Best Costume Awarded

This is Master Brody in his costume. Awards are usually not presented to the NICU, but today an exception was made. We won an embroidered WV Children's Hospital blanket. Brody wanted to dress as his favorite MD, Dr. Pete Yossuck (We love Dr. Pete!) This was hard to accomplish because Dr. Pete is quite a fancy dresser and he loves his Italian leather shoes. Brody was dressed before rounds so Dr. Pete was sure to see him. There was a host of people in our room waiting to see Dr. Pete's reaction. It was alot of fun. Plus Brody shared a pumpkin full of candy with the unit. I even made an ID badge for Brody with a picture of Dr. Pete I pulled from the WVU website. I couldn't find clothes small enough so my little man is swimming but still sooooooooo adorable.

Be sure to notice the "Italian Leather" shoes, lol, and his mini name badge.

Dr. Pete's reaction! He was a little shocked but he recognized the compliment and was appreciative and a good sport. We had the entire 6th floor buzzing. In this picture you can see Brody's "Doctor Kit" on top of his isolette.

Brody is still doing very well on the nasal cannula. He had a good day in spite of his mother playing dress-up with him.

Round 5

Let's give it another try. Today Brody came of the C-pap for another go at breathing on his own. He is doing great as of 9:00 pm this evening and showing great signs that this time will be the one. He is going to have a special costume for tomorrow (be sure to tune in for pic's) and is continuing to get awesome care. As for Deedee and I we are holding steady. God has been so good to us this week, in spite of a bad weekend we have gotten to meet another wonderful couple that has came over from Parkersburg that is currently trying to stop her labor as she would be only 26 weeks at this point. We have reassured them that the NICU can handle them but we are praying that the delivery team will be able to hold he out at least 4 more weeks. Also Sunday one of our teen boys accepted Christ as his Lord and Savior and tomorrow we may get to witness a new friend of ours confess Christ and be Baptized. This is always for us an amazingly Joyful time. So we have much to be glad about this week. By the way one of may favorite conversations about Jesus is this. He is called Lord and Savior, did you know that you only get to pick one of them? This is what I mean Jesus is Lord of all whether or not all acknowledge him makes no difference he is still Lord. That was decided by God. We do however get to choose him as our saviour. I pray for all reading this that you have acknowledged him as both.
Goodnight from Brody's Daddy.

Better Day :)

We just got home from seeing Master Brody. Much better day today, thank you for the prayers. I will see during "rounds" tomorrow how big of a set-back this is. After his 2 transfusions he is breathing sooooooooooo much better. No more spells. We won't know til tomorrow afternoon about the infection.

Rough Day

Not much to say today....we are so tired. Brody had a bad day. I praise God that Brody had such a wonderful nurse (Erin)to take care of him today with all of these changes. He is off of the nasal cannula and back on the CPAP mask. He is getting another transfusion while I write and will get yet another in the middle of the night. His oxygen level is consistently higher than it has been in weeks. With the CPAP his reflux is worse but they had to do it because his spells were so frequent and bad this morning. His central line in back and he has already had another round of antibiotics in case his bad spells are due to an infection (again). We won't know about the infection for 24-48 hours because it takes time for the cultured blood to grow. If I sound disappointed, I am. Today has set us back 10-14 days. That's 10-14 days longer before he comes home. That's 10-14 days longer before we see how he sucks-swallows-and-breath, a big step in the life of a preemie. The high settings of oxygen and the higher assisted breathing (although is keeping him alive) comes with greater risk of consequence. Like detached retina and Chronic Lung Disease. His seasoned nurse tonight, Michelle (who we have had before and love), says if she had to bet, he will be a new baby by morning after he gets this blood. I pray she is right. Therefore, I sign-off disappointed, last night while his daddy was holding him, Brody sucked on his pacifier, digested food through his feeding tube, and breathed. I was so hopeful that we would be attempting bottle feeding by the end of the week. The NICU Roller Coaster - whattaride!

Joy and Happiness

Have you ever seen what Joy looks like? This is one image I never get tired of looking at. (By the way for all of Deedee's fans it's the substitute tonight. I am always a little embarrassed to post any coments in light of how amazing Deedee's writings are but here goes). Back to the image you may think that the Joy I am speaking of is the look on Deedee's face as she is loving on her baby boy, but the Joy I am speaking of is from my perspective looking on my two Perfect gifts from God. They both just captavate me. I have been trying to explain to Brody how much fun he is going to have growing up with a mom as creative as his. She will make so many things fun that he will be happy most of the time but Joyfull all the time. Am I confusing any one yet? Let me elaborate, Happy is a feeling that comes and goes, Joy is built to last forever. Like for example so many people with the best of intent have said how happy they are for us. I would like to explain that Deedee and I are Joyfull that we have a Son but we are not happy that it has been such a rough start. We are Joyfull that he is doing better but we are not happy that he still has a few apnea spells. Does that make any sense at all? We are Joyfull in the Lord so It does not matter if we are Happy. Don't get me wrong we are doing well and having some good moments but I guess I want every one I know to spend more time pursuing Joy and less pursuing happiness. Happiness is fleeting, its a moment, Joy is permanent even in tough times I can rejoice in the Lord because I have Joy in Him. Nehemiah said, "Go and enjoy choice food and sweet drinks, and send some to those who have nothing prepared. This day is sacred to our Lord. Do not grieve, for the joy of the LORD is your strength."Nehemiah 8:9-11
See the choice food and sweet drink would bring happiness but the Joy of the Lord is my strength and that is permanent. While I may grow weary at times I rest in knowing that I can call on the strength and Joy of my Lord. So I don't even have to chase happiness cause I have Joy. As Ed Young said in his latest book I hope it becomes "outrageous, contageous, Joy."
I hope you all catch it, cause it is the only way real happiness can come any way. I am sure I have everyone confused and saying "please give us Deedee back:>)" can't say I blame ya,
but just know we are doing good and Honestly we are Joyfull, just not always happy and that is ok. We know the end of this long road is near and it will all be good, He is going to come home healthy and God has us covered.
He did well on his canula again today had a few spells, and my mom got to hold him. She was sighted floating back home at around 30,000 feet. I am quite sure she has not landed yet.LOL
Feeds still doing Ok mild reflux, and as always receiving excellant care. That NICU team is outstanding! Thank God for them all. Pray blessings on every one of them.
Thanks to all of you for your prayers. May you have a JOYFULL day in the Lord with that wondrefull Image of Mother and Son so in love.
Brody's Daddy.

