a new day...

"Lord God, you are my stronghold in time of trouble. Help me and deliver me; deliver me from the wicked and save me, because I take refuge in you." Psalm 37: 39-40

I woke up thanking God for this day, thanking him for my son, my husband, my family and friends...if it weren't for them and God, I wouldn't be able to get through everyday...I would be stuck somewhere back in December where our lives changed forever...

Everyone assumes that everyday in the NICU is terrible; it's not our favorite place to be, but it's where God wants us right now; I always tell people, I am thankful for the day, we had a good Christmas & holiday season, thankful that Coy is still fighting....the NICU is something we are so thankful for; if the awesome nurses and doctors in the NICU weren't there, we wouldn't have our little man today, like Chris says "I didn't know this world existed." So yes, it's a rollercoaster ride, you never know what the day will bring, but the simple fact that "the day" is still an option is something we are so grateful for!...the rollercoaster ride has many highs and lows, our baby boy is what keeps us going....

I want to make sure everyone knows how awesome the nurses are at Memorial Hermann NICU! These people are simply amazing...they are so skilled, compassionate! I had an "issue" with a certain nurse however the care Coy has received thus far has been extraordinary! We are so thankful for each nurse/ doctor that is involved in his care!

Our church sermon today was about having positive thoughts and taking the negative out of your life...I was telling Chris that in regards to Coy, this is VERY hard for me to do as a nurse. In the medical profession, you are trained to anticipate the road ahead...and yes, statistics scare me! I am always thinking about Coy, what is going on with his body, what could be done differently, what lies ahead of us in this journey....(I must admit I am very scared!) However I asked God to take this out of me today!

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus." Philippians 4:7

Surprisingly at the hospital today, my entire outlook/ attitude was different. I had this feeling that "everything will be okay." God gave me peace at his bedside; I was able to just reach my hand in his little house and and lay it on his back while he slept (his saturations went up!). Jesus is with my baby boy and has given peace to Chris and I.

So they still don't know where the infection is coming from because none of the cultures have grown anything, but they still suspect sepsis due to the abnormal CBC & CRP; I am happy to
report that Coy was very active today! He was feisty again! That's a good sign! His lungs are still "wet"...he was given Lasix today to try to get rid of some of it...he is also having some yellow, thick mucous coming out when he is suctioned..this was sent off yesterday for a culture...docs think small possibility of pneumonia...he is on 2 broad spectrum antibiotics to cover most all possible bugs...please continue to pray that Coy is infection free soon and
stays that way! They stopped Coy's feedings today temporarily due to something they saw on an xray that didn't look right...doctor says this is just precautionary...thinks it might be due to sepsis...

Please continue to pray for Coy and his healing! He is such a fighter! As the doctor told us today,
he believes Coy is alive due to a true miracle; said Coy has defied the odds; he is impressed with our mighty warrior! I smile because I know the Lord has given us this baby, given us this day...

Also, please pray for our new niece and nephew, Macey and Thomas, who were born in Austin, Texas on Friday! They were born at 35 weeks and are in the NICU as well! They are so adorable and look just like their parents! We can't wait to meet them!

unchartered waters...

"I wait in hope for You, Lord. You are my help and my shield. In you my heart rejoices, for I trust in your holy name." Psalm 33: 20-21

God gave me this verse this morning. I have read it several times throughout the day. I have been clinging to those words above. We are anxiously awaiting in hope for Coy's healing, for Coy to breathe without struggling.

Today seemed like one of those days when everything goes wrong; you know when you wake up on one of those days, you just have to put your "game face" on and deal with it...
So Coy had an okay night last night---we did discover that his CBC was abnormal showing signs of an infection. I had also noticed yesterday as I sat by his bedside that something "wasn't right". I had that motherly instinct---Coy is usually very active, moving all about in his little house; yesterday however he layed very still, laboring to breathe...I know my baby boy, he's a fighter, he gets fiesty when he's messed with---not yesterday, he just didn't have the energy and he didn't feel good--so as I anticipated, he does have an infection---blood, urine, and tracheal cultures were done---only time will tell what grows...please pray that Coy will become free of infection ASAP! Pray that the two antibiotics he is on will wipe this bug right out of his body...

Coy's lungs are still very wet; still have lots of fluid weighing them down preventing Coy from breathing easier--please pray for this fluid to resolve...good news today is another awesome doctor gave his expert opinion on Coy and his respiratory status, this doctor is highly educated and does lots of research in regards to steroids like hydrocortisone...he feels the dose Coy received for the past two days was no where close to what he needs---so today he ordered the proper dose...then again he tells us this is not well researched, they should work in Coy, but if not, they will try something else, he said "we are now in unchartered waters"...please pray that the steroid take effect in Coy 's body, that they will improve his respiratory function immediately! We need something to help our little peanut; he was between 80-100% oxygen today, this is very scary for us to see....where do you go after 100%?? the knob doesn't turn any further...

