I just got off the phone with Dr. C, the developmental pediatrician who has been helping us with Clara's eating issues. When I weighed Clara on Tuesday she was only 12 pounds, 12 ounces - a five ounce gain in 20 days (25% of what we would have liked to have seen). She's been taking 1-2 bottles a day with rice cereal in them for extra calories. Unfortunately, the rice cereal bottles fill her up so much that then she won't eat again for about five hours. So even though we're getting more calories in that feeding, she's dropped a couple of feedings in exchange. Not so good.
Our new game plan is stop the rice cereal and instead give her bottles of breast milk fortified with formula so they're still 27 calories per ounce (regular breast milk is 20cal/oz), but hopefully will move through her system quickly so that she'll be willing to pick up a few more feedings a day. We're also going to add a third bottle daily with this concoction, which means I will have to really pick up pumping again too. *Sigh*... I thought those days were behind me.
I think what has me the most scared and worried is that the first thing Dr. C said when she called was, "I really didn't want to put a G-Tube in this baby." ME NEITHER!!!!! I know it's not the end of the world and that we've been through worse already, but I really thought that we had turned a corner on the possibility of a g-tube. It's another hospital admission, re-intubation, another surgery, a semi-permanent port in her belly..... I desperately don't want any of that.
We've got two weeks on this new game plan. I'm preparing myself to hunker down again and focus on feeding as much as possible. It's frustrating because when Clara wants to eat, she eats great. But if she's not interested, you cannot make a baby decide to suck and swallow. We'll do another weight check in two weeks and re-evaluate at that point.
We ask humbly, once again, for your prayers.
- Please pray that Clara will tolerate the formula additive to her bottle (she didn't in the hospital) and have no trouble taking it and keeping it down.
- Pray that she will increase her feeds throughout the day and take in more ounces overall.
- Pray that she will gain a lot these next two weeks - a pound would be amazing. Shoot, half a pound would be okay, probably. But we need more than a quarter ounce a day for sure...
- Pray that I can pump enough to keep my milk supply going (who would ever have thought that would have been an issue after all the oversupply problems I had initially?)
- Pray that we will have the wisdom to know how to continue advocating for Clara. I really don't think she needs a g-tube and I'm pretty ready to fight for that right now. But I want to be careful about not sticking my head in the sand and doing whatever Clara really does need. Even if it's a g-tube.
-Pray for peace for us. Since Clara has been home from the hospital I have had some weeks of intense worry and fear and anxiety about her weight gain. I have had other weeks where I was totally relaxed and hopeful and calm and peaceful. I know that Clara and I both do better when it's the latter, but I feel myself tightening again into worry and fear.
We remain so grateful for this community (physical and online) who have prayed and are praying so faithfully for our sweet girl. Thanks for continuing to pray us over every last hurdle.
|If love was all it took to make her grow, she'd be gaining a pound a day.|
I remember the struggle we went through to try and increase feedings and gain weight. We were fortunate to avoid the G-tube, but we barely did.ReplyDelete
But, I recall the struggle....the anxiety, stress, tears, hopes and fears.
I pray for you, Robert, and Clara,
We're still struggling with this as well. 13 months g-tube free and hoping/praying for a lifetime. Elijah hasn't gained in a month and he's got two weeks until his developmental follow up. I hope he has a growth spurt before then.ReplyDelete
There are lots of steps and options between where you are now and a g-tube, so don't stress too much.
Will commence to praying more on this one. 27 cal can be a terrific boost. I would think Clara would have more trouble with volume than the increased calories, but too much of either one ? make her urp. Easy does it wins the race. Clara has the perfect parents! You two do a terrific job caring for her. She IS gonna grow with time.ReplyDelete
If love helps her grow, as that adorable outfit states, then you have NOTHING to worry about! Clara is the MOST LOVED baby I know. She looks so healthy ... we