I want to begin by thanking each and everyone who has been praying for Magdalena and her family. She is doing good at this time and praying for more time if that is God's plan. Please continue to keep them in your prayers.
Overall Annabel has seemed to be doing ok. In the last month I have tried to up her feeds as to put a little weight on her. The dr. wanted 1 pound in the next 3 months. First off, since Annabel had her feeding tube placed she seems to not be comfortable with her feeds. She is always ok with being spoon feed her baby food, but not any liquids. Annabel has been tested many times over for reflux. Not just with barium swallows, endoscopes and then a ph probe. Never has she showed signs of GI reflux. But now there is not a doubt in my mind that she has this. Just yesterday after feeding her 4 oz. of Pediasure in her tube if came right up through her mouth. This happened so fast, I was shocked! She is gagging and wretching after each meal. She has been up since 3:30 a.m. She took a very short nap from about 8:15 a.m. until 9 a.m. We have just returned from her therapies and she is still awake. My gut says stop with the tube feeds and just feed her the baby food. But then she has the UTI issues which she needs the liquids to help in that area. I guess I had become too comfortable with each day! I am hoping and praying that things become a little more settled quick. If anyone has experience this since placing the tube, I would welcome any advice.
Annabel will begin school on the 25th. She will be so happy to see her teachers again and I know it will be good to get back to a regular schedule. We will probably lose our wonderful nurse LaToya. I will not be able to provide enough hours in the evenings to keep her. It is so hard for me to justify her going to school all day and then have someone else come in to care for her. I keep thinking where is my mommy time.
8 comments:
Oye Cathy, I am so sorry that our little Annabel is suffering with this! I wish I knew of a solution for you but I don't. Abby because of her cleft automatically got the Nissen Fundlopication in conjunction with her mickey button so she would not have re-flux or asperate. When she was seizing all the time (before Sabril) she would seize so hard she would throw-up, choke and all that yucky stuff... praise God for the suction machine. But now we do not have this issue. I can tell you what the doctors told me about the sphincter in the throat that shuts when we swallow is very weak on little ones and gets stronger with time as they grow. Maybe little Annabels is weak? Something to ask maybe.... Bless her heart and bless yours too! Ohhh when I read that she has been up since 3:30am yikes my heart went out to you.... how I know of the early morning hours and what it does to our momma bodies! I will pray for strength for you and that Miss Annables situation gets better. I hope that school will be a blessing although I am sad that you might loose your nursing. I know how I depend on them so.... I too wish the miles between us were shorter! I miss you and long for us to be able to see one another again with our girls! You are in my thoughts my friend and loved here in Colorado! Tam
Alex started to throw up after he got the mic-key, he never did, and now he does everyday, a few times a day. I dont really have an answer. Ihave heard about a medicine called rigalin or reglin, it helps the stomach empty faster, but there are some side effects I didnt want to deal with. Ask your GI about it. Im sorry. Reflux is our biggest issue right now.
Hi Cathy,
Vera's mom here. Yes GI reflux is Vera's main issue as well. We find that keeping her upright throughout the feed and with minimal movement is our best bet to no vomitting. And keeping her upright up to an hour after the feed. Also not to place her in a sitting slouching position as that seems to force it out. Some say minimal swirling of the milk to dissolve the powder helps. So not too much air is mixed in. Hope this helps.
Cathy,
I am sorry to hear that this is such a problem for you and Annabel and I will be praying you find answers quickly. I am no help to offer advice here but I will pray for this to be resolved and healed for you. I love you and hope that you have gentle mommy time with your little girl. She gets cuter by the day, I love her pictures. Have a wonderful weekend.
Love, Laurie in Ca.
She is just too precious! I LOVE the outfit!
I'm sorry that she isn't doing well! Gavin gags, wretches and spits up several times a day. It's so sad watching our little ones suffer and not be able to do anything about it! Gavin had a nissen done along with his g-tube surgery, but he still does this, so I don't really know if there is a solution unfortunately! I pray that you are able to find one! Let me know if you do!
Give your sweet girl a squeeze from me! God Bless her and your wonderful family!
Cathy,
Would it be possible for you to use the feeding pump to spread out the time she needs to receive the 4 oz? I know with Ash, we aren't able to bolus feed her because her little tummy just says, "no". I use the pump for 2 hours in the afternoon to get those ounces in her rather than bolus them like we were told to do. It just works better for us. In Ashley's case vomiting is a dangerous issue because it lands her in the hospital fighting for life because she tends to aspirate into her lungs. Anyway, our solution is the pump. Slowly but surely getting those calories into her in the middle of the day(as well as her 12 hours each night as she sleeps). Don't know if this helps but I thought I would offer. By the way, I have a gift for Annabel and would love to send it your way. Could you e-mail me a shipping address? Take care. Trish
Cathy-I will be praying that God gives you and Annabel a quick solution. She is so precious. There is nothing like the peaceful picture of our sweet babies sleeping. You are a blessed mommy.
In Christ-Stacy
She is so beautiful, Cathy, and I love her sweet little ankles and how they are crossed. She looks so peaceful!
I wish you many blessings. I will pray for you. God bless,
Leah
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