Wednesday, September 30, 2009

great expectations

"Our petition is that she'll grow up; our desire is that Her creator be glorified." I read these words this afternoon that a former student of Luke's (and amazing man of God himself) wrote and they have resounded over and over in my head. What amazing words. They have touched my heart. In the midst of a time when there are so many thoughts and words floating through my mind that I wish would go away, these words overpower them. I have learned to live these 2 scriptures that I have shared so many times before with others who are going through difficult times. 2 Corinthians 10:5 says, "We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ." Luke reminds me often to take every thought captive. Madelyn's dad is the most amazing man of God I have ever met. She is so blessed to have him. To speak scripture over his baby girl and I when I know he is hurting inside just as much, shows me just how much he truly believes. He spent most of the day at her side...praying for her...calling her his pretty little lady...and telling her about all the great things they will do together.The other scripture that I have been leaning on today as I realize just how low my lows have the ability to go is 2 Corinthians 12: 9. It says, "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."

Madelyn has had such a good day of rest. She is on minimal settings on her ventilator. It is set to 21% oxygen which is room air (what you and I breath all the time). It ensures she gets 24 breaths per minute if she forgets to breath or just takes a break. Right now I am watching her monitor closely and she is breathing over the machine a little and her oxygen saturation is at 100%. Our little girl is getting the rest that she has needed so badly with the help of the ventilator. The doctor did so many tests today. The good news so far...none of them show any major problems. In fact, all of her blood work has looked surprisingly good. They did an EEG this morning to monitor brain activity. Her neonatologist said it looked good as well as one of the other specialists at the hospital. It was hard to see her with all the little wires hooked up to her head, but I was comforted in the fact that it did not bother her one bit. It did not hurt and she was too busy sleeping to even notice it much.Once they were finished, her sweet nurse spent time cleaning the gunk out of her hair and even took the time to get her a cute little hat. She put a cute little flower clip on it and coordinated it with her sheet.When I walked in her room and saw this sweet little site, I could not hold back the tears. She was snuggled up so sweetly. I felt a peace knowing that she felt held...that someone cared enough to do the things for her, that at this time, I cannot do. The things I long to do for her. The little swaddler that is wrapped around her was made by Threads of Love. What a ministry they have. How blessed I have been by their efforts. It is so hard to see your child on a teeny hospital bed when you expect to see them in their bassinet...not to mention the cords and tubes...but this ministry allows you to see them in a way that is much easier. A way that brings some normalcy to this chaos.

Tomorrow the doctor thinks they will try to extubate Madelyn as long as she is still stable. They will be monitoring her very closely. We are praying that she will be able to sustain her breathing without the tube. We know she is a fighter. We know she can do it. We just have to see if the rest she has gotten, has been enough. If not, it may just take a little more time. Either way...she is doing well! We are cautiously optimistic...but know that it will happen!!!

Madelyn has had a day surrounded by so many that love her. Her Gigi and Papa stayed with her through wee hours of the morning and plan to do so again tonight. They are the night crew. Do you think they will volunteer for that shift when we head home?? HA! Her Grandma and Grandpa have loved on her throughout the day. Her proud Aunt Marlo and Uncle Jarrod have been such a solid support. They spent time talking with their first niece today. Madelyn was awake for part of the time they were in here and she was just looking up at them. I am pretty sure she made them melt with those big beautiful eyes. She is going to have so much fun playing with her cousins and having sleepovers...being spoiled by them all. Her Great Grandma can't wait to come on shift.

Thank you for the overwhelming love and support. Your kind words and continued prayers have touched our lives...allowed us to feel God's presence...sustained us in a way that only prayer can. We are grateful. We are waiting...expecting great things from our great God.

