Thursday, January 31, 2008

good day

"Let us hold unswervingly to the hope we profess, for he who promised is faithful." Hebrews 10:23

I'm happy to report that Coy had another good day! His oxygen requirement was between 30-50% and he is still going strong on CPAP! He didn't have his eye exam today; it will be Dr. Hittner who examines him, so I know she's probably very busy! She should make it around within the week! I was able to hold Coy again from 2-6pm...we have so much fun! He sleeps, eats, squirms, sleeps, eats....Please continue to pray for complete & total healing of Coy!

Here are some pictures taken over the past week....

Coy with his CPAP headgear!

A family photo!

Mommy and Coy time...

Sucking on his pacifier


His sisters, Sugar Pie & Dixie, who can't wait for him to come home...

Wednesday, January 30, 2008

Thanks be to GOD!

"Thanks be to God for his indescribable gift." 2 Corinthians 9:15

When people ask me how I am doing these days, my response is usually "good..." The truth is, each day my mood starts the same, ANXIOUS! After our morning call to check on Coy, I usually settle down, thank GOD for another day, and try to get chores done around the house. His good days are AWESOME, his bad days are TERRIBLE. Let me tell you, this week has been AMAZING! Coy and I had the best time today! One of his favorite primary nurses (who loves him almost as much as me) swaddled him up and handed him to me like he was any other newborn! He slept in my arms for an hour before he woke up, he got a little fussy (and cried!) because he had a dirty diaper, he smiled at me a few times, he took his pacifier before his feeding...all the usual newborn stuff! My heart is still singing; to see my baby boy with his eyes wide open looking at me while he was swaddled in my arms; it was priceless. It was a dream come true today; I couldn't take my eyes off him; I studied every dimension and detail of his beautiful face; I talked with a baby voice and told him how much everyone loves him...he smiled. The entire time I was just thinking, "THANK YOU JESUS! THANK YOU! THANK YOU!" How do I get to be so lucky to spend 4 hours holding my beautiful baby who has and still is defying the odds?

So here we are, 8 WEEKS later!! Can you believe it? Coy is already 2 months old! Already time for his immunizations! Time is flying by....(yes, they get immunizied in the NICU...)
Coy is still CPAPin' it right along...even his nurse practioner & doctor (another new one...she'll be with us for the next month) said this morning, and I quote "We think he is looking very good..." What?? Did they really say that?! Okay, for most of you who don't know, THOSE WORDS ARE NOT USED IN THE NICU very often. If they're not telling you worst case senario, then usually they tell you statistics; or sometimes they don't have any statisitics because they simply do not know...and trust me that is not music to our ears...
So back to Coy, he has been doing amazingly well on CPAP. His oxygen requirement was down to 35% last night...today he was around 40-50%...he is a very smart boy and knows exactly how to get the prongs out of his nose...

He continues to urinate adequately and his kidney function has normalized...of course they are always watching this closely due to his history of renal issues...
Coy has 6 days remaining on antibiotics for the suspected then not suspected endocarditis...they will then pull his central line out after...Please please pray for Coy to stay free of infection after he's done with this course of anitbiotics!
Coy will have his first eye exam soon; please pray against a disease called ROP that affects many preemies; there is a world renowned eye surgeon at Memorial Hermann who will examine him; from what I hear, she is amazing and saves the vision of babies who would otherwise be blind...

Please continue to pray for complete and total healing of Coy! Pray for him to remain infection free, to digest/ tolerate all feedings, for a healthy heart, for no eye disease (ROP), for normal kidney function, for the strength of his lungs, for him to stay strong on CPAP, that we can wean the CPAP soon, that Coy is comfortable and content...

Thanks to all for the continued love and support. Chris and I are just amazed at the kindness and warmth of all of you. We have received cards and gifts from people all over the country; people we do not even know. We are so grateful...

Tuesday, January 29, 2008

So strong!


"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will hold you with my righteous right hand." Isaiah 41:10

Praise God and all his glory for he is good! Coy is still CPAPin' right along...His oxygen requirement has been steady (40-60%) and he has been desating alot less!! He does desat while eating at times; we're still working on the eating AND breathing thing all at one time...
Coy's feedings were increased to 20cc every 3 hours...he continues to tolerate & digest all his milk! This is an awesome feat; digestion can be a HUGE problem for some preemies...
He has lost some weight over the past few days due to him working harder on his breathing...he did gain 20 grams tonight, so he is now 2 lb 6 oz...
Please continue to pray for Coy; for him to sustain the strength to stay on CPAP; that his oxygen requirement is lowered; that he continues to tolerate all his feeds; that he continues to urinate adequately; that he stays free on infection; that he gains weight slowly but surely...

Monday, January 28, 2008

Still CPAPin'...

"Praise him for his acts of power; praise him for his surpassing greatness." Psalm 150:2

Well....48 hrs later, Coy is still going strong on his CPAP! The little guy is getting pretty ticked off at the prongs in his nose though. His poor nurses are having to readjust his "CPAP head gear" thing all the time because he is always knocking it off with his hands! He is really strong for a 2 pounder...his strength amazes me! Please continue to pray that Coy will stay strong on CPAP and stay OFF the ventilator...(the picture below is Coy in CPAP...I know, it looks funny...that is his OG (feeding) tube in his mouth)


So, like the ventilator his CPAP setting will eventually be weaned down. He is now at a CPAP of 8, once it gets to 4, he will be transitioned to a nasal cannula or just regular oxygen. The goal is to obviously get to room air but many babies do go home on oxygen. I always tease Chris saying I can see Coy learning to walk and pulling his oxygen tank behind him...of course I hope he's not on oxygen too long, but that thought makes me laugh...