Brody's a Celebrity

Fulfilling on Brent's promise here is the story on Brody's big celebrity interview. We were asked yesterday in the NICU to be interviewed for the upcoming Children's Miracle Network Telethon. So with Brody in my arms and our prized prayer blanket draped beside us we answered questions about our experience in the NICU at WVU. The telethon will air in December and we will receive a copy in the mail of our "spot". Brody did very well and wasn't nervous at all. His super-sweet nurse, Tara, brushed his hair with his soft toothbrush (that's what they use in the NICU). And he had his CPAP mask off and the cannula on so more of his adorable face was seen. I will let all of you know when to watch for our debut. Those of you that "know" me won't believe it but I was so excited to show off my new son that I didn't even think to check my lipstick. I will probably look like a ragamuffin but Brody will be adorable. They may call us after we get home and do a follow-up interview also.

Today......Compression feeds moved to 1 hour and 1/2 from 1 hour to help with the reflux. Doing ok on nasal cannula not great. But he is getting stronger just by doing it. No other changes today. I got to hold him today for a long time and it was awesome (we are not going to get anything accomplished when he gets home except snuggling).

Cannula Ready?

Little Man is on the cannula today. He did really well this morning then is having to work a little harder this afternoon and evening. If he can just do it through the night and tomorrow he'll have it whipped, because he will get so much stronger in just those two days. His weight stayed the same. This is the part where we just wait and see. It's kinda numbing to be inbetween this outcome and what comes next. We believe he is going to do great but again we just have to wait and see. Many of you have ask when does he get to come home. To answer that is not available at this time as his Doc's are not even talking about a date, it's more to do with when he can breathe, proccess food, then gain some more weight. There are a few more battles to win and a few more giants to face but no time line as of now. We just wait and see. It is a building process that requires him to breathe on his own first so this outcome is crucial to the next step.
We will have more to post in the morning as we are just about completly whipped for tonight. Be sure to stay tune for Brody's first big celebrity interview. But again Deedee will tell you all more tommorro. Signing off for tonight with this verse from Hebrews 12.

7Endure hardship as discipline; God is treating you as sons. For what son is not disciplined by his father? 8If you are not disciplined (and everyone undergoes discipline), then you are illegitimate children and not true sons. 9Moreover, we have all had human fathers who disciplined us and we respected them for it. How much more should we submit to the Father of our spirits and live! 10Our fathers disciplined us for a little while as they thought best; but God disciplines us for our good, that we may share in his holiness. 11No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.
12Therefore, strengthen your feeble arms and weak knees. 13"Make level paths for your feet,"[b] so that the lame may not be disabled, but rather healed.
Good night from Brody's Daddy.

Watching Him Grow

Master Brody enjoyed time in his daddy's arms last night. He was so adorable, we really enjoyed our time together as our little family :) We noticed small changes that weren't apparent even last yesterday. When he is awake and looking around, it is like he is exploring. When he sleeps he is more peaceful. He is maturing right before our eyes. I know this might sound weird but he is more like a baby, he even got a little fussy when it was time for his milk to go into his feeding tube. Poor little guy these past weeks was struggling for almost every breath, his brain not formed enough to make him remember to breath. He has matured from basically a fetus to a baby right before our eyes. The growth changes are amazing, not just physically but mentally also. He has gained weight, grown in length, his brain tells him now to breath (almost all of the time), that he is hungry, that he is mad or uncomfortable, his little face is more defined, his ears aren't as flimsy, his skin isn't transparent anymore, his eyes aren't just open but looking around, he has an awareness that he didn't have before.

But if those exploring eyes are open and visiting hours are over Mommy's heart breaks every time I walk out of that door. The feeling to grab him and run has crossed my mind more than once but since I have enough since to know he needs the care he is receiving to breath, I don't . But I want him home so badly. The feeling of helplessness is overwhelming. And him being in the isolette makes him just out of reach. The times I have just longed to lean in and kiss his head but can't are uncountable. Do you remember the old movies where the little kid sees the perfect Christmas gift in the toy store window, usually a train or a dollhouse? I feel like that. He is there, I can stand and stare at him but I can't "play" with him. Sometimes nurses are great about including "mom" other times not so much. I never want to interfere so I don't change diapers, bedding, or clothes unless I'm asked to participate. These nurses have an amazingly important job they may have to hurry to do these "tasks" to do something more life-saving for another baby. To me they are not tasks, it is caring for my baby, and I can't do it. I want to help, I want to fix it but I can't. I sit and stare longingly at my "train".

But as a parent I am learning this lesson about 13-17 years early. Do you agree teen parents? Don't you watch longingly and want to fix the mistakes your kids make? Don't you want to change their clothes into something less trendy. Don't you wish they would eat veggies instead of chips? I remember my mom during my teen years advising; "It's not what I would do." It's not what I would say." "It's not what I would wear." And me thinking, "She doesn't understand." Then having to admit (to myself only) that she was soooo right. And my daddy's favorite response to anything is, "Whatever" I believe it's because of raising three teenagers. And don't you think God sits in Heaven and wants to stop us from making mistakes, especially the ones that can crumble our lives? But He doesn't. He lets us falter, learn, and grow. So I sit and watch Brody in the isolette falter, learn, and grow.

Update:
Brody gets fed 30cc (1 ounce) now every 3 hours with a pump that takes an hour for the feed to go in. Today they are stepping up the pump, it will take 30 minutes. His reflux is doing well with the meds so prayerfully he can handle stepping it up. His lungs still sound good, no fluid build up and he isn't getting puffy again with fluid retention. A relief!!! They are lowering his settings a little more on the CPAP today and scheduled to try the nasal cannula tomorrow. God will make sure he is ready!! Brody needs to take this next step. With the fluid gone I think this is a real weight - he is up to 3lb 12oz. Yesterday was 5 weeks. I am sorry all I have is old pics, that he doesn't look like anymore and I keep forgetting to take my camera (I am not a picture person). I will take tons of pictures today for your viewing pleasure....

