Thursday, August 30, 2007

Football Faith

Since Faith was born on Super Bowl Sunday there has been a joke that she is just waiting for football season to begin. As it turns out she is just waiting for the Broncos to beat the Bills (sorry Brian!) in the season opener a week from Sunday, because the next day Faith will be coming home. :) Yes, it is true. Once again it is nothing short of a miracle. The staff at Children's have never seen a baby like Faith receive nursing care so fast. Today Faith's home care nurses were trained on the vent, and everything is being set up for her to come home on Monday, September 10th. This comes at a great time because two weeks later the hospital is moving to a new location (and now so are we)! We are working hard to become prepared so that this time Faith stays home- since it is that time of year again (football is in the air) I don't think we'll have a problem with it (where else is she going to watch the games?)
We'll keep you posted!
Brian and Jen :)
PS: If only Faith could be on a fantasy team! She'd be our first pick!

Saturday, August 25, 2007

The Waiting Game

Here's looking at you babe! (alright..I know we are cheesy...we are running on no sleep so we have an excuse!) Faith is vert attracted to light (this is why it she always looks at the camera).
Look at me! I am starting to hold my pacifier in my mouth all by myself! I am doing more big girl things everyday!

The posts are going to be pretty boring now (which maybe is a good thing- Faith has been a little too exciting lately) because we are just waiting. Waiting for nursing, waiting for Faith to ween a little on her vent settings, just waiting. Meanwhile waiting is not so bad because Faith seems to be taking off developmentally. We've noticed a big change in her this week. She is looking at things (YES, IT's TRUE!!!) Making occasional eye contact (EVEN BETTER!) and reacting positively to her environment (toys, sounds, play etc.) She has even started bringing her hands to her face! We still can't pick up a child development book because it makes us sick (we bought lots of them when during the pregnancy) , but Faith is proving that she is developing on her timeline which makes every little eye contact, every little reaction a priceless gift.
Well, tomorrow marks Faith's 200th day in the hospital. Never did we think when we were celebrating her 100th day we'd still be here (although it is a different "here") but nevertheless by the Grace of God we keep cruising along!
Thanks so much for your prayers, and support (and yes, please send out prayers for those nurses!)
Brian and Jen

Tuesday, August 21, 2007

Quick Update

Sorry we have not updated in a few days. We are LITERALLY living at the hospital so it has been difficult to find time to blog. The good news is the home care nursing is coming together nicely. We have a few wonderful nurses already lined up, and few more sifts to fill. Everyone at the hospital is surprised at how quickly this is coming together- to this we told them we've been in the hospital for almost 7 months we aren't going to let something like this hold us back!! We are also working to get Faith's neighbor (the little guy we mentioned last post) set up as well. It would be very unfair for us to go home first, when he has waited so long! So please keep him in your prayers too! Well thanks so much- we will try to post again in the next few days.
Brian and Jen

Saturday, August 18, 2007

Umbrella?That won't do... it's been a hurricane here! Ok..don't worry- not with Faith, she is doing good. It's us that's been a mess! The past few days have been the craziest days I think we've had all year; Jen went to the hospital (and will need her gallbladder out asap), BOTH dogs got sick and had multiple midnight trips to the ER vet, we went back to work for the school year (teaching)....and all the while Faith was moved up to the floor, which has meant that one of us has had to be there at all times. AHHHHH!!!! Ok..I think we can finally breathe (but we night need a few puffs from Faith's ventillator. The good news is Faith is stable (she might be the most stable member of our family right now)! She was moved out of the PICU and onto the regular floor. She is in a room all by herself, with a nurse to patient ratio of 1:4 which means we are taking turns spending the night at the hospital. Having Faith in the hospital for 6 months was grueling...but we were not spending the night every night so at least we got our sleep- this has been challenging to say the least! What we need for Faith to come home is more nurses. There is a little boy in the room next to Faith with a trach and on a vent. He has been there since has was born and he too is waiting for 24/7 home care nursing. He is 1 1/2 years old. This is why they have been using the "m" word (months) instead of weeks when it comes to Faith being discharged. We are doing everything we can to prevent that- we are putting adds in papers, hanging up flyers, etc.- Aanything for us to get Faith the care she needs. So that is our big prayer request. Faith is holding up her end of the deal- she is stable. Now we just need to hold up ours.
Please catch some z's for us this week!
Brian and Jen :)

Tuesday, August 14, 2007

I think I can...I think I can!