Cardiology wanted Coy to wear a 24 Hour Holter monitor today; just to check for any tachycardia...yeah, that really mad him mad when they hooked up an HUGE holter monitor to him; he is like one big lead with tape covering his entire torso...

I would have to say the best part of the day was hearing Coy's voice! Chris and I both were so excited to hear his little squawks...his voice will get louder and stronger as the days go by...We were so excited tonight at the hospital; Coy is starting to look so precious; we are mesmerized by his developing personality...he is such a fighter; he is always swinging his arms, kicking his legs, trying to turn his head...one of the nurses last night told me I would need to strap Coy onto his changing table once he comes home; that he is too "wild" to change his diaper without buckling him in...oh geezz...that will be fun!

I have been able to report AWESOME news the past few days; I praise the LORD for this; it is through him that all things are possible! Coy still has a long ways to go...we are trying to enjoy the "highs" as they come and brace for the "lows" the best we can...please continue to pray for Coy's complete and total healing! Pray for Coy to stay infection free (still on antibiotics...), pray for continued strength of his lungs, pray for him to continue to urinate & digest food; pray for his oxygen requirement to lower each day (40-60% today), pray for all the babies in the NICU tonight...we are so grateful!

Sunday, January 27, 2008

Gritbaby

"The Lord is my strength and my song; he has become my salvation. He is my God, and I will praise him, my father's God, and I will exalt him." Exodus 15:2

Gritbaby had an awesome day on CPAP! I was very nervous this morning; actually I woke up several times last night wondering how he was doing...I know that alot of babies go back to the ventilator after a few days on CPAP, but I'm really praying that Coy is strong enough to stay extubated...please pray with me that God will give Coy the strength to stay extubated and on CPAP then eventually transition to nasal cannula...

Coy did have two "bradys" last night, aka Bradycardia, or slow heart rate...this happens when babies "forget to breathe" (apnea) so their heartrate drops suddenly...the nurse said it was shortly after he was placed on CPAP and he was probably alittle stressed out...he also self recovered from these two episodes, meaning his heartrate came back up on it's own after he took a breath...Coy hasn't had any further brady episodes thus far; please pray that Coy doesn't have anymore apnea or bradycardia episodes!

I spoke too soon the other day when I said I could cross Pedi Cardiology off the "follow up" list...his Echo looks good, which is amazing to me...but they think he has a condition called WPW or Wolff-Parkinson White, which was diagnosed on the EKG...this means he has an extra conduction pathway in his heart...sometimes people have this and never know it, it can be asymptomatic; sometimes it causes tachycardia, which can be treated with medications...the Cardiologist wasn't too concerned about it at this point...so please pray that this condition won't cause any harm to our little Gritbaby!

All in all, Coy had an incredible day on the CPAP! His oxygen requirement was 45-50% which is good for the first day being extubated! His blood gas this morning did improve, so he will not have anymore gases unless they feel he needs one...no more chest xrays either! So please continue to pray for Coy's lungs to function just as they should, that the chronic diuretics continue to help him rid the extra fluid from his body, that fluid will not build up on his lung tissue...

Thanks for all the encouragement and prayers! We have an awesome God and are so thankful for that!

Saturday, January 26, 2008

We're CPAPin'



"the Lord God formed the man from dust of the ground and breathed into his nostrils the breath of life, and the man became a living being." Genesis 2:7

We are so happy to report that Coy was extubated tonight around 730pm and put on CPAP (Continuous Positive Airway Pressure)! His ET tube was taken out and the CPAP prongs were placed into his nose. He will no longer have the ventilator breathing for him; he must take all of his own breaths...which makes me extremely nervous! The CPAP prongs are in his nose and give him continuous pressure with oxygen, this keeps this air sacs open making it easier for him to breathe...So, sometimes babies must go back to the ventilator if they tire out on CPAP; they say this is normal so don't be disappointed if it happens...I am praying for my little mighty man to keep breathing! We just got off the phone with his night nurse and she said so far he's doing good...his CO2 in his blood gas was elevated, but something they expect...pray in the morning for a more stabilized blood gas; pray for Coy to stay strong on the CPAP!!

He was so mad when they took the tape off his face to remove the ET tube...he had tears in his eyes! Although we didn't hear anything tonight, we will soon be able to hear him cry! They say it takes alittle while for sounds to come out...

I am so hopeful but trying to stay grounded at the same time....I know Coy is doing the best he can right now; I don't want to push him too hard; I want the best for him...

So, we've had a big day; Coy has made a huge step forward! I am so proud of him! He is still receiving 18cc of fortified breast milk every 3 hours & tolerating it all....he even woke up 30minutes early today and started smacking his lips together...he's a growing boy, weighing in at 2 lb 10 oz....he continues to urinate just fine, he will remain on chronic diuretics...

Please continue to pray for complete & total healing of Coy; pray for his lungs to function just as they should; pray his oxygen requirement is lowered as he becomes stronger & stronger!; pray for him to stay on CPAP and not have to go back to ventilator; pray he continues to eat and urinate just as he should!


Oh yeah, today daddy got to hold little man "like a real baby." They really enjoyed each other's company...they are so much a like; before I knew it, they were both fast asleep....





Thanks for all your prayers; we are so overwhelmingly appreciative!