Facing the Giants

Brent and I watched the movie Facing the Giants shortly before we found out Brody was on the way. (If you haven't seen it, buy it.) We watched this movie cuddled on the love seat and by the end we were holding on to each other and crying making promises to each other about our commitment to Christ. Before watching this movie, I had always hung tight to praise God in my storm, through the heartaches of infertility and other issues with my health. But after this movie Brent and I both committed to God that we would love Him no matter what. No matter if we never conceived again. No matter if we had yet another miscarriage. No matter if we never had a child. No matter if my Fibromyalgia was healed. No matter if something else happened in our lives. We would love God, not only praise Him but truly love Him. We then had to share this movie with our Home Church Family. It was humbling to hear Brent give our tearful testimony about our commitment. There is something so powerful about a public commitment, I think that is why God asks us to do this when accepting Him as our Lord and Savior.

We have often thought about writing to the small church that wrote and produced this life-changing movie. This movie had to be packed with prayer because it changed our life. After 3 1/2 years of waiting to conceive we did, and after 4 miscarriages Brody's here. Why? I don't know. Is it because we made a vow he had been waiting to hear from us? Is it because we finally truly submitted to His will for our life? Is is because we sincerely put Him first? or Is this how God had it planned from the beginning? Only God knows. But I do know that my heart changed. Many storms may come into my life and I will praise Christ in the midst of them but more importantly I Will Love God - No Matter What!!!!

Just as David faced Goliath and triumphed, just as we have faced infertility and won, Brody will face the nasal cannula this week and succeed. Our little man needs to progress to this step. I know God will grant Brody this goal this week. He is doing so well today. During rounds Doc Pete said to change nothing today because Brody was resting so well and all of his numbers were good. Maybe the rest today is to be ready for tomorrow - maybe we will give the nasal cannula a run for it's money. Please pray that our little guy takes this important next step.

Pics of Breezy and his "Man Cub"

Here's the pictures I wanted to share with you last night. Aren't they both so handsome? I thank God daily that for both of them. I am truly thankful for my gifts. I will cherish the day I can look into our field and see Brody and his daddy riding the tractor, I'll share that picture too someday. Brody was an adorable bundle of joy today, we both go to hold him again.

He's So Cute

We didn't fight game day traffic and stayed home until after shift change. We got right in to see Master Brody and his nurse was so apologetic because she didn't think we were coming in because of the game and she didn't wait for us for his bath. No worries. I'm just glad the little man got clean. Although bathing him is sheer joy, I know it's not his last (until he turns twelve and goes to camp for the week). But we did get to dress and bundle him. He was wide awake for a little while and his eyes looked brighter to both Brent and me tonight. Maybe because we hadn't seen him all day and were having Brody withdrawals. No reports today in his health or care, which can be a good thing. He is the same as yesterday, just cuter.

Speaking of cute.........do you all know Brody's Dad? I love that man, in case you hadn't figured that out. I love him, I love him, I love him!!!!!!! I was thinking of him when I wrote the title tonight. He works so hard for us yet can't wait to see Brody, sometimes I think the only way I'm going to keep up with his long legs walking across the hospital parking lot is to fly, he is so anxious to see his "Man Cub". I feel for him during this because he is so torn between wanting to spend time with Brody and needing to provide for us. He is going to be the kind of daddy every little boy dreams of and every young man admires. So many have said, "Deedee I'm sorry but Brody looks exactly like Brent." Which I am cool with that, I love Brent, and some day some girl will fall in love with the same joyous mischievous grin in Brody that knocked my socks off 15 years ago and still makes my heart do flip flops. Looking like his daddy is a good think cause his daddy is f-i-n-e.

My biggest secret (not anymore) and one true fear is that I will have to live on this earth without my Breezy. (yes Breezy for those of you that don't know Brent's nickname) He is where I turn when I need a problem solved, when I need to vent, when I am sad, when I have something funny to share, when I am hurting, when I am happy, when I want to do something crazy and fun, when I want to rent a movie and eat pizza. He is my best friend!!! I can't imagine not having this marriage, not having this partner, not having this life of joy.

We have met so many couples in the NICU, most of which aren't married. I can't imagine going through this time without my soul-mate. I pray tonight for all of those we have met who need God in the middle of their relationships. These couples may know happiness but they don't know joy, that kind of joy that comes from Christ in a covenant relationship. And there is such a difference. I pray that their relationships become a Christ-like role model for their growing babies.

Okay, so bummer. The picture thingy is down on blogger (picture thingy is the technical word). I had the cutest pic of my two men to share but til tomorrow..................

No Storms Today

Our little man was started on Zantac to reduce acid and another med to move his food faster. His IV blew and he had only one dose of antibiotic left so he didn't have to get another one, thank heavens. His acid reflux seems better. He is on day 2 of his Lasix. And is still resting well dressed and bundled. No big spells (apnea, bradycardia, or saturation) since midnight, Praise God. However, he probably will come home (in addition to his apnea monitor) with a "slope & swing". It is a big foam wedge that keeps him elevated to help the reflux. He will rest in a swing that is anchored to the crib so he doesn't slide off of the wedge.

It has been a good but busy day. And once again God has been faithful; not only by protecting and strengthening Brody but also by keeping the storms at bay. Our 3rd Annual Sporting Clay Challenge was today for our non-profit organization, Community First. It was another very successful shoot and fund raiser. Proof that God listens when we Pray Big and when we Pray Little. It is my hope that while my being is wrapped around Brody getting strong and healthy that I continue remember to include my Heavenly Father in all of my life.

October 18th - woohoo!!!!!!

