Friday, February 29, 2008
Little Cowboy
Posted by Chris & AnnMarie at 10:49 PM 13 comments
Thursday, February 28, 2008
little champ
"Praise the Lord, all you nations; extol him, all you peoples. For great is his love toward us, and the faithfulness of the Lord endures forever. Praise the Lord." Psalm 117: 1-2
I'm happy to report that Coy had another GREAT day! He took 2 bottles today, (32cc) and it took him only 15 minutes each time to finish! The OT (occupational therapist) fed him this morning and I was able to do it this afternoon! It was awesome to see him finish his bottle so quickly! He had two big burps and then was wide awake! He was so proud of himself! The nurses and OT said Coy is doing "stellar" on his feedings. The OT said most babies finish only part of their feedings and it takes them 30 minutes; she is really impressed with Coy, she said it's very rare what he's doing!!! He's such an awesome little guy! Tomorrow we will try 3 maybe 4 feedings by bottle!! Praise the Lord and keep praying for Coy to eat like a little champ!
He did receive a suppository this morning then had a good poop. Please pray for him to regulate his bowel all by himself! He his oxygen requirement was in the 20s today; he remains on 2L; hopefully they will wean this soon!
He now weighs 3 lb 11 oz! He's getting chubby! And we love it!
Please continue to pray for complete healing of our little man. God is so good!
Posted by Chris & AnnMarie at 10:46 PM 6 comments
Wednesday, February 27, 2008
BIG Day!
"Come, let us sing for joy to the Lord; let us shout aloud to the Rock of our salvation. Let us come before him with thanksgiving and extol him with music and song." Psalm 95:1-2
I am so excited as I am writing this tonight---COY TOOK HIS FIRST BOTTLE TODAY!! Not only did he take it, he took all 30 ccs in 15 minutes and wanted more! He did not desat or brady (drop his heart rate) once! I didn't get to feed him because the Occupational Therapist needed to do it to evaluate his "suck, swallow, breathe" reflex, but I was right there cheering him on! He is such a little Gritbaby and we are so proud of him! This is really a HUGE milestone, I mean HUGE. The OT will come back tomorrow and feed him again, if she thinks he's ready, they'll try 2 bottles per day; the rest of the feedings will be gavage (through his NG tube). Eventually, he'll be strong enough to take 8 bottles per day (one every 3 hours round the clock)....This is a picture of Coy after taking his first bottle!
Today "Grams" Cook was able to hold him for the first time! They both thoroughly enjoyed it! Here is a picture...
We have not heard any results of the latest holter monitor, his heart rhythm has been more stable the past few days! He continues to be on 21% (room air) oxygen most of the day, weaning the liter flow will start early next week...He had another eye exam tonight and Dr. Hittner said "things look good!" These exams always make me nervous! He still is having touble "stooling" without a suppository, please pray for poop!
Our God is such an awesome God. I am in awe of his presence and healing in Coy. It was just an amazing day!
Please continue to pray for Coy. We are so appreciative!
Posted by Chris & AnnMarie at 11:08 PM 24 comments
Tuesday, February 26, 2008
quick update
Posted by Chris & AnnMarie at 10:53 PM 12 comments
Monday, February 25, 2008
fear and joy
"I sought the Lord, and he answered me; he delivered me from all my fears." Psalm 34: 4
"The righteous cry out, and the Lord hears them; he delivers them from all their troubles. The Lord is close to the brokenhearted and saves those who are crushed in spirit." Psalm 34: 17-18
THANK YOU to everyone for the encouraging words! You really pull me out of my "slumps." My always and forever faithful MIL (mother-in-law) reminded me today, "Fear is from Satan." That's all she had to say and I got it. Yep, Fear is from Satan. Satan puts fear in us to rob the joy that God has given. Yep, exactly. God has blessed us in ways that cannot be measured; 12 weeks of life with our baby boy; that's absolutely breathtaking. Joy is all around me; joy is seeing Coy smile, watching him sleep, holding him in my arms, kissing his fingers; God has given us so much joy; Satan will not rob me of this.
Today was AWESOME; full of JOY. My attitude has been refreshed. I am really trying to focus on each day; enjoying each minute; cherishing every second. The first hour I spent with him today, I rubbed the top of his head while he was awake in his house (incubator). He really likes his head rubbed, I think it comforts both of us; his skin is so soft and beautiful. I was able to hold him, swaddled up for 3 hours. He was so content today; just wide awake and looking at everything around him. It really was an awesome day.
His oxygen requirement was btw 21-28% and his feedings were increased to 20cc q3h. We may get to attempt breastfeeding again tomorrow. He needed another suppository (poor guy) to have a bowel movement...It was a success. Coy's doctor told me she was really "pleased" with his progress. She said he looks "really good...." He is 3lb8oz and 16.5 inches long. Please pray for continued healing, continued progress.
Many of you have have thanked us for sharing Coy's journey, but I feel the need to say "Thank you" back for the encouragement, prayers, and wisdom! We are so appreciative.