Big News! (maybe)

We just got off the phone this morning with Coy's nurse....she said Coy will possibly go to CPAP today...maybe around 930 this morning...he is on the lowest ventilator settings and had a good blood gas this morning...I must admit I am SO nervous right now

Please pray this morning that this transition goes well; pray for the strength of Coy's lungs; pray that he does awesome on CPAP!!!

I promise I will update tonight after we get home from the hospital...
Please pray!!!

Friday, January 25, 2008

Holding Coy...


I will update tomorrow sometime...just wanted to share this picture...I got to hold him "like a real baby" for the first time today! We both loved it!

Thursday, January 24, 2008

a mighty baby

"I delight greatly in the Lord; my soul rejoices in my God..." Isaiah 61:10

Great news today....Coy's Echo did NOT show any abscess or "vegetation" on his valve! doctors think it's just "artifact" on the echo....this is really great news...for now, I will cross pedi cardiology off our "to see" list after discharge...

Coy made me laugh so much today...he already has such a unique personality...i know i said this yesterday, but the way he smacks his lips together before he eats is hilarious! He is such a cutie and getting bigger by the minute! (and that's not just my opinion, his nurse practitioner said herself that he was cute!) Coy's friend, Kyle, (a 23 weeker who is 6 weeks older than Coy) took his first bottle today and did awesome! This gives us such hope, we praise God for Kyle & his family..

So, Coy's feedings were decreased to 18cc but the caloric intake was increased to 27 from 24...Coy's sodium level has been low, so this is a way of "fluid restricting" him to try to stabilize his electrolytes...he is still tolerating all his feeds and I'm happy to report that he did not "spit up" today!

His ventilator settings remain low...his blood gas today was good after the vent change yesterday...his oxygen requirement has been btw 40-58% today...he will have another blood gas in the morning...

Please continue to pray for Coy's lungs to mature & grow, for Coy to excrete all "extra" fluid from his body, for Coy to continue tolerating all feeds, for his electrolytes to regulate, for Coy's friend Kyle to take all his bottle feeds, for Coy to remain free of infection, for the spot on his valve to remain nothing at all, for Coy's oxygen requirement to be lowered daily and for his blood gases to be awesome!

Thanks be to God for all his precious gifts!

Wednesday, January 23, 2008

DOL--51



"Now I know the Lord saves his anointed; he answers him from his holy heaven with the saving power of his right hand." Psalm 20:6

Coy had another good day today; he was wide awake for majority of it. He especially opens his eyes and smacks his lips together when it's time for his feeding. It's amazing to me that he correlates the food coming from his mouth...but like clockwork, sure enough when it's time for him to eat, he's in his house smacking away...it's also amazing to me to think that he loves his pacifier...most preemies have issues with feeding, sucking, and swallowing...one reason being babies don't develop those reflexes until the third trimester...second reason preemies have issues is due to the "bad" association they have with "things" in their mouths (ET, OG tubes..) So I am glad to see him smacking and chewing and sucking...

Coy has had a small emesis (vomit) for the past three days...it is not much, but none the less, scary for me to see...the nurses don't freak out about it, just me...they say it's okay and some babies have issues with reflux...hopefully he just grows out of it...he is still taking 20cc with every feeding...

His vent was weaned down to 25 bpm this morning...he had an okay blood gas after, but his chest xray showed his ET tube was too high, so they re-taped it to the correct position...his next blood gas at 4pm wasn't too great, so they did another xray and the tube was in too far, so they re-taped it again and repeated the gas...it did the trick & Coy had an awesome blood gas at 7pm...his nurse practitioner said the plan will be to "grow" him-- allow his lung tissue to grow and get stronger...although I want him to go to CPAP soon, I don't want to rush him then have to go back to the ventilator...I've never been a very patient person, I guess God is working on me now..

We didn't receive the Echo results today...hopefully tomorrow...

He continues to urinate just fine...of course he is on chronic diuretics so this helps...

Please continue to pray for our little man...he is really becoming stronger & bigger by the day! Each day I feel so blessed to be able to hold him, watch him, and just love him...

Tuesday, January 22, 2008

sleepy boy...



"My son, pay attention to what I say; listen closely to my words. Do not let them out of your sight, keep them within your heart; for they are life to those who find them and health to a man's whole body." Proverbs 4: 20-22

He was sleeping when I got there today...(above picture)

I wish everyone could come in person to see how adorable Coy is looking; pictures don't do him justice! He is really starting to "fill out". Yes, he's now 2lb6oz...so big, I know...when he hits the 3 lb marker he can start wearing clothes!! Momma's gonna have to go shoppin...

He has a camouflage hat that his Aunt Mandy gave him for Christmas--he wore it today during kangaroo care...so cute...


Coy had a repeat Echo today, then afterwards had an EKG done....no results yet, hopefully we should know something tomorrow...please pray that the "spot" on his heart is gone!! Pray for normal heart structure & function...

He is now eating 20 cc of "fortified" breast milk every 3 hours...they fortify the breast milk to add more calories...so far, Coy is tolerating his feeds nicely...he did "spit up " on me again today...his NP said she is not too worried about it, since all babies spit up...it's just scary for Coy since he is intubated...we don't want him to aspirate his milk or extubate himself...please continue to pray for Coy to tolerate all his feedings!!

His blood gas was good this morning so they weaned his rate to 28 bpm on the vent...they will wean down to 25 bpm in the morning 2 hours prior to his next blood gas....please pray for awesome blood gases so we can wean off the vent (we need to get to a rate of 20 bpm to extubate)....and Coy can go to CPAP soon!