Well Master Brody is having a rough time digesting his food. His acid reflux is causing him more problems. He may either have reflux because of the constant flow of air from the CPAP or it is a common issue with babies that are born as premature as he was or unfortunately inherited from me but mine didn't bother me until much later in life. Trying to help, his feeds have been slowed to process over an hour instead of 20 minutes but still during his feeds his heart rate gets way too low and his saturation level also plummets, that's when we have "little boy blue" - definitely not good. And every time these spells happen he has milk in his mouth. (which he is still being fed from a tube directly to his tummy - milk shouldn't be in his mouth) We will see what Dr Pete wants to do about it in the morning. He only has one more day of antibiotics. And he started Lasix today for fluid retention. The apnea spells are few and far between (yet increased desaturation and bradycardia spells). He is keeping his temperature up and is still bundled in a blanket, he seems to rest better like that. Typical day in the NICU, two steps forward one step back.

But we will celebrate today!!!!!!!!! October 18th - Brody is one month old! What an accomplishment. Especially when I think that I had 4 previous miscarriages, that it took 3 1/2 years for him to be conceived, and that the mortality of the pulmonary hemorrhage he had is 30-40%. Wow, my God is amazing! Thank you Father for our son.

Its Never Enough

Deedee and I both got another night of delight in that we both got to hold our son again!! It is such a comforting feeling to have him in our arms and the feeling is so natural even in spite of all the wires tubes and lines. It is odd how quickly we all can adjust to our new surroundings and find a way to be comfortable with the situation at hand. The one thing that has never gotten comfortable however is walking out of that room. It doesn't matter if we are coming back after the one hour break or leaving for the night it never feels right to walk out. We trust in God to look after him always and the entire staff at Ruby shows how much they care and he is in great care. But I just can't adjust to walking out of that room. Something deep inside screams, "Don't turn your back on your son"... No matter whether I get to hold him for ten minutes or half an hour (which is a long time in the NICU world) it is never enough..

I think in some small way I am beginning to understand what God must have went through when He saw His son, my savior, on that cross. There was Jesus hanging on that cross, that's when it became my life support. My God could not reach down and take Him off untill it was completed for all of mankinds ultimate good. Then as if that wasn't bad enough, when the full weight of my sin was on Christ, God had to turn His back and for a brief moment walk away. Even though He knew He would see Christ again it had to be agonizing beyond any words can describe. The feeling that I get when I have to walk out of Brody's room may compare. I don't know for sure all I know is that it is Hard. I can't reach in and do anything. I am fully dependant on God right now and all of Brody's caregivers. This is really tough on someone like me, who has been used to fixing things, solving problems, and just making wrong turn out right. I have to acknowledge fully God is in control and I must cling to Him to carry us through. If this feeling I have is even some micro percent of what God felt when seeing His son on the cross for me, and Him knowing that His son must do this on His own and that He would have to turn His back, even for a moment.... It has been one thing to think that I made Jesus go to the cross but I made a father turn his back on his son. I say over again with a fresh appreciation for what I put my Lord through, I am sorry! I am sorry, please forgive me. Putting my Lord on the cross has always made me feel regret for my sin, but His father having to turn His sight from His son because of me is overwhelming now that I am a father. If it weren't for knowing that I will get to see my son again I don't think I could leave at night, and if it weren't for knowing that I will see my Lord and Savior to thank Him in person it would be hard to accept the forgiveness. But it is that acceptance that will carry me through and Living for Him is the only gratitude that He asks. Seems small in comparison.

Sorry I just realized how long I've been "preaching". How about some updates: Brody went back on the CPAP as he still is not ready for the nasal cannula. Still a few bad apnea spell oh how I hate those. Seeing your son turn Blue is not the color for little boys. He is tolerating his feeds well but they had to remove his Central line (aka the pic line) due to some leakage, this means back to IVs and more discomfort for him. To help with the acid reflux they are putting his feeds in slower. And he is very active, so since his weight is up, they put clothes on him and bundled him, thinking he may feel more secure and get more rest - hopefully causing less apnea. He also had some lasiks today to help with some fluid retention.

If you all could see him you would be so proud of this little fighter and how patient he is with all this discomfort. I also am beginning to understand how God looked down on His son and said the most well know verse in Scripture. "This is my beloved son in whom I am well pleased" and on that final day when He looks at us and if He sees His Son standing there beside us saying, "this one belongs to me" how all God will see is perfection and be able to say "Well done my good and faithful servant". Oh how I long to be sure that is said of me and I pray every one of you reading this longs for the same said of you.

Thanks for all of your prayers and putting up with my preaching tonight. My therapy at your expense. :>)

Brody's Daddy

Sleeping Soundly

Tonight Brody was sleeping so soundly. In my arms I might add, which means I will sleep soundly too. Somehow I feel complete with him in my arms and going to dreamland will be a little easier with the memory of how he feels so prevalent.

He did have an apnea spell while we visited and a big desaturation spell too. Not fun for anyone. His feeds have been bumped to 25cc. He is doing well with it except for the occasional spit up. He may have acid reflux or it may be because of the CPAP blowing air in his belly. Tomorrow we are removing the CPAP and trying the blended nasal cannula. He tried the cannula twice last week and said he wasn't ready for it. I feel good about trying it tomorrow, I think he is ready. The apnea spells he has had recently have been during a feeding so without the CPAP and the extra air I believe his apnea spells will be better too. Now this is mommy intuition, I have not earned my nursing degree the 4 weeks we have been in the NICU (although I have learned alot) And did you catch I said 4 weeks? Yep! Brody is 4 weeks old today. We are 6-8 weeks away from coming home. I can't wait for him to live with his mommy, daddy, and Maddy.

Holding Pattern

I am so sorry to those of you that checked the blog all weekend and I didn't post. We were at a holding pattern and I have been updating the last thing before going to bed and sometimes it's so late. So please accept my apology I didn't mean to worry anyone. I will start posting earlier in the day so if it is a late night you don't get left out.