Coy's poor nurse today was working so hard for him; so hard for us. She had to draw so many labs on him, suction him, worry about him...pray for the nurses and doctors that work so hard for our little babies...so hard at trying everything they can; their brains always working, always thinking

thanks for praying with us; thanks for checking our blog; thanks for everything that you have sent us, cooked us, baked us; we appreciate it more than i can express

Prayers please!!!

Our little man had another rough day....

Seems that Coy's lungs remain "wet" as the doctors say. He is on diuretics and steroids, but so far, he isn't responding as well as he did last time. Please continue to pray for Coy's lungs (he was on about 70% O2 all day)---that he can excrete the fluid sitting on his lungs so he can breathe easier; pray that his oxygen requirement is lowered; pray that his blood gases improve...

We know Jesus took up our infirmities and carried our disease--we believe this. We know our saviour is the mighty healer; we know our Lord can do things we are not capable of, things we cannot even comprehend..

We just talked to Coy's night nurse who said there is indicators that he has another infection--his CBC & CRP were abnormal--so here goes the antibiotics again....
Pray that this infection will go away soon! Pray for Coy to remain comfortable as he is poked and prodded on for all the blood cultures, IVs, etc...
We are so thankful for Coy's awesome doctor, Dr. Lopez, and the nurse practioners who cover him...thankful that Dr. Lopez thinks about Coy all the time, thinks about what else she can do to help him get out of the NICU, thankful for her kindess and compassion she has for families and all of our questions, thankful she is constantly trying to cure him, she cares so much which makes it easier for us to sleep at night..
We are also so thankful for Coy's primary nurses...they are amazing and are so awesome to put up with us and all of our constant visitors and questions!!

We need your prayers; we need all of you prayer warriors to pray to our Lord and Savior on behalf of Coy; we love you for it...

• pray against infection!! pray that Coy is cured of the infection and it is easily treated by the antibiotics!
• pray for Coy's lungs ---that he is able to breathe easier and is able to rest comfortably
• pray that Coy continues to digest all his milk
• pray the Coy grows mighty and strong
• pray for Chris & I as we grow weary; pray for our strength; pray for our families

Step Backwards

After a string of days moving in the right direction, we seemed to go a little backwards today. When Ann Marie got to the his bedside today Coy was requiring 100% oxygen and having trouble maintaining his breathing. Ann Marie was immediately concerned and sent me a message saying I should probably get up there. His doctors gave him another diuretic to try to relieve the fluid from his lungs. They also started him on a 10 day dose of the steroid hydrocortisone. Luckily something helped him and Coy was able to breathe easier later this afternoon. By the time we left him tonight he was down to 62% oxygen. Please pray that he will be able to pee off the fluid on his lungs. That the steroids will help speed up the development of his lungs. That Coy's ventilator settings will get weaned down.

Thanks for praying for our son.

decisions decisions....

I went to the doctor for my follow up visit this week and we were discussing Coy and what happened to me...she gave me her professional opinion, said there is a 25% chance it could happen again with the next pregnancy (God willing there is one) and then she told me, "You just have bad luck." I have pondered on this over the past few days and I've come to the conclusion that I actually have really GOOD luck. Someone who has a great support system, a thriving baby, medical insurance, wonderful HIGHLY trained doctors and nurses to take care of Coy, and a healthy post op condition is VERY lucky. That's me, it's all about your perspective; is the glass half full or is it closer to empty. Is the day going to be good or bad? You decide.

Coy became free of all IVs today! His feeds were increased to 15cc every 3 hours so he no longer needs his IV fluids! Please pray for Coy to continue to digest his milk, that his body will remain free of infection, free of NEC, that he will continue to urinate and poop!

We are in great need of prayers tonight/ today for Coy's lung development!! He had a few bad blood gases last night and was requiring quite a bit of oxygen. The doctors call this "Chronic Lung Disease" and say it can vary in severity. I really don't like the words "chronic" or "disease"; I would like to call it "Lungs that don't work correctly yet because they aren't suppose to for 2.5 more months!" So that being said, Coy is on diuretics to help with his pulmonary edema, however the doctors would like to wean him off the ventilator as soon as possible. To do this, they want to give another 10 day course of Hydrocortisone---Coy responded AWESOME to this medication two weeks ago--the downside of giving the hydrocortisone is there in no real research on long term effects of the drug. In the early 90's they did a study on another steroid, dexamethoasone, which found side effects of increased delayed neurological development. So we would NEVER want to do anything harmful to Coy, but with no long term research there's no way to know...the doctors recommend the steroids, however wanted our opinions first....so many decisions, so many risks....

