Yikes!

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

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

("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

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

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.

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

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 :)