*Kathryn

Wednesday Morning

This morning as I am sitting next to Madelyn's bed in the NICU watching her breath with the help of a ventilator, I cannot help but just reflect over the last few days. I was thinking about Wednesday (which feels like forever ago) and how excited/nervous/happy/insert any emotion possible here that Luke and I were. We just spent time together, running a few last errands, and resting before the big day. I remember not being able to sleep that night. We both went to sleep pretty late. I was wide awake at about 3am and took the longest shower of my life (I figured most showers from here on out would last about 5 minutes at the most so I better take advantage of it while I could). I tried on about 10 different outfits trying to figure out what to wear to the hospital! I did my hair, put on my makeup, and changed again...and again. I could not wait to meet our little girl. I was not really nervous about surgery. I was not really nervous about recovery. I was just completely excited. Not once that morning did I think twice about whether or not she would be healthy. Not once did I even think to pray that she would be healthy. After all, we had been to the doctor every week for so long monitoring her and had ultrasound after ultrasound that showed a perfect little girl growing inside of me. All of my complications that we faced were from my body not cooperating...not hers. So Thursday morning as I was prepped for surgery, all I could think about was seeing our little girl. We were going back to the operating room. The doctors were going to do the c-section, show us our little girl over the curtain, hand her to the nurses to "score her" and then Luke would have his precious little girl in his arms and bring her over for me to see. That's what was supposed to happen. That is what I trusted would happen. That is not what happened. I can't even begin to rehash the whirlwind that has been the days to follow. It has been filled with high hopes and incredible let downs...tender moments with a very alert little girl and scary ones with a 6 lb little life struggling to breath.

Yesterday afternoon, Luke and I had gone back to our room, breathing a sigh of relief that the doctor really did not feel that Madelyn was heading South. He thought we just weened her too soon and she would just require a few more days of oxygen than originally planned. Luke asked my mom to go watch her while we took a deep breath in the room. After a day of worrying and praying and worrying and praying, we were able to finally relax a little. Moments later, Luke's mom came to the room to get us. The moment I heard the words that our little one had stopped breathing in my mother's arms is a moment I will never forget. My heart aches that her sweet Grandma had to experience that, but I am so thankful for God's faithfulness and protection for our girl by allowing her to be the one to have had her in her arms.

From there, it all gets hazy. Luke and I stood by her side as they tried to stabilize her once we arrived at the NICU. Each time she stopped crying our hearts stopped because her little chest would just be still. Luke and I would frantically try to stimulate her to breath again as the nurses worked. Over and over her breathing would stop. Over and over our hearts would stop. All I know now is, we are in this limbo of wait and see. The sense of urgency that Luke and I feel to know what is causing this is not a medical sense of urgency on the doctor's part now that she is stable. She has actually been able to be on minimal oxygen through her ventilator. She has moments where she is able to breath over it...but the ventilator ensures she gets a certain number of breaths per minute, and she often lets it do the work. I am sure today will be filled with more tests...more tears...and hopefully answers.

I would love to have the time to answer all the questions, emails, facebook messages, phone calls and text messages, but the truth is...I can't. We do however want you to know that your support has played a tremendous part in our lives in the last several days. Please continue to pray for her. Please continue to spread the word to fellow believers to pray for her.

One question that I will answer is about where we are now. Madelyn was transferred to Mother Frances Hospital in Tyler to their Neonatal Intensive Care Unit. The nurses at ETMC had become almost like family as we watched them come and go each day and as they cared for our sweet girl. As much as I wish I could say we will not be here very long, I am afraid the nurses here, will too become like family. We were so grateful to see a high school friend walk in the door of the unit last night with her scrubs on. We were even more grateful to hear she was assigned to our little girl. There is no worse feeling than thinking about leaving your child's side...but knowing her nurse personally...knowing she believes...knowing she has been praying for your child before she was even born...it made the thought of laying down in the hospitality room around the corner from Maddie's room a little bit easier. We have gotten a few hours of sleep.

Now, we pray...we wait...we expect great things from our God.

*Kathryn

My sister in law will keep you updated when we are unable. We are so thankful for amazing family and friends. God is so good to our family of 3.

Tuesday, September 29, 2009

Prayers needed...

This is Marlo, Kathryn's sister-in-law updating for Kathryn as she is very preoccupied tonight.

