Walking for Faith across the country!

Our friends Daryl and Sara walked for Faith in Richmond, Virginia today. On the walk they met a family who had a story just like ours- their little boy had eye surgery and was on the vent for 3 months! He is now a happy, healthy 4 year old! Thanks for walking Daryl and Sara! That story really gave us hope!

Faith is NOW 12 weeks old (we miss counted last week!)

Faith has made it over 24 hours without pulling her tube! To clarify when we say "pulling" it doesn't necessarily mean she physically pulls it. Faith is swaddled extra tight to insure her hands won't interfere with the tubes. What is happening is Faith has a lot of secretions (due to the ventilator) the secretions lubricate the tube, thus the tube slides easily with movement. When Faith feels these secretions she starts moving her head around, which makes the secretions worse and the tube more likely to come out. They are suctioning her very frequently to keep these down, but like almost everything in the NICU it is a catch 22- the more you suction the more abundant the secretions. She is also being heavily sedated. They have increased her sedation levels- so she is pretty zonked out every time we see her.

The past few days she has had blood in her stool, which could be a sign of infection. They are motoring her close by taking blood samples frequently. So far her lab work is "ok" (she is low on things, but that is typical Faith) and nothing has grown in her cultures. They think it was an intolerance to the high calorie fortifiers she was receiving (to boost her growth). They have been giving her pedalite then straight breast milk for the time being. We will keep you updated on that. Right now our biggest struggle is keeping that tube in. Please continue to pray with us that it will be kept in!

Thanks!
Brian and Jen

Walk America 2007: Fighting for Faith!

Why we walk: Faith cuddling with her March of Dimes bear.
Well, we did it! (All 6.2 miles of it) Today we walked for Faith and babies everywhere in hopes that one day there will be no such thing as preemies or babies with birth defects. We had a great time walking together to save babies. It was very moving and inspiring to see families and friends walking together for this cause. Many families were walking with their toddlers, kids, and teenagers who started out just like Faith! It really gave us hope! Thank you to everyone who walked with us and/or donated to the March of Dimes. Together team Fighting for Faith raised over $700!!!! Wooowhooo! We cannot wait until next year's walk when when Faith will be walking WITH us!!!!

Thanks again!

Brian and Jen

PS: Faith keeps pulling her tube!!!! It is happening almost everyday, which is really bad. Please pray that the tube stays in!

Day 83

As we see more and more babies go home on their due dates in the NICU, we are becoming restless as we know that we still have a long time before Faith will be able to come home. Back in Febraury we were just counting down the days until May. Now that May is approaching, it seems like there is not an end in sight. Someone told me this week that we always want to be on chapter 7, when God has us on chapter 2. (Thanks Marcella!) When I told this to Brian he said, "chapter 2 has been a really long chapter!!!!" :) Nevertheless our little girl is surviving.

She keeps pulling out her vent tube (we figured out she's not using her hands to do it, but she trashes her head against the mattress which pulls it out). Every time the tube goes in and out it creates more scar tissue. Brian has been spending the night (not sleeping!) next to Faith to make sure the tube stays in. You can tell she just hates the tube- it is very uncomfortable!
The eye Doctor that did Faith's last eye surgery examined her a few days ago. He is not confident that she needs surgery right now- he wants to wait another week to see if the blood vessels keep growing. This means more time on the ventilator! Ugh!
So right now we are just waiting- it is a little frustrating because we are "on hold" -meaning no progress is being made (nor can be made when she is on the vent).
Please pray that the tubes will stay in!
Brian and Jen

We are starting to feel like Job!

Lately when it rains, it pours (which is literally happening in Colorado right now!) and today was another monsoon. Faith had an eye exam today- she needs another eye surgery. :( Lately we've been feeling like our prayers have gone unanswered but as you know His ways our not our ways- perhaps this is the reason why Faith has been staying on the ventilator. If she did get off of it last week, she would have to be reintubated for the surgery again- so maybe this is just saving us more heartbreak. It is very unfortunate Faith has to go through another surgery- but we'll tell you what- she's one tough cookie. The plan is to have the surgery within the next week. They are also keeping her on the vent for another week- if she pulls her tube out the tube is going right back in. Her airways need time to heal. It is sad seeing her on the ventilator- as she is getting bigger she looks so uncomfortable. They are giving her Tylenol and morphine when she needs it. Thank you for continue to lift up Faith in prayer- as the song goes we are going to "praise Him in this storm."
Brian and Jen

PS: "Don't tell God how big your storm is, tell the storm how BIG your God is." (Thanks Aunt Susan!)