Posted by Chris & AnnMarie at 10:27 PM 9 comments
Sunday, February 24, 2008
trust in Him
"When I am afraid, I will trust in you. In God, whose word I praise, in God I trust: I will not be afraid. What can mortal man do to me?" Psalm 56: 3-4
I am afraid. I am trying desperately not to be. I can't help it. The fear just takes over me. I pray to God to take the fear out of me; take the anxiety; take the jealousy; take the 'this is not fair' out of me. On Coy's good days, I am blissful, full of hope, full of peace; on his bad ones, it is just the opposite. I have been angry with myself lately; I have been "skipping" ahead in time, thinking about when Coy comes home, thinking about his nursery, painting it, decorating it, thinking about life after the NICU....then a bad day comes and just knocks me off my feet. I am suddenly reminded that although we've come a long way, we have a LONG way to go. I love my child more than words can express and am so thankful for him, but this is not what I had in mind when I found out I was pregnant. 84 days in the NICU. I am still coming to terms with this; trusting in Him is all I have, and I know it's all I need. He has given me so much; I have no reason to not trust in Him always. I am still struggling with trying to find "human" powered peace and comfort; I know it does not exist; I want one of the doctors, nurses, other preemie parents to give me answers, to take away my fear; I know they can't. You see Coy's bad days (and good ones...okay, all his days) take me off my feet and bring me to my knees....Isn't this where God wants us? To look to Him always, to look to Him for everything? I know it is. He is working on me; a work in progress I am....
So Coy had an overall good weekend. We had a big scare on Friday--his belly was very large, full of gas, pushing his bowel into his lungs, compressing his lungs, making it hard for him to breathe. His oxygen requirement was increasing and he was having frequent desats. This was all being caused due to the fact that he didn't have a bowel movement for a few days, poor baby was uncomfortable and clogged up. So, he went back to the CPAP to re-expand his lungs and his feedings were halted until he had a bowel movement. He had bloodwork done to check for infection (a slow moving gut is an indicator of infection.) Thank God that his bloodwork came back normal and he was his normal active self. He wasn't "constipated" as his doctor told me; it wasn't something in my breastmilk; it was just that he has an "immature" gut like all other things because of his extreme prematurity; things don't always work like they should. Please pray for Coy's gut to mature and function properly!
So after receiving a suppository, Coy began having bowel movements on Friday night; his feedings were resumed (6cc) and his XRAY looked much bettter on Saturday, his lungs re-expanded. So, he was taken off the CPAP and placed back on the cannula; his oxygen requirement has been 21-28% since and he has been breathing well.
He is still "throwing" arrhythmias despite being on propranolol. Pedi cardiology came by again on Saturday; they are all-in-all not too concerned about it; they say it's fairly benign unless he goes into SVT or something with a HR greater than 200. The problem is, every time his heart is out of rhythm, his blood oxygen level drops. Here comes my human fear again--We can't take him home doing this. He will wear another holter tomorrow to check things out again...
Please continue to pray for Coy, for his total and complete healing. We are so appreciative of all the love and support...
Posted by Chris & AnnMarie at 9:42 PM 19 comments
Friday, February 22, 2008
good news
"O Lord, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief." Psalm 143:1
So good news, the CBC and CRP came back normal! Coy was acting himself, moving all about, mad at his IV & CPAP prongs, crying at times. These are all good things: no indicators of infection...
He did have two bowel movements today after receiving a suppository; the doctor wanted to r/o infection prior to Coy having a suppository so it took all afternoon for him to get the medication.
The repogle tube was placed into his stomach through his mouth and is connected to low intermittent suction; this is to remove all the air in his belly; his abdominal girth did decrease slowly...
His lungs were being compressed or pushed up from his abdomen; this was making it hard for him to breathe; now that he is back on CPAP his oxygen requirement is back in the 20s; they will do another XRAY in the morning (Saturday) to make sure his lung expansion is back where it should be; please pray for this!
His feedings were held because his stomach was so distended and hard; he was started on IV fluids; please pray they can restart feeds tomorrow and his IV can be removed...
Please pray for Coy's complete and total healing; I have to say I was caught "off guard" today. I wasn't expecting any different from previous days; I think I usually have a "mom instinct" if something bad is about to happen, but I didn't feel it coming this time...
I am thankful that they don't feel there is an infection going on; I am thankful that Coy had two bowel movements; I am thankful he is acting himself
Please continue to pray for Coy's lungs, intestines, digestion, heart, eyes, and brain; I am so thankful to you all; your words and encouragement mean so much to me/us; I was struggling today but feel better tonight, thank you!...I know God is good, I know he is in control!
Posted by Chris & AnnMarie at 9:52 PM 7 comments
a few steps back...
Of course they always tell you here that it's a rollarcoaster ride, a dance of it's own...a few steps forward, a few back...
