Tuesday, April 8, 2008

frustrated and sleep deprived

(this post may sound negative...I am not meaning it to be...just very tired......)

"But I call to God, and the Lord saves me. Evening, morning and noon I cry out in distress, and he hears my voice." Psalm 55: 16-17

So, we started Coy on reflux meds on Friday evening (Zantac and Reglan) and have seen a great improvement during feedings! He no longer is arching his back or retching in pain; he's even had minimal spit up as well (the medications do not prevent him from spitting up; the Reglan empties his stomach faster (so he is not spitting up hours after eating) and the Zantac treats the heartburn feeling that he is having). With that said, we are now having problems getting the medications in him! For the past two days, he is now choking on the medications and having having bradys! I am doing all I can to disguise the taste, even breaking up the medications so he only takes one per feeding (he's suppose to take both medications 3 times daily 30 minutes prior to feeding)....Now, we have a catch 22--which is worse, the reflux? or the choking on meds which he aspirates which can cause pneumonia? We had a visit to the pediatrician today and she seems to think it will all be "just fine." She told me to stop "worrying so much and just relax." Okay, that's impossible. (keep reading, you will see why...)

I did not blog about this Friday, but on last Thursday night, we had quite a scare with Coy. I put him down in his cradle (at an angle on his right side, never flat!) 2.5 hours after feeding him last and was about to get in the bath. The next thing I know, his apnea monitor is alarming "low heart rate"--Coy had vomited and was choking on it. His eyes were bulging out and he was not breathing (he was not blue yet, but on his way there); the nurse in me suddenly took over and I was shouting orders to Chris. I flipped him over and beat on his back, suctioned him out, and turned up the oxygen. It took him an hour to recover with his saturation---I left him up at close to 1/4L for a good hour. We were both shaken up over this--I mean, I held him for 2.5 hours after he ate last! He was to eat again in 30 minutes! So, I did explain all this to the doctor last Friday--she agreed with me and prescribed the reflux meds.

So since this happened, I have not been able to sleep at night! I have awakened before and found his monitor had alarmed apnea and I did not hear it! So, my fear is that if both Chris & I are asleep, we wont hear the monitor if this happens again. And I know, we can not continue on this schedule; I am literally holding him 22 of 24 hours a day. My poor husband is so tired in the mornings and I am a zombie all the time. So, as the title says, I am frustrated and sleep deprived.

He has been eating much better with the medications and the spit up has been minimal. I am hopeful that we are on our way to more sleep. But still fearful of this happening again. And fearful of the aspirating--I just flash back to the time he was in the NICU with pneumonia and was maxed out on the ventilator!

Please pray for all three of us! Pray that the medications work quickly and that Coy takes them without choking! Pray for me to "not worry" and "to relax."

Now, some POSITIVE news...Coy had another check up today with his regular pediatrician; he weighed in at 6lb4oz & was 19 inch long! Such a big boy (to us anyway)! He received his 4 month immunizations and took them like a champ. However, now he is alittle bit fussy....(gave him some Tylenol...)

And, his saturations have been great--mid to high 90s--even without his oxygen in. I have been watching him closely since Thursday night; he is not breathing harder or having any retractions. He's breathing great, which is a good sign. And he is still eating well most of the time.

Thanks for all your thoughts and prayers! We are so appreciative! And so thankful for all your good advice!

21 comments:

RyanAndrew2007 said...

I will continue praying. Coy is an amazing little guy. You guys are doing great!

Julie

Anonymous said...

