Rachael took Jimmie in to see his Pediatrician Dr. S this morning. Justin is on his 24 hour shift and Rachael is completely overwhelmed and feeling "crazy"! So she came to my house to feed Jimmie beforehand and I ended up going with her because she was afraid he would throw up in the car. He didn't throw up in the car, he did one better. He performed magnificently for Dr. S. and threw up at least 4 times in front of him. Two of which were the horrible ones where his eyes bugged out, his head turned red while the rest of him went white and his arms and legs flailed crazily. Then the puke spurted out of his nose and mouth and when he could finally breathe- he screamed.
Dr. S. looked him over and except for the horrible refluxing and puking he looks great! He weighs 8 pounds 10 ounces! Doing all bottles with fortifier has really given Jimmie a much needed boost in his weight gain. His lungs sounded fine and most importantly he was satting in the mid to upper 90's.
However Dr. S. is concerned. He said what he saw Jimmie doing was starting to get scary. He's not turning blue, but Dr. S. said if you had him on monitors you would see his heart rate drop way down. He's definitely vegeling. Also Dr. S. thinks that he may be "micro-aspirating" and that is what is causing the retractions Rachael has noticed off and on in his breathing. This is NOT a scenario that should continue.
Dr. S. is pretty conservative and does not typically like to treat reflux. However he agreed it is definitely time to get aggressive with Jimmie. Rachael did start him on the Zantac yesterday though he only held down one dose. The new plan is he'll be dosed with Zantac 3 times a day and Rachael may add another drug the Dr. prescribed called Bethanechol that is supposed to move the milk through his GI track to his stomach faster. The Dr. also prescribed Prevacid to replace the Zantac if we are not seeing good results with that. From what we understand Prevacid is a more expensive and a more aggressive antacid than Zantac. Ellie- (our pharmasist in the family) please feel free to share what you know about these drugs. (-:
The cause of Jimmie's reflux is his prematurity and more specifically an inmature valve that doesn't function as it should. The antacid doesn't treat the reflux it just takes the burn (acid) out of it. The Bethanechol is what is supposed to help keep the Reflux from happening.
Rachael's facebook status posted last night says, "Rachael is feeling crazy!" Let me elaborate: Crazy in a bad way-- like insane. She has been filled with anxiety and fear about Jimmie's health and especially his breathing. She dreads the horrible traumatic feeding times that come every three hours around the clock. She feels like she should never put Jimmie down because he's much less likely to puke if he's held upright all the time. She also has to pump milk for him every 4 hours. Justin has to work. He helps as much as he can and is also completely tired of the struggle. We are all gonna help them as much as we can, but the burden is pretty big for them right now. They both remind each other they are dealing with this because Jimmie did survive his extreme prematurity. They are both unspeakably thankful for that, but they still fear for his life and his prognosis at times. Rachael has said if she were not so vigilant with her symptoms at 20 weeks (they could have easily been written off as not serious) she would have lost Jimmie. So she feels like she has to be extremely vigilant about every little thing. Pray that she can relax and trust God to guide her.
The truth is Jimmie is doing great! He is breathing without support, neurologically he is on track, he does take his feeds by mouth. The big picture is very encouraging, but what Rachael and Justin are going through right now is extremely exhausting and difficult. Rachael broke down this morning and just sobbed for Jimmie. He is such a fighter and he works so hard to eat and then to see him struggling and in pain is so hard.
Please pray that these drugs work! Dr. S. is pretty confident they will. If they don't, much more serious and invasive measures would have to be discussed. Also pray that all of the TKM Rachael is doing will help the reflux and also help with any side effects from the drugs.
Thank you for fighting for Jimmie, Rachael and Justin.
Love,
Amber
As the mom of a critically ill baby (not preemie and not sick until 7 wks old) I know some of what Rachel is going through. My baby was aspirating as well and I know about the puking and meds and breathing stuff.
ReplyDeleteI had PPD and it only got much worse as my baby was so sick and then recovering. Rachel and Justin maybe should look into some medications for themselves to help with the insanity until they are feeling better about Jimmie and all the stuff going on. I had to do Lexapro and it helped tremendously. I'm off it now but it was a life saver at the time!
"for the joy of the LORD is your strength." (Nehemiah 8:10b).
ReplyDeleteWe're praying for the Lord to fill you with His joy and strength. We love you all so much!
Lots of kisses to Jimmie!
Adrian and Janelle
Sounds like the physician is taking the right approach.
ReplyDeleteZantac is a great first-line agent for treating refulx. It works on histamine receptors in the stomach to decrease acid production. Side effects to look for could be sleepiness,although in some children it can cause what we call a "paradoxical" or opposite effect so it could keep Jimmie awake as well. Only other common side effect would be constipation. Bethanacol does increase movement of both milk and the natural acids produce in the lower esophagus. This should decrease the chance of reflux.
If the zantac does not work, the prevacid is a good next choice. It works different in that it works on what we call proton pump inhibitors, but it still decreases acid production. Common side effects would be changes in bowel movements (constipation or bowel movements. Also could cause flu like symptoms (fatigue, fever, etc.)although this is not common.
I know that Rachel is very in tune to what is going on with Jimmie and should be able to recognize any side effects the medications are having pretty easily.
All of these medications have been researched in children and are very safe and used commonly. Let me know if you have any other questions.
Love you all.
Ellie
I know it is really hard right now, it is for any new parent. You have more to deal with than most. Try to remember this will all pass and it will be worth it. Justin and Rachel remember to hold each other everyday and tell each other how much you love them. It is that love that created this little guy and it will get you through the tough times because you are in it together. I know some grandparents that would love to babysit so you can have some quiet time!! You are all in my prayers, I think of you often! Kathy
ReplyDeleteI feel for you, Rachael! My preemie guy (born almost 12 wks early)did well on Prevacid but it was a long journey getting there.
ReplyDeleteAnxiety during this time is very normal but not easy! I/you made it thru pregnancy by being almost hyper-vigilant. The tendancy after baby is born is to keep it up...I remember thinking that if I never took my eyes off my baby (focused literally & figuratively) nothing bad could happen to him. Too much pressure for any human being to handle.
I think it's super important to meditate whenever you get even 3 minutes. Don't worry about dishes/housework, it'll be there later or maybe a helpful relative will have mercy. :)
When you get time, even one session with a counselor can work wonders for post-traumatic stress, because that's what it is. That and taking a little time for yourself whenever family/friends say, "What can I do to help?"
Good luck and I will continue praying for you and your ADORABLE son Jimmy!!
God bless the three of you,
Mary
For us, Zantac made things better, not WAY better, but just enough to ease all that back arching and fighting during feedings. We didn't try Prevacid, in part due to the side effects. This episode was all over by the time our little guy was 10 months old.
ReplyDeleteWe are praying for all of you!
My twins were on prevacid and reglan and it worked great for them and they did out grow their reflux by about 7 months. Hang in there it will get easier I promise .
ReplyDeleteIn my prayers.
Becky Winbinger
oh guys, I am so sorry that you are having to deal with this. I hope and pray that you can figure out what medications will work for him. and, even though it was traumatic, maybe it was a good thing that Jimmie performed so wonderfully at the doctors today...no messing around, the doc got to see firsthand what you deal with every day, and start fixing the problem!
ReplyDeletealso, maybe look into getting a nap nanny for jimmie to sleep in? Maddy has one and she loves it. it keeps the baby elevated when they sleep and really helps out with reflux. Maddy had some reflux issues when she was around a month old or so. We still use ours because it is comfortable and she likes to sleep in it! the website is www.napnanny.com
love you!
you are in my prayers
ReplyDelete