We are still at our holding pattern and he looked so cute this morning. The infection still seems to be all gone but he is still taking the IV antibiotic every 12 hours probably until Sunday. His feeds are at 20cc every 3 hours now with an added fortifier to add calories but not volume. The IV nutrition is scheduled to be removed tomorrow. The apnea spells are less and less, he was having 7 or so a night, and it keeps getting less each night. Last night he had 2 spells and I talked to his nurse at 4:30 and he had one since I had left at noon. His Dr reminded the group in rounds this morning that although Brody looks like an older baby (weighing 3lb 8oz and 15 1/2 " long) and he has been in the NICU almost 4 weeks he is still so young. He was born at a gestational age of 27wks 5days. Even though he hasn't accomplished the nasal cannula yet his Dr thinks he is doing great especially considering Brody is stil only 31wks 4days today (just think he still has 8 wks 3days until he is supposed to be born) and he has had not only the infection but the pulmonary hemorrhage too. Your prayers are strengthening our little guy and we can't thank you enough!!!!!!

I have been perplexed at how many people have told me how radiant I look since I have been expecting Brody. I believed it was the "pregnancy glow" thing. I even had a dear friend accuse me of having plastic surgery. But what has been totally weird is it hasn't stopped since Brody has been born. Because, as you can imagine, I don't feel like I look that good during this time nor have I been my primping perfect self. So I have wondered and even voiced that I thought the compliments were coming from my family and friends being loving and supportive. Then tonight at home church we read Psalms 34. Chapter 5 says "Those who look to Him are radiant..." (I, unbelieving, have been told that I still look radiant which I responded maybe because I am still supposed to be pregnant) But tonight it popped in my head like a light bulb. Maybe the look others see in me is Christ. I have been so focused on him that like the sun reflecting off a car window, Christ is "bouncing" off of me. I would love to tell you that I am focused on Him as a deliberate act but I can not. I am focused on Christ like a tight rope walker. If I look away I might falter.

During our pregnancy I didn't know how far we would get; if this time we would actually have a baby or would it end in sorrow yet again. And most don't know but although I felt great during the pregnancy it was not without complication. So I daily focused on Christ, because if I lost another baby I wanted Christ right there. I was also afraid and I knew if I focused on Him and His word I wouldn't be afraid. I held tight to 2 Timothy 1:7 "For God has not given us the spirit of fear; but of power, and of love, and of a sound mind." I printed it and posted it on the fridge and read it ALL the time. I knew I couldn't get through another loss without grasping to His loving arms.

Then since Brody's arrival I have kept looking at Christ because I want power, love, and a sound mind. Unlike the miscarriages, this is new territory. I don't know what to expect. I don't know how I feel from one day to the next. But I do know I can't do any of it without the support and love from my Heavenly Father. If I focus on Brody I won't radiate Christ I'll radiate fear, worry, guilt. God gave me this verse tonight, it was something I needed to hear. I needed to know to keep on keeping on. If I continue to focus on God, my tight rope walk will be successful. I will make it to the other side safely and God is there waiting to receive me.

Tonight Master Brody is adorable. I know you are shocked to hear his momma say that. We are kinda on a holding pattern right now. The cultures are still being watched but are "clean" for no infection. He is still receiving his antibiotic and will do so for 10 days after a clean culture. His central line is back in so less IV sticks will be needed (which makes everyone happy). His first central line went in the left side of his head so he had his head shaved then with the infection it was removed. The new central line is in the right side of his head so head shaved again. He will come home with a mohawk. (I know his cousin Amanda will love it) He is still on IV nutrition and they are increasing his feeds. We tried the nasal cannula again and again Brody said "not yet" by experiencing more apnea spells. So our goals this week are to accomplish the nasal cannula, tolerate more volume of feedings and remove the IV nutrition, have less and less apnea spells, keep the infection away, and grow. Lots of work for such a little guy. Last night we couldn't have our Saturday night bath date because there was no hot water in the NICU. So we had a bath date tonight. Well he wasn't tolerating his bump in feedings and just as I would get his mouth, chin, and shoulder clean more would come back out again and again. Then I took off his diaper to clean his teeny tiny tush and legs and he didn't squirt on us but thank goodness we had a pad under him because he pooped. We were like the Bad News Bears no matter what batter we tried we struck out. Not to mention his bed is heat sensitive so as he gets colder the bed heats to keep his body temperature regulated and he was cold from being wet. And we are doing this through the portals.............Brody, Brent, and I were all worn out by the time Brody was clean. But we succeeded. I promised him I would make bath time fun at home. Until then we will gladly accept portal baths.

Thank You

Tonight since I am sitting on 2 good days in a row with our little man I feel like I can breath and think (since baby is breathing, mommy can breath). The cultures from the spinal tap and the last blood test are clear- no infection growing (but they will be watched for a total of 72 hours but so far so good). He has had only 3 apnea episodes since midnight. He is tolerating his feeds so well the MD moved him from 2cc every 2 hours to 5cc every 3 hours. He has gained weight and grown in length. I am so proud of how hard he is fighting. So tonight I want to take a moment to reflect on Your goodness.

We are so blessed, by not only our families but also from dear friends, to great neighbors, and a loving church family. I can't say thank you enough for ALL of the gift cards. We usually go see Brody about 5:30 then go to dinner during the 7 - 8 pm break then back to tuck him in and the gift cards have been a tremendous budget relief, and great idea on the Sheetz gas card. The food, flowers, cards, and gifts make us feel so loved. And it is rare that when I return home there is not a message of prayer, concern, or love on the line. Everyone has truly let us know we are loved and not alone.

Please accept my apology that I have not gotten return calls made or thank you cards sent. Some days the schedule is crazy; decisions need made on Brody's care, insurance needs processed, time needs spent with Brody (usually just staring at his cute little face), and meeting the need to help where I can with his care, then I need time to rest, mend, and heal from surgery. So know that I greatly appreciate the well wishes and concern and just hearing that expressed in your voices has warmed my heart immensely. I am so glad that we have the technology of the internet. That everyone can get accurate updates on Brody makes me so happy. Please feel free to give the blog site to anyone. Brent and I check for your comments a couple times a day. Your support lifts our spirits. (Great idea on the blog Megan, we owe you.)

So thank you, thank you, thank you!!!!!!!!!! We love you!!!!!! I can't wait for Brody to grow-up with this much love and support. He is already so blessed with your prayers and love.

