Faith is Doing Great!

Faith is doing wonderful! She has her moments of apnea (where she stops breathing) but for the most part she is doing great. Our biggest challenge right now is lowering the amount of oxygen she is on so she can ween down a level on her CPAP. She is requiring about 40% oxygen right now. To ween down to another level she needs to be at about 30%. She is very "touchy" meaning when someone goes into change her diaper she requires a lot more oxygen. The occupational therapist has been working with her everyday on this- she's taught us how to do infant massage on Faith so she doesn't think that every kind of touch is bad (poor thing she's been pricked and poked so many times she associates touch with pain.) Right now Faith does not tolerate the massage very well (she goes into sensory overload) but over time she'll adjust!
Other than that no new news to report! Please pray for the Faith's oxygen levels to decrease- the quicker she weens the more likely she'll go home around her due date.
Thanks so much!
Brian and Jen :)

Faith is 33 Week Today!

Faith has reached another milestone- she is a three pounder! 3 pounds 2 ounces to be exact! Yesterday we hit the official half way point- Faith has been in the NICU for 50 days and there are only 50 more until her due date! :) She continues to do well on CPAP. She is now on a CPAP of 6. She is also on a new feeding schedule to prepare her for breast feeding every three hours (like a full term infant would feed). We have been "practicing" everyday. Nothing more to report today- she's just chuggin' along!
Brian and Jen :)

Happy 7 Weeks Faith!

Today was an exciting day for us! Faith is doing more "big girl" things everyday. Today she went "at breast' meaning we practiced breast feeding! She did great! In another week or so she will begin "latching on" and getting her feeds from breast feeding (if all goes well). Feeding is a very tricky issue for preemies because it involves swallowing and breathing at the same time. For now we will still practice breast feeding and she will continue to receive breast milk through a feeding tube.

Once again she is doing great on the CPAP. Tomorrow they are going to ween her down a level. She is currently at a CPAP of 7. The level she is on determines the amount of pressure that goes into her nose. Tomorrow they will try to ween her to 6.5. They are going to ween very slowly since she had difficulty weening off of the ventilator. Faith is behind in development for her gestational age- she should be off of CPAP by now and onto nasal cannula, but since she was on the vent for so long it will take her longer. We are eagerly anticipating the day she goes off of CPAP and onto nasal cannula (which is just an oxygen tube) because that is what she will be coming home on (she will need to be on oxygen for at least a few months when she comes home). So that's the game plan for now: Feed and Ween!

Thanks for checkin' in on our girl today!
Brian and Jen :)

She's Still Doing It!

We are very happy to report that Faith is STILL on CPAP!!!! She's been doing great on it! We are a little concerned about the next week. Faith received the last does of steroids early this morning (and boy are we glad to be done with that!) however that means she will have to work harder now. The doctors have warned us that she was in a "honeymoon" period this week because the steroids were giving her a push. Next week it's all her! If she struggles they will give her another course, but we are praying that more Decadron will not be needed.

The infection that Faith was diagnosed with a few weeks ago has spread throughout the NICU. MRSA (Methicillin-resistant Staphylococcus aureus) is often spread in hospitals to patients with very weakened immune systems (like premature babies). It is extremely hard to treat. Faith received antibiotics a few weeks ago, but the MRSA has colonized in her body. She is not showing signs of sickness so it is not a huge deal. However this means she will be kept in isolation for the rest of her hospital stay. The MRSA has spread to other babies in the NICU thus they are taking precautionary measures. All new babies are being transferred to other hospitals, and everyone who enters the NICU must wear gowns and gloves (we were already doing this with Faith for the past few weeks). This also means that visitors other than parents of babies are asked not to come until the outbreak is controlled. So we are sorry that Faith cannot have any visitors for the time being. :( We will let you know when visitors are allowed.

Well thanks so much for checking in on our little miracle today! Your prayers are being felt!

Brian and Jen :)

PS: In many of the CPAP pictures you may notice Faith's nose looking a little funny. When on CPAP, large plastic prongs go into the baby's nose, thus it pushes the nose upwards making it appear much larger than it actually is. The different coloration is plastic that holds the prongs to her nose. The blue tube going into her mouth is her feeding tube through which she receives breast milk.

PSS: Faith's weight is currently 2 pounds 14 ounces!