Another dip in the rollercoaster

We received another middle of the night phone call. Faith is back on the ventilator. Her nurse held her for hours last night trying to calm her down- she just couldn't do it anymore. She was working too hard to breathe. They put her on the vent to avoid what happened last week. This is beginning to wear on us- she was doing so good until she had to have the eye surgery. Today she is 37 weeks old- we have never seen a baby in the NICU that has been on the vent this long- please, please pray that her airways will heal- we do not want Faith to have to go through another surgery!

You can do it Faith!!!

Isn't she a cutie? Faith's nurse took this picture of her yesterday after her bath- untubed and all! Weeeeeeeell- she is starting to make us nervous. Late this afternoon her heart rate and oxygen levels began to dip- if it happens more she will be back on the ventilator. At that point we are stuck. Her problem is her swollen airways- the ventilator increases the swelling, but she needs it to breathe. We are going to stay positive and believe that she won't need to go back on the vent. Please pray that Faith can get through the night breathing on her own.
Breathe Faith Breathe!!!!!
Brian and Jen :)

Happy 12 Weeks Faith!!

Well, one thing we are learning about this girl is that she always changes plans. Early this morning Faith pulled out her ventilator tube (yes, again). Since re-intubating her causes more swelling, they decided to try her in an oxygen hood. This is the equivalent of a nasal cannula. It is like a big plastic bubble that surrounds her head. It provides humidity, which will help her breathe better than just the nasal cannula (as it is very dry here in Colorado). It is apparent that she is having a hard time breathing, which they are treating with nebulizers, etc. We were a little nervous when we saw her off of the vent, but are staying positive. It would be a miracle if Faith could stay off of the vent for good!

The doctors are concerned that Faith is not growing up to par (compared to other babies born at her gestation). She was already a small baby for her gestation when she was born (she was about the size of a 23 weeker) but now she is not keeping up with the "norm" of babies born at her birth weight- they call this the growth curve. It is important that she keep up because of brain development. They have upped the calories in her fortified breast milk to compensate for her slow weight gain.

Well that's it for now- very interesting couple of days! Let's pray that this is a turning point for Faith.
Thanks!
Brian and Jen

Faith is a Fighter!

"The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; His understanding is unsearchable. He gives power to the faint, and to Him who has no might He increases strength. Even youths shall faint and be weary,and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary;they shall walk and not faint. "

(Isaiah 40:27-31)

This little girl continues to amaze us. Her will to live is inspiring. She has been through so much, and she has come so close to death, and yet, she fights back. She truly is Faith the fighter.

Yesterday a specialist came to look at Faith's airways to see what was not allowing her to breathe. He found scar tissue and inflammation. He also found something he described as a "shelf" that looks like a canker sore- in her tiny throat it is getting in the way of her breathing (much like if you had something stuck in a straw and tried to suck through it). Fortunately, he did not think the problem is severe enough to require surgery at this point. The plan is to stop the steroids right now and give her another week on the ventilator to rest and recoup. On Wednesday they will resume steroids and on Friday they will try her back on CPAP. If this is unsuccessful then surgery will be required. We feel very comfortable with this plan- we were a little nervous about them trying the CPAP earlier than next week because of what we went through a few days ago. We need to pray that Faith does not pull the tube out herself- the more times the tubes goes in and out the more it irritates her airways and increases her swelling.