Hope

Brody has had a pretty good day (a wheeeeeew day on the NICU roller coaster) . This morning they removed the CPAP mask and put him on a nasal cannula. He "told" them by several episodes of apnea that he wasn't ready for the cannula, so the CPAP went back on his cute little face (stressing little). I hate the apnea episodes, 5 seconds is the longest time in the world when your baby is not breathing, but we both made it through the morning. And he was very tired this morning, I think the cannula made him work too hard. Then tonight he was his wiggle worm self. From 8pm to about 10pm he was awake, alert, and active. It made my heart not only happy but lighter after the rough week we have had. So thank you God that small joys exceed great sorrow by leaps and bounds. (Kinda like when the joy of having a child exceeds the pain of having a child)

Therefore, I thought tonight was a great time to share with you a poem I wrote ten years ago when I needed an extra measure of hope. Without Christ, without faith, hope is useless and tonight we sleep with hope-filled images of Brody in our hearts.

Psalm 33:22 "Let your unfailing love surround us, Lord, for our hope is in you alone."

Hope

I see the light shinning in the window
It is a bright beam of hope
Hope for today, hope for tomorrow
Hope to forget all of my sorrow

The new day is bright
Tomorrow is brighter
My heart was heavy
Today it feels lighter

The sun is warm on my face
I feel alive again
Today I take small steps
Tomorrow I win the race

Deedee
January 1997

Sleeping Baby.....Oh how sweet.

Isaiah 40; 28-31

The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall;
but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Tonight our little guy was just knocked out. It may be the deepest sleep he has had. He has been messed with all day; several new IVs, the PIC line removed, a spinal tap, blood cultures, platelet test, the list goes on...he was wiped out. He normally opens his eyes when he hears his Daddy's voice and tonight he tried to open one for a split second but couldn't do it. Then back to a deep sleep he went. This verse came to Brent's heart and he shared it with me. In the spirit of rest is when God will take over and give us His strength. We are as tired as Brody looked. We trust that God will mature and strengthen Brody's body and He will also renew our strength. We are hoping in the Lord to renew our strength, our entire family, as we rest in Him tonight.

Today the PIC line was removed to try and halt the infection that Brody has in his blood system. The spinal tap was performed to confirm that this infection has not moved to his spinal fluid and his brain. His platelets are good. He has gained weight. And we were really encouraged to see how well he was resting after such a "not so nice" day. After all there is nothing as majestic as a sleeping baby and there is definitely no prettier baby in the world than your own.

The NICU Roller Coaster

When I lived in Georgia I recall a bridge with lights above the 6 lanes. The lanes changed directions according to the need of the flow of traffic, not by time of day. Needless to say it was confusing, exciting, and a little scary. While approaching the bridge to see if there was a red X or a green arrow I would feel a little jittery not knowing what to expect. Maybe I could stay in the lane I was driving or I may have to move over 4 lanes, ahhh. Quite frightening and exhilarating, a lot like a roller coaster.

Riding the elevator up to the 6th floor is like being a block away from the bridge. Walking down the NICU hallway is approaching the bridge. Walking into the NICU is looking for the light in my lane. Entering Brody's room is preparing to change lanes if necessary. Reading the nurses face is relief or scramble.

We have had a "change lanes and back again" kind of day. We (my mom & I) couldn't get in to see Brody this morning because they were collecting more blood cultures to check the level of the infection. Then when we did I should have seen the red X when our nurse said, "The Dr. is going to come talk to you." But I just stayed in my lane. Unfortunately the talk with the Dr. didn't go well. She is a resident that needs to work on her communication skills a bit and I am a new mommy that needs things explained in detail. Needless to say I called Brent at work and he came quickly and drove me "across the bridge". Basically, they would like to do some more tests to check the severity of the infection Brody has contracted. Upon Brent and I discussing in depth our options, complications, and treatments with our personal NICU nurse (Susan Neptune) and the attending Dr. the testing is waiting until some more questions are answered tomorrow.

Then before we left we got AWESOME news; the PDA is closed. It closed with the first round of medication and without surgery. Thank you Jesus!!!!!! This is the NICU roller-coaster, up down and a loop de loop in between.

Today as I was remembering the crazy bridge in Georgia I thought, "Isn't that bridge like the signals we give God about our life?" When we are doing something we know we shouldn't or when we are pridefully accomplishing life we put up a red X . Yet when we need Christ or are having a moment when we feel close to Him we exude the green arrow. Can you imagine being God and having to be either permitted or invited into our lives? I pray that as I ride the NICU Roller Coaster and decide which lane to choose, my signal to Christ is a green arrow inviting Him drive my car. But then again I pray I give Him the reign not only during this ride but for all of my days and I pray that for you too :)

Dear Brody from your Mom and Dad

Deedee and I found this video online the other night and It says all the things that Brody is and all the things we pray he will become. We hope you all enjoy watching it and I think you all will agree this is a pretty complete list.

As for updates our little man has still had some spells of "forgetting to breathe" but was really peaceful tonight. He has picked up an infection and will be on an anti-biotic for the next ten days. We are awaiting tomorrows Echo as to see the condition of his PDA and are praying tonight that it is closed and with that behind him and when this infection clears that he will begin breathing much more regular.

It has been quite a blitz this week to say the least. Thanks to so many of you that have helped Deedee and I this week. A special thanks to my niece Megan for creating this Blog. So many have enjoyed having the access to him and it has given Deedee and I a source for venting and connecting with so many of our friends and Family.

Bath Night

My kids laugh at me when Brent asks a question in class such as, "What is something that you had to work hard to accomplish or earn?" I answer, "Our windows in our first home". That is such a weird answer to a teenager. But those of you who have had old homes with cold energy guzzling windows can relate. I have always been one to appreciate the small joys and accomplishments in life. Although bathing my newborn through portals in his isolette is not what I ever wanted to do, nor is it easy, it was still fun. So tonight we will celebrate small joys.

This is the second time I have gotten to help with his bath. And I guess since I was seasoned at the "portal incubator bath" I did not assist the nurse, she put me in charge and Brent assisted me. LOL. And Saturday night is a big night in the NICU because we get to use soap. He was really good, Brent I mean. He wasn't a "Scared I'll break him Daddy" at all. It was a team effort that we accomplished with help from the nurse then the respiratory therapist because Brody is fast and he can pull the CPAP mask off too quickly. And of course like most boys after he was all clean and the new diaper was almost on.....squirt, all over his clean self, Brody I mean. When we left Brent had read him a book and he was fighting sleep and losing, too cute.