Restless House

We are nearing the half way point in Faith's hospital stay. Her room is ready for her- but it sits empty waiting for her to fill it with life. I came across this poem the other day that says what we are going through beautifully.


Restless House
By Scott Landbaum

The onesy Aunt Trina sent jumped
out of its gift box and hopped over to the crib
to see if baby had come home.
Seeing the bare mattress and
neatly folded linen, onesy
slowly inched like a caterpillar
back to its box, closed the lid and pulled
the tissue tightly around.

The crib itself has started to sag
at the ends
so that the gated side rail frowns at us
while the attached mobile turns
at reduced speed,
changing its chirpy lullaby
into a dirge.

Raggedy Andy left his corner of the bay window
to sit with Ann, holding hands,
concerned and uncertain
about why
they had been happily brought from the store
only to sit in an empty nursery.
I separated them a few times
before I understood.

I heard the booties pacing back and forth.
Sometimes I’ll stay in the hallway
and quietly match their steps,
taking comfort in the shared rhythm.
Eventually though I’ll open the door
to make them stop, pick them up
and give them a few gentle pats
before putting them back
in the drawer.

Honestly we came to enjoy it, to
relish the concern of objects for our baby.
It always seemed that we were the ones
who felt better
after reassuring the ruffled blanky.
But they grow more anxious
as time goes by.

The wooden pull train rocks
back and forth in the toy chest, banging
against the inside walls. I’ve found
dents in the chest and some scratches
on the train. I put pillows in there
to ease its pain.

Worse now the house grows restless.
The closet door in our bedroom will not
stay closed, refusing to cover the door jam
I painted white
to record our child’s height.
After walking into it for the third time
we hammered out the pins
and took the door off its hinges, afraid
that this was just the first sign
that we are all
coming apart.

In the kitchen floor some bumps are growing
where the linoleum searches
for the spilled milk
that hasn’t been spilled.
Our baby better come home soon.

Here's a link of other poems this author has written (they are beautiful!) http://www.prematurepoems.com/frames%20page.htm

CPAPin' Away!

Scuba Faith! Faith is just snorkelin' away on CPAP today! Overall she is doing pretty well on CPAP. She d-sated quite a bit today but that is typical Faith! The good news is she's made it through 48 hours! You can do it Faith!

Here's to 48 more!

Brian and Jen :)

PS: The pictures below show how much Faith has grown in the past month. The picture on the left is of Faith's first time on CPAP (when she was a week old) she had to be reintubated a few days after. Five weeks later (picture on the right) she is back on CPAP!

Faith is 32 Weeks Today! 8 More to Go!

Well, Faith has made it 24 hours on CPAP! Overall she is doing pretty well. Early this afternoon her CO2 levels were high and if they did not change she was going to have to be reintubated back on the ventilator. Her levels finally went up (with some help from her Daddy Kangarooing her). She was "fussy" for most of the day. Now that we can hear her cry her "fits" seem more troublesome- like any new parents we have to figure out what she wants (a pacifier, to be moved, etc.) the hard part is we can't pick her up and hold her like you would with a newborn. Nevertheless she is Faith the Fighter and she is persevering!
Thanks for checkin' in out Faith today!
Brian and Jen :)

CPAP is Here!

We are pleased to report that Faith is on CPAP! As of right now she is doing very well. Since she doesn’t have tubes going down her throat we can actually hear her make "baby sounds" now. Her vocal cords are scarred from weeks on the ventilator so we can not hear her cry, but she does make whimper sounds. We can "see" her cry by the cranky face she makes- it’s really kind of cute..sad..but cute. Now that she is on CPAP it is all up to her. If she struggles they will put her back on the vent and increase her dose of steroids (NOT OK!!!). We can already see a big difference in her since she received the steroids- she is on very low amounts of oxygen compared to where she was a few days ago. Thanks again for keeping our little one in your prayers!
Take some deep breaths for Faith tonight! ;)
Brian and Jen :)

Happy 6 Weeks Faith!

Faith had a good "6 week old" birthday today. They did administer the first dose of dexamethasone today around 2pm. The drug works very fast- her doctors told us they will be able to see a difference within 6 hours. Tomorrow they will try to put her on CPAP! :) We will be sure to take pictures of little Faith breathing on her own tomorrow!