Look at me! I can hold my head up! We thought you'd might like a full body shot of Faith. Yes, her preemie pancake head is getting more pronounced (the flat head is a preemie thing!) but we still think she's a cutie!!! Although Faith is 6.5 months old, her adjusted age as of tomorrow is 3 months. She has come a long way. She holds her head up (it is pretty wobbly and she needs some support sometimes, but she can do it) and she smiles about once a day (although it is usually when she is gassy). We know Faith has been through a lot...and every baby develops on their own timeline but we already see some things about Faith that are red flags. She doesn't seem to interact with people. Despite how she looks like she is looking in pictures, she is yet to make eye contact with humans, or really look at objects. We have also noticed her left eye (the eye they think she is blind) wander more (as you can see in this picture). Nevertheless for a girl that gets poked and prodded everyday she is progressing. Her development is the big reason why we want her home. Although she was only home for 3 days we saw a small change in Faith during those days. In the hospital she just doesn't get the interaction that other babies get at home. We know she will get there. It will just take a little time. She truly is the little engine that could!
Thanks for your prayers!
Brian and Jen

Sunday, August 12, 2007

No news is good news, I guess! Faith just keeps on truckin'. The goal this week is to put Faith on a home vent to see how she does. We also want to get her out of the ICU and onto a regular floor. The anitbotics seems to be working and Faith is looking, and feeling much better. That's pretty much it!
Thanks for stopping by!
Brian and Jen

Friday, August 10, 2007

Above: This picture was taken a few days ago. Faith has a much happier look now. In fact today when I walked in and said, "Hi Faith" she smiled! This was the first time she has had a reactive smile! Below: Faith's room; It may not have butterflies, but it'll do for now.

Today Faith had another bronchoscopy which confirmed what we already knew; The reason Faith has not had the easiest time breathing is because of her tracheal malacia. We saw a video of the bronch which really helped- the bronchioles are supposed to be round like a straw. Faith's are oval- when she "clamps down" they become like a pinched straw and she cannot breathe. The ventilator stints open her bronchioles allowing air to flow. While her bronchioles will never become circular shaped, as she grows her airway will get bigger. So basically Faith will need a ventilator until her airway is big enough to allow air to pass through her tubes. We have been told that a few years growth is adequate. Since re-venting we have noticed a big change in Faith. She looks the best she has ever looked. She is much more relaxed. Before we thought she was just a really fussy baby. She would freak out at the smallest things- changing her diaper would set her off. Now we can change her diaper and she is content. She is finally able to breathe! I don't think anyone suspected that this would come to being supported by a ventilator 24/7 but hind sight is 20/20. So the goal this week is to get Faith out of the ICU and up to a main floor. Her vent settings need to come down, and her blood gases need to be stable then we will be out of the "critical" zone.
Well thanks again everyone! Faith sure has a big family!
Brian and Jen

Wednesday, August 8, 2007

Is there even an umbrella big enough for this?

Ok where to start. Well we finally know what is happening with Faith. Basically it is a bunch of things. #1 she has pneumonia. She is also MRSA positive again, which could be linked to the pneumonia #2 there is some other type of staph growing in her cultures that is yet to be identified #3 She has tracheal malacia, which means her trachea is floppy and her lings aren't receiving adequate air. #4 She has bad lungs (also know as chronic lung disease that stims from her being so premature and on a ventilator for a long time.) A team of pulmonologists met with us today and basically said that Faith will need to be on a ventilator for a long time (anywhere from a year to a couple of years). She just can't do it on her own. While she does take breaths on her own, she just works too hard to do it all by herself. She needs help. SO now we have entered a whole new world. The world of 24/7 ventilation is a serious thing. The docs said they will not let us go home until we have a nurse with us 24/7. This is what could take a long time. They basically told us Faith will be in the hospital for the next few months. I know, it's crazy. Sometimes this feels like a bad joke someone is playing on us- can it get any worse? Well...I guess it can because we are very blessed to have Faith. We have seen other parents lose their babies and know that they would give anything to trade places with us. Faith seems to be doing better. She is on heavy doses of antibiotics right now- so heavy she had to have a pic line placed today. Pics lines are tubes that are inserted through a vein and go directly into larger veins in her chest. On top of that she has an IV in her head and foot. She has been poked so many times everyone who tries to start an IV in her has a very hard time because her skin is so tough and her veins just blow. It can take a few hours just to get one in!
Alright well that's where things stand now. Thanks so much for all of your prayers- we REALLY need them!
Brian and Jen