This, the sprinkles on top, to end a great day because we both got to hold Brody today. It was awesome, of course. Since his weight is up we didn't do Kangaroo Care but he got bundled and we held him where we could see his face and talk to him. He is trying so hard to get his thumb in his mouth but he ends up sucking on all his fingers and spreading his lip balm all over his face. Also too cute. He loved his Daddy holding him, they both were so peaceful.

So Brody learned today "This is what it is to be Held". Just lean back in your Daddy's arms and relax. Daddy's got it covered. I know that feeling being a Daddy's Girl myself. I know in the arms of my Daddy no harm can penetrate that hold. I am safe and protected in my Daddy's arms still today. I am so sad for those in this world who don't have that. It is hard for them to understand God's love because their idea of Father is so distorted. So my heart is happy tonight that Brent and I are both so blessed to both have had good Godly role models in our parents. I pray that we can be the nurturers, the teachers, the comforters, the protectors, and the role models to Brody that our parents have been to us. Thanks Moms & Dads!!! You all are the best!!!

This is What it is to be Held

Several years ago Christian recording artist Natalie Grant recorded one of my favorite songs. It's title is simply Held. Natalie told the story behind the song at Women of Faith. A friend of Natalie's wrote the song during a time in her life when she was totally at a loss of what to do to help her two best friends. One of her best friends had been waiting for a baby for years and had many miscarriages (a lot like us) she and her husband finally had their baby only to lose this baby to SIDS. The writer's other best friend's husband had been diagnosed with cancer. The husband passed away within the same 24 hour period that the baby died. This friend in the middle felt so helpless. The song she wrote (obviously inspired by the Holy Spirit) speaks of how God doesn't promise us a life free of pain but what He has promised us is a life where no matter what our pain He will be there, holding us. And sometimes when we are numb, when we don't know how to pray, when we don't know what to ask our Father, when we don't even know how to act, react or respond. God is there, Jesus is there, the Holy Spirit is there; interceding for us, directing us, holding us.

This song has inspired me to just sit and let God hold me in my greatest moments of sorrow; to be quiet and let Jesus intercede for me during my greatest moments of despair; to be still and let the Holy Spirit direct me in my greatest moments of listlessness. I found this song (or Jesus let it find me) during my grieving of my last miscarriage almost 4 years ago. God spoke to me through this song. It helped me heal not only from the last miscarriage but from the 3 before that as well.

This song has been a reminder to me these last few weeks of how God loves me. I am in despair, my life is chaotic, my prayers are so selfish. I am not giving back to God. I am not being a servant for Christ. But I am being held and that's all God asks of me, to let Him hold me, and I will. I know when any of my kids (you know who you are from Bryce down to Levi and all in between) are hurting I want to hold them, I want to comfort them and when I am pushed away I am crushed. And as you have probably guessed, ALL I want to do is hold Brody,although it's only happened once. I'm guessing that is how God feels right now. He loves me, and Brent, and Brody and we are being powerfully held in His loving arms.

I pray you all take the time to listen to this song if you can and remember to be Held in moments of despair. Because sometimes that is exactly what God wants for usand all He asks of us.

Brody's update tonight. He now weighs 2lb 12oz, can you say piggy? LOL He is doing well on the CPAP (oxygen mask). With his new blood (He received another blood transfusion last night, he was anemic) and caffeine he is having less apnea spells. He is almost done with the medication to close the PDA and the heart murmur so far seems less. He does, however, have an infection. So he has started a round of antibiotics. Up and coming tests.....Heart ECHO to see if PDA closed. Blood culture to see how fast the infection grows. Repeat blood test to check bilirubin numbers (he may be the "blue light special" again for a short period). He can't be fed while taking the medication for the PDA and being on the CPAP makes him work a little harder than the vent tube. Therefore, he may lose some of the weight he just gained. Tough week for Daddy, Mommy, and Baby but we made it (whew) and it's one week closer to gestational age which means he is maturing day by day.

Quick Updates

We are so sleepy tonight as is Master Brody so we will keep it short. Brody got another transfusion tonight and started on his first dose of Medicine to assist in closing his PDA. We are very hopeful that this will only need done once and that mondays echo, will show it closed. He was breathing very well tonight and looked the Best he had in 2 days. His nurses have all fallen in love with him and are taking such good care of him. I told Deedee that I don't know how royalty gets treated but I can not imagine it is any better. Since we checked in on the 16th till now the entire staff has been awesome. Deedee and I want to thank all of you for the prayers, cards and gifts it has been uplifting to say the least. Who ever got us the Starbucks card may I say thanks and "Vanilla Latte." Yummy!!

~~Brody's Daddy.