Thanks for your prayers- this is a BIG week for Faith!
Brian and Jen :)

Faith's first St. Patty's Day!

We finally know where Faith gets her fiestiness from- the Irish! :) Faith had a wonderful first St. Patrick's Day. She was wrapped up in a green blanket for the occasions. She is having a good day. She has been d-sating a lot but that is very typical. Today she received her last dose of antibiotics. She has been putting on a lot of water weight (just like mommy!) so they are giving her a diuretic to prepare her for the steroids which they will be administering tomorrow. Last week we were very fearful of this but now we know that she needs the help. We know that, "God hath not given us the spirit of fear; but of power, and of love, and of a sound mind" (2 Timothy 1:7) We know the statistics of what has happened to babies who were given this drug but we know that God is bigger than that. The song "Voice of Truth" by Casting Crowns has been ringing in our ears lately, the line that says, "But the voice of truth says do not be afraid the voice of truth says this is for my glory." Faith is a living, breathing (soon to be breathing on her own!) testimony of God's faithfulness and that won't stop with a little drug.

She will be on the steroids for the next 6 days, if all goes well they will try to extubate her (take her off the vent) around the 2nd or 3rd day. She has put on more weight since the last exubtation attempt which will help her. She's been such a fighter thus far, we know she can do it!

Thanks for all of your prayers!

Brain and Jen :)

Despite Faith's healthy appearance things aren’t going very well in her little body. She has had diarrhea for the past 24 hours and her lab work today wasn’t up to par. She is going to need another blood transfusion in the next day. This will be her 5th, but fortunately they can pull the blood from the same donor. Nevertheless she is growing! She is up to 2 pounds 7 ounces! She has almost doubled her birth weight!
We’ve had to put out "kangaroo" sessions on hold because I’m sick. :( But Brian will be able to hold her this weekend. :)
Next week is a big week for Faith- the doctors have said it is a "make or break" week. Faith needs to come off the vent!! They told us in the beginning that a baby’s long term success is often dictated by how long they stay the respirator. It has been almost 6 weeks for Faith, which is waaaaay too long.
This is the week that miracles are going to happen!
Brian and Jen :)

She's packin' on the ounces!

Faith now weighs 2 pounds, 5 ounces! It's great to finally see her steadily increasing in weight. Her ventilator settings have increased due to ugly x-rays of her lungs that show the damage it is causing- so at this point the steroids aren't looking that scary- months on the vent is even more frightening!

We are enjoying little milestones that Faith makes everyday. We are sure that ALL parents adore every detail about their children, but it seems like when you have a preemie the littlest things are monumental; The other day she had "eyes boogies" after taking a snooze. Today we put diaper rash cream on her hiny because it was sore. Every time she yawns we get so excited you'd think that we've won the lottery. We get a kick out of the ordinary which makes us realize that being the parents of a preemie is truly a gift. :)

Yesterday she turned 31 weeks old (adjusted gestational age) only 9 more weeks to go!

You can do it Faith!

Brian and Jen :)


Brian and the boys, painting a picture for Faith's room. (More Faith pictures coming soon- we have been forgetting to bring the camera to the NICU!)

Doin' Alright

Can you believe how big she is getting?!!! Look at those chubby cheeks! Although she looks HUGE compared to where she was she is still tiny- her head is about the size of an apple (but it was a the size of a lemon so she is growing!) She is holding steady at 2.3 pounds. She had a rough night last night but had a better day. She moves around a lot so the tubes that go down her throat move as well and need to be readjusted frequently. When I got to the NICU today she was not have a very good day- I was sad because I thought that meant I wouldn't be able to "kangaroo" her. The nurses tried tons of things to make her more comfortable but nothing seemed to work- then one nurse said, "she needs her mommy!!!" And sure enough once I held her she did fantastic! She went to the lowest amount of oxygen she had all day and all her vitals signs were excellent. I usually hold her at the same time everyday so she expects it now. When Brian got the hospital later that afternoon, she perked right up again when she heard his voice. It is wonderful that she is getting so comfortable around us and looks forward to our visits!

Thanks for the prayers!

Brian and Jen :)

PS: She had a not so good looking x-ray today that showed damage to her lungs- please pray that her lungs will be healed!

PSS: The red spot on her chin is an ouchie from the tape that was holding the ventilator tubes to her mouth. Not to worry- it will heal quickly!