(I am posting this from a computer in the hospital)
I walked in today and found Coy's doctor, np, and nurse around his bed---by now I've learned this is never a good sign...
They are concerned that Coy has not "pooped" in a few days; he was desaturating more last night and this morning requiring more oxygen; so they did a XRAY and found his belly is full of air pushing his lungs up which is preventing him from breathing easily...
He is now back on CPAP, has a repogle tube in his belly (to remove the air), his feedings have been stopped, and they are attempting to put an IV in him as I type this...
They did a CBC and CRP to check for infection...
Please pray with me today that Coy's bowel returns back to normal, that he stools without effort, that he is able to breathe easier when the air from his belly is removed, that he is free of infection
The bad is hard to deal with anytime, but today it's really hit me; yesterday I was beaming, today I am crying...
Posted by Chris & AnnMarie at 1:42 PM 10 comments
a Wonderful Day! (Thursday)
"I will sing of the Lord's great love forever; with my mouth I will make your faithfulness known through all generations." Psalm 89:1
Please excuse me from my tardy post...both Chris & I were exhausted last night; I stated to make a post, but was too tired to think...
So yesterday (Thursday) I was able to breastfeed Coy for the first time! He didn't get any milk out, but he tried very hard! He was rooting, sucking on his fingers and latching on very good! The lactation consultant and occupational therapist were both impressed with our little man! It was so much fun and I just couldn't stop laughing/ smiling at Coy; he really is such a cutie. The plan is to attempt breastfeeding once daily until he gets the hang of it. Eventually the bottle can be introduced, but for now, we'll stick to the breast. He did desat some during our attempt and required more oxygen; please pray that Coy's blood oxygen level remains high always!
Here are some pictures below...don't worry, the bottom picture he's sleeping...
So, we were able to bath Coy last night and change his bed! He had so much fun and really liked his bath. He was again making me laugh the whole time! His eyes were so big and he just smiled at us. Mommy bathed him and daddy captured it on video. Changing his bed in the isolette is harder than it looks! All his wonderful nurses are professionals at it; Chris & I struggled slightly, but it looked pretty in the end.
He was on 30% oxygen most of the day yesterday; this morning when we called he was on 35% oxygen. Last night after we left Coy had some arrhythmias that caused his heartrate to drop some; they did another EKG. This was the first time these have occurred since he was started on propranolol; please pray for the arrhythmias to subsided and for Coy's heart to function normal! I'm sure I will be talking to pedi cardiology today at the hospital; I will let you know later what they say...
Please continue to pray for complete and total healing of Coy! He is acting more and more like a newborn and it just amazes me how far he's come since day 1. We are so grateful to you all for your continued prayers and encouragment!
Posted by Chris & AnnMarie at 8:53 AM 6 comments
Wednesday, February 20, 2008
quick update
Today Coy had his eyes examined by Dr. Hittner; she said they look good and she will continue to monitor him weekly; she said ROP is like a cancer, it can come back---please continue to pray that it doesn't return; that Coy's eyes stay free of disease!
He was working a little harder breathing today, desating more than he did the past two days; please pray that Coy sustains the strength and energy to remain on nasal cannula! Pray that his oxygen requirement stays low!
Thanks for all your prayers...
Here is a picture of Coy without anything on his face....such a cute little grumpy old man =)
Posted by Chris & AnnMarie at 10:04 PM 12 comments
Tuesday, February 19, 2008
Thanks be to GOD!
"Give thanks to the Lord, call on his name; make known among the nations what he has done. Sing to him, sing praise to him; tell of all his wonderful acts. Glory in his holy name; let the hearts of those who seek the Lord rejoice. Look to the Lord and his strength; seek his face always. Remember the wonders he has done, his miracles, and the judgments he pronounced" 1 Chronicles 16: 8-12
He now weighs 3 lb 4 oz; his feedings are still 27cc every 3 hours....
Posted by Chris & AnnMarie at 10:35 PM 8 comments
Monday, February 18, 2008
NASAL CANNULA!
"The Lord will keep you from all harm, He will watch over your life; the Lord will watch over your coming and going both now and forevermore." Psalm 121: 7-8
I was pleasantly surprised today when I arrived at the hospital...Coy was changed to nasal cannula this morning!! I thought it would be coming later this week, but his nurses, nurse practitioner, and doctor all thought he was ready today. So, here is a pic of him on nasal cannula... (the tape on his face is to hold the OG feeding tube in place...)
So, he no longer has the pressure support to keep his air sacs open and is just receiving oxygen from the cannula. Sometimes babies require more oxygen with this change over, but today Coy was on 21-28% all day! He is doing quite exceptionally and is such a strong little warrior!! Please pray for Coy to stay strong & breathe efficiently on the cannula!
When I arrived today, he was swaddled up so perfectly, sleeping on his tummy. He has a new trick he learned that he showed me several times today....he picks his head up and turns it!! I couldn't believe it when I saw him do this; it's so funny to see him arrange himself like he wants, then falls back asleep! He is a really strong 3lb'er!
