Wow - I received so many responses to my last post - comments, and emails and calls. Thank-you so much! And thank-you for praying. I know there are people praying as well who didn't send notes. I have had only one hand free for most of yesterday and today (Rachel needs alot of care) so I haven't been able to respond to you the way I would like. I'm not that good at one handed typing. But I wanted you to know that I have sensed your prayers and you have deeply encouraged me.
I have loved hearing your stories. Please keep sharing them with me! I may not respond right away but I read everything - sometimes crying, sometimes laughing as I read. What a journey we are all on. Some stories are so similar to our own. These past few days, you have been reminding me of the goodness of God. Your stories reminded me of this verse...
"He who goes out weeping, carrying seeds to sow, will return with songs of JOY, carrying sheaves with him." Psalm 126:6
I am feeling much better emotionally these days. But feeding Rachel is such a full-time job that I still feel exhausted in every way. She is having so much trouble eating. It seems like she is ferociously hungry and yet when I give her milk, she sucks once and pulls away and cries. And then she fusses constantly, probably because she is hungry. (I'm guessing) It has been a battle just getting her to drink 10 mls at a time. Yesterday I posted a note on FB asking you to pray because I just didn't know what to do for her. Perhaps God was responding to your prayers....because in the afternoon, she suddenly drank 75 mls at one time!! This is virtually unheard of for her! It was a wonderful reprieve.
She had a rough night (according to our respite worker) but fed ok. Then today she was having trouble drinking again. She finally gave us some smiles this evening, but they are more rare these days. I miss them. I want to know why eating is so difficult for her...and it is hard sometimes to wait for the answers we want. She doesn't seem to be sick at all and this has been a problem for quite awhile already. Is there anyone (with a child with heart issues) reading this who has faced feeding issues like this?
Thank-you so much for your prayers.
So glad that you felt the prayers and encouragement from all of us that love you so dearly. May God continue to give you answers to prayers and joy to sustain you (and stories to give you the chance to have a good belly laugh!). We will continue to pray for Rachel and her feed issues.
ReplyDeletekendra, i will also pray that rachel is able to eat as much as her little tummy wants! i don't know anything about babies with heart problems, but do you think it hurts her to suck? does she have any sores in her mouth? i will pray that you are able to feed her full bottles whenever she is hungry! i hope you all have a truly wonderful thanksgiving! we love you!
ReplyDeleteKendra,We will pray that what ever the problem is with Rachel's eating will be found.I pray the answers will come your.May your time with family at Thanksgiving be a blessing to you all.God continue to give this family the strength they need.
ReplyDeleteJanet M
I'm coming to your blog late in the game and just read this post. Have you addressed the possibility of reflux yet? All three of my kids had reflux due to a milk allergy (not lactose intolerant, but an actual allergy to a protein in milk). All three of them would drink a tiny bit and pull away and cry - often they would arch their backs as well. Surprisingly enough, my CHD baby does not have a horrible milk allergy, but has pretty bad reflux...and he's really difficult to burp - even at a year.
ReplyDeleteI'm sure you've explored this, but if not it could be the problem.
Good luck on those feedings, mama. I'm sorry you're so tired. I seriously feel like I'm losing my mind when I'm exhausted - I'm just not the mom I want to be. Praying more rest comes your way soon!
Just read further down that you are trying reflux meds. Zantac did not work for any of my kids - prevacid did help, but not a ton until I took milk out of my diet (I was breastfeeding and would supplement with soy formula). It took a few weeks to notice a difference, but it was a HUGE difference. Also, if you do try prevacid, see if you can get the solutabs. I had to cut my son's in half (he was around 7 lbs) and mix with a tiny bit of water about 1/2 hour before his feedings. MUCH easier to get down that the nasty suspension form (tastes like baking soda).
ReplyDeleteHope this helps...