Happy 5 weeks Faith!

No major news to report on today. Faith is just hanging in there. She is a tough little cookie! She has a reputation with NICU staff as the "princess" because she knows what she wants and she knows how to get it. The nurses were wondering where this came from since Brian and I seem "low key." :) Her primary nurse practitioner said, "She’s her own woman!" It’s amazing how she is so tiny and yet has such a big personality! While she may give us trouble when we she is three (which is ok by us!), her spunky energy is keeping her fighting! :)
Thanks for checking in today!
Brian and Jen :)

The IV's are back. :(

Today we received the news that Faith has a staph infection in her lungs. This could have contributed to her difficulty in breathing over the past few days (and why she couldn't stay on CPAP). They are going to give her antibiotics through an IV for the next 7-10 days. The silver lining in this cloud is that today they were going to start the steroids but cannot do so until the infection clears up and the antibiotics have been administered. This gives Faith another week to grow so when they do take her off the vent she will have more strength. The Lord sure works in mysterious ways!!! ;) The infection is not affecting any other part of Faith's body- she is maintaining a good temperature and eating all of her feeds. She is up to 7.5 ML of breast milk every hour. It is working because she now weighs a whooping 2 pounds 4 ounces!!!

While it is unfortunate that Faith has another infection and has to stay on the vent, we are happy that she can be steriod free for a little while longer!
Thanks for checking in today!
Brian and Jen :)

The Waiting Game...

Weeeeeell......she has not received the steroids yet. She has a possible urinary tract infection. The doctors want to give her antibiotics for a few days before administering the steroid shots. This might be a blessing in disguise because it will give her a few days to grow and mature. If she doesn't have an infection they will begin with a low dose. Today they noticed that her airways were very swollen, which could be contributing to the breathing problem. The steroids will help the inflammation, but it is a catch 22 as they are debating if the risks associated with this drug outweigh the benefits.

No more new to report- she is still holding steady at 2.2 pounds. Thanks for your continued support and encouragement!
Brian and Jen

2 steps forward, 3 steps back.

We just received the dreaded phone call- Faith is back on the vent. Her little lungs were just not strong enough to breathe on her own. Tonight they will be administering the first dose of dexamethasone, a steroid that has many negative side effects including brain damage. Here is a link that describes the why this drug is used and its side effects: http://www.msnbc.msn.com/id/4593863/

We know that God is bigger than cerebral palsy and/or any other possible side effect from this drug. Please pray that the small dose they give her will be enough- they will try her again on CPAP in the next few days.

She's doing it!

The NICU is just full of surprises these days!!! Today's surprise was CPAP!!! This machine pushes a continuous flow of air/oxygen to the airways through her nose to help keep the tiny air passages in the lungs open. Because Faith is so tiny it is a challenge to keep the prongs in her nose. When I was there today the prongs kept falling out and she d-sated (meaning her oxygen fell to an unsafe level). She is keeping the doctors very busy as they need to constantly readjust her tubes.

She reached another milestone today when she sucked on a pacifier for the first time! It was amazing to feel her sucking while I held the pacifier to her mouth. In about 4 weeks we will try breast feeding!

It feels like we are turning a corner here- Faith has had some really good days. Please pray that she can stay on CPAP. She needs strength to keep breathing on her own- so every prayer really helps!

Thanks for checking in today!

Brain and Jen :)

30 weeks!!!

Almost forgot... Faith is 30 weeks (gestational age) now!!!!! :) The count down is on- 10 more weeks and she can come home!

IV Free!

Every time we go into the NICU we are met with pleasant surprises. Today we learned that Faith is IV free! See is off her fentanyl and other IV meds. It is so nice to see her with less wires! We received double good news when we saw that she gained another 2 ounces last night. She is now 2.2 pounds! We are a little nervous though- once she hits 2.3 it's off the vent she goes (which is a good thing) but if she doesn't do well on cpap they have to give her the icky stuff. :( She will probably gain the next ounce in the next day or so it's major prayer time!!!!!

Other than that no other news to report-I've been able to "kangaroo" her for the past week which has been great. Kangaroo holding is when the infant and mother are skin to skin. She lays on my chest as I recline in a lazy-boy chair. They have done many studies that site the benefits of kangarooing preemies.