His feedings are still 27 cc every 3 hours and he's been tolerating all of them...his blood oxygen level does drop slightly when he's eating--mostly due to the fact that he's working harder eating and has to think about eating & breathing! (a concept that comes natural to most of us--Coy needs to learn it...) Please pray for Coy to saturate wonderfully and breathe easy when eating!! If Coy stays on the nasal cannula (doesn't go back to CPAP, which sometimes happens...) then we can try bottle feeding/ breastfeeding in a week or two! This will be a huge hurdle for him to make---please pray for Coy to be able to "suck, swallow, and breathe" when he is able to bottle feed!
He will have another eye exam on Wednesday...please pray for his eyes to be free of disease!
Thanks to all for your continued prayers! I am in awe and amazement at how awesome our God is! To see Coy daily and to witness the miracle that he is just leaves me speechless in prayer. I usually just repeat "Thank You, Thank You, Thank You...." over and over again...
Posted by Chris & AnnMarie at 10:12 PM 18 comments
Sunday, February 17, 2008
weekend update
He is now on a CPAP of 5 and his oxygen requirements have stayed in the 20's. His feeds were increased to 27cc's every 3 hours. As of tonight, he weighed 3lb2oz and is 15 inches long!!
Please continue to pray for Coy's eyes and heart. He will get weekly check ups on his eyes and he remains on the beta blocker for his irregular heartbeat. Pray that his eye disease will continue to regress and that new blood vessels will grow correctly. Pray that Coy will remain infection free.
Thanks for your prayers.
Posted by Chris & AnnMarie at 8:16 PM 8 comments
Friday, February 15, 2008
Coy loves his paci...
Today was an AMAZING day for Coy...he was weaned to a CPAP of 6 and remained on 21% oxygen all day! This is pretty amazing for us to witness!! His feedings were increased to 25cc every 3 hours and he was waking up 30 minutes early hungry!! He was dressed in his Camo outfit by one of his awesome primary nurses and loved his pacifier....
All I can say is we have an AWESOME GOD and we need to praise him!!
Here are so pictures of Coy today sucking on his paci...
Posted by Chris & AnnMarie at 9:38 PM 10 comments
Thursday, February 14, 2008
awesome GOD!
"Praise the Lord, O my soul; all my inmost being, praise his holy name. Praise the Lord, O my soul and forget not all his benefits- who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's." Psalm 100:1-5
Thanks be to God for Coy's continued healing! Coy was extubated and placed on CPAP of 7 after fully waking up this morning. He has done GREAT so far...he was on 21% oxygen (room air) most of the day...this is better than before! I don't understand how after being intubated, going to surgery, being coded, re-intubated, and put under anesthesia he could come out better than before??? We just have to PRAISE GOD!! Please continue to pray for healing of Coy's lungs; that he will stay strong & mighty and breathe like the little champ he is...
They restarted his feedings at 12cc and will work back up to 25cc gradually...he really liked his milk today...he still takes his pacifier and wakes up when it's time to eat!
I prayed and prayed (with all of you) yesterday for him to wake up...today at his bedside, I was trying to get him to fall asleep!! Oh boy, did he ever wake up....thank you Jesus!
He was really ticked off that he still had an IV in his left arm (he swings his left arm round and round until I put my hand over it and calm him down...he does this everytime he has an IV in his left arm...) His IV will most likely come out tonight or maybe sometime tomorrow...that hopefully will make him a happier camper
thanks to all for the continued love and support! it means so much to us!!
Posted by Chris & AnnMarie at 10:34 PM 17 comments
CPAPin' again...
Coy was changed over to CPAP this morning; his nurse said he was "wide awake." Praise God for this; please continue to pray throughout the day that Coy does well on CPAP; for his heart to beat at a steady rate and for his blood oxygen level to stay high; for his oxygen requirement to remain low....
Posted by Chris & AnnMarie at 10:38 AM 17 comments
Wednesday, February 13, 2008
quick update
"I lift my eyes to the hills where does my my help come from? My help comes from the Lord, the Maker of heaven and earth." Psalm 121:1-2
Thanks to all for the continued support, thoughts, concern, and prayers! We are very grateful to you all! Coy had a pretty good day considering the circumstances. He is still trying to shake off the anesthesia; he became more alert throughout the day but is not back to "himself" yet. His vent support is minimal and he was on 21% oxygen most of the day; we need him to "perk" back up to go to CPAP; please continue to pray for this! We had a big scare last night with the 2am phone call from the Neonatologist; Coy is surrounded by awesome nurses and doctors who we are so thankful for; his ET tube came out accidently dropping his heartrate & blood oxygen level; they did call a code on him however were able to reintubate him quickly; please continue to pray that Coy suffers no damage to his vocal cords or lungs with the ET tube/ intubation; pray he stays infection free.
