Saturday, June 30, 2007

Looking for the rainbow...

Above: Who said we were missing summer? Faith chillin' on her boppy. Below: Faith found a friend! We've been practicing putting in trachs on a doll.
We could probably think of a million reasons why Faith having a trach is a bad thing- but we aren't going to focus on that. Here are some positives;
*NO MORE TAPE! Faith will no longer have to wear tape on her face- even better, no more oxygen circles. The circles stick to the sides of her head to keep her tubes in place- this makes he skin very raw and prevents hair from growing there.
*We will finally get to see Faith's face for more than a couple of seconds. We can't even imagine what she is going to look like without the tubes!
*No more NG tube (feeding tube) slipping out of her nose and having to put it back in (which is not fun for Faith).
And finally the most important.......
Faith will FINALLY be able to breathe! The past 5 months (yes, it will be officially 5 on July 4th) we have watched Faith struggle for every breath- at last she will get to breath air!!!
We are searching for every little rainbow amongst this storm- and ya know what? They are there!!!!
Thanks for stopping by!
Brian and Jen

Thursday, June 28, 2007

Tracheostomy and Gastrostomy 101

In the past few days we've received lots of questions regarding the recent decisions to go ahead with the trach/g-tube surgery. While we are still learning about each of these, we thought we'd pass on some knowledge:
What is a tracheostomy?
A tracheostomy is an incision into the trachea (windpipe) that forms a temporary or permanent opening. Faith will no longer breathe through her nose and mouth but through a tube inserted in her throat.
Why does Faith need a tracheostomy?
Because Faith was extremely premature she needed life support equipment to survive. At 25 weeks her lungs were severely underdeveloped so she was put on a ventilator for support. Like almost everything in medicine, the vent was a catch 22- while it kept Faith alive, it also damaged her airway. As you all know, Faith spent a VERY long time on and off the vent (about 3 months!) which caused scaring on her vocal chords. This scaring has made it very difficult for her to breathe on her own. Faith is currently on a high flow oxygen cannula that stints her airway. While she is able to breathe with it, she has frequently episodes where her oxygen saturation levels plummet, and she needs intervention such as suctioning or even resuscitation. At 47 weeks gestation, and about 5 months of age- this cannot go on any longer. If Faith were to have one of these episodes at home, we would not be able to handle it properly. After multiple Bronchs Faith's ENT (Ear, Nose, and Throat) from The Children's Hospital found that if she did not improve, she would need a trach to provide an airway.
How long will Faith have her Trach?
This is the million dollar question. Hopefully not for long. The average length of time for a child with a trach is two years. Once Faith's airway is healed, and she can breathe on her own, she will have the trach removed.
How do you care for a child with a trach?
Very carefully! Caring for a child with a trach is not somehting to take lightly. Trach care involves a complex process that involves frequent suctions of the tube, tube changes, cleaning, etc. The list of equipment needed at all time in intense- for example we are required to carry a resuscitation bag with us at all times! Problems that could arise with a trach include mucus plugging, too many secretion, accidental decannulation (the trach coming out) increased risk for infection, etc.
Can Faith talk/eat with a Trach?
It depends. We have heard stories of children being able to plug their trach tubes and talk, but it really depends on the size of the trach tube and the reason for the trach. Most families with trachs communicate using sign language- which of course could be difficult for us because of Faith's limited vision (but if Hellen Keller could do it, so can Faith!) Hopefully the trach will be out before Faith is at the age of vocalization. Yes, Faith can eat with the trach, in fact we think she will have a much easier time eating since she will be able to breathe- which leads us to our next topic: G-tube!
What is a Gastrostomy tube?
A gastrostomy feeding tube is either a tube or a button (skin level device) that is surgically placed into the stomach through the abdominal wall. Whatever Faith cannot eat by mouth she will be fed through her tube. This will ensure proper nutritional intake and growth for Faith. We are actually excited about this one because this means no more battles to get Faith to eat! Like the Trach caring for a g-tube is not easy. There are risks such as it coming out, causing infection, etc.
How long will Faith need her g-tube?
Until she can consistently eat and grow on her own.
What about Faith's reflux?
We are also happy to out an end to this! Faith will also undergo a fundoplication to stop her reflux. Here's what we found out about his at Webmd: During fundoplication surgery, the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus as easily. This allows the esophagus to heal.