Monday, August 6, 2007


One of the things that brings comfort in her musical aquairum. She had one in the NICU that she just loved os we got her one for home. Aren't the little hospital gowns cute? They are like "big people" gowns (with open backs) but they are so tiny.
As you can see, Faith is just not herself. She is pretty puffy, and still having a difficult time breathing. Even on the vent you can see her retracting. There is evidence that there is something growing in the culture- we will have to wait another day or so for it to be identified. She seems to be doing better today than yesterday, but that is not saying a whole lot! We are adjusting to life from the NICU to the PICU. We felt so at home in the NICU, the PICU is pretty intimidating! No word yet on how long we can expect this hospital stay or what the course of action is. RIght now the goal is the make Faith comfortable, keep her on heavy doses of antibiotics, and well, just keep her alive! Yesterday in the ER Faith's doctor who did her tracheostomy came and did another bronch. He found some tracheomalacia which basically means she has a floppy trachea, which could explain her breathing difficulties, even with a trach. Many kids with this type of problem require long term ventilation. The good news is kids can be on ventilators at home. They can also be on CPAP, which is not as damaging as the vent. Well we are praying it won't come to that, but we just want what's best for Faith. Well thanks again everyone!
Brian and Jen

Sunday, August 5, 2007

Another set back. :(

Well..Faith is in the hospital again. She is in the Pediatric Intensive Care unit at Children's. She had a very hard weekend and this morning she woke up and was really struggling to breathe. We brought her to the ER and she was admitted. She is also on a ventilator. :( We've been told she might need the vent long term. We will update more soon.
Thank you for keeping Faith in your prayers,
Brian and Jen

Saturday, August 4, 2007

NOW we're a family!

It's official- we are now a family all under one roof! The dogs got to meet their new sister last night. They came in decorated in "It's a Girl!" ribbons and were VERY calm (I know can you believe it?) They are very gentle around Faith- they seem to sense her fragility. They have reacted the exact opposite we thought they would. Elway is VERY interested in her, we thought he'd be jealous but that isn't the case. He gets excited whenever she wakes up from a nap and knows when she needs help. Last night before the monitors went off he came up on the bed and started sniffing at her- she needed a neb treatment and to be suctioned. He's more reliable than our pulseox (monitor)! Buffalo (who is the "baby") has been very jealous and pretty much ignores her. He's currently pouting on the floor. When it looks like we are not looking we notice that checks Faith out, but the moment he sees us watching him he goes back to ignoring her!Faith doesn't seem to notice the dogs which of course is probably a result of her poor vision. In other news Faith officially turned 6 months old today!!!! Yesterday we took her to the pediatrician and she weighed in at 9 pounds 6 ounces! She is doing pretty good. We have had some pretty rough nights (apparently Faith does not sleep ) but have been episode free for more than 24 hours! Yesterday Faith's primary nurse came for her first shift. She is WONDERFUL. She has more than 25 years of experience with babies like Faith and has really helped us out. Faith qualifies for 24/7 nurse care. The problem is there isn't enough nurses to fill this need. They are working on it and we will be getting more help soon. For now Kimberley (our primary nurse) will be here three days a week for 12-16 hour shifts. We know it sounds like we have it easy but believe me- Faith is full time job for two people. We have not been able to sit down since she has come home. Nevertheless we cannot complain because we have our baby girl home! Well thanks so much for everything!
Brian and Jen

Thursday, August 2, 2007

Here we go again.