His feedings have been held since surgery; they will most likely restart tomorrow; please pray that Coy tolerates all feedings when restarted!
He wore another Holter monitor yesterday (throughout the surgery & code!); please pray for good results; a heart that beats just as it should....
His urine output has been adequate...he weighed 3lb 4oz...some of this may be fluid retention from surgery...
Please continue to pray for complete and total healing of Coy; thanks for the prayers for Chris & I; we have definetely felt God's peace over the past two days...
Posted by Chris & AnnMarie at 9:26 PM 9 comments
recovering...
Coy is slowly waking up from the anesthesia; he is still currently intubated; his blood gases have been great today and his oxygen requirement is low; as soon as he wakes up fully, they can put him back on CPAP. Please continue to pray for this!!
Dr. Hittner was by earlier to examine his eyes; she said the ROP is already regressing and I quote "It's a miracle!" So good news!! She will follow him weekly until he is around 8 months of age....please continue to pray for ROP to regress fully and for Coy's vision to be perfect & complete!
Will update later this evening....
Thanks to all who are praying for our little man!
Posted by Chris & AnnMarie at 3:50 PM 11 comments
please pray!
We left the hospital around 1230am this morning after siting with Coy for awhile. He was still very sedated and we were waiting for the anesthesia to wear off. We were home for 20 minutes when our phone rang; it was his Neonatologist; somehow is ET tube came out and Coy's heartrate & blood oxygen level dropped very low; they initiated CPR and were able to re-intubate him. It is now 9am and the anesthesia is not wearing off as fast as they would like to see. Coy is still intubated and very sleepy. Please pray with us today that Coy wakes up with the same "spunk" he usually has; pray that he can go to CPAP ASAP; pray that the CPR that was done last night did not damage any of Coy's ribs; pray that he remains infection free; pray for the nurses and doctors who are caring for him.
Posted by Chris & AnnMarie at 9:10 AM 19 comments
Surgery
Coy was in surgery tonight from 8-11pm; Dr. Hittner said he did well throughout the entire surgery and she feels good about his prognosis. She is hopeful this will treat the ROP however there is a chance it can return. Coy is currently recovering from the surgery; they are waiting for him to wake up from the anesthesia. Thank you for all your continued prayers for Coy; we are so grateful!
Posted by Chris & AnnMarie at 1:19 AM 4 comments
Tuesday, February 12, 2008
Eye Surgery Tonight - Prayers Please
Coy had his eye exam about an hour ago and we did not get the results we were hoping for. His condition has worsened so he will have eye surgery this evening. We are told that the surgery could last from 2-4 hours. Please pray for the doctor that will be performing this surgery. Please pray that the surgery will be a success and Coy will have no long term problems with his eyesight.
He will go back on the ventilator for the surgery so please pray that he will be able to come off the ventilator with no problems shortly after surgery.
This is not what we were hoping for but this is what Coy's eyes need. We are hopeful that they detected the problem early and can prevent any further complications.
Thanks everyone!!!
Posted by Chris & AnnMarie at 5:40 PM 15 comments
Monday, February 11, 2008
one day at a time...
"Let us hold unswervingly to the hope we profess, for he who promised is faithful." Hebrews 10:23
Since Coy was born, for the past 10 weeks, I have tried to take each day at a time. I remind myself daily to not put the "cart before the horse"; to enjoy this time with Coy; to cherish it. Yesterday, I felt like I was sinking deep, drowning in deep water and unable to come to the surface. I've had days like this before, but yesterday was worse; I was completely overwhelmed with emotion; anxiety, fear, worry....believe it or not, in the past 70 days, I have only cried 4 times at Coy's bedside....yesterday was one of those days. The bigger he gets (3 lb 1 oz!) and more he acts like a "newborn", the more I long to hold him and rock him to sleep, to feed him by a bottle, to smother him with kisses, to be his comfort when he's distressed...I am ready to bring him home. Most of the time, I have complete and total trust in the Lord; I know that neither Chris & I, nor Coy, could have made it this far without our Savior; but then there are times, when I am still so confused by everything, questioning, wanting answers, wanting to know what the future will bring...
The reason for my "overwhelming anxiety & worry" yesterday was due to an abnormal heart rhythm that was detected...we've been told before Coy has a condition called WPW, however he's never had any arrhythmias or abnormal tracings on his monitor that any of the nurses have noticed...yesterday he began having PACs and PVCs very frequently...he had and EKG & another Echo (the 4th one..) today....based on the results the Pedi Cardiologist suggested he start on Propranolol, a beta blocker that will help control these "extra" heartbeats...he will also wear another 24 Hour Holter monitor tomorrow...I was told by the Neonatologist that Coy's heart abnormalities would have been present even if he was a full term baby...so please pray for Coy's heart to function normally, without disease or disfunction...