Faith received another blood transfusion yesterday. Giving blood to babies as old as Faith is a catch 22. A few weeks ago her body began to make its own red blood cells, now that she was given blood, that process has to start over again. Increasing iron intake is the more preferred route rather than a transfusion, because then the baby would not have to start the process of creating red blood cells again (they can this reticking). Because of Faith's extreme trauma the past few days her hematocirt is very low. She looked very pale (beyond blue, almost grayish) before she was transfused.

We know that that recent events have delayed Faith's homecoming substantially. At this point it is not about Faith coming home, it is about her getting better.

Thanks for keeping Faith in your prayers during this critical time.
Brian and Jen

Faith needs prayer

Yesterday was the most terrifying day of our lives. We thought we were going to lose our precious girl several times. She had to be resuscitated at least 10 times. Each time her heart rate would flatlined and she would turn gray. She is back on the ventilator. It is funny how your priorities change- before he despised the ventilator, now that it is keeping her alive, we love it. Faith's lungs look ok, she has something blocking her airways. Her airways are swollen, but the doctors think there is a larger problem that was causing her such extreme breathing difficulties. One idea is that there is something blocking her airways, like a growth or something that became inflamed form the vent tubes. If this is the case they will "zap" whatever it is with a laser. Another idea is that there is a narrowing in her airways. If this is the case she will need a tracheotomy. They are going to do a procedure today where they stick a camera down her airways to see what is going on. We really appreciate all of your prayers during this time. We are on our knees and pleading for the life of our precious miracle. Or as Brian said, this is just one more chapter in her book titled, "Why my name is Faith."
Brian and Jen :)

Please pray for Faith today!

Faith did not have a very good night. We received another middle of the night phone call. She is having a very difficult time breathing. They increased her CPAP settings and are giving her nebulizer treatments. They also began administering Decadron again. If you remember we were terrified of this steroid a month ago- now we can see that she really needs it. It will decrease the swelling and help her lungs to mature more. Please continue to pray for little Faith today.
Brian and Jen

Yikes!

Once again we got a picture of Faith "untubed" when they were changing her mask. Her nares are stretched out because of the prongs from the CPAP tubes.

Faith gave us a little scare this afternoon. Her heart rate and oxygen saturation levels plummeted. She was choking on her own spit. Fortunately the respiratory therapist was close by and quickly suctioned her. Because she was on the vent she has a lot of secretions. Her airways are very swollen, thus she has a lot of "junk" in there. This is evident when Faith breathes very heavy (you can hear her struggle to breathe like someone running up a mountain). Please pray that the swelling will go down. We are pretty worried now- but know deep down that God has great plans for this girl. She is truly teaching us to have ultimate Faith!

Brian and Jen :)

CPAP AT LAST!!!

Well she did, and on her own terms! After a couple of difficult days, Faith took things into her own hands (literally) and extubated herself by pulling out her ventilator tube. The doctors said that if she ended up doing this they'd try her on CPAP- sure enough she did it! She is currently on a CPAP of 5, which is a mid to low setting (last time she started out on a CPAP of 7). She is doing great on it- you can visibly see her struggle to breathe , but she is breathing. Faith has been in the NICU for the past 72 days. Today, gestationally she is 36 weeks! She is just about 4 pounds now- almost tripling her birth weight. The goal this week is to get her off the CPAP and onto the cannula- then we will be back to where we were before the surgery.
Thanks for praying for Faith- it really helped today!
Brian and Jen

Deja vu!

This truly is like Deja Vu from a month ago. Faith needs to come off of the vent, however she might have a possible infection (such as pneumonia) that is preventing her from making progress. We are waiting to see if anything grows in her cultures to see if she has an infection. Meanwhile, they are trying to ween her vent settings (which isn't going too well.) If she does not make progress they will give her another course of the steroids. This is a worst case scenario- if Faith can come off the vent in the next day or so then there will be no need for the steroids. Thank you for praying for Faith this week- this really is a critical time.

