Tuesday, May 20, 2008

update

Thanks for all of your thoughts and suggestions! I can't tell you how much "experienced" moms help me!

We had a visit with the GI doctor today. I feel much better regarding the reflux/DGE (Delayed Gastric Emptying). He had another scary vomit/choke episode yesterday 3 hours after eating. I didn't even think of his DGE being worse as the cause of the worsening reflux/ lowered intake. But when talking to the GI doc, it totally makes sense. We are stopping Reglan and starting on a low dose of Erythromycin which helps stimulate the stomach and empty it. Hopefully, this will help with the feeding/reflux issues. We will stick with Zantac and try the Erythromycin; if no improvement in one week, I will be calling the GI back. He also suggested we stick with the Enfacare and only change one thing at a time. Thanks again for all your cares & concern! Reflux is a much larger issues than just "spitting up". I know all you reflux moms feel my pain!

The GI doc was very concerned when I mentioned the recent bradycardias and apneas. He suggested I call his Cardiologist immediately due to his heart arrhythmia, WPW. Coy did wear a holter monitor that I have not been informed of the results on a few weeks ago. I have a call into them but am waiting to hear back.

I also feel better regarding the apneas. When I told the GI doc that I can physically see his chest rising when his monitor beeps apnea at times, he told me about Obstructive Apnea. This means his diaphragm is physically moving, however, he's not moving air in or out. He also said, if his oxygen saturations drop during these episodes, they are real. I brought him home, and his monitor starts beeping again. I can physically see his chest rising, but also had him hooked up to the pulse oximeter. He was sating 96% throughout the entire "apnea." So, it would be my educated guess, that majority of these are false. I will still inform the cardiologist & pulmonologist about these "apnic" episodes.

We followed up with the Pedi; the blood culture was negative. She feels everything is okay, most likely reflux/ DGE related symptoms that will hopefully be helped with the Erythromycin. She has no explanation for the recent bradycardias or apneas; feels that most likely the monitor is wrong. It will be downloaded tomorrow, so we shall see.

Thanks again for all your prayers and thoughts! We are doing much better today. I am feeling better. When things starting going down, it is just overwhelming. The eyes, reflux, breathing, heart....Thank goodness we have such wonderful doctors and I have awesome support from family, friends, and all of you!

10 comments:

Ann Glowacki said...

Good news, Ann Marie,

Hopefully that new medicine will do the trick! Hang in there... usually as they get bigger, the reflux issues improve. I will keep praying that Coy adjusts well to his new food and medicine and that his heart is just fine! The pictures are too cute... he's got very strategic hand placement!

We're thinking about you...
Ann, Shawn and Jaxson

Knott said...

AnnMarie, Chris, & Coy -
I have thought of your family often over the last month or two since you left the NICU and wondered how sweet Coy and his parents are doing. We met you guys several times in the NICU, but only knew you as "Coy's parents". I am happy to hear that he is doing so well and we will continue to pray for you all. I found your site through a conversation with a chaplain at the hospital during our recent return to the hospital for 15 days. I would love to keep in contact!
Love,
Lisa Knott (Cooper's mom!)

Anonymous said...

We are continuing to pray for your beautiful little Angel's total healing!!! May the Lord continue to bless you and your family.

Melanie Prevost and family.

Anonymous said...

Praise God! You are doing a GREAT job staying on top of all that is going go! It can be so overwhelming, especially that first 18 months! I left another post last night and deleted it saying to only make one change at a time b/c you can easily freak out and start changing stuff and its hard for the specialists to know what's going on...plus its hard on the babies too...anyway, I see your GI doc is all over that approach. Its reassuring to me that even though we are in different cities, the same approach is being taken by our team. I really feel like the GI and pulm docs know, understand, and love their preemie patients. Keep up the fantastic work. You are a super mommy to a very special little guy...I think its so neat how God knew that you would be the perfect mom for Coy!

Praying and rejoicing in the answers...Christy

AZReam said...

Talk to your doctor about RES-Q Infant Wedge & Sling.

It may or may not be appropriate, but you can also get advice from the Pediatric OT Co-inventor via this link:-

http://azream.estoreadvanced.biz/index.php?p=catalog&parent=99&pg=1

Esperanza said...

I know some babys just hate formula... I never gave formula to Liam but I have heard that some children just hate the taste... I also know that some formulas can be very aggressive to baby's stomach so maybe it is just that... with the new meds for the reflux hopefully everything will be back to normal... I always believe in mom's natural instints... so just try to feel your heart very focus on your feelings when something is not going right or as usual... always follow your heart.. I bet it felt well to take him to the ER and keep doing it if your heart tells you that...do not hesitate or think that other people may think you are crazy that doesn't matter at all... always follow your heart girl.. I hope everything is back to normal soon... he is getting lots of weight but I know formula helps to gain weigh faster that breast milk... you did such a wonderful job breastfeeding him...there is a space just for you in heaven...you are such a good mommy... We sent our love and prayers to your beautiful family
Esperanza Orlando & Liam Penaloza

Leslie said...

I ran across your blog through Kyle's and read about the reflux. I may be repeating somethings that you already know...so sorry if you are hearing the same thing over and over. My baby had reflux really bad and we had to do a combo of things. We used (still using) Enfamil AR (the only formula that helped), Dr. Brown's bottles, she was put on Zantac and we used OTC Mylanta here and there, and we bought a Acid Reflux pillow. We used the pillow as a bed and had to velcro her to it. We could never put her flat except changing her diaper!!! I think if you google it you can find it on line. It is expensive so we found a brand new one in a resale shop. All of this combined help so much. I am happy to say that at 6 months we started weaning her off of the meds and pillow...slowly... and now at 8 months old there is NO sign of Acid Reflux. Hope that helps....we will be praying for you all!!

Leslie Greene
Austin, TX

Anonymous said...

I hope that baby Coy is feeling better, checking for an update. Reflux is such a tough thing to get through, prayers for your little guy.

Anonymous said...

Hi there - I'm the mother of a 16mo old former 25 wker & ran across your site via baby Kyle's site. My husband also happens to be a formula rep. He was a little confused by the dr's choice of formulas and said that the reason he might be having some harder stools is the palm olein oil that's used in Enfamil products - it's a cheap source of fat. Neosure is the equivalent of Enfacare and it does not include that ingredient thereby not causing the stool issue. Not trying to persuade you to use the product - just letting you know the science behind what could be the source of the problem. (Then again - it might not be it at all..) I just know that every little thing that can go smoothly at home helps to save your sanity!

Best of luck to you! We'll be praying for your family!

Kelly E.

Anonymous said...

I keep checking to see if you have posted anything new. I hope that everything is going ok. I am praying for you all.