With my son, we would put the meds in a nipple of a bottle with a little milk and just held it in his mouth. (Just take the top off a bottle, squirt the meds in it, add formula and just hold it in his mouth as you would a regular bottle. If they are hungry, it's much easier.) Usually, I mixed the meds in his entire bottle, and he never knew the difference. It still worked even though he was supposed to take it 30 minutes before. This was the only way I could reasonably get 6 medications down him 2-3 times a day. It was so stressful. The bottle nipple was great and he took it at his own speed instead of shooting it in his mouth. That choked him every time. We had the same scare after meds once in the hospital and it totally set him back with his sat levels for 2 days! I hope this might help. You don't even know me but I found your blog through someone else. My son wasn't a preemie, but was born with a rare lung disease and was in the NICU for over a month and on oxygen for 10.5 weeks. I understand a little of what you're going through. I am praying for Coy and for you. It does get easier....

Jill

Anonymous said...

I'm so sorry you had this recent scare! Will the dr. allow you to place him on his stomach since he has a monitor? We found that our 26 weeker can only sleep on her tummy; apparantly the acid levels go up when you're on your back. Also, we used a tucker sling for the first 3 months and it was a huge help. http://www.tuckersling.com/

I'm praying you get some rest soon. I remember well how it feels to hold the baby upright like that - it's so, so hard.

Anonymous said...

Wow... I will be praying for you all. Know that God is watching over you all. He has his arms wrapped around Coy. I pray that you get some more sleep.

God Bless
Shari Cagle

Creative Escape said...

ANNMARIE-

A TID-BIT OF ADVICE THAT I HOPE CAN HELP.

MY SON WAS BORN WITHOUT A THYROID & HAS BEEN PRESCRIBED A MEDICATION THAT ONLY COMES IN A PILL FORM. WE WERE NOT ALLOWED TO GIVE HIM HIS MEDS WITH A FULL BOTTLE BECAUSE (IF BY SOME CHANCE) HE DIDN'T FINISH IT, WE WOULDN'T KNOW HOW MUCH HE HAD ACTUALLY TAKEN. WITHOUT HIS MEDICATION, HE COULD DETERIORATE AND COME DOWN WITH FORMS OF MENTAL RETARDATION. ANYHOW, ENOUGH OF THE MEDICAL TALK.

WE FOUND A PACIFIER ON THE INTERNET FROM A COMPANY BY THE NAME OF ****KIDZ + MED**** WHICH ALLOWED US TO PUT A COUPLE TEASPOONS OF HIS MILK WITH A CRUSHED UP PILL INTO THE MEDICINE RESERVOIR, SNAP IT CLOSED (SO THAT IT WOULDN'T SPILL), AND FEED IT TO HIM BEFORE HIS BOTTLE WHEN HE WAS REALLY HUNGRY.

MY LITTLE ONE, MASON IS A TOTAL BINKY BABY (AND FROM THE LOOKS OF IT SO IS YOUR LITTLE COY), AND THIS WONDERFUL!!!!!!!!! MEDICINE DISPENSER HAS BEEN A GOD SEND.

WE HAD SUCH ISSUES IN THE BEGINNING, AND TRIED EVERY GADGET WE COULD POSSIBLY GET OUR HANDS ON. (ANYTHING FOR MY CHUNKY MONKEY!)

HOPE THIS INFO IS HELPFUL TO YOU!

MAY GOD CONTINUE TO GUIDE YOU THREE.

HUGS,

JEN


KEEP A LOOKOUT IN THE MAIL!

Renee Miller said...

All three of you will be in my thoughts and prayers as always.

Melissa said...

Hi Ree,
I am continuing to pray for you three! I can't even imagine what it must feel like to be so sleep deprived. I wanted to let you know that I am in Houston all week and I would be MORE than happy to help with anything in any way. Day or Night. Please Please let me know if I can do anything!!!!!!!!!!!! Love you!
Take care,
Mel

Anonymous said...