Phew! Ok we know that was a lot to digest! We appreciate all of your care and concern during this stressful time. These surgeries will not only be life changing for Faith (hopefully in a good way) but for our family as well. They will require a big commitment, but we can handle it! If Faith can survive everything she's gone through we can certainly do this! It will certainly take a village, but we can and we WILL do it!
Thanks for everything!
Brian and Jen

Tuesday, June 26, 2007

Get out the umbrella- here comes the rain.

On Friday, July 6th Faith is scheduled to have a tracheotomy. Yes, we were shocked too. We were not expecting this at all. For the past 48 hours Faith has had several episodes where she has turned apenic and stopped breathing. The nurses, the docs, and everyone agrees that this cannot go on any longer. Faith works sooooo hard to breathe- it is so sad seeing her struggle for air. The trach will give her an airway. She is also going to get the gastronomy tube (g-tube) at the same time since she will be on a ventilator.
Brian and I have gone through many different emotions in the past 24 hours- this is going to be a big adjustment- caring for a child with a trach is not something to take lightly. There is a lot of equipment and there can be complications with the trach. Fortunately we have tremendous support from friends and family that will help us through it (not to mention FANTASTIC nurses and doctors that are walking us through this every step of the way).
We are going to learn everything this is to know about trachs and g-tubes in this next week and a half so that on the day of the surgery we will know we will be prepared to take care of our precious little girl.
Thanks you for your prayers and support- we really need it now!
Brian and Jen

PS: Faith had an eye exam today; same thing as the last post. Right eye: limited vision, but there is hope with correction. Left eye: no vision.

Saturday, June 23, 2007

"For we walk by faith, not by sight." 2 Corinthians 5:7

We have been so focused on Faith's breathing and eating we forgot about her eyes. Today the status on Faith's eyes was clearly explained to us. Basically, Faith will most likely be blind in her left eye. Her retina is pulling and is showing some detachment. Because of the way it is pulling, there isn't a way to correct it. Her right eye looks better (still has Stage 3 ROP), but she will likely suffer vision loss in that eye as well. When I asked if this is why our 5 month old daughter has never looked at us or made eye contact, the answer came in the form of a tearful nod. Now we know what to pray for. Faith will have another eye exam early this week. Please join us in prayer for our little Faith.
It's time for another miracle!
Brian and Jen

Wednesday, June 20, 2007

Doggy Days of Summer!

This dog is about 3 inches long. As you can see below, it was really big compared to Faith during her first week!
Now look how she's grown!

Sorry it has been a while since our last post. Here is what's been going on with Faith:

We have noticed that her reflux has been getting worse. Reflux is a big preemie thing (something like 90% of preemies have it). It's a problem for Faith because the acid can cause irritation to her already swollen vocal chords. It is also important because she is behind in growth and needs every cc she can get! Yesterday Faith had an upper GI to evaluate her reflux. She is now on Zantac to help the acidity.
Faith's feeds continue to be a problem. She is having a very difficult time breathing while eating. We are giving her until July, then we will have to make some decisions regarding the G-tube.
Now that Faith is 46 weeks gestation her corrected age is 1.5 months old. This means we are looking for the milestones a 1 month old baby would have. Thanks to her daily physical therapy Faith has shown lots of improvement in her motor skills. She can now bring her arms above her head and is in less of a flexed position. There is one milestone however that does have us worried. Faith has never made eye contact with us. In fact, she doesn't even look at us in the face. She looks everywhere BUT us. We know we should not worry about these milestones- she has been through a lot and we can't expect her to be like a typical baby, but because this involves the eyes it is a little concerning. We have no idea the extent of her vision- however all we can do is hope and pray that she can see clearly.
Well, that's about all for now. Hopefully it will be an uneventful week!
Thanks for checking in!
Brian and Jen

