be home with us- really just the thought of that is incredible!!!!!!! YAAAAAAAAAAAAAAAAAAAAY!!!!! We want to say Thank you, thank you, THANK YOU for your prayers. Miracles DO happen- Faith is living (BREATHING!) proof!!
Thanks again,
Brian and Jen :)

Wednesday, May 16, 2007

Day 101: not so great

Ok...hmm...where to start. Ever since Faith extubated two weeks ago she has not been sounding good. She is very striderous. You can hear her gasp for air. Today it was evident she is tiring out when she wouldn't take a bottle (she was fed by a feeding tube for the first time in a week today). Tomorrow a specialist from the Children's Hospital is coming to do a Bronchostomy to see what the problem is. When he looked at her last month her airway was swollen and had a flap that was making it difficult for her to breathe. Faith may need a surgery to widen her airway. This surgery is called a Cricoid Split. The surgery basically widens her airway. Yes, she would need to go back on the ventilator for the surgery, and would require a week or more to recover (also on the vent). We are going to pray that Faith won't need this surgery- that the Doctor will see that her airway is healing. If she does end up needing it, this should solve the problem. The Bronch is scheduled for tomorrow morning.
Thanks for the prayers,
Brian and Jen

Tuesday, May 15, 2007

Hip-Hip Hooray for Faith's 100 Days!





Rather than being sad that today was Faith's due date, we celebrated that she turned 100 days old today! We had a party perfect for a princess complete with butterfly cupcakes and "100 Day" glasses (in honor of her eye exam of course, btw we have been told that Faith will probably need glasses as early as in a few months). Speaking of eye exam Faith DOES NOT need another eye surgery! YAY! The Plus disease is still there but is showing improvement. They are still concerned that her retinas could detach, but it is nothing that can be prevented or fixed with another eye surgery. Finally some good news!!! We had a wonderful night with Faith, Brian got to experience bathing her (which was terrifying because she is not hooked up to any monitors and turns blue!) for the first time. So as it turned out today was a great day- we got to celebrate that we got to meet our little miracle 100 days early. She has been such a joy- even though these past few months have been very stressful she has made them the best 100 days of our lives! Here's to many hundred more!!!
Brian and Jen :)

Monday, May 14, 2007

Day 99!

Sorry it has been a while since we've updated the blog. We have been more involved in Faith's care (feeding her etc.) which has required extra time at the hospital. Faith is hanging in there. The good news is she has been gaining weight. She is now 4 pound, 12 ounces. Faith continues to have trouble breathing. She is very striderous. Her airways are still very swollen. As a result she is on CPAP, unless she is being fed (then she is on the cannula). We are a little concerned that she might need a surgery to open up her airways. We are waiting for Faith to grow more before any decisions are made. Tomorrow is Faith's eye exam. This will be a huge day for her. Please pray that the Plus disease has corrected and she will not need a third eye surgery. This is a hard week for as, as Faith will be 40 weeks tomorrow. Back in February we were counting down the days until May 15th. Now that May is here we are bummed that Faith is still not healthy, and will not be coming home any time soon. Nevertheless we have been blessed to get to know her 3 1/2 months early! It has been such a joy to watch her grow.
Thanks for all of your prayers!
Brian and Jen

Thursday, May 10, 2007

One step closer!

We have some good news today (it's about time!) For the last 24 hours Faith has taken all of her feeds by bottle!!! She hasn't even had her feeding tube in! While she is "nippling" she does struggle with it, but her nurses have told us it is getting easier and easier for her to do. This is a huge step in the right direction. While we are moving froward in the feeding area, once again the weight gain continues to be a problem. She is still losing weight. This might be our battle that keeps her in the NICU for a while. She needs to be showing steady growth. Once again there is a catch 22; She needs to work on nippling, but she burns a lot of calories doing this. So is it worth it? In our minds yes, because she needs to learn to eat on her own. The weight will come- this may mean she will need to stay there longer, but it will come!
Thanks for stopping by today!
Brian and Jen

Tuesday, May 8, 2007

Enough already!

Faith had an eye exam today. Lately whenever we open with this line something bad follows, and sure enough it does. The doctor's first words were, "Faith's eyes are not healing very well." She still has Plus disease in both eyes. This may require surgery again. We don't even want to think of that because it may mean she will have to go back on the ventilator. This is like the movie Groundhogs Day- only with a horror movie twist. Nevertheless, we know the Great Physician and her eyes CAN be healed!!!!
In other Faith news the on and off CPAP thing seems to be working- it gives her a break and allows her relax a bit. Relaxing is key for Faith because when she is working hard she is burning calories- every little calorie is important. In order for Faith to get better she needs to grow- growth helps her airways, her organs, etc. Like we've said before she is VERY much behind in this area.
We are asking for more miracles here- we've had many of them, and we are very thankful- but a few more would not hurt!
Brian and Jen

Faith is one week away from being full term!!

