Tuesday, July 31, 2007

Groundhog's Day Part 2

For those of you that have been following the blog for a while you know how things rarely go our way- so no, Faith did not come home today. We'll give it another shot tomorrow!!!

Monday, July 30, 2007

Alright...one more day isn't that bad!

When you have been in the NICU for 176 days, waiting one more day is not a huge deal. No, Faith did not come home today. This may actually be a blessing in disguise as we are still scrambling to get ready for her. Her equipment is still being delivered and we are getting the kinks worked out. Today was a special day though. We were very emotionally because we thought today meant saying goodbye to the people who have been our family for the past six months. We were a little said because none of Faith's primary nurses were on today. A little before noon Faith's doctor wanted to meet with us in the conference room to discuss discharge. We walked in and to our surprise our primary nurses were there- they threw us a "going home" party! It was soooooo special and soooo sweet of them to come to the hospital and their day off to share this special day with us. :) We have spent more time with the nurses, doctors, RT's then our co-workers or families! These people have taking Faith under their wing and treated her as though she were their own. We are very sad to leave, but eager to begin this new chapter in our lives (plus Faith has so many doctor appointments at the hospital we will be frequent visitors! But only is it is as alumni not patients!
Alright well let's try again tomorrow!
Thanks so much!
Brian and Jen

Sunday, July 29, 2007

A REAL 25 weeker!

Above: Faith had her car seat trial today. Before leaving the NICU babies have to sit in their car seats for 90 minutes without having major issues. Despite her content look in the picture Faith isn't very fond of car seats (we'll see if she changes her mind tomorrow when she learns that they can take you places!) Below; Faith sleeps away from the NICU!

Below: This is our home set up. All of the equipment you see is the equipment Faith will use at home. We are learning to adjust to this equipment. The humidity/oxygen compressor is the loudest thing we have ever heard- it sounds like an idling motorcycle...oh and don't get us started on the suction machine- that's even louder!(Trust us, once you come to visit Faith you will know what we mean!)

Today marks Faith's 25th week of life. She has been in the NICU for as long as she was in the womb. And we are thrilled to announce that she will spend the rest of her weeks at home! Tomorrow morning we will find out if Faith can come home that day or if we need to wait a few more days. In a way, the suspense is exciting- not knowing is a little fun! If Faith does not end up coming home tomorrow it is no biggie- we still have a lot to do to get ready for her. We had a very busy weekend. Last night we "roomed in" meaning we stayed in a separate room away from the unit with just us and Faith! The night took on special significance; The NICU is in the middle of the mother baby floor. For six months we have watched happy moms and dads wheel their babies down the halls to their rooms (which are really nice we might add!) We often look into these rooms and see the new families sleeping next to their babies. We never had this experience. When we had Faith we had to stay on a different floor (that was no set up for moms who just had babies) and of course did not get to sleep next to our little girl. Last night we got a private room in the mom baby section, and yes we got the wheel Faith down the hall into our room!!!!!! It was really special. When we put her in her crib we both said, "she looks like a baby!" Like any new parents with a baby our night was sleepless. Faith's monitors go off a lot and she needs to be suctioned at least once every half hour. Nevertheless we wouldn' t trade our night (and nights to come) with Faith for the world. Tomorrow just might be another significant day. February 8th was one of the worst days of our life. It was the day we left the hospital without our baby. We came home to an empty house. We felt empty. Everyday we walk into the hospital we seem to walk in just as a new mom and her baby are escorted out to their car to go home. T0morrow, maybe tomorrow it will be our turn.

Now THIS is a big week (the BIGGEST and THE BEST!)

Brian and Jen :)

Wednesday, July 25, 2007

The Countdown is ON! (well kinda sorta!)

Doesn't she look healthy to you? Ever since the trach she looks sooooooo much better- she can finally breathe! (Thanks for the cute outfit cousin Michelle!)

Above: I Love reading with my Daddy! Below: Phew! All of this playing really tires me out!

Alright, the plan is still on! This week we've been very busy getting everything in line for Faith to come home. This week her medical equipment will be delivered to the house (gulp) and hospital. We have been working closely with a support team to work on the medicaid stuff- where it stands right now everything looks good. On Monday morning a rep. from the county will call us and tell us if Faith can go home (Yes, THAT day!) or if we have a wait a few more days for all of the paper work to go through. So we are not talking weeks, but days! It is unbelievable to think that at this time next week Faith could be home! It really seems like a dream- or a mirage that might quickly disappear, but this is the real deal! Alright well we just need to get our ducks in a row then it is home sweet home!