Coy's urine output has been good the past few days...please continue to pray for adequate urine output...

We are so thankful for all the prayers & support!


Monday, January 21, 2008

a good day

Today was a good day for Coy...he is now 7 weeks old! This will be a short post since I am exhausted right now....

Coy's oxygen requirement was lower today; around 35-50%...all of his ventilator settings remain the same...please pray for awesome blood gases so they are able to wean him off the ventilator!!
His feedings were increased to 20cc every 3 hours...pray for Coy to continue to tolerate & digest all his milk...he did spit up on me for the first time today...he might have some reflux going on...

Please continue to pray for complete & total healing of our baby boy! We are so thankful to you all!

Music!

I finally figured out how to add music to the blog for your viewing & listening pleasure! It will start automatically, controls are at the bottom of the page if you need to turn it off...

Sunday, January 20, 2008

God's Will...


"A man with leprosy came and knelt before him and said, 'Lord, if you are willing you can make me clean.' Jesus reached out his hand and touched the man. 'I am willing,' he said. 'Be clean!' Immediately he was curred of his leprosy." Matthew 8:2-3

Coy is now 2 lb 4 oz! We are so thrilled that he continues to grow and grow! It's amazing to see how different he looks from 7 weeks ago...I'm so thankful that were at this point and hopeful at what the future brings...

Each day I pray and pray for Coy; just begging God for Coy's healing; for his lungs to be clear of fluid, for his tummy to digest his milk, for his kidneys to excrete urine...I am begging that this is God's will, that God's will is for Coy to come home, for him to be a toddler, a kindergartener, a high school graduate, etc...I must admit this morning I was having an "angry, why me?" moment--(yes I still have these every once in a while) I was having a hard time comprehending this world; God's word; everything that has happened over the past few months...then God slapped me in the face and said "Wake up! Be thankful for all I have given you!" Well, no he didn't slap me, but he did tell me to be thankful...so my pity party ended and I happily spent all afternoon with the most precious gift I have ever received...

So I had 3 hours of Kangaroo time today...for some reason, Coy was just not happy...he is so strong now that he is able to pick his head off my chest and turn it!! This is scary because his breathing tube can come out...So each time he tried to do this I litterally had to hold his head against my chest and calm him down. He thinks he's a "big boy" now...

Coy's chest xray looked a bit more "wet" today so he was given a dose of Lasix...this did the trick and his urine output picked up! He was also started back on his chronic diuretics....He required 40-60% oxygen today...all of his ventilator settings remain low...he is now getting a blood gas every morning...please pray for the gases to be awesome, pray that he will be weaned off the ventilator and be able to go to CPAP soon!!

His feedings are now 19cc every 3 hours...this is awesome! It makes me nervous to look at all the milk in the syringe..I think "oh goodness, thats alot for his tiny tummy!" but each time, like a champ, he digests it all! Please continue to pray for Coy to digest and tolerate all his feedings...this is a BIG success...the bigger & stronger he gets, the faster he'll get out of the NICU...

All of Coy's blood cultures have continued to be negative...THANK GOD! He will remain on Vancomycin for awhile longer...please pray for Coy to be infection free! Pray for the possible abscess in his heart to disappear! Pray for complete healing! Pray the PICC line doesn't cause any harm!

Please continue to pray for our little peanut! We are so thankful!



Saturday, January 19, 2008

Another Day

Coy had an alright day. His feeds were increased to 19cc and is now getting all of his nutrition from his mama's milk. This is a big step for us and pray that he will continue to tolerate his feedings and the amount of milk he gets will steadily be increased. Coy received his last dose of steroids this morning. He has gotten them for the past week and we've seen major improvement in his lung function over this time. Now that he is off of the steroids there is some concern that his lung function will decline. Please pray that his lungs will continue to strengthen on their own and that this last round of steroids didn't just mask the problem but provided the necessary growth and development that Coy's lungs need.

Coy's urine output was lower than it should be today. Please pray for pee.

The amount of oxygen he is requiring has been creeping back up the last few days. Please pray that he will require less oxygen going forward.

Ann Marie allowed me to have my turn at kangaroo care today. Coy spent 3 hours on my chest. Father and son enjoyed some solid nap time. Mom stayed close by keeping a watchful eye on us making sure we weren't misbehaving!

Please pray tonight for one of Coy's NICU neighbors, baby Emily, that lost her fight today. She was a micro premie like Coy and was unable to overcome the health challenges she was faced with. Her parents spoke very little english and often needed a translator to understand the doctors. Today no translator was needed, they were crying the universal language of pain and suffering. Please pray for them.


(The picture above is from last week...)

Friday was another awesome day with Coy! I was able to hold him again for 2 hours! He did receive another blood transfusion and also IVIG therapy which is to help "boost" his immune system....

Coy also received "caffeine" yesterday (Yes, caffeine is a drug!)--they give this to babies to help them breathe on their own...hopefully we hit the "extubation" point pretty soon...Coy is starting to clue in to the fact he has a huge tube down his throat and is starting to grab it and yank....

Please continue to pray for our little man! He really appreciates it! =)
"Lord God, guard my course and protect my way as I pursue a righteous, victorious life in You." Proverbs 2:8

Thursday, January 17, 2008

44 days old!

I am happy to report that Coy had another wonderful day....he is now 44 days old! Hard to believe, huh?
I was able to hold him for most of the afternoon; this is our favorite time together. We're really starting to bond so well during our afternoon naps...

Here's a quick update on Coy from today...