So, after 10 hours of waiting on "the general" Dr. Hittner, we did not hear from her today. I asked several of the nurses, several times to page her for us to see when she would be by...they all kind of looked at me like "Are you crazy?" I guess they call her "the general" for a reason---she's a no nonsense kinda woman if you know what I mean...very good at what she does though....hopefully we'll hear from her tomorrow (2/12)...please continue to pray for healing of Coy's eyes; pray that it's God will to keep Coy free of surgery & for his eyes to heal & grow healthy...
Like I mentioned earlier, Coy now weighs 3 lbs 1 oz! He is "eating" 25cc every 3 hours and continues to tolerate it all! And, finally, he is wearing clothes everyday!!! I love dressing him up! He is still in an isolette which does have warmth inside it, however, the temperature inside the bed is no longer set to vary based on Coy's temperature; he must maintain his own temp!....here is a picture of him in a preemie outfit from today!!
He is still on a CPAP of 7 and was on 26% oxygen all day!! Pretty amazing for us to witness...I am so proud of him for breathing so well...!!
Please continue to pray for healing of Coy...specifically we are believing God will heal his eyes and heart! Please also pray for God to take all the worry, anxiety, and fear from me, that I will walk by faith, not by sight always! We are so grateful for all of you who are following Coy's story and praying for him & us!
Below is a pic of our new nephew and niece, Thomas and Macey, who we were able to meet for the first time this weekend! They are now 1 month old and so adorable!
Posted by Chris & AnnMarie at 10:47 PM 12 comments
Sunday, February 10, 2008
Let me first talk about the positives from today. I just got off the phone with Coy's night nurse and he is officially 3 pounds now! We know he is still really small, but something about 3 pounds sounds good. His feeds were increased to 25cc's every 3 hours and so far he has tolerated all of them. His CPAP was also weaned from a setting of 8 down to 7. The number represents the amount of pressure that he is getting. This pressure keeps air in his lungs when he exhales so they do not collapse all the way. This is good because this will need to be weaned down to a setting of 4 before he can be switched to nasal canula (O2 tube under his nose) so it is nice to start the process.
Now the few areas of concern. Coy's EKG rhythm was somewhat irregular today. We are not sure what this means but he will get a holter monitor tomorrow to check out what is going on. Ann Marie began holding Coy this afternoon shortly after we got to the hospital. For some reason Coy really didn't want to be held today. He kept desating so his nurse decided that he needed to be put back in his isolette. Ann Marie was bummed because she had only been holding him for about 10 minutes. Shortly after he was back in his isolette is when the irregular EKG rhythm started. It was very strange to watch his heartbeat fluctuate so much. It was almost as if the monitor wasn't reading correctly. Either way its better to get things checked out and cardiology will look at him tomorrow.
Coy will also have his eyes re-examined tomorrow. Please join us in praying that his eye disease will be cured and that surgery will not be needed. We were told he has a 50/50 chance of needing laser surgery. We need new healthy cells to grow in his eyes.
Please pray for Ann Marie tonight as well. Today's events shook her up a bit. We cope with our situation differently. I'm able to look at the day as a whole and be happy because the positives outweighed the negative today. Her method of coping focuses more on the potential problems. Basically its just the core differnce btwn guys and girls. It can be difficult sometimes and frustrating when we are dealing with same situation but are in "our seperate places" mentally and emotionally.
Thanks to all of you for your prayers and support. We need ya'll there when we go through our moments of weakness. Thanks for filling the gap. We hope to repay the favor oneday.
Posted by Chris & AnnMarie at 8:46 PM 15 comments
Friday, February 8, 2008
quick update...
Coy had another good day! He is still tolerating his feeds, his oxygen requirement is still low (30% today), urine output is adequate, and his Grandma Kolkhorst held him for the first time!!!
Please continue to pray for our little man! Pray for total and complete healing of Coy; his eyes, lungs, kidneys, heart, intestines, EVERYTHING! I know God is healing Coy; I know he is giving me peace; I feel it; I believe it....
Here are some pictures from this afternoon....
Posted by Chris & AnnMarie at 11:36 PM 5 comments
Thursday, February 7, 2008
prayers please!!!
"But I will restore you to health and heal your wounds,' declares the Lord..." Jeremiah 30:17
Coy had his second eye exam yesterday and it didn't go quite the way I was expecting....
I thought Dr. Hittner was going to tell me his eyes were perfect and she was impressed; Instead she used the "S" word..."there is a chance he will need SURGERY next week..." Huh? I think I just stopped listening to the rest of her evaluation/recommendation...this hit me hard; I literally had a physical reaction to her words; I couldn't breathe, speak, think....I was so confused, his eyes are beautiful and perfect and he looks at me all the time...I couldn't comprehend they are "diseased..."
Dr. Hittner found stage 2/zone 2 ROP in both Coy's eyes; the disease is classified in 5 stages, o the best, 5 the worst & the eye is broken into 3 zones...so no, his eye disease is not "severe", but since his eyes worsened (he had NO disease last week...) so quickly, she is concerned...she will come next Monday to examine him again, if she doesn't like what she finds, he may go to surgery the same day to stop the progression on the ROP....please pray against this! Pray that Coy's eye disease will regress & healthy vessels will grow; pray the he will not need surgery!! If he has to have surgery, they will have to reintubate him due to the sedation....I am terrified of this...