Yay, Faith, Yay!!!!!!!

Brian and Jen :)

Monday, July 23, 2007

Ok..here we go again (but it's NOT Faith this time!)

Alright we are beginning to enter the world of health care vs. special needs children. In our care conference last week, Faith's doctors think it is in the best interest for Faith if she has two adults to supervise her at all times, one of those adults preferably being a nurse. Faith needs constant care so a nurse is a must. We just learned that our insurance does not provide home care nursing (gulp!) however, because of Faith's disabilities she qualifies for a Medicaid program that would pay her health costs PLUS home nurse care. The problem is there is a year to 2 year waiting list for this program. Because Faith is still in the hospital her application will be expedited and we will be at the top of the list. If Faith leaves the hospital before all of this takes place, we loose our spot on the waiting list. SO basically we have waited 6 months to take Faith home and now that she is medically stable it this bureaucratic stuff that will keep her there! AHHHHH! The good news is this should be cleared up in the next week or so- the bad news is next Monday is pretty unrealistic. We have waited soooo long a few extra days or another week will not hurt- however school start in a few weeks and Brian and I have to go back to teaching, so another day in the hospital is another day we can't be with Faith at home. So once again we are asking for a miracle! Please pray that all of the paper work goes through and we can get on this list!!!!!
Alright, well thanks so much!!!!!
Brian and Jen
PS: Faith is doing great! One little episode over the weekend but it was not a huge deal- nothing a trach change didn't fix- speaking of which Brian and I have both changed trachs now! It wasn't as scary as we thought it would be!

Friday, July 20, 2007

Dare we say it..the "h" word returns!

Alright...here it goes; We have a date. This time it is not a date for a surgery or a procedure. On Monday, July 30th our little girl is coming home!!!!!!!!!!! Can you believe it?! Neither can we! We've been teased so many times- we'll believe it when she's in the car seat and we are pulling into the driveway. But this time is different than the others- this time it just feels right. Brian and I have been doing 100% of Faith's care this week- we know the ends and outs of her care and feel comfortable doing it (the only thing we have left to learn in a trach change which will happen this weekend). From a clinical standpoint Faith is ready to come home. Yes, she will have her moments (like last Wednesday) but that stuff is going to happen regardless if she is in the hospital or not.We had a care conference last night and all of Faith's primary caregivers agree; the best place for Faith right now is home. Yes we will leave the comfort of 24 hour care and consult, but we are Faith's parents and it is time for us to take care of her. This next week will be a transition for us; we will get our home ready (and as germ free as possible!), and prepare for taking care of our girl 24/7.

The day we found out Faith was getting a tracheostomty I got in my car and turned on the radio. The song was Third Day's "tunnel" the chorus rang: "There's a light at the end of this tunnel, shinning bright at the end of this tunnel for you." At the time it felt like a sign but it was hard to imagine an end to all of the drama- especially with a tracheostomy- well we think we see the light, and it is not a flashlight- it'sa light shining like the sun!
Many times we've ending our posts saying, "This is a big week for Faith..." well...this is a big week for our family- we are getting ready to be whole!

Lot's of Love,
Brian and Jen :)

PS: Faith is NOT sick- nothing has grown in her cultures- and in fact for the first time in five months she tested negative for MRSA (the staph infection that sent us into isolation!) WooooWHOO!)

Above: "I can See!
For the first time in almost 6 months Faith seemed to focus on something (her mobile). We were amazed that she actually watched it! Her vision might be better than we think!!!! She still avoids eye contact with people-but that could just be a "hospital psychosis thing"- so we are holding onto this picture!!!!! Below: Faith rests between her morning occupational therapy exercises.

Wednesday, July 18, 2007

The Mysterious Trach!