  • He will have a repeat Echo done next week sometime...the infectious disease doctors want to look at the "spot" on his heart again; they want to make sure it's not artifact on the sonogram...
  • He will continue on the antibiotics for 42 days regardless of what is found
  • He will have a PICC line placed sometime tonight; please pray this procedure goes well!
  • Coy continues to urinate adequately...please continue to pray for daily urine output; pray for normal kidney function!
  • They have been able to wean down Coy's ventilator for the past few days! He is now on 30 bpm with a pressure of 22/6; his oxygen requirement was around 30-50% today!
  • His feedings were increased to 11 cc every 3 hours which he tolerated...if he continues to tolerate his feeds throughout the night, he will be increased to full feeds tomorrow...
  • We now have Immunology doctors consulting on Coy; his IgG antibodies are low...this is most likely due to him being premature...(like every other complication, right?)...he may receive IV IgG therapy...we'll find more out tomorrow...
  • Coy's chest x-ray looked better today!
  • So far, there has been no growth in Coy's blood cultures...

Please continue to pray for Coy! Pray for complete and total healing! Pray against infection, pray for Coy's lungs to clear; pray for him to breathe without laboring; pray for his neighbor, Michael, who will be having heart surgery tomorrow; pray for all the sweet, innocent babies in the NICU...

"The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full." John 10:10

Wednesday, January 16, 2008

ups and downs...

"O Lord, You are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago." Isaiah 25:1

What a wonderful day we had today! I was able to hold Coy for 4 hours! He slept majority of the time, sucked on his paci some, drooled on me....he's so precious, such a beautiful baby boy! Daddy got to practice at changing a diaper again...he was struggling a bit so I had to step in and help him out! I guess I'm a little over protective over the little guy...

Coy had another Echocardiogram yesterday...his third one thus far; today his doctor told us they did find "something" on one of his valves...he thinks it could be an "abscess" or source of infection, i.e. Bacterial Endocarditis---this basically means bacteria have been living and multiplying on one of his heart valves....of course they will consult with Infectious Disease and Cardiology to look at the "spot" closer...this is not the Serratia bacteria (hospital acquired) that he has colonizing in his lungs, but the staph non aureus bug (this bacteria is present on skin) that he was treated for a few weeks ago; however the Echo done at that time did not show anything so the doctors never did locate a source of infection--anyway...the treatment for this will not change...still be on Vancomycin for 42 days; cephapine for 10 days; repeat Echo will be done at a later time to monitor the abscess; blood cultures & lab work as well...please pray with us that the antibiotics will treat and completely heal Coy of all infections! Pray for his heart; that it will not suffer any damage from this bacteria! Please pray for negative blood cultures!

His feedings were increased to 7 cc every 3 hours, which he is tolerating quite nicely! It is so funny to watch him chew on his tubes (OG & ET) after the milk is in his tummy....
Coy's urine output has been good as well...such a blessing that the little man continues to urinate just as he should!

Please continue to pray for the complete and total healing of our little peanut! We need prayers tonight for: Coy to continue to digest all milk, for his GI tract to stay free of infection, for his heart to heal and function normally, for Coy to be healed of all infections, for him to be free of any eye disease (ROP), for his oxygen requirement to be lowered, for the healing of his lungs--for them to be free of scar tissue, fluid, and infection, for Coy to be comfortable and sleep soundly!

We are so thankful for all the tremendous love and support! Your encouraging comments are so nice to read; they really bring up our spirits when we are down!

Tuesday, January 15, 2008

better day...

Our little man had an overall good day! He is looking more and more like a "normal" baby the bigger he gets! He's already 6 weeks old and now weighs 2 lbs, almost 1000 grams! I love walking in to see him and he's waiting for me with his eyes open...

Coy's "attending" doctor has changed again--at Memorial Hermann, the babies are assigned to teams of docs--the attending in charge of each team rotates about every two weeks--in a way this is good because there is a new set of eyes on Coy, a new doctor that has a new perspective; the downside is the doc has to get to know him, his likes and dislikes, what's normal for him vs. abnormal...so we met with his new attending today---in regards to the infection, he says it will most likely "colonize" in Coy's lungs, and we will hope & pray it doesn't present in the bloodstream; he will stay on antibiotics for a total of 42 days! which means they will put in a new PICC line (our 3rd one!) If this bacteria does get into his blood, he is at a high risk for meningitis, among other very scary things...doc said key is to get Coy "big" so he can fight off these bugs with his own immunity...well yeah, duh...
and yes, I did inform him of my theory of how this "hospital dwelling" bacteria presented in Coy's lungs two days after intubation--he said "I don't want to speculate...there's no way to know..." yeah yeah yeah

So good news today was Coy is now on a rate of 30 bpm on his vent! Pretty awesome improvement from two days ago; his oxygen requirement was between 35-50% today...such a relief to see that we're no longer "maxed out" on the vent ....

Coy was restarted on feeds today, just 4 cc though; they will increase it daily...so far, he was tolerating all of them...

Please continue to pray for Coy to fight this infection, for it to not spread into his blood, for the doctors and nurses to use EXTRA caution when handling him, for him to tolerate all his feedings, for his urine output to remain "normal", for the baby next to Coy who is having a hard time...