So, yesterday was a bad day for me....I was physically, emotionally drained...I prayed for God to just give Chris and I the strength and endurance to continue this battle with Coy...I prayed for God to take all my anxiety away regarding Coy & the possiblity of surgery...
and, Today was a much better day! Coy and I cuddled all afternoon! I fall more and more in love with him everyday...I just love holding him as he sleeps in my arms; I could just sit there forever and ever and watch him dream...
He continues to tolerate his feeds well; they were increased to 24cc!! We did have on little scare yesterday evening; he had some emesis (vomit) and his nurse said his stomach looked "loopy"; meaning the outline of his intestines were visible through his abdomen...of course, I panicked...this is indicator of NEC, the horrible GI disease that takes the life of many preemies...his nurse called to doctor who came to take a look; she said everything was okay & they would just watch it closely...I was relieved to know that they just suspected it to be air in his belly and everything was okay today...but still, I was just starting to comprehend the eye disease stuff when all this came about....
Please pray against ROP! Pray for God to heal Coy's eyes, that his vessels will grow just healthy and his vision will be perfect! Pray for Coy to continue to tolerate all his feedings and grow strong (he is now 2 lb 14 oz...)! Pray for urine output to remain adequate! Pray for his oxygen requirement to decrease daily (it is now in the 20-30% range!!!).....
We thank you sincerely for your prayers, care, & concern!
Posted by Chris & AnnMarie at 10:12 PM 16 comments
Tuesday, February 5, 2008
Little Champ - Chris
Coy had a good day. Tonight he will get his last scheduled dose of antibiotics. This also means that his IV will be removed from his arm which is awesome. Pray with us that he will remain infection free and will no longer need any IV's. Coy's oxygen requirements were between 25-35% today. He also got new CPAP prongs today which are a little bigger than his last ones. They seem to be somewhat uncomfortable for him in his little nostrils but he kept pulling the last ones out so hopefully these bigger ones will stay in better. Additional prayer request are:
- Pray for Coy's eye check up tomorrow
- Pray for Coy to tolerate all of his milk
- Pray for Coy to require mimimal oxygen levels
- Pray for Coy to gain weight slowly but surely
Thanks so much for the prayers!
Posted by Chris & AnnMarie at 8:40 PM 11 comments
Monday, February 4, 2008
peace & praise
"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4: 4-7
This is our blog; written with truth and honesty; I cannot apologize for any of my feelings; I am human and like everyone else, I have good days and bad ones; I am VERY grateful for Coy; I am very aware of how blessed we are; I am aware that Coy's life is a miracle; I was there when the doctors told us he would not be born alive and this was "for the best" at 23 weeks gestation. I use this blog as a tool to communicate Coy's journey, but with that comes our healing and hardships, emotions, and thoughts; it is honest, regardless if you feel my feelings are right, wrong, or indifferent. My heart ACHES for those who cannot have children, for those who have lost a child/grandchild; I have NO idea of the heartache you have felt; I can not even begin to imagine what you have been through; I can only pray for God's peace to fill your spirit & comfort your soul. However, I do know what it is like having a child in intensive care for 9 weeks ongoing; I can speak for those who have had a child on the brink of life or death, each day passed a VICTORY, each new day to come a BATTLE. I am very thankful, very grateful for these past 9 weeks, but there is a greiving process that comes with the rollarcoaster ride as well; no one wants to see their child ill, on life support, to stand by each day and feel so helpless; my heart soars with each good day and it trembles in fear with the bad ones; Coy has had a string of exceptionally wonderful days, however we are no where near "out of the woods." He has a long way to go; we have a long way to go; and like everyone knows, in this life, there are no guarantees.
So, Coy had another AWESOME day! I was very excited to get to the hospital to find his oxygen on 28%! Each day, his oxygen requirement has slowly been decreased (he was btw 25-40% today)....his nurse said he was at 25% for 1 full hour! (we breathe 21% O2 which is room air...) They decided to wean down his albuterol treatments to every 6 hours; later this week they will start weaning the CPAP...(he is on a CPAP of 8, we need to get to 4)...Please continue to pray for Coy's lungs to be strengthened and matured each new day; pray for his oxygen requirement to be minimal!
His feedings have been going well...he is tolerating all of them! 23 cc every 3 hours! He was very cute today; I know I say this everyday, but he LOVES his pacifier; he chomps on it while his milk is going into his tummy...this to me is a good sign! Babies don't receive the "suck, swallow, breathe" reflex until about 34-35 wks in utero, so many preemies have issues with bottle feeds...as soon as Coy is on the nasal cannula (after the CPAP is weaned), we can try bottle feeds/ breastfeeds...please pray that once we can start, Coy will take the bottle...pray for him to continue to tolerate his feedings...