Well.....Faith is back on the CPAP. But this time it was by our choice. Yesterday we noticed that Faith was struggling to breathe- you could her how stridorous she was (swollen airway). We have noticed this is the pattern for Faith- the first day she is on cannula (or extubated) she does great- the second day she struggles. When she starts to drop, she drops very fast, and often resuscitation is needed. Rather than waiting for her to fail, she went back on CPAP for extra support. They are going to try to do 4 hours on CPAP, 4 hours off. So this is a tiny setback, but anything is better than that ventilator!
Please pray with us that her airways will heal!
Thanks,
Brian and Jen

PS: Last night was a really fun night- I (Jen) got to give her a FULL bath (without monitor leads and everything). It was so special to wrap her in a towel, dry her off, put lotion on her and tuck her in to bed- it felt like she was our baby!

Sunday, May 6, 2007

Day 91

Nasal Cannula here we come! Sleeping beauty

Faith is not on the ventilator! Hooray! In fact as of this afternoon she is not even on CPAP, but on nasal cannula! YAY!!! She might need to go back on the CPAP for a little bit (she gets easily tuckered out breathing on the cannula), but we're just happy to be done with that ventilator! Our next big battle is feeding. While Faith has a good sucking reflex, the suck, swallow breathing part has been difficult. We have been trying a little bit of breast feeding which has been going ok. We are taking "baby steps"- some "sessions" she almost gets it, and others she freaks out. Due to Faith's recent setbacks she is behind in this area- so please pray with us that she will get the hang of feeding. Faith's weight gain (or lack of it) is becoming a little problem. For the past month she really hasn't gained weight. She is about 4 pounds 1 ounce now, which is very small for her gestational age (39 weeks). It is true that she has been through a lot, therefore there is a reason she hasn't gained, but she does need to start packing on the ounces or she won't be able to come home (there isn't a weight requirement to go home but there is a requirement of her being able to consistently gain weight).

We'll that's about it for today!

Thanks for checking' in!

Brian and Jen

Friday, May 4, 2007

Happy 3 months Faith!!!!

Faith is 3 months old day! And she is STILL on CPAP and STILL doing marvelous! This is nothing short of a miracle. She is still at 21% oxygen (which is room air). She is a little cranky because she withdrawing from the morphine she has been on all week (she's almost like a crack baby.) Nevertheless her crankiness has not affected her heart rate or her oxygen saturation level. Even more exciting, yesterday Faith took 10 ml's from a bottle! This is huge! Now that Faith is off of the vent we can focus on getting her to feed (right now she is being fed by a feeding tube.) It is hard for these little ones to get the suck, swallow, breathe reflex so it may take some time, but each day she will get a little closer. In order for Faith to come home she needs to "nipple" all her feeds by breast or bottle. We finally feel like we can see a glimpse of light out of this tunnel! Praise God!!!!!
Brian and Jen

Thursday, May 3, 2007

Quick Update

Faith made it through the night with flying colors. She is in 21% oxygen which is room air (meaning she is not really receiving oxygen support, just the pressure from the CPAP). This is HUGE. Faith has never been in room air before!!! She only de-sated once through the night and that was during her cares (which is very typically of almost any preemie). This is truly amazing. At one point when I called during the night and got such a good report I asked the nurse, "are you sure we are talking about the same baby?" This is truly a miracle!
We will let you know how she does today!
Go Faith Go!!!!!!!
Brian and Jen :)

Wednesday, May 2, 2007

YOU CAN DO IT FAITH!

YAY for CPAP! As you can see Faith's eyes are swollen from surgery.
Faith's nurse Erin took these pictures while taking her off the vent and putting her on CPAP. Once again it is nice to see her untubed (even if it is just a few seconds!)


It's official. Faith is extubated and on CPAP. When we left this evening she was doing great!!! This is Faith's last shot. She's doing pretty good so far! Today the retinaologist examined Faith's eyes. Fortunately he was able to re-laser a part of her eye that still showed abnormal vascular growth. This was great that he did it today-we didn't have to wait. Unfortunately we did receive some potentially scary news. Faith's ROP has cleared up, however there is some scar tissue growing where the plus disease was. If these fibrous layers continue to pull away it could detach the retina. If this happens, Faith would be blind. At this point there is really nothing they can do. There is a complex procedure that involves shrinking the eye to fit the retina, but it is very invasive and does not have favorable outcomes. We won't worry about this unless it happens and we are going to have FAITH that it won't. After all We live by FAITH not by sight (2 Corn. 5:7)

Please continue to pray with us that Faith will make it on the CPAP, and that her eyes will be healed.


Brian and Jen

Tuesday, May 1, 2007

The Waiting Game Part II



The picture on top was taken about 2 months ago. The bear in the picture is about 4 inches long. The bottom picture was taken today. As you can see, the bear is as big as her head! At 4 pounds, 6 ounces Faith has more than tripled her birth weight. Although she is still behind her peers (other babies born at her weight) she is doin' pretty good for a gal whose been through as much as she has!
The next week is a life changing week for Faith. Tomorrow she will receive another eye exam. The specialist will determine if she needs another eye surgery. If not she will be taken off of the vent in the next few days for one last try at breathing on her own. If she cannot do it, then she will need a surgery to open her airway (which could mean a trach). We are a wary of her chances of making it, seeing how she has been reintubated so many times in the last week, however we are going keep the FAITH!!!
Thanks for praying for Faith this week, we truly need another miracle!
Brian and Jen