It is just amazing to us that Coy's body is able to function so well. He wasn't due until March 28th! I was just over half way done baking the little man--his lungs shouldn't be breathing air yet, his kidneys should have to excrete so much fluid, his GI tract shouldn't have to digest breast milk yet...we are absolutely PRAISING GOD that Memorial Hermann NICU exists, that they are able to keep babies like Coy alive, that the amazing doctors and nurses are so dedicated to their jobs...we are thanking God for the people he placed in our lives to help us through this difficult time...we are just PRAISING GOD for each day he allows us to bond with our "little peanut." (He weighs 2lb 1oz!!)

Please continue to pray for Coy's total healing! Please pray with us in agreement that God will continue to cure Coy of any disease in his tiny body! "Again I say to you that if two of you agree on earth concerning anything that they ask, it will be done for them by My Father in heaven." Matthew 18:19

More milk / New tube / Big poop

Little buddy had another good day. They were able to increase his feeds up to 12cc. Ann Marie got to have 3 1/2 hours of kangaroo time. He got a new breathing tube because the old one somehow came out this morning. This could have been very serious but luckily his doctor was in the room and they were able to insert a new tube quickly. Turns out that he was able to get a larger tube which he was badly needing. We thought he couldn't get this tube until he weighed 1500 grams but we must have misunderstood whoever told us that because we were told today that 1000 grams is the appropriate size. Coy is getting close to being 1000 grams. Hopefully this new tube will help his breathing and allow him to get the size of breath he is needing from his ventilator.

Coy had a surprise for his nurse tonight just before shift change. While getting his diaper changed he decided to have a poop explosion that shot poop all over his bed and isolette. I couldn't help but crack up laughing. His poor nurse had to clean it up and remake his bed but she was a great sport and even laughed herself. We are glad that he is pooping and peeing now and pray that it will continue.

Please pray that Coy will continue to grow and develop. Thanks so much for your prayers.

Hope

"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1

Sometimes it is so hard to believe that everything is under control--so hard to believe God has a plan for your life like he does for all the other billion people on the planet. But he does have a plan; he does love you; he is in control; you have to have FAITH in what you can not see!

I went through a stage of anger after Coy was born--I was angry that all the mothers around me had healthy babies; angry when I saw pregnant women in public; angry that I was cheated out of a happy pregnancy. That grief stage eventually passed; then came the hurt, confusion, jealously even. Today I feel like the luckiest girl on earth; I have a beautiful baby boy. I have a baby that has defied the odds, that has persevered through 5 weeks of life; a baby that is so full of life. How could I ever have felt cheated?? Robbed of something that really wasn't "mine"? Everything we have is God's; our houses, cars, clothes, money, etc; everything. God has blessed us; allowed us to "borrow" his child for this life on earth; and I feel completely honored that he would trust me as Coy's mom.

Today Coy was looking "puffy" again--however he has been urinating; even had great output yesterday and had some really wet diapers today. They started him on diuretics (HCTZ & aldactone) for his "Chronic Lung Disease" and pulmonary edema---the nurse practitioner even said the words "he will probably go home on these medications". Chris and I and Grandpa & Grandma Kolkhorst have all noticed the doctors/ NP saying the words "going home" when describing certain situations---for instance they say Coy may "go home" on oxygen; before this past week, we've never heard the words "going home"--they wouldn't even give you hope for tomorrow, much less "home"
Anyway--he was started on diuretics and he has seemed to respond well to them; he has a chest xray every monday, wednesday, friday--pray with us that his xray on Wednesday looks better; that Coy is able to excrete the fluid on his lungs and breathe easier...

So now that Coy is getting bigger (he weighed in at 2lb 2oz last night---some of it is fluid so dont get too excited) his ET (endotracheal) tube is too small; meaning there is an air leak and some of the air "escapes"--his leak is evaluated by the ventilator and can go from 0% to 100% in a matter of seconds--of course when Coy is not getting enough O2, he desats (his blood oxygen level drops)....there is nothing they can do about the leak right now---the next size ET tube is for babies at least 1500 grams; Coy is only about 900 grams---so it takes lots of patience and manipulating from the nurses to get the leak as minimal as possible; please pray for Coy's oxygen levels to stabilize; for his blood gases to improve; for the patience and endurance of the awesome nurses

We need prayers tonight/today for:

• God to mature and heal Coy's lungs; for the fluid to be removed so Coy can breathe easier
• that Coy's gut will continue to mature and digest all his breast milk (he's now at 8cc!!)
• that Coy's urine output will be enough to reduce the swelling on his little body
• that Coy will depend less on the ventilator and be able to breathe on his own
• that Coy remains infection free and his IV can be taken out soon!
• that Coy will have total healing of his eyes, hearing, brain, kidneys, heart, GI tract
• that the nurses and doctors will be well rested and ready to handle the stresses of their job

thanks to all!