I have been reading your blog for several months although i have never left a comment. I found your blog through a link from another friend's blog and was so moved by your story and so smitten by your sweet little boy that i have been praying for Coy ever since. As a mother of 3 (6, 2, and 9months) I have had *some* experience with sleep deprivation and though sometimes I still feel sleep deprived I have to remind myself it is nothing like those first few months--and you are in the worst of it right now. But it is a season (longer for some than others) but still a season. Lack of sleep affects so many parts of you (physical and emotional) but you don't realize it until you actually get sleep again. I call it the new mom "fog". All that to say that when I read your post tonight I felt that i wanted to write and tell you that i will pray for sleep for you and your husband--as well as healing and safety for Coy. I cannot imagine what you are going through. Oh and btw Coy is so beautiful. I don't even know you but God has put him on my heart and i have been praying for you. I think Coy is so blessed to have you guys as his parents and i believe that God decided it would be you who would raise and care for Coy--and he will equip you. Ok this Christian music is getting me all sappy.

paige

Anonymous said...

My 26-week daughter would have terrible vomiting in the middle of the night and would choke too. Because she was so little she couldn't turn over so she would turn purple. One of her doctors "assured" me that purple was okay, blue was not-I think my response was, "are you kidding me?"-and we didn’t have an apnea monitor! Anyway, this was one of my biggest faith journeys...I too, was so tired from her constant care. I would pray every night before I went to bed that God would wake me to hear her throwing up...many nights He would wake me seconds before she would start to throw up. It was amazing…Keep trusting in Him and praying!

I would recommend finding a pediatric GI doctor for Coy (and a pediatric pulminologist, not to mention a developmental patrician). I hardly used my pediatrician for anything but shots. He is an awesome doctor, but not equipped like the specialists to deal with preemies. Also, you probably had an OT feeding Coy in the NICU, and I would recommend continuing with feeding therapy as soon as possible-they have all sorts of devices and tricks to help with feeding/taking meds. I live in Dallas and we used Our Children's House at Baylor for OT, PT, and feeding, not to mention weekly weight checks. I am sure there has to be something similar where you are. The key is finding people who really understand preemies.

Hang in there…it does get better. That first year was really tough, though. It seemed like at times there was never a perfect solution. You are doing a great job. Keep your faith and try to take care of yourself too…I know it’s so hard…

God bless you…
Christy

Reyne said...

Dear Chris and Ann Marie,
It's been a while since I've written, but you have never been far from my thoughts. Coy is absolutely beautiful! Things must be really tough right now and I cannot even begin to imagine all you are going through. All of the advice from moms who have been where you are seems to be very good and I would think they are the experts! Just remember all those times in the NICU when things looked so bleak, and then just as quickly, they turned around. God has gotten you this far and He will take you through these hard times as well. Hang on to your faith and to your God. Your faith has been an inspiration to so many - continue to let Him be your rock.
Love and prayers,
Reyne

Jodi said...

I remember those early days when we brought Olivia home. It was so scary and I was so stressed and sleep-deprived. Please know that I'm thinking and praying for your family.

jpc said...

I am a NICU nurse and came across your site. I enjoy reading about Coy's progress, and will continue to pray for your miracle boy.

Esperanza said...

Ann Marie... Is Coy sleeping with you guys??? If you are that afraid maybe you can accomodate him next to you in the same bed putting his head on your shoulders... I used to do that with Liam sometimes when he was sick... Your warm heart and love can make him feel more comfortable and you can feel some how relax... Liam took zantac the 3rd day he was born... he was 6 pounds too (like Coy now) eventually he got used to the taste... they were very strict with the dosage but I just gave him zantac 3 times a week right after foods and not before... it really helped... anyway that was me... we pray everyday for Coy... He is such a strong baby I bet he can get throug this soon too... I know it is hard for you to relax and be lay down... just keep doing what you are doing now... be strong and wise for your little angel...at the end of the day remember... it is worth it...
We sent our love
Esperanza Orlando & Liam Penaloza

Robyn said...