"Powerful Lord, help me not become weary in doing good, for at the proper time I will reap a harvest if I do not give up." Galatians 6:9

Monday, January 14, 2008

day of life--42

"I call to you, God, and you save me. Even if I cry out in distress evening, morning, and noon, you will never fail to hear my voice." Psalm 55: 16-17

We are really in need of your prayers today....
The doctors think they have identified the cause of the infection...they say it's a bug called serratia, a gram negative organism growing in Coy's lungs...this bacteria is only found in hospitals...so unfortunately there is no way to go back in time and track where it came from, but it is unfortunate that Coy has it (I personally feel there is some correlation between the bacteria that presented in his lungs two days after he was re-intubated; and my google search confirms my thoughts; the doctors however wont say this...)...according to the Infection Disease doctors (yes, they're back) it can be very bad if found in the blood stream...so far all blood cultures have been negative...please continue to pray that the antibiotics treat & destroy this bacteria in Coy, pray that Coy stays infection free for the remainder of his stay in the NICU...

When I saw Coy today, I fell in love again! I walked in and lifted the blanket covering his isolette and he was waiting there for me, his eyes both wide open...his beautiful blue eyes, he was just looking and blinking and looking and blinking...so precious...
He was active again, which is such a good thing to see!

Coy had two really good blood gases this morning, so they were able to wean down on the ventilator some...please pray this continues! We need to get off the ventilator ASAP to prevent future lung damage...even Dr. Doomsday (that's not his real name, I just call him that) says the sooner we can get off the vent, the better chance that we wont have "severe lung damage which leads to severe brain damage..." He then always goes on to tell us how high the "morbidity and mortality" rate is among babies who have repeat infections....thanks, just what a crying mother wants to hear...

We did have a "greys anatomy" moment today...the Infectious Disease resident had to present Coy's case to his attending and 2 other residents...when the resident came to examine Coy and look through his chart he said "Wow, I've never examined a baby in an incubator before..." RED FLAG...the words "I have never..." are not good for a doctor to say to a patient or family member...after the Attending doctor asked this resident what he found on exam (of Coy) the resident responded, "I found a very small baby." And he was serious...we all started laughing...poor resident, he might need to repeat a few classes...he then went on to ask me if Coy was the name of the isolette or the name of the baby....hmmm....

Please continue to pray against this infection! Pray that the antibiotics contain this bug and it does not spread to the bloodstream! Pray for Coy's respiratory function to improve! Pray for him to tolerate all his feeds when started again!

Sunday, January 13, 2008

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!



Saturday, January 12, 2008

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

Friday, January 11, 2008

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

Thursday, January 10, 2008

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.

Wednesday, January 9, 2008

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

Tuesday, January 8, 2008

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.

Monday, January 7, 2008

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!

Sunday, January 6, 2008

Praise God Always

"Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7

We are all so quick to pray to God when we are in need of something, we beg him--then he answers our prayers and we forget to PRAISE him! I admit I have been guilty of this many times; even last week I found myself doing this. I try to pray on and off throughout the day & night; after Coy started doing better last week, I found myself daydreaming about other things instead of PRAISING GOD for what he had done. I kept begging him days before at every opportunity I had, but then suddenly I got what I wanted and was on to other things...lets all take a moment to THANK GOD for all your blessings! Yes, everyone has stresses in their life, but just be thankful for what you have today!

So, I am now PRAISING GOD for all he's given me; my wonderful husband, my family & friends, the awesome doctors and nurses in the NICU, and our beautiful baby boy! I am SO, SO thankful for him. He has brought tremendous joy into our lives; made us realize how blessed we are.

We had another good day with Coy. I was able to hold him for 4 hours! The first hour or so, Coy would not settle down; he kept squirming and kicking his legs into me; he then got into a comfortable position and fell asleep. He has been desating more than before, but they say this is expected of a baby of his gestational age. Of course it scares us (especially his grandmothers) when he does this, but hopefully soon he'll grow out of this. His blood gas wasn't where they wanted it last night, so they increased his ventilator rate to 35BPM. I was disappointed this morning, but I know this his part of the ride; three steps forward, two back. Overall, his respiratory function is good--please pray for continued healing and maturing of Coy's lungs. Pray that his oxygen requirement will be decreased; pray for his blood gases to improve!

His feedings were increased to 6cc every 3 hours! This is the most Coy has every taken! He tolerated his first two feeds while we were there, hopefully this continues through the night. Pray that Coy continues to digest his milk, that it nourishes his body, that he will gain weight! Pray against an infection called NEC that has a very bad prognosis for preemie babies. For Coy to be able to stop receiving IV fluids, he would need to be taking 15 cc every feeding. We are working that way! Pray that Coy will be on full feedings soon and his IV can be taken out!

Coy is still on his antibiotics and will stay on them until Wednesday. Thanks be to God for Coy's negative blood cultures! Please pray that he will remain infection free for the rest of his stay in the NICU.

His urine output has been just a little low over the past few days. It is just under the amount that the doctors consider "normal". Please pray that Coy's urine output remains stable and he his able to excrete fluids as he needs to...

Again, we are so thankful for all your thought and prayers!

The video below was made fo us by a friend! Enjoy!
video

Saturday, January 5, 2008

sweet boy


Coy is such a sweet baby boy; we are so blessed to have him. Here is a photo I was able to snap yesterday with his eyes open.

Please continue to pray for Coy's healing! He had a good day! His feedings are now 4 cc every 3 hours; we need to increase this amount daily so he can get nice and plump!


quick update..

Sorry we didn't post last night---didn't leave the hospital until 10 pm; once we were home all the energy I had was used on eating, pumping, and playing with our other babies, Sugar Pie and Dixie...