In other news, Walk America is just 2 weeks away! Prematurity is the #1 cause of death in infants. We have seen too many families lose their babies, and others painfully go through what we are going through. It's time to day enough is enough! We are walking for Faith and premature infants everywhere on Saturday, April 28th in downtown Denver. If you do not live in Denver you can still walk- all across of America cities are hosting walks. (Thank you for walking in Virgina Sara and Daryl!!!!!) If you would like to join us in the fight against prematurity please go to:

http://www.walkamerica.org/384382

We dream of the day when all babies are given a chance to fully develop before birth. The March of Dimes is committed to this dream. Ten years ago babies like Faith would go blind because the technology to save her eyesight did not exist. If you cannot walk you can still help by sponsoring our team, and cheering us on on walk day!

Thanks so much for your support and go team Fighting for Faith!
Brian and Jen :)

PS: Thank you to all who participated in the beautiful baby shower yesterday. It truly was a labor of love and such a memorable time. We are truly blessed by all of your support, friendship and generosity. We cannot wait until Faith can come home and enjoy all of her gifts- she truly is one blessed little girl!

Still on Vent

Well Faith is still on the ventilator. Every time they try to turn down her settings she does not respond well. They are giving her a little more time to recover from the surgery then they will try actively pushing her. If she still does not budge, they might consider giving her a very small dose of the steroid Decadron (which she was on before). This is worst case scenario, as they don't want to give it to her nor do we want to see her on them again. Please continue to pray that Faith gets off the Ventilator soon, as every hour she is on it her lungs become more damaged.
Thanks for keeping her in your prayers,
Brian and Jen

Bad news

Well just 10 minutes after that last post the NICU called- she is back on the ventilator. They said she is just too tired and cannot breathe on her own. They are going to keep her on the vent until she regains strength.

Yay for Faith!

Well she did it! Faith made it through her eye surgery today. It was very nerve wrecking for us- seeing her on the surgery table brought back some scary memories of Faith’s first few weeks. The surgery went well. The doctor said that this does not mean Faith will not lose her vision but it does decrease the chance. She is going to be closely monitored for the next year (she will visit the eye doctor every two weeks) to make sure the blood vessels in her eye are growing normally. The post op was also nerve wrecking- Faith was having difficulty weaning off of the ventilator. We were so scared that this was going to be a repeat of what we went through to get her off a few weeks ago But to our surprise a little over an hour ago they put her back on the nasal cannula! She is breathing heavier than she was pre-op but that is to be expected. So that is where everything stands now. Please pray that Faith will stay strong and keep breathing on her own. We truly appreciate all of your prayers today- we truly felt them!
Brian and Jen :)

Today's good news is that Faith is still on nasal cannula! Today's bad news is that she will have to be on the ventilator for her eye surgery on Friday. After the surgery they are going to try her back on the cannula, however they have told us that when preemies like Faith have chronic lung disease, it is hard for them to breathe as they recovery from surgery. In that case she will go back on CPAP. So we decided to snap lots of pictures of Faith without all of that gear! So that is the big prayer request this week. You may have noticed the red spot on Faith's cheek in some of her pictures. In the beginning we thought it was a scar, as it turns out it is a Hemangioma. A Hemangioma is an abnormal build up of blood vessels below the skin- and are very common in preemies. We've been told that they go through a rapid growth phase (which we have noticed in Faith's) and usually disappear in about 4-6 years. It really is the least of our worries- in fact it gives her a little character! (not like she needs anymore!) Well thank you for praying for Faith- the next few days are critical.

Brian and Jen

Riding the NICU Rollercoaster

They have always told us the NICU is like a roller coaster. Today we went for another ride. We were very excited this morning when we learned that Faith is off of CPAP and on Nasal Cannula. This was a huge answer to prayer. Faith is working extra hard now- you can hear her struggle to breathe. The day was very positive until Faith received her eye exam. We received the worst possible news- Faith was level 3 ROP (Retinopathy of Prematurity) with Plus Disease. ROP is an eye disease of the eye that results when there is abnormal growth of blood vessels. If left untreated this stage of ROP can quickly lead to blindness (this is how Stevie Wonder became blind). Fortunately the doctors caught Faith's ROP and it will be treated with laser eye surgery. There are draw backs to the surgery including loss of peripheral vision. The surgery may require general anaesthesia, which would mean that Faith would have to be re-intubated on the ventilator and would have to be weened off again. They are going to try to sedate Faith without the general anaesthesia to prevent this. The surgery is scheduled for Friday morning.
In Faith's 9 weeks of life she has beaten he odds and overcome tremendous challenges. We believe that this is just another testimony Faith will have!!
Thank you for keeping Faith in your prayers this week!
Brian and Jen

Another Milestone Reached by Faith!

