I am trying to sneak in a post on my laptop while I sit next to Gracie while she is eating. Things have continued to be a challenge here with her feedings. She lost a little bit of weight and went from 11 pounds at the hospital to 10 lbs. 11.5 oz. on the home health scale to 10 lbs. 11 oz. on the home health scale a few days later and the scale at my pediatrician's office. Gracie is throwing up after EVERY feed. I have slowed her feedings down from 66 ml an hour every three hours to 66 mls over an hour and a half every three hours. She fusses while being fed, then throws up about half way through and then throws up after she is done and then seems totally content and smiles. Then we repeat the process an hour and a half later. I have been trying to give certain meds 20 minutes before a feed and others 20 minutes after a feed to see if that will help with her reflux and digestion. I gave her some meds just an hour ago after a feed and she just threw those up. My pediatrician suggested that if this doesn't improve by my appointment next Wednesday at PCMC, then he thought we should have her tube moved from NG to NJ (from stomach to bypassing the stomach and putting it into her intestine again). If the NJ tube were to come out at home, I would have to drive to PCMC whenever she pulls it out or it gets pulled out. This would obviously be a HUGE hassle. The other option is for her to have an operation to get a G tube which would put a feeding tube directly into her stomach. They would also do a procedure which I forgot the name of, in which they would wrap part of her intestine (?) around the esophagus so that she could get food directly in her tummy but also would not be able to throw up anymore. None of these options are great. She is on continuous feeds at night and does pretty good with that. She throws up maybe one time in the middle of the night and then when she wakes up in the morning, she always has a pretty good puking episode. So, to say the least, it has been a pretty frustrating week at home. It's really hard to care for your child around the clock and see them continually fail. Once again, two steps forward, one step back. We will continue to pray for our little girl and hope we can find something that works to cure the issues we are facing. Thanks for all of your continued support and prayers. We appreciate it so much.
p.s. I have tried giving Gracie a bottle a few times. She fusses and then will finally latch on, drink a little, choke and cough it back up. I have gotten her to take 20 mls a couple of times though, I will continue to try.
15 comments:
You've come so far... just keep your shoulder to the wheel.
Hope things get better so you can enjoy your sweet little one (without the throw up) We will pray for her little body to tolerate her food. We are here to help anyway we can (with your other kids?) Good Luck! XOXOX
I can't imagine what you are going through! Even though it is frustrating I know that the more you serve someone the more love you feel towards them! I'm sure you are feeling that for your sweet little one. We too are here to help. I feel that we've helped in prayer but I could and would love to do so much more. That may sound trite but there are many out there that love you guys so just continue to let people serve you at this time. You are amazing, keep the faith.
Julie
Praying for you!!!!
Keep your faith:-)
Such a bummer! Keep on Keepin' on! You are a wonderful mother!
I am sorry things are hard. I heard that it can be really difficult and that heart road is not an easy one at home. Know our thoughts and prayers continue to be with your family and hopefully things will improve fast!
Heart hugs,
Emily
Good for you, Michele...your patience and diligence will pay off. Gracie stays in our prayers.
20 ml in one sitting is amazing! I know that every step of the way has been difficult - just keep the faith and know that you have lots of prayer and support behind you.
The feeding issues sound EXACTLY like Owen's! We ended up adding rice cereal to his formula and just doing continuous all day and night. It's actually a bit easier than bolus because you don't have to time it .. just fill up the bag and change it every 24 hours :). Slowly but surely after 4 months he is tolerating the 1.5 on/1.5 off. It's just aweful to know that they need the nutrition to grow but they're miserable at the same time. I'd consider trying the continuous for a day and see how she feels.
Owen also grew out of the gagging and coughing everytime he got the bottle... now he just bites and plays with the nipple for an hour instead of drinking.
On the other hand... WAY TO GO on the 20ml's! :)
We think about Gracie all the time.. she looks fantastic!
Andrea
Looking back to last year, feeding stuff was probably the hardest, most frustrating part of Luke's journey. It just seems like a constant process of trial and error, and that can be exhausting. I'm thankful Gracie has a family who will walk through this process patiently with her! She is blessed truly.
Not sure if you've tried this, but Seattle children's hospital sent us home with a styrofoam wedge for Luke to sleep/feed on. It was from the OT/PT department and that did seem to help Luke keep his feeds down more than when he was on his back. Just one more suggestion for you to chew on!
Take care!
Jesse
http://smithfamilyjourney.blogspot.com
That must just be so frustrating! I really hope that things improve quickly and she starts gaining again. We're so glad you have your precious girly home! We'll continue to pray she does better with her feedings and remember we're here to help any way we can.
Love,
Melissa
Hi Michele. I emailed you privately when Gracie was still in the hospital. I'm not sure if you ever received it, as I am sure that you were more concerned with other things at the time. In regards to the G-tube, Carlie had one and it was a lifesaver for us. We would offer her any amount by bottle and then whatever she wouldn't take, we'd place in her G-tube (I'm sure much like what you are doing with the NG). We were never sent home with a NG tube, but I can imagine it can be a little overwhelming. The G-tube on the other hand is much easier to use. It does require them to be put under anesthesia again, but in the long run, it was worth it. Also the other procedure you are talking about, is that a Fundo (sp?)?
I feel your pain with the throwing up, Carlie threw up at least once a day until she received her Glenn. It was explained to me that things just happen because of their little hearts. After the Glenn, I'm happy to tell you that we never had an episode with throwing up again. I think it just takes a lot of patience and time (I always hated feeding time because I knew Carlie was miserable and I hated looking into her eyes watching her throw up).
I pray that things will work themselves out and hopefully something can be resolved soon. Keeping Gracie and your family in my thoughts...best wishes.
Shannon Mason
www.carepages.com
CP:CarlieMichelle
Poor little girl. That's got to be so hard for all of you!
Hang in there. I can relate. Keep trying with the bottles; especially, since it looks like she doesn't take a nuki. Hopefully, the throwing up will stop once she is off some of the med or next surgery. Roman seemed to do better once he had surgery and off meds.
I can so relate. The time Jack came home after his Norwood and before his Glenn was the WORST and hardest and frustrating time for us. The feeding issues are SO hard emotionally. Jack also had the continuous pump, threw up lots, didn't do the bottle, had a hard time gaining weight, took lots of meds but was such a good baby. Keep up the hard work. It will get better eventually. Jack is now almost 10 and heats like a horse. This too shall pass. I would be happy to pass along any feeding tips if you would like them. Just email me at w_vonsosen@yahoo.com.
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