Kathryn updated earlier this morning with some details that Maddie was put back on oxygen. This afternoon around 3:50, things began to worsen and she had an episode where she stopped breathing and had to be stimulated to start again. These episodes of apnea continued and she was transferred to Mother Frances Hospital's NICU around 5:30 p.m. because she needed more than they could provide at ETMC. Her chest x-ray looked worse and other tests had not improved. She has been put on a ventilator to breathe for her for now so that her little body can rest. The concern now is what is causing the apnea episodes. They have done numerous tests and have not pinpointed a cause for the apnea yet. All major functions (heart, brain, etc. look good). The neonatologist has changed her antibiotics and started some other preventive medications just to be on the safe side. They have her stable there and are just waiting to find out more. Kathryn and Luke could use your prayers now more than ever! They are so worried about their sweet angel...just as we all are! We will do our best to keep everyone posted...just keep praying for this sweet baby girl!!!

Prayer Please

Just a short update to ask for prayers. Madelyn had been weened to a 1/16th of a liter of Oxygen as of this morning when I went to see her at 3am. I held her from 3-5am and fed her from 5-5:30am. I noticed she started breathing heavily and seemed to be stressed out when she was trying to feed, so we decided to finish feeding her with the syringe. I held her until about 6:15am and her respirations seemed to have "recovered" from the stress of eating. She syringe fed again around 8am and showed some of the same signs but not as much as before. At about 9 am her respirations sky rocketed, she began retracting again with each breath she took and was ultimately put back on 2 liters of oxygen. After almost 2 hours, her respirations are starting to come down. She is not maintaining her temperature very well so they have her under the heat lamp. To help with the breathing, they have placed her on her side. Luke and I are just asking for your prayers. We have been so overwhelmed by all that have prayed for her this far and are asking that you continue.

We will give you an update soon.

Monday, September 28, 2009

Goodnight

Just call me Little Miss Snores A Lot...
video

I thought you all might enjoy this little video of Madelyn snoring after a yummy dinner!

Goodnight,
Kathryn

Day 5

Today has been such a great day for our little girl. This morning we were able to syringe feed her for the first time! It was so great to be a part of feeding her!! The first feeding went SO well! She's a good little eater. She has had 2 more feedings since then and she has eaten well at those too. She falls asleep between sucks...ha! SO precious. SO frustrating. But I am just glad she is eating. The upside to falling asleep between sucks...the longer the feeding takes, the longer I get to hold her!

The doctor came in right after her second feeding this morning and spent some time talking with Luke & I. He is still saying that it is a combination of premature lungs and pneumonia. He is just a little perplexed as to where she would have gotten the pneumonia since I have not had any symptoms that would lead him to believe she got it from me. At this point, Luke and I are not too concerned about what it is because what it is starting to become "what it was". Her biliruben count was down to the normal range so our glow worm was able to come out from under the "baby tanning bed". Her skin color looks great and they will recheck this count tomorrow to make sure she is maintaining a normal count. They did not do another x-ray today due to the fact that she has been making so much progress. The doctor said that they will do one if she regresses but if not wait until closer to discharge just to make sure the pneumonia is gone. He decided to take her off the oxygen and just push room air through the nasal cannula. After about 30 minutes off of the oxygen her O2 saturation dropped down to 80%. She was then placed back on the oxygen. They are going to try to slowly ween her off, as she is only on a minimal amount. She is doing great so far with the weening. The doctor said that once she is weened completely off the oxygen they will work to ween her off the nasal cannula completely. Once she proves she can handle room air (without it being "pushed in") she will be able to be with us in our room until discharge. She will continue the antibiotics via IV until Thursday and at that point, if her breathing is under control, the only thing that would keep us here longer is establishing feeding. Speaking of feeding, the doctor also said that we can try to nurse up to 3 times a day and alternate with the syringe. We have to make sure she gets the nourishment and maintains her breathing at the same time. Overall, she is looking great and there is an end in sight!!

It was such a joy to get to hold her close so much today AND the day is not over yet!!! Not only have Luke and I gotten to hold her, our moms have too! They helped with her 3rd feeding while Luke and I took a nap. From what I hear, they bribed her to open her mouth and eat. I can only imagine the things she was promised. Two Grandmas...at the same time...we have some major damage control to take care of tonight :)

There are so many more thoughts that I want to share. So many things that I want to say. For now, I will just share some of the pictures from today. I think we may submit these pictures to the Guinness Book of World Records for the "most photographed 5 day old baby"!!