I walked into the NICU today and Faith was under respiratory distress-r pretty much old school Faith. After an emergency trach change she looked a lot better. Unlocking the mystery of the trach was the name of the game today. Was she plugged? Was the trach the right size? Was it a lung issues? Is she sick? After countless x-rays and blood tests the ENT who did her tracheotomy came and checked her out. He upgraded her to a larger trach, and cauterized a growth that was growing around her trach site. Once this took place, she looked like she felt better. She still is acting a little "off" so we are thinking she might be sick- it will take a few days before we know for sure (we are waiting for something to grow in her cultures) so we don't really know what this little one is doing! All we know is the minute we start talking about going home something else comes up! Oh well- we will get there eventually- perhaps it's time to start enrolling in St. Joseph Preschool (just kidding!) She'll get there! In other news Faith had her eye exam yesterday- same old story- which makes since because Faith is still not looking at us, or at any other objects for that matter. At her next exam (which will hopefully be an outpatient exam) she will be fitted for glasses (for her right eye, which they are all hoping has some vision with the correction). So just when we were enjoying being able to see her face- we are going to trade oxygen tubing for plastic frames- oh well!
Thanks for stopping by to check on our little angel!
Brian and Jen

Monday, July 16, 2007

Faith has been in the NICU for almost as long as she was in the womb! Yesterday marked Faith's 23rd week of life. Two more weeks and she'll REALLY be a 25 weeker! Yesterday also marked 2 months after her due date- which is now her corrected age. She is just about 8 pounds and doing well! We are starting to become more comfortable with taking care of Faith- it has been like learning to take care of our baby all over again. Last weekend we survived watching the first trach change- this week one of us will be put to the test (which we are extremely nervous about!). On a positive note we have noticed a huge change in Faith since she got her trach- for one thing she sleeps now! There are times when we wonder if she is sick or if something is wrong because she sleeps so much, but then we realize that this what babies are supposed to do! Before her surgery she was very irritable, fussy, and hard to settle. She never slept more than 30 minutes at one time- now she sleeps most of the day. It is very apparent that she doesn't work so hard to breathe anymore- which is so nice to see. When her trach is free of secretions she breathes much easier and looks very peaceful!
So that's where thing stand now;
Faith is doing her part, now we just need to do ours!
Thanks for stopping by today!
Brian and Jen

PS: We don't want to be too premature (like we were 2 months ago) but the "h" word has been mentioned lately- and guess what- they are talking about OUR baby!

Wednesday, July 11, 2007

Phew! This is hard work!

Boy, having a baby with a trach and a g-tube is A LOT of work! First of all there is constant worry- does she have too many secretions that ismaking it difficult for her to breathe? If there a plug blocking her airway? Does she have enough humidity? Too much? Because Faith cannot make noise (except from the gurgling sound that comes from her trach) you always have to have your eye on her (or one eye on her the other on the monitors!) The enemy is a plug. We experienced the VERY bad side of a plug last weekend when it would not pass and she was very close to not coming back. Today she had some little plugs- which scared us a little but it was nothing that saline, suctioning, and increased humidity couldn't fix. The g-tube is another thing. I don't think we realized the complexity of the tube. Because of the tube Faith can't burp- so she burbs out of her button. This means we need to "vent" her stomach using a syringe. needless to say we were dumped with Faith's undigested stomach contents many times today. There is a lot to handle! Fortunately when Faith come home we will have a nurse here most of the week- I never really understood why kids with trachs get home nursing until today- you just can't do it alone! Other than that Faith is doing alright- now it's us you have to pray for! ;) We'll get there- it hasn't even been a week yet so adjusting to this new life is going to take some time.

Thanks for checking in today!

Brian and Jen

Monday, July 9, 2007

Does this look like a girl who just had surgery? We don't think so either! Faith has recovered miraculously well- it truly is amazing. She is OFF of CPAP and on oxygen (which is the tube going to her trach in the picture). Now don't get us wrong- she still has her moments but NOTHING like this past weekend. Now we are adjusting to "trach life." As we anticipated it is hard not being able to hear her. It's like someone pushed the mute button on her- it looks like she cries but nothing comes out- not even a peep. Meanwhile her trach is full of noise! Since the tube bypasses her airway and goes straight to her lungs we can hear her body working- we can also tell when she needs a good suctioning (which we are pros at now! What a difference a day makes!) We are still nervous about the whole trach care thing- but we will get it! We feel likes things might be on the up and up!
Thanks for all of your prayers- we have such a amazing friends and family- there's no way we could have gone through all of this without you!
Brian and Jen :)