We will let you know how she does without the vent! :)
Brian and Jen :)

She's a 2 pounder!!!!

Brian got a lovely surprise this morning when he visited Faith before work- she weighs 2 pounds! Although some of that might be water weight we are not complaining! She has also gone up on her feeds- 6 ml's per hour! A few weeks ago she was getting 1 every 4 hours. She's a growing girl! When she reaches 2 pounds 3 ounces the doctors want to try to take her off the vent. They will then put her on bubble cpap. The cpap puts pressure through her nose to enable breathing and is much better for her lungs. This also means that she will have to do more work- on the vent she can decide when to breathe and when not to- on cpap she doesn't have a choice. If she does not do well on the cpap and has to go back to the ventilator they will use the steroids. :( So that is our big prayer request for the week. We know Faith can do it- she's a little fighter.

In other news Faith was moved to a new room today. Because there are not a lot of babies in the NICU right now (isn't that great?) they are consolidating space- that way the nurses will be closer to the babies rather than spreading them out. It's the same kind of room that she had before- but Brian thinks this one will be a little quieter than the other. :)

I (Jen) went back to work today. :( Fortunately I am only working half days- so I will be at the hospital everyday by noon to do her "cares" (change her diaper, take her temperature, etc.) and if I am lucky, hold her. :)

Well thanks for checking in on Faith today. Your prayers are being felt!
Brian and Jen :)

Happy 1 Month Faith!!!

Yay! Can you believe it's been a month? The day after Faith was born one of the labor and delivery nurses told us that her son had spent 3 weeks in the NICU and they were the longest 3 weeks of her life- at they time we were like..."oh no we have to go through a 3 1/2 months- how are we going to do this?"Well- it's been 4 weeks and while they haven't been easy, it's gone by pretty quickly! 1 month down 2 more to go!!!

Once again Faith had an OK day. She is holding steady on her ventilator settings. They wean her based on her CO2 levels from her blood gas (basically a blood sample). Today her levels were just boarder line OK- meaning they can't wean her today but she is getting closer.

While we were visiting with her today she "d-sated" a lot- they think this is a mechanical problem with the tubes down her throat- if they move the slightest bit her stats go down. She sure hates those tubes! In fact last night she pulled the tubes out and extubated herself! I guess she was telling us that she wants to come off that ventilator! Unfortunately her she needs to grow a little more before they can comfortable take her off.

Faith is now recieving her food from a tube that goes through her nose (a nasogastric intubation) which will ease the discomfort in her throat where she previoulsy was receiving her feeds.

Let's pray for more weight gain this week!
Thanks for checkin' in!
Brian and Jen :)

"What are they doing to my head?!!!"

Faith had an "OK" day today. She started out the day fantastic- however in the early afternoon she started "d-sating" this meant that the level of oxygen saturating her lungs was not at a healthy level.

She also "bradied" a lot which means her heart rate droped to unsafe levels (under 100). Usually when this happens it just means the nurses need to make a few adjustments (on her oxygen settings, re-positioning her ventilator tube, changing her position, etc) however nothing seemed to work today. This meant that there was a larger problem. The nurses eventually found that there was a blood clot in her arterial line. This is the line that is currently giving her Fentanyl for pain management. This was a semi-easy fix. The nurses withdrew the line (which we bet felt great to Faith) but had to insert another IV- this time in her head (the picture above shows this). Don't be alarmed, in infants this tiny, the veins in the head are the best. So Faith is looking like a unicorn, but happy to have her pain meds back. Once she is weaned off of the Fentanyl, they can remove the IV. Anytime she has one less thing sticking in her is cause for a celebration!

Faith lost some weight again last night- she is now 1 pound 12 ounces. To help her gain weight they are fortifying the breast milk she is given (through a tube down her throat) with extra protein and calories. The more weight she gains the easier it will be for her to wean off the ventilator which means no dexamethasone (the steroid that can cause cerebral palsy)!!!

On a positive note tomorrow Faith turns 1 month old!!!! We thought you'd like to see the room she's been living in for the past month (She's tucked away in the isolette)

Thanks for checking in on Faith today!
Brian and Jen :)

Hanging in there

Faith had a pretty good day today. Her primary nurse Tina kept commenting on how "grown up" she looked. :) She is gaining weight slowly but surely. Her birth weight was 1 pound 6 ounces but at one point she was down to 1 pound 3 ounces. She now weighs about 1 pound 14 ounces- a number that has been going up and down for the past week. We are eagerly anticipating the day she weighs 2 pounds!!