Today also brought something that this bow making mommy has been waiting since Thursday to be able to do...check out Madelyn's pink bow that I made her...

And these are just my favorites!

I look at that sweet little face, thinking about how less than a week ago I was posting about how she was wiggling around inside of me...it fascinates me in a way that I can't even begin to describe. I am in awe of God's creation...in love with His perfect design. How could you witness such a thing as this, and not believe??

*Kathryn

Sunday, September 27, 2009

a day of firsts...

This is going to be a post FULL of pictures! It has been a day of enjoying our little girl and lots of firsts! We enjoyed spending time with our wide eyed little girl...I know I am a little partial, but look at that sweet face. She is gorgeous!
She loves her daddy. It is so sweet to watch my 2 favorites spending time together. His voice always seems to calm her.
Yawn, baby, yawn!
She always seems so alert when she is awake now. She scans around and watches everyone, but for the most part remains really calm when she is awake. Hopefully she will be laid back like her daddy!
I got to hold her this afternoon for about 30 minutes!! She had a new IV put in on the other side of her head so she had been disturbed for quite some time just before this. It was great to be able to soothe her and love on her!
This was her very first feeding! Luke and I were almost dreading the feeding a little because of the tube that had to go down her throat, but she did great! Luke and I were even able to watch it being put in and the feeding without any tears on our end! Ha! She is such a trooper and took 15cc's of mommy's milk. Right after she ate she fell asleep. They were so impressed with how well she took to the milk!
We found out after lunch time that her biliruben levels had increased from the previous day from the low/moderate risk group to the high intermediate risk group for jaundice. So right after she had her first feeding she moved to a new bed. Luke called her our little glow worm. She had these little baby cloth goggles on to protect her eyes and will spend at least 24 hours in the bili bed.
After spending 6 hours in the bili bed, Luke was able to hold Madelyn for 45 minutes using the "bili blanket". Do you see where it looks like her head is glowing?? That's the bili blanket Luke is holding under her back. I love how she is looking up into Luke's eyes. She's already got him wrapped around her little finger!!
The glow worm still looking up so intently at Daddy!
Luke sang to her while he rocked her tonight. It really made me look forward to nights at home, listening to him sing and play the guitar for her.
Does this make your heart melt or what?? Luke loves to give his pretty little lady kisses!
After lots of good daddy daughter time, Madelyn fell asleep in his arms. It was absolutely precious!

She is still on 25% oxygen tonight and they are not going to try to ween off of it until her blood work results tomorrow. Her respirations have been GREAT. They mainly stay between 50-65 right now which is AWESOME. She just seems so much more at peace and content. She has now had 3 feedings and done great for all 3! They will do another x-ray in the morning that should be more informative concerning the presence still of the pneumonia in the lungs. Like I mentioned earlier, because she was on the CPAP machine when they took her x-ray this morning, it might not have been as accurate.

I know that tomorrow only holds more progress for Madelyn!! I have some more that I want to share, but I wanted to at least share these pictures for now and let you know how great she is doing!

*Kathryn

bye, bye CPAP!

It's a good day at the hospital for this family of 3!!! Madelyn is OFF the CPAP machine. She is still on 26% oxygen through a nasal cannula for now but it is not being "pushed" in like it was with the CPAP. This morning her respirations per minute were around 55-75 on the CPAP and are now in the 40-50's range since she has been off! PRAISE THE LORD! The doctor said the next step is to "push" room air through the nasal cannula once she is weened off the oxygen but that they are not in a hurry. Her x-rays looked like there was improvement, but they were taken while she was on the CPAP (which pushes open the lungs) so we will get a better idea of how everything looks from tomorrow's x-rays. Luke and I just spent some time with her and she looks great! She is still trying to pull the nasal cannula out, but is a lot happier with it than she was with the CPAP. It is so great to be able to see all of her little face again. The doctor said that I may get to hold her this afternoon and depending on her afternoon blood work results and if she keeps her respirations down she may get to feed through a gavage (basically a tube that is inserted down her throat). Her little legs are really starting to get skinny so we can't wait to get some food in her to get them thickened up! All of this is so great and exciting...Luke and I are celebrating every step she takes, large or small! Did I mention I may get to hold her this afternoon?? Gosh, I feel like even though we weren't at church this beautiful (I can tell because we have great big windows in our hospital room) Sunday morning, we felt His presence in a mighty way. I am confident that our prayers and those of everyone who knows about this little sweetie are heard and that God is being glorified!! We know that she still has a more progress to make, but are so encouraged by the progress she has already made.Madelyn and her #1 man! Does that look like a proud daddy or what?
I love having "family pictures" taken...there will be many more to come, you can count on that!
Telling her how excited I am that I get to hold her this afternoon! She told me she was excited too. Ha!
Her daddy could not help but take lots of pictures of his little girl. Click. Flash. Click. Flash. Click. Flash.
"Daddy, lay off the flash already!! You have taken 500 pictures of me in the last few days...don't you have enough?" (500 is no exaggeration either folks...if anything it's under estimating)
She is so peaceful and happy now! I love to look at her!
"Hallelujah! I CAN BREATH!" Madelyn is praising the Lord on this Sunday morning too :)