Sunday, July 8, 2007

What's the best thing about having a baby with a trach? Well, after 5 months were are finally able to see our baby's face! We just can't get enough of her- kissing her cheeks without tubes and tape is such a blessing!Alright, well onto what you all want to know:
Faith is doing MUCH, MUCH, MUCH better! She is off of the vent! (woooooowhoooo) and on CPAP (it is different from the nasal cpap she was on before- this just hooks to her trach.) We think what happend is that she was overloaded on meds- which made it difficult for her to breathe. Friday night Brian and I kept saying, "She's in pain! Give her more meds!" Well that was a catch 22 because it impaired her breathing. Faith still has little moments where she desats, but once she is suctioned she comes up quickly. There is even talk about taking her off of CPAP tonight! What a turn around!
Faith is also eating from her g-tube. During her g-tube and nissen surgery they found a hernia which she will need to have surgery on in a few months (of course, the poor girl just can't get a break can she?) We also learned that because of Faith's nissen (a tie to the stomach) she will never be able to throw up (so when she is a teenager it'll be a good excuse for her not to drink!) We never thought we'd get to the day when even throwing up is something not to take for granted (not really, huh? That might be a gift!)
Alright well enough rambling- thank you again for all of your prayers- we really felt them today- and they worked! Well we've got to go kiss our little angel's non-tubed cheeks once more!
Thanks again,
Brian and Jen

Saturday, July 7, 2007

Faith really needs prayer. She is not doing very well at all. She has flat lined (meaning her heart stopped) many times today. Her body is having a hard time adjusting to the foreign objects. We thought this was all going to stop once the trach was put in- we were not expecting such a rough recovery. She drops very fast and takes a while to be brought back.
Please keep her in your prayers tonight.

We don't have time to go into details but Faith made it through the surgery ok. As you can tell she is very swollen and having a difficult time managing the pain (she is on a lot of drugs but it is difficult for her to adjust to breathing from her neck). She is going to be on the ventilator for the weekend as she recoups. We will post more tonight.

Thanks for you prayers!

Thursday, July 5, 2007

The Big Day

Well it is here. Tomorrow is t-day (and g-day!) The whole thing seems very surreal. We really have a peace about it- Every single day this week Faith has had an episode- she really needs a stable airway and that is exactly what the trach will give her. Here are some thing we'd appreciate prayer for:
*For Faith to come off the ventilator quickly. She will need it for a few days, but we are praying that it will not be longer (the vent will hook up to her trach).
*For Faith not to be in pain- no doubt she will be heavily sedated and medicated- but you never really know how much pain a baby is in.
*The trach to stay in- the first week is critical. The trach will be sutured in to make a track- it is very important that Faith does not pull it (we all know HOW that goes- that's what got us here in the first place!) or it does not come out.
*Please pray for the surgeons tomorrow (they are a wonderful team from the Children's Hospital here in Denver). and that God will guide their hands.
*And finally please pray for us- it is pretty nerve wrecking in the waiting room. Please pray that God will calm our hearts and minds as we trust him with our little girl.
The surgery is at 3:30 tomorrow. We are going to be spending the night at the hospital, so we probably won't be able to update the blog until Saturday. We will try to keep in touch as best we can to let you all know how everything went.
Remember- this is another step closer to home! Once Faith is stable with the trach she will be homeward bound! :)
Brina and Jen

Wednesday, July 4, 2007

Faith's First Fourth!

Today was not only Faith's first Independence Day but her 150th day of life AND her official 5 month birthday! We thought we'd celebrate her life by sharing some recent pictures with you;

This picture (above) was totally unset up! During Faith's physical therapy session she played supermodel by resting her head on her arms- providing a perfect picture opportunity Moments later she fell asleep! (Below)


We are still waiting for that first "real" smile- but this will do for now! Did we mention Faith is 7 1/2 pounds now? WAY TO GO FAITH!

Tuesday, July 3, 2007


If there's one thing we are certain about Faith it is that she looooves music. She has a little cd player in her room that plays lullabies almost 24-7. Her favorite (yes, she has a favorite- she's a picky one!) has the song Kumbiya.

I remember singing that song as a girl scout. At the time I thought the song was silly, the words:"someones crying my Lord, Thank you God?" What in the world did that mean? As I rocked Faith to those words today, I finally realized what the song meant. In three days we will no longer be able to hear Faith cry (until her trach comes out which the ENT said will be at least a year because they don't take trachs out in the winter).

Faith has given us such a special gift; to appreciate life- every little bit of it- even the crying. I know many people have questioned why God has not healed her- he could have certainly healed her airway by now. But if we had not gone through what we have- we would not be who we are today. Today we are stronger, have MORE Faith than we ever thought possible, and can truly say we appreciate every rain drop that falls from the sky. We don't understand why Faith has had to endure what she has- but we know there is a perfect plan for her life- she has already changed so many peoples hearts and she is only 5 months old! To that we say; Kumbiya