Friday, June 15, 2007


Well yesterday we were soooo anxious to get Faith home- after today- we don't want her home! At least not like how she is right now. Today Faith gave us a big scare. She had a hypoxic episode- she turned blue and stopped breathing. Fortunately her doctor was in the room when it happened, and she was brought back quickly. A number of different things could have happened; We've notice Faith has been really 'juicy' lately and has had a lot of secretions. We've also noticed a huge weight gain (which we all know is not like Faith). This means she is retaining fluid, which is making it difficult for her to breathe. After the episode an x-ray was taken and showed that her lungs looked hazy and full of fluid. A blood gas also reveled that she is not burning CO2 very well, which once again could be because of fluid retention. So her diuretics were started again. All of this could have caused her to gag and choke on her feeding tube, and turn blue- or it she could have been choking on her own saliva. Whatever it was it scared us to death. It also put things into perspective for us- yesterday we were discussing the possibility of sending Faith home with a nasal gastric feeding tube ( what she has now). They rarely send babies home with these because it is a huge liability and risk. After witnessing what happened today we realize that we don't want her home on a NG tube-because if what had happened today happened at home Faith would not have made it. :( So now we realize WHY Faith is there and she does need more time. Yes, this means a lot more time. It is sad because we are missing the summer with her, and we will have to go back to work in the fall, but at least this way we will ensure that we will have MANY more summers together, because she is in the best place that can take care of her needs right now.
Well phew, we are exhausted and are going to go chill out for the evening.
Please continue to keep little Faith in your prayers.
Thank you!
Brian and Jen

Thursday, June 14, 2007

Day 130

Well it's official...Faith has been in the hospital for 130 days...and we are exhausted. Today it finally hit. It has been very draining and we've had enough! Faith is still not eating, and having a difficult time breathing. The next few weeks are crucial as we will have to make some big decisions regarding Faith. If she continuous to not eat she may need a g-tube (a feeding tube inserted into her stomach so we will feed her through her tummy at home). She is now 45 weeks gestation, way past the developmental milestone of beginning to nipple. Yes, this means another surgery (on the vent again) but may ultimately help her. We are going to wait a few more weeks before the decision is made- until then we are going to have FAITH that it will not come to that.
Thank you for keeping Faith in your prayers,
Brian and Jen

Monday, June 11, 2007

("I think I can... I think I can") We know she can!

Faith had an eye exam today. Everything pretty much looks the same, which is both good and bad. The good side of it is that the retina has not detached- the bad side is the scar tissue is still pulling. Once again she will have to be closely monitored and we'll have to just wait and see.
Today's other good news is she was weened to 1/2 liter on her high flow which she seems to be handling pretty well. The bad news is her feeding has taken a turn for the worse. She manages to nipple about 1 full feeding every 24 hours. Her docs want to give her time to work on the respiratory before a g-tube is considered, but if she is still not eating by July then it will be time to seriously talk about it. So that's where things stand now. As always Faith struggles with the basics; eat and breathe. We have confidence that she will ween well on the high flow and make it to the low flow- it's the eating that makes us worry. That's why we'd like to come together in full force and pray for Faith united as one. We know this is a lot of ask but...Faith eats every 4 hours at 4, 8 and 12 (in am and pm) if you happen to look at a clock and it is that time please say a prayer for little Faith! She is like the little engine that could when it comes to feeding- it's slow going and she just putters out- if we have a lot of people praying for her at those times, we know she will regain strength! We really appreciate all of your support. If there is one thing this whole ordeal has taught us it's that we are truly blessed to have such caring friends and family. We love you all dearly!
Thanks again for everything!
Brian and Jen

Friday, June 8, 2007

Day 123

Faith looooves her pacifier- it is the way she self soothes and copes with stress- she always falls asleep with it in her mouth- while sleeping they often pop out and can be found somewhere smushed to her face (or on the floor!)

Faith had a pretty good week. Just last night she hit the 6 pound mark! Woowhoo! She has been taking about half of her feeds by bottle- the other half through her tube. This week the doctors cut some of her medications like her diuretic and potassium. This is always exciting news.
This week we also had a care conference with Faith's care team to discuss the plan for the next month or so. So far the plan is to ween Faith very slowly from her high flow cannula. This week she went down to 3/4 a liter- next week we will try 1/2. This is where we got into trouble a few weeks ago- Faith was weened to 1/2 a liter and started having lots of problems (which prompted the bronchs, etc.) If she has a good weekend we will ween on Monday. After she is successful on the 1/2 a liter for a while (at least a week or so) then we will try the low flow. The low flow then needs to weened to a level that is safe to come home on. Our goal is the beginning of July- in fact we joked how it would be cool if she came home on July 4th because it would be Faith's Independence day!
Alright, so that's our plan! Now if there's anything we have learned about Faith in the last four months is she has a way of changing plans, but it helps to have some goals in mind! In the meantime Faith still needs to eat consistently.
We are having FAITH that Faith will be coming home in time to hear those fireworks! (or maybe the day after because that might be really frightening for her!)
Well thanks for stopping by!
Brian and Jen