I am sure there will be more updates to come today as we monitor how she responds to the nasal cannula, possible feeding, and getting to be held by her proud parents!!

*Kathryn

Doting Grandparents

Grandma (my mom) checking out the little beauty!
Grandpa (my dad) talking to Madelyn (probably giving her fishing advice or telling about their future outings to ride horses).
Grandma and Gigi (Luke's mom) were just about as excited as I was that I got to hold her on Thursday (although I am sure they would have been more excited if they were the ones getting to hold her). It's hard to believe that is the only time I have gotten to feel her in my arms. I am anxiously waiting to spoil this little girl and hold her all day!!
Papa (Luke's dad) getting an up close look at his first granddaughter while she was still under the oxygen hood.
He has pretty much camped outside the special care nursery window for the last few days. This is where I found him last night at 1am. He pulled up a chair (which I am sure is much more comfortable than the ledge he sat on the night before.

Do you think this child is loved or what??

It's about 10am on Sunday morning. Madelyn's respiration count is at about 70, which is still pretty good! She is still retracting some, but not with every breath that she takes. The CPAP machine really seems to be working (when she isn't grabbing at it trying to yank it off). She has really taken to her pacifier, which we love to just sit and watch her suck on. This morning she has already had her blood work and x-rays so we are just waiting for the doctor to come up and give us the game plan for today. It is so great to see her so calm and peaceful!

*Kathryn

Saturday, September 26, 2009

Saturday Night Update

At the moment I am finding myself speechless so I will try my hardest to put to words what I am thinking and feeling. This morning started off rough. We did not know until after the fact that she was actually having a harder time than we thought. Her respiration's were above 120 for over an hour and her blood results indicated she was heading downhill...fast. Thankfully, once Madelyn got used to the CPAP machine, she has steadily improved throughout the course of the day. Her respiration's have been hanging out between 50-70 since 7:30pm!!! HOW AWESOME IS THAT? (Just in case you were wondering...you should be saying, "Pretty darn awesome, Kathryn!!") I just have to throw this out there...our nurse has been amazing. The doctor confirmed that she does in fact have pneumonia. Because of the pneumonia we are realizing we will be here for a little while and that it is just going to take some time for her to get better...and get better she will. We have been so encouraged this afternoon. It is still pretty miserable seeing her hooked up to all the machines, but I know that is what is helping her get better. It is also pretty miserable not being able to hold her, but I know that is necessary for now. On top of that, it is pretty miserable knowing that she can't eat for now and it may be a week before she can. I know this too, is just the way it has to be for now.

Here is a video of Madelyn. She had the hiccups in this one and you can hear a few of them if you listen close...
video

I have to tell you, about an hour ago Madelyn woke up again and had her eyes open. She was looking at her daddy so intently. He moved from one side of her bed to the other and she followed him. My heart melts just thinking about it.

Thank you for your prayers...keep 'em coming please!

I am about to head to the special care nursery to check on her again. I love to hold her hand. I hope she loves it too.