Coy will have another eye exam this Wednesday by the famous Dr. Hittner; please continue to pray against ROP; pray for his vision to be complete & perfect!
Again, we are so grateful for all the love, support, care, and concern over Coy, Chris, & I. Thank you for uplifting us in prayer; for sharing your stories, heartaches, and encouraging words. I cannot even begin to express our gratitude.
Posted by Chris & AnnMarie at 10:10 PM 15 comments
Sunday, February 3, 2008
weekend update
"Dear friend, I pray that you may enjoy good health and that all may go well with you, even as your soul is getting along well." 3 John 2
Today I woke up in "one of those moods" again. Frustrated, angry, confused, hurt....I knew it was going to be one of those "tough" mornings for me. I still have these every once in a while. I fall off the "grateful horse" and start sulking in the "what coulda, what shoulda" been. This is probably because my original due date (3/28/08) is fastly approching. I think about how pregnant I would have been/looked, how happy and excited Chris & I would be, how the nursery would be almost complete, how my baby showers would have been....I still feel cheated of this; cheated of the ignornat bliss most pregnant women feel. Many people ask me if my NICU nursing experience "helps" me cope and understand our situation with Coy; the answer is NO! My life is forever changed; my "future" pregnancies are forever different; I cannot and will not be one of those "cute" pregnant people who float around with bliss and glee. I don't have that option anymore. Not only have I worked as a NICU nurse, but Coy is surrounded everyday by the "worst of the worst". Not just preemie babies, but babies born full term, very sick babies...My head goes round and round with trying to diagnosis myself; why did I have Coy at 23 weeks? I had signs/ symptoms of PTL (pre term labor) but my doctor brushed me off, said it wasn't so; I saw her on a Monday, she told me "everthing looks great, see you back in a month.."; my water broke 3 days later; I have seen her twice since his birth; still, no answers..."no way to know..." So what happens next time? How is this possible in modern medicine? As selfish as it sounds, I am mourning the future along with the past...
So after our awesome church service today, I again felt God shaking me out of my pity party. I realize how lucky I am to have a son born at 23 weeks who is currently 9 weeks old; I understand the odds have been stacked against us tremendously; I realize what the future could potentially hold for Chris, Coy, and I....I chose to envision the future a happy one, full of joy! I feel God comforting me, telling me that all will be okay. Looking back, I was NEVER comfortable with my pregnancy (ask my coworkers & sister in law!)...I just could not relax; my instinct told me something wasn't right; everyone thought I was paranoid; I thought I was going crazy....God has a way of talking to us; we just have to LISTEN! He has my attention now; and I know he has your attention as well...
Now about Coy....he's doing GREAT! His oxygen requirement was between 32-40% today and he destated only a few times to the high 70s! This is awesome for me to witness because there were days when he was on 100% oxygen and desating to the 50s & 60s...
Daddy was able to hold him for 3 hours today! Chris was really overjoyed; to hold his son in his arms; he was just in awe of how beautiful he has become...
Coy had one of his awesome primary nurses today (& yesterday) who put clothes on him while we were holding him...today he wore his Camo outfit! Chris was telling him all about how they will go hunting one day...it was very sweet to see...
His feedings were increased to 23cc every 3 hours...they have increased his feeding time to 1 hour from 30 minutes because he's had some "spit up" recently...
He only has a few more days on antibiotics then his PICC line will be removed..
Oh yeah, he weighs 2 lbs 12 oz and is 14 inches long!
Please continue to pray for the complete and total healing of Coy. Some things we are in need of prayer for:
- for Coy to continue to tolerate his feedings without reflux!
- for Coy to not have any "oral aversions"
- for his lungs to continue to grow and mature
- for Coy's oxygen requirement to continue to decrease
- for Coy to tolerate lower CPAP settings
- for Coy's eyes to mature; for his vision to be perfect!
- for Coy to remain free of any infections...
I can not tell you enough how grateful we are for all of the amazing support and encouragement!
Posted by Chris & AnnMarie at 8:23 PM 16 comments
Saturday, February 2, 2008
quick update
Yesterday Coy had his eye exam with Dr. Hittner....she said he does not have ROP currently, but his vessels still have a ways to grow...she will come back once per week to examine him and check for ROP...overall, this is good for now, and she will keep a close "eye" on it...
Coy continues to mature and grow! He is acting like a real newborn, which even his nurses have noticed! He loves his pacifier....He is even gets fussy when he doesn't like the way his CPAP prongs are positioned or when he has a dirty diaper...
He received his 2 month immunizations yesterday...so far, he's reacted well to them...
Please continue to pray for the complete and total healing of Coy! He is so adorable and his strength is amazing. Pray for continued maturity of his eyes, pray for his oxygen requirement to be lowered daily (currently on 30-50%)....
Posted by Chris & AnnMarie at 8:09 AM 7 comments