Brody's Daddy Speaks

What could I have possibly done to deserve this? This is a question that many would ask when going through all that Deedee and I have been through to this point. Do you know the entire story? If so you may want to skip to the bottom for the nightly updates. If not then allow me even with broad strokes to catch you up. In thirteen years of marriage we have been trying to start our family for 10 of those years. We have had 4 miscarriages two that required Deedee to undergo surgery. Deedee facing a scare 3 years ago that turned out to be a fluid cyst in a ventricle of her brain. Severe vertigo that caused her headaches and dizziness, and most recent a diagnoses of Fibromylgia causing her to have unusual and severe pain at times.
I have watched my wife endure the longing for our child for so many years and my knowing that all she ever wanted to be was a mommy. She has even stated that if she could ever just get to see one of her babies, or hold them just to know how they feel, then perhaps she could be content. Through all of this I have been in prayer asking God for his direction, his wisdom, help me understand, what is your will for us? Add to that the frustration of knowing what an awesome mom she would be, evidence by how the teens love her and most call her mom. It has certainly put me in a position where I could have said "what have I done to deserve this?"
What I want all of you to know is that I have asked that question, but not as most would think.
I look at my wife, who is My Perfect gift from God, my newborn son, my Man Cub. I see the radiance of Christ in him and in her love for him that was so instant. I see the strength of his Grandfathers in his will. The tenderness of his Grandmothers as he sleeps, and the outpouring of Love that our family and friends have poured out onto us. The support from our church family that comforts us both, and the loyalty of my "office family" that has covered me and allowed me to spend this time by my wife's side. Through this I look at my self, the real me, the one most of you do not know, for if you did you would wonder how I ever get through life with any friends and finally I know that my Creator knows everything about me and in spite of that he chooses to use me for his Glory and Bless me with such a wonderful wife, and another perfect gift from him in Brody Michael. I have heard it said that Mercy is not getting what you truly deserve, and Grace is getting far more than you ever deserve. So I do have to ask, What could I, an imperfect, hot tempered, arrogant, demanding sinner ever have done to deserve such wonderful blessings in my life?!! And if that were not enough to know that I know that I know
that I get to spend eternity with the one who redeemed me is far to overwhelming for me to even begin to consider what I have done to deserve this. All I can do is thank God on high that He truly did not give me what I deserve. And I Thank you God, for loving us all enough to offer us redemption through your Son. Jesus the Christ.
As for the physical updates; Last night @ 8:25 Brody decided that he was done with the Vent tube and just took it out on his own. That is what the nursing staff informed us. Deedee and I will always believe that God answered our prayer and removed the tube as Brody was scheduled to have it removed today and D and I were unsure if the timing was right. So God and Brody Did it on their own. He is on C pap mask that is assisting him now. He is resting better and still has spells of "forgetting to breathe" much like sleep apnea. The nurses keep a constant eye on him and we appear to be clearing the first hurdle. Other events of the day have been good as he is getting to have some milk a overwhelming 1cc every 4 hours. He is processing that very well and was very alert when we got to see him. Tonight we tucked him in and read him some Proverbs. He was sleeping well. Thats all for now. Thank you all and please continue to pray for all the families in the NICU. We are just one of many.

Prayers Needed

Brody is a little better today than yesterday but still not doing his best breathing. He has spells where he just breaths with the vent and not above it, even with his prescription of caffeine. The medical staff believe that the vent tube may be creating more secretions which could be a factor. He is on the lowest settings on the vent which makes them believe that he will do better on a mask rather than the ventilator. Unfortunately, the last time they extubated him he had a pulmonary hemorrhage. They haven't had a baby do that for probably 2 years. It is rare to happen and some of the staff has told me it was bad and scary. Brody's MD is telling us this is the next step and he appears ready but as you can understand we are not so sure. We need prayers that the medical staff make the best/correct decision for our son and that he is ready for this next step.

The road ahead is still very long, I knew nothing about preemies before this and I am learning quickly. Some of you may know this but if you are like Brent and I you are clueless too. I want to let you know our road so you know how to pray for our little man. Once he gets off of the vent successfully then his PDA will be our next hurdle. Sometimes it closes on its own, sometimes it takes medication, sometimes - surgery, I believe God is closing it. He has started feeding (1cc every 6 hours then tonight move to 1cc every 4 hours). His bowels are moving OK with the feedings but it is not uncommon for these little guys to create hernias from their weak stomach muscles, which would also need surgery. And not sure yet of all the details but he may also have to have surgery on his testicles if they herniate or don't do something properly (still learning about this condition). Then his eyesight will need checked because detached retinas are common in preemies his gestational age. He may also require eye surgery. He had a small bleed in his brain which is OK (normal for his 28 week gestational age) but we had to have 2 CT scans to monitor it. He has had too many chest x-rays and heart echo's to count. His RN said his lungs did look better tonight. But when he does come home in December (so far away) he will be on an apnea monitor and a prescription of caffeine. We have also been told that he will be more susceptible to RSV and cold/flu. Therefore, we have already been told not entertain nor take him out until March. I didn't realize ALL of this with a preemie. I didn't understand that one more week in utero can make a difference between a baby making it or not. I just thought they didn't weigh very much. My sister-in-law was a little baby which I didn't realize is not the same. There was so much on Brody that wasn't finished developing not just his weight. It seems everyday I find out one more hurdle we have to jump.

This is our road. Pray for our strength, for good decision making, and for Brody's health at every turn. I DO NOT worry. I know God has got tomorrow covered because He is already there waiting for us. He is with Brody when we come home. I know that there is nowhere this life can lead me that God is not there with me. And some of you may have heard me say this before, life is just icing on the cake, heaven is the dessert. No matter what happens on this earth...........I'm goin to heaven!!!!!!!!!! (But that doesn't make this life less exhausting)

Rehearsing my Faith and Reversing my Fears

Pastor Kevin Myers out of Atlanta did a sermon on rehearsing your faith and reversing your fears. His view is if we are not doing this we are doing the exact opposite; rehearsing your fears and reversing your faith. I am so glad I have had this in my memory bank today. Because I have needed to recall this lesson and put it into practice. A baby born a few weeks before Brody died this morning, another preemie. My first thought was preemies in this baby and Brody gestational age have a 90% survival rate. And it would be so easy for me to start calculating facts (how many babies have come through the NICU since we have been there, how many have left already, how many have made it, so Brody is number.......making this baby the 10%....so Brody is.....) But I recalled this lesson and I stopped. That kind of thinking is rehearsing my fears. That is leaving God out of the equation. That is throwing all of the prayers to the wind. Not to mention today is one of those roller-coaster days. Our little man is not having a good day. He keeps forgetting to breath and the secretions from his lungs are having to be cleared more often. With the other baby dieing on the same day that Brody is not having a good day makes the reality hit hard. Life is fragile. So instead of sitting by his isolette and buying trouble, I sit and pray. And on the way home when I started thinking whether he was breathing or not I sang a praise song. I am rehearsing my faith. And I am so grateful I HAVE a Faith to rehearse. Praising God comes natural to me. So when it's not something I think to do or even want to do; I can do what comes natural. Because when in the comfort of God there is no fear.

We do not know the name of the couple that lost their baby this morning but God does. Please pray for this little family they also have a toddler at home.