*Kathryn

Saturday 10:15am



Madelyn's doctor came in this morning and based on her last blood work decided that it was time to try something else. He felt like although she was not necessarily getting much worse, she was not making any progress either. She was still breathing very rapidly and becomes easily agitated. The rapid breathing over this long of a period of time will eventually cause fatigue. The strip on the lungs was still very present and he gave us the impression he thinks it is pneumonia. They started her on a CPAP machine (continuous positive airway pressure) to help her breath more deeply and thus slow her breathing down. She has been fighting it now for the last hour or so. When she fights it, it does not work and her oxygen levels drop dramatically. Our nurse this morning is absolutely awesome. She encouraged us to let her know we are there. I asked her if we could play some music that she likes. Of course it had to be Kari Jobe. Her Papa went to get the CD and within 5 minutes of continuous touch and listening to the music she was calm, breathing deeply, and her oxygen levels began to rise. I left on that note so that I could get a quick update in and some clean clothes on. Just in case I have not posted the words to the song "Healer" enough times in previous posts (that was sarcastic)...

You hold every moment
You calm my raging seas
You walk with me through fire
And heal all my disease

I trust in You
I trust in You

I believe You're my healer
I believe You are all I need
I believe You're my portion
I believe You're more than enough for me
Jesus, You're all I need

Nothing is impossible for You
Nothing is impossible for You
Nothing is impossible for You
Nothing is impossible for You

This is such a powerful song and now carries a whole new meaning. It's almost as if God was preparing us for these moments while she was still in the womb. Her love for this song and the others on the CD seems silly if you think about it...but she really responds to it.

Pray for Madelyn...Luke and I know she is going to get better...we just want her to make some progress. Waiting is hard to do.

*Kathryn

Saturday AM Update

After an emotional night (to say the least) Madelyn's respiratory rate is finally steadily below 100. We are told that the normal respiratory rate for newborns is between 40-60. Madelyn's was hanging out between 105-117 throughout the evening and she was on anywhere from 35%-42% oxygen. If her rate touched 120 they were going to transfer her to the NICU at TMFHS (which is thankfully right across the street). Her respiratory rate is right around 99 (but we are still celebrating anything that is not 3 digits!!) and she is on 36% oxygen. They have stopped trying to ween her off the oxygen as every time they attempt this her condition seems to worsen rather quickly. She is in great hands. Her day nurse was pretty much a God send. Madelyn is the only one in the special care nursery here, so she got some great one on one attention!! Tonight, her nurse has been just as vigilant. She has allowed Luke and I to change a couple of her diapers...this girl has pooped and peed A LOT! Praise God for dirty diapers, right?

Madelyn must have known we needed a reason to laugh because the first time her daddy tried to change her diaper she gave him a big present to clean up. He opened the diaper and said "goo...what is all that?". It was rather humorous. Apparently none of us warned him about the "tarlike" consistency of newborns first diapers. I laughed so hard as Luke attempted (heavy emphasis on attempted) to change her diaper.

We are confident that Madelyn will be well soon. We know that she is in great hands. We are sure that our God is in control. None of that makes it any easier to watch our little princess struggle to breath under an oxygen hood with wires sticking off of every part of her body.
At moments the urge to just pick her up is overwhelming. It is apparent that she knows our voices. Luke's touch and voice calm her like nobody elses seem to (probably because he spent the last few months talking to her through the "big dark hole" that was my belly button). She is already a daddy's girl.

We will know more in a few hours about whether or not the spot on her lungs is pneumonia. She will have an xray soon that should indicate this a little more one way or the other. Whether it is a collapsed lung or pneumonia, the doctors said her care would not really change at all. It will just be a gradual healing process.

I should be discharged some time today and moved to a "courtesy status" so that we can continue to stay up here with her. Her doctor had previously told us she would be going home on Sunday at the earliest. This was before she was put back on oxygen. We are learning patience as this is something that cannot be rushed.

We are SO thankful for our amazing family and friends. We have been so encouraged by the steady stream of visitors, flowers, phone calls, facebook messages, emails, and love that has been shown to Luke, Madelyn and I. We are blessed to have you in our lives and we thank God for you.

Pray for Madelyn's continued progress. Pray for our patience. We are anxious to hold her in our arms, free from monitors and bandages and IV's (heck...I'd take holding her with all of that on her at this point!!).

*Kathryn

Friend Counter