So yesterday was more of the same for Coy. His oxygen requirement was a little up from the day before, but his NP said this could be due to weaning down on the ventilator----meaning Coy is having to work harder to breathe on his own. But it also depends on the nurse---some nurses are very conscious with the oxygen, others crank it up like there's no tomorrow. Coy does desat (the oxygenation of his blood will drop) at times, but he usually will come back on his own. I was frustrated yesterday when the nurse kept cranking him up on the oxygen every time he would desat. I finally just sat there by the ventilator and every time he would desat she would run over---I just nicely told her to "LEAVE THE OXYGEN ALONE!" It's hard for me to manage my emotions--am I being an overbearing/ concerned parent? or a controlling nurse? I would never want to tell the nurses how to do their job--that would have drove me crazy as a nurse, but I know my son so well, I know his habits and his trends, whether he's acting himself, etc. When she was done with her shift, he had gone from 67% to 48% oxygen--you see, if the oxygen stays high, it can damage his eyes..

So we stayed until 10 pm last night, Chris got to do Kangaroo care--Coy looked so sweet on his daddy. He kept opening his eyes---they are so beautiful! He is so precious!

When we called this morning, the nurse said he was doing fine--he did have a bad blood gas last night so they increased his rate to 25 BPM on the vent. Although I am disappointed, I know we don't want to stress the little man out--baby steps, baby steps.

Please pray today for Coy's lungs to mature! For his oxygen requirement to decrease! For all the nurses and doctors who work so hard in the NICU! Pray that Coy continues to tolerate all his feedings and that his urine output remains regulated!

Thanks to all and GOD BLESS!

Thursday, January 3, 2008

1 Month Down!

"Like newborn babies, crave pure spiritual milk, so that by it you may grow up in your salvation, now that you have tasted the Lord is good." 1 Peter 2:2-3

Coy is 1 month old! Today he had another positive day. They were able to increase his feeds of breast milk from 1cc to 2cc's. We are told that getting him to tolerate his feedings and being able to increase the amount of milk is the next big hurdle. Please pray that Coy will love his mama's milk and his gut will remain free of infection.
Ann Marie got to have kangaroo time again today for 2 hours. Hopefully tomorrow daddy might get a chance to kangaroo, that is if mommy lets him.

I was asked today by a co-worker "when will we be able to relax and breathe easier about Coy's health." Unfortunately, doctors tell us that we can't rest easy until the day we get to bring our little man home. That is what makes this journey ultra challenging especially when we are told that the earliest we can expect to go home is our original due date, March 28th. We want to celebrate the good days but are afraid to get too excited because we've seen just how quickly things can change. Life in the NICU is full of surprises. We are doing our best to stay faithful and accompany that faith with action. When others are responsible for the care of your son it is somewhat difficult to know what action you can take. Right now our action is asking for your prayers, going to the hospital every day, pumping milk, kangarooing, questioning doctors about the gameplan, and monitoring the level of care he is receiving. We are open to any other suggestions!

So tonight we give thanks for Coy's continued improvement and pray for a streak of good days to come.

Specific prayer requests:

  • That Coy will digest his milk and crave more
  • That his stomach will remain infection free
  • That his lungs, heart, eyes, brain, and kidney's will continue to mature
  • That his urine output will stabalize
  • That his cultures will remain negative
  • That he will be able to come off the ventilator soon with minimal lung scar tissue
  • That in the near future Coy will tolerate enough milk that he will no longer need his IV fluids

Wednesday, January 2, 2008

Yeah, for another GREAT day!


"Praise the Lord! For the Lord is good; sing praises to His name, for He is gracious and lovely!" Psalm 135:3

I am happy to report that Coy had ANOTHER good day! In the NICU world, you never know what the day will bring--so of course, we hold our breath every morning when we call to check on him. He had a good night last night--he continued to have good blood gases so they weaned his ventilator setting down more...if he continues to have good respiratory function and they can wean his vent down a little more (his rate is at 20 bpm, O2 at 25-35%, and pressure at 23), his NP (nurse practitioner) said there is a chance he could go to CPAP next week!!!!! That means he will be extubated (no more tube in his lungs) and breathing somewhat on his own!!! (to go to CPAP, he needs a rate of 20bpm, O2 in the 21-28%, pressure of 18) Of course, then his NP told me "baby steps, Ann Marie, baby steps." Yeah, I know, I try to not get too excited, but I think I have the right to dream! On Sunday night, Coy received two doses of a steroid (Hydrocortisone) for his hypotension (low BP)--since it improved his BP and secondly his lung function so dramatically, the docs ordered 6 more doses for Coy...this is the drug that Coy was enrolled in the study for (it ended a week ago, we are fairly sure that he got the placebo)...apparently, they cannot prescribe the drug for only poor lung function yet, just for hypotension...He has responded so well to it, I say GIVE IT to EVERY BABY!! I must give GLORY to the LORD for his wonderful works!

His nurse practitioner then said Coy's next big hurdle is his feedings---meaning he needs to tolerate all his feedings (he is feed via OG tube every 3 hours round the clock). Before they feed him, they hook a syringe to the end of his tube and pull back---if there is milk left in his stomach that was not digested, it is called residual--they evaluate the color of it and can tell if it's partially digested---anyway, we don't want residuals! We want Coy to digest all of his milk every 3 hours! He was started back on feeds today, but only a small amount to get him started--he did tolerate 2 feedings today! YEAH!

Of course, his renal function is always being evaluated since the little guy does like to hold it in for a few days at a time...well, not by choice..
So today, he was urinating just like he should be...he had massive amount of output for two days, now it is regulating..please continue to pray for Coy's renal function, that it will normalize, that he will be able to urinate as he needs to...