Faith is out of her isolette (aka incubator) and into a crib! She's a big girl now! Once babies are more than 1700 grams (3 pounds, 12 ounces) they can be in cribs. Everything looks more normal and cheerful now that she is in her hospital crib. Faith is set to receive her immunizations tonight- a few sticks here and there are now big deal anymore compared to whats she's been through! We've been told that she may seem a little out of it the next few days.

Thanks for checking in on Faith today!

Brian and Jen :)

Faith's First Easter!

Faith is 9 weeks old today! She had a very "hoppy" Easter- she cuddled next to her many stuffed animal bunnies the Easter bunny brought her. She is on a CPAP of 4! This means she's receiving a very minmal amount of the CPAP- so minimal that they might try to take her off by the end of next week! This next week is a big one for Faith- tomorrow she is receiving her immunizations (which we've been told is very rough on these little ones) and she will have an eye exam later on this week. She is receiving "bolis feeds" meaning her feeds are more concentrated- she used to get fed over four hours now she is getting fed the same amount over 2 hours. This new feeding schedule is to prepare her for more infant like feedings. Please continue keep Faith in your prayers this week- this could be a turning point for her- and one step closer to coming home!!!

Happy Easter!
Brian and Jen :)

Another good day for Faith

Faith is down to a CPAP level of 5! She is handling it ok- she has been de-sating a lot, but that is not unusual for Faith. If she continues to do well they might ween her down another level this weekend! Faith is growing slowly but surely- she is 3 pounds 9 ounces. She is still receiving the diuretic, which has been affecting her weight gain (but now we know she is gaining real weight, not water weight). Other than that no new news to report!

Thanks for keeping Faith in your prayers!

Brian and Jen :)

Above: From all of these pictures you'd think that Faith is mellow girl but in reality she's as feisty as ever!

Below: Faith having some Daddy time.

Faith is 34 Weeks Today!

Awww look at that cutie pie! She's just as snug as a bug in a rug! Faith's adjusted gestational age is now 34 weeks. In six weeks she could potentially come home! She is just hanging in there- she's making tiny steps in weening off her current level of CPAP. For NICU standards, level 6 is still pretty high (meaning she is still dependent on it). Her lungs need to start pumpin' so she can keep weening. That is our big prayer request this week. Other than that Faith is just a growing girl! (GROW FAITH GROW!) :)
Thanks for checking in today!
Brian and Jen
PS: Sorry this picture is so blurry- in order for us to catch a shot of her lovely eyes we had to turn off the flash.

This is a rare look at Faith- while they were changing her CPAP tubes yesterday, Brian got a quick shot of Faith untubed! We tried to get one with her eyes open but every time she sees the flash she closes her eyes (smart girl!)

Faith did not have a very good day today. She is requiring a lot of oxygen, and she "de-sated" quite a bit. The doctors are concerned that she is retaining fluid, which is getting in the way of her breathing. They are going to give her a diuretic which will help her lungs. The goal is that she will be able to ween down a level on her CPAP by Wednesday.

That's all for today! Thanks for checking in on Faith today!

Brian and Jen :)

Happy 8 Weeks Faith!

It's hard to believe that just 8 weeks ago our little miracle was born. Faith is doing great- she is up to 3 pounds 7 ounces! Five more ounces to go and she is out of her isolette and into a crib.

This has been a hard week in the NICU. The family in the room next to us lost their baby (who was born at 27 weeks) yesteray. When you spend hours in the NICU like we do, you really get to know other families- this has been devastating for everyone in the NICU. Please pray for the Davis family as they cope with the loss of baby Maya.
We continue to count our blessings with little Faith- life is truly a gift.
Thank you for keeping others in your prayers,
Brian and Jen