Today Faith had her first dose of a Thyroid medication to treat her Hypothyroidism. This is a condition that is very common in preemies and is not serious, however she will have to take this pill everyday for the next three years of her life.

They also began giving Faith another dose of antibiotics. They are not sure where the infection is, but her blood work suggests that something in her body is off.

There is still no word on whether or not they will administer the steroids to help her lungs. She is weaning very slowly on the ventilator.

Thanks for keeping her in your prayers!
Brian and Jen :)

Faith is Here!

Hello there family and friends! Many of you have been following Faith's journey for a few weeks now (and some for the past 6 months!). We wanted to create this blog as a way to update everyone on Faith's progress. For those who are just joining us on our journey now here is the story behind our little angel. :)

Last August we received the greatest surprise of our life- we were pregnant! Although we weren't planning on starting our family until next summer we were ecstatic about our new little addition. The excitement soon turned to fear days later when I (Jen) started bleeding. We went to the doctor and they discovered that I had a bicornuate uterus- which basically means it is heart shaped. The miracle behind this is it is extremely difficult to even conceive with this type of uterus! The doctor were not too optimistic about this pregnancy and often made comments like, "you can always try again."

The bleeding occurred for the next four months. In that time we had numerous emergency room trips where once again the doctors would express their doubt about the pregnancy being successful. Around week 14 I was diagnosed with Placenta Previa and put on bed rest. A month later when we went to the doctor to find out what the sex of our baby was, we received some very good news- the placenta previa had cleared on its own and I was ok to go back to work! For the next few weeks we were smooth sailing. I noticed that I was started to retain a lot of fluid- friends and family who saw me would graciously comment on how I was starting to balloon! I didn’t feel like I was eating a lot, however I also was putting on weight very rapidly. Working was also becoming increasingly difficult as I was experiencing a lot of headaches.

On January 29th my headache seemed much more intense than the others. After consulting my mom she sent over her friend to take my blood pressure. It was extremely high. After arguing with mom and Brian I finally agreed to go to the hospital. The doctors did several tests, however we had to wait 24 hours to receive the results. The next morning I was getting ready to leave the hospital when the doctor came in and said that I had developed sever Toxemia and the only cure for this disease was delivery. They immediately administered steroid shots (to help Faith’s lungs mature) and transferred me by ambulance to St. Joseph hospital in Denver where they were more equipped to treat babies this young.

We knew we’d be delivery early, however, we thought we’d have weeks before we’d meet faith. Five days later my lungs filled with fluid and I could not breathe- the doctor told us we would have to move fast and deliver the baby on Sunday, February 4th. It’s a good thing none of our teams were playing because our little Faith was born on Super Bowl Sunday via emergency c-section. She was 25 weeks and 5 days gestation. She weighed 1 pound 6 ounces and was 12 ½ inches long. Although she is small she is beautiful and oh is she mighty!!! She has truly been a fighter. In her first three weeks of life she has undergone heart surgery (a PDA ligation), numerous procedures (putting in PIC lines, arterial lines, etc.) and has received four blood transfusions. She had a very good first week of life and graduated from the ventilator to something called bubble cpap (which unlike the ventilator doesn’t damage her lungs). We even got to hold her "Kangaroo style" a few times!

Week 2 and 3 had many setbacks. Faith’s heart rate continued to drop (they call this a "brady") and she was not breathing well. As a result she went back on the ventilator and to the oscillator. One day she turned blue and had to be resuscitated- during which she received a few broken ribs. Over the course of the week Faith’s health was deteriorating. She was showing signs of stress but the doctors could not pin point what was going on. She received a spinal tap and was poked many times to see if she had an infection. They loaded her up with painkillers and antibiotics to clear out anything that was harming her.

So that’s where we are today. Faith has had a few good days but is still not out of the woods yet. The doctors are concerned that the increased exposure to the ventilator is damaging her lungs. They are discussing the possibility of using steroids to mature her lungs. There are many side effects to using steroids in such young babies including brain damage. Please pray that Faith’s lungs will clear up and she will come off the oscillator.

Thank you so much for keeping our family in your prayers!

Brian and Jen :)