Coy did have a spinal tap this morning to screen for meningitis---doctor said they did not find any WBCs in the sample--PRAISE GOD--they are no longer concerned about meningitis...he will stay on antibiotics for another week...please continue to pray for Coy to stay infection free...the goal here is to get Coy on full feeds and off IV fluids & antibiotics so his IV can be removed...babies are at a much greater risk for infection as long as they have IVs...

He weighed 1 lb 12 oz tonight, smaller than I thought but still cute as ever...Coy and his little friend Kyle are the studs of the NICU (they both flirt with the nurses...)

Please pray for Coy's friend Kyle, that God will protect him from any seizures, that he will be FREE of any infections (he just finished 42 DAYS of antibiotics!), that he will tolerate all his feedings, that he will GROW like a WEED, that he will have no more A&Bs (apneas & bradycardias), that God will continue to give amazing strength to his parents and older brothers...

Prayer requests for Coy: that he will remain infection free, that he is pain free, that he tolerates his feedings!, that he continues to urinate just as he should, that his respiratory status continues to improve--that we can go to CPAP ASAP!!

"O taste and see that the Lord is good! Blessed is the man who trusts and takes refuge in Him." Psalm 34:8

Tuesday, January 1, 2008

Thank God for another day!

"I love you, O Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge." Psalm 18:1-2

Thanks be to God for another day! Chris and I were blessed this New Year's; we were able to spend another day with our little one! He had so much energy today! He was waving his arms around in his incubator all day! He is just so funny to watch! I can tell he was feeling better because he had more strength today---he was laying on his stomach with his head facing left, he was able to pick up this head and turn it all the way to the right...he's never done this before! Of course, he could have extubated himself, so he really shouldn't do that, but it was good to see his strength. So, Coy had another good day...

His blood gases were "great" last night---they were able to wean his ventilator down to 20 BPM---this is really good! His oxygen requirement also decreased from 60% to 30-40%--again, really good! Please pray that his respiratory status continues to improve! Pray Coy can be changed to CPAP instead of the ventilator soon!

He continued to urinate at a steady rate today---please pray this continues! He was back to his normal size--last night he weighed in at 2 lbs, however, he still had some fluid on him. I imagine tomorrow he will probably weigh around 1 lb 14 oz--please pray that Coy will continue to grow at a steady rate...

Please pray that he stays infection free! Pray against meningitis; pray that his body will tolerate another week of antibiotics...

Please pray tonight for a family we weren't able to meet; a baby was delivered today at 25 weeks, he was being brought to a bed close to Coy's; the baby died in transport..please pray for this family who is grieving this loss

We are so thankful and love you all!

Happy New Year!

"With long life I will satisfy him, and show him my salvation." Psalm 91:16
Happy New Year! Thanks to everyone for all the kind words! It truly means more to us than you can imagine! We feel so incredibly blessed to have such wonderful support!

We must praise the Lord because he has shown us his presence in amazing ways today! Coy began urinating this morning! (He has had VERY low urine output since last Thursday; he gained 5 oz of "water weight" and looked very puffy) Once he started urinating, it just kept coming! This is great because he needed to get ALOT of fluid off his little body. When I walked in and saw him today, he looked AMAZING! He was so precious! He was not nearly as edematous as he was on Sunday and looked so comfortable. Please pray that Coy can stabilize his urine output; that he doesn't urinate ALL the fluid out of his body; that his electrolytes stay in range

Last night Coy's blood pressure began to drop; this usually puts the doctors into panic mode---they would much rather see high blood pressure than low--so Coy was started on another blood pressure medication. He did not respond to this medication so he was given 2 steroid injections---this worked! Praise God! His blood pressure stabilized and has been exactly where it should be all day! We are so thankful for this. Hopefully he can be weaned off the two blood pressure medications soon! Please pray for Coy's blood pressure to remain good!

Please praise the Lord tonight for Coy's negative blood cultures! Yes, for the past 4days, we've had negative cultures! This is wonderful! Coy's attending doctors and nurse practitioners believe the infection stemed from his old PICC (central) line that was taken out last week (he has since had a new one placed). The consulting Infectious Disease doctors however want Coy tested for meningitis and recommend he stay on antibiotics for 6 weeks! Yuck! If Coy's attending docs agree with these ID guys, he may have a spinal tap this week--however they are only ordering 2 weeks of antibiotics, not 6! Please pray for Coy to remain infection free, that he does not have any form of meningitis, that his body will tolerate antibiotics for 2 weeks.

Please also pray for Coy's lung function! Last night, his blood gases were pretty crummy. The pH of his blood dropped steadily over the night (which is another thing that really gets the doctors squirming) His CO2 level was good--so his low pH was not due to his respiratory function, but rather from all the fluid he was maintaining. He was given some sodium bicarb which he seemed to respond to. His blood gases today were "perfect" according to his nurse and he was weaned down on the ventilator!! His oxygen requirement was also down from 60-70% to 45% when we left him tonight! Please pray that his lung function continues to improve; that his lung tissue is maturing; that Coy will be weaned of the ventilator as soon as possible!!

Please continue to pray! God is here; he is working on our little man! "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24

Coy had a few rough days in a row. Chris and I were talking tonight about just how fast things can change in the NICU. One day we are thinking we have this all figured out, the next day the doctors are calling Coy "unstable." (BAD WORD to say to a mom!) I have been really questioning my faith this week; I have been wavering. Today I feel like a spoiled child--here I was questioning him and look what he's done for Coy! We are so blessed!