Alright. You all know how it goes. Here we go again. Today we had to call 911 and Faith was rushed to the Children's hospital. We were there earlier today-but not in the er. Faith's ganuloma around her g-tube was getting really big so our docs at St. Joe's set up an appointment for us to go today and get things checked out. We were nervous about Faith being off of her heated mist because she could dry out. Everything went well at the appointment and we went back to our house. Shortly after two respiratory therapist from our medical supply company came to check on us. Well, right about then Faith starts turning blue- we turned her up to 6 liters of oxygen (for those of you who know oxygen that is a lot!) and her sats continued to drop. So we did a trach change, which usually solves the problem. This time the trach change did not help and Faith continued to drop. So we called 911 and Faith was rushed via ambulance to Childrens. Once she got to Childrens she was sating better and requiring less oxygen. What they think happened was a plug. But this time it was a deep plug- deeper than the trach and deeper then we can suction. The scary thing is they told us this would probably happen again. YIKES! They told us we did the right thing, which was reassuring, but we are still pretty frightened! Although we have seen the light out of the NICU tunnel it seems like we heading through another mountain. We will keep you posted- please pray that these plugging episodes will go away! Faith averages about one every week- which was bearable when we had a safety net in the NICU but not at home!!!
Well thanks for all of your encouragement- your comments have meant so much to us!
Brian and Jen

Wednesday, August 1, 2007

Home Sweet Home!

For the past few months Faith's coming home outfit(a pink onesie with the words "Worth the Wait" have been hanging by her bedside on an IV pole. We've been waiting for the day she could wear it. Today was her day.
Above: Strap me in! I'm ready to go! After many tearful goodbyes Faith was put in her car seat and ready to go. Below: One of Faith's primary nurses (who has been taking care of her since her 2nd day of life) walks us out. This was a significant picture because we've walked this hallway everyday for the past 6 months. The walk to the car is always the hardest because that meant we were leaving our baby. Today the walk took on a new meaning. And the fact that Faith got to travel in an elevator that went to an exit and not a surgery floor was amazing!

Above: Faith sees light for the first time!!!! She's a 1/2 of a year old and has never been outside...until today! Even though she was sleeping- it was a shock to her body! Below: Faith's nurse (Aunt Teena) says goodbye.

Above: Going for the ride of her life! Below: Home, Sweet Home!

Faith "sees" her butterfly room for the first time.

The irony in all of this is we have been putting together her room for the past YEAR and she will spend little time there. Since she is very attached to equipment her main "stations" are in our bedroom and in the living room.

Below: There's no place like home!

After 178 days in the NICU we are THRILLED to announce that Faith is FINALLY home!!!!!! We got a very happy phone call this morning saying that it was ok to discharge! The whole day since then has been a whirlwind. Leaving the NICU was very emotional. After our good-byes and exciting car ride home we were greeted by our medical supply company and respiratory therapist who helped us set everything up and get Faith off and running. Since then we have been very busy unpacking supplies, suctioning Faith, organizing stuff, suctioning Faith, etc. ;) I don’t think it has hit us yet. For months we’ve waited for this day, and it has finally arrived. It’s almost like we are playing house. For months it seems like Faith wasn’t our baby and suddenly we are responsible for her! We received a discharge summary today that stated everything that Faith has gone through- boy that girl is tough! She has really been through the ringer. As we’ve said before she is such an inspiration. As we walked out of the NICU we couldn't stop thinking how proud we were of her. SHE MADE IT! The odds were stacked very high against her and her beat them. Once again, she is our hero! Well, we want to tell you more about our exciting day but we have a goal to make it through this next week; sleep when Faith sleeps. Cuz Lord knows she won’t be sleeping at 3am!’s off to bed...where we get to sleep next to our baby! (Can you believe it?!!!!!)
Thank you all so much. If there is one thing this whole ordeal has taught us is that people are good. We have experienced true kindness of humanity. For that we are very grateful.
Brain and Jen :)
PS: For those of you out there wondering (yes, we know you are wondering) no, Faith did not meet her "brothers" (the dogs) today. We wisely planned a sleepover at grandmas because we knew the first few days/nights would be hectic. We will keep you updated!