Wednesday, June 6, 2007

The Smell of Rain

A week before I was sent to the hospital, and two weeks before Faith was born, my good friend Katie sent me an e-mail her mom had sent her. At the time reading this story brought me to tears. During the early weeks of Faith's life, when we were unable to touch or hold her we clung to this story;

A cold March wind danced around the dead of night in Dallas as the Doctor walked into the small hospital room of Diana Blessing. Still groggy from surgery, her husband David held her hand as they braced themselves for the latest news. That afternoon of March 10,1991, complications had forced Diana, only 24 weeks pregnant, to Danae Lu Blessing. At 12 inches long and weighing only one pound and nine ounces, they already knew she was perilously premature. Still, the doctor's soft words dropped like bombs. I don't think she's going to make it, he said, as kindly as he could. "There's only a 10 percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one." Numb with disbelief, David and Diana listened as the doctor described the devastating problems Danae would likely face if she survived. She would never walk, she would never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on.

"No! No!" was all Diana could say. She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away. Through the dark hours of morning as Danae held onto life by the thinnest thread, Diana slipped in and out of sleep, growing more and more determined that their tiny daughter would live, and live to be a healthy, happy young girl. But David, fully awake and listening to additional dire details of their daughter's chances of ever leaving the hospital alive, much less healthy, knew he must confront his wife with the inevitable.

David walked in and said that we needed to talk about making funeral arrangements. Diana remembers, 'I felt so bad for him because he was doing everything, trying to include me in what was going on, but I just wouldn't listen, I couldn't listen. I said, "No, that is not going to happen, no way! I don't care what the doctors say; Danae is not going to die! One day she will be just fine, and she will be coming home with us!" As if willed to live by Diana's determination, Danae clung to life hour after hour, with the help of every medical machine and marvel her miniature body could endure. But as those first days passed, a new agony set in for David and Diana. Because Danae's under-developed nervous system was essentially raw, the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love. All they could do, as Danae struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl. There was never a moment when Danae suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there.

At last, when Danae turned two months old, her parents were able to hold her in their arms for the very first time. And two months later-though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero. Danae went home from the hospital, just as her mother had predicted.Today, five years later, Danae is a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life. She shows no signs, what so ever, of any mental or physical impairment. Simply, she is everything a little girl can be and more-but that happy ending is far from the end of her story.

One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Danae was sitting in her mother's lap in the bleachers of a local ballpark where her brother Dustin's baseball team was practicing. As always, Danae was chattering non-stop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, Danae asked, "Do you smell that?" Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain." Danae closed her eyes and again asked, "Do you smell that?" Once again, her mother replied, "Yes, I think we're about to get wet, it smells like rain. Still caught in the moment, Danae shook her head, patted her thin shoulders with her small hands and loudly announced, "No, it smells like Him. It smells like God when you lay your head on His chest." Tears blurred Diana's eyes as Danae then happily hopped down to play with the other children. Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Danae on His chest and it is His loving scent that she remembers so well.

Monday, June 4, 2007

Happy 4 months Faith!

Not much to report on today. Faith is 120 days (exactly 4 months) old today! Yay Faith! We have been very blessed these past months- we have a beautiful girl who has taught us the meaning on Faith!
Keep on fighting Faith!
Brian and Jen

Sunday, June 3, 2007

Happy 17 Weeks Faith!

Splish Splash! Faith gets her Sunday bath! She really enjoys a good soak! Below: Girl time! Faith gets her very first manicure (so she'll quit scratching herself!)

Faith is doing well. Today she took most of her feeds by bottle! We can tell that the steroids (Decadron) are really helping her. We also found a nipple that is the same as her pacifier (the ones issued in the hospital) this has really helped her. This is very encouraging. Another encouraging thing is she might (now this is just a maybe) be able to come home on the high flow oxygen. Normally babies aren't allowed to go home until they are on a low flow cannula. The ENT that did Faith's bronch said it will take many months before her airway is healed- this means many more months in the hospital on high flow. If they can pull some strings and access home high flow equipment- she could come home a lot sooner. Of course she still has some other things to work on before this is talked about seriously- but it is something exciting to keep in mind (and pray for!) We finally feel that things are going upwards from here (we know we've said that before but this time we really mean it!)

Yay Faith! Keep on eating!!!!

Brian and Jen :)