Praying for you! Would it help to temporarily move the crib into your bedroom so Coy is closer to you and the alarm is RIGHT THERE where you can hear it better?
Wish I was closer so I could come let you sleep. I'll echo everyone else in saying that it really does get easier--but when I was in the middle of sleep deprivation, I couldn't see how it could ever be better.
Sounds like you're really hanging on much better than most!
Praying for you!! As it says in Psalms, "My sleep will be sweet." We are praying for sweet sleep for you--not tormented or scared sleep, sweet and peaceful!

Vicki said...

Anne Marie and Chris, My heart aches so much for you. I can't imagine coming in and finding Coy choking like that. I'm sure I'd be wanting to stay awake to make sure I could hear the alarm too. Do you think Chris's Mom or anyone else would be able to stay at your house from time to time and spell you so you could sleep? I know it would have to be someone close to you and someone you could trust. Maybe she could sleep during the day so she could be there to stay up all night. (Sorry, Kathy) I just think you both need to get a good night's sleep just to keep your sanity and to keep yourselves healthy. You need that so you can give Coy the best care possible. This would not be a sign of weakness. We could all use help from time to time. And Mom's are usually pretty good at it. Well, that's my advice but it looks like you're getting lots of it. Sounds like you have a lot of people who have a lot of good things for you to try, based on their experiences. I hope it helps y'all. And I hope you don't get tired of our advice. :) I KNOW you won't get tired of our prayers so I continue to keep all of you in my prayers. Take care, Vicki Willis

Anne said...

How scary that must have been for you Annemarie. You, Chris, & Baby Coy are in our thoughts & prayers daily. Hope you guys keep hope & may God give you the strength to get through the nights. Do you best to get some help during the day time and if you do, take a nap yourself. You & Chris need to stay healthy for the sake of your little man who needs you most. We will be praying. Email me if you have a chance @ Doxyluvr78@aol.com
xoHugsox Anne, Brian & Baby Vincent

Anonymous said...

We continue to pray for the three of you. I hope the reflux and heartburn is relieved by the medicine. Luke was on Thyroid pills, Raglan and Zantac as an infant. As someone else posted we found that the pacifier for medicine worked really well. (You can find them at Walgreens or CVS). Luke loved the pacifier so it worked well for him.

Holly, Paul, Luke, Ella and Aaron

Anonymous said...

We continue to pray for the three of you. I hope the reflux and heartburn is relieved by the medicine. Luke was on Thyroid pills, Raglan and Zantac as an infant. As someone else posted we found that the pacifier for medicine worked really well. (You can find them at Walgreens or CVS). Luke loved the pacifier so it worked well for him.

Holly, Paul, Luke, Ella and Aaron

Anonymous said...

We continue to pray for the three of you. I hope the reflux and heartburn is relieved by the medicine. Luke was on Thyroid pills, Raglan and Zantac as an infant. As someone else posted we found that the pacifier for medicine worked really well. (You can find them at Walgreens or CVS). Luke loved the pacifier so it worked well for him.

Holly, Paul, Luke, Ella and Aaron

Anonymous said...

We continue to pray for the three of you. I hope the reflux and heartburn is relieved by the medicine. Luke was on Thyroid pills, Raglan and Zantac as an infant. As someone else posted we found that the pacifier for medicine worked really well. (You can find them at Walgreens or CVS). Luke loved the pacifier so it worked well for him.

Holly, Paul, Luke, Ella and Aaron

Rachel said...

Your story touches me so...we adopted a baby boy 7 weeks ago and I was following your journey at the same time. There were times that when Coy had a bad day, our journey was at a stand still or in a bad place. Many times our highs were at the same time as yours and our lows the same.

We have a sweet baby boy now...so blessed!

One thing my husband and I do is sleep in shifts...I will sleep from 8:00 pm to 3:00 am and then will take the rest of the morning, sleeping on the couch! Each of us gets the opportunity for extended sleep though it is never long enough.

I continue to pray for you...it's OK to express your frustration. We think you are superhuman anyway so you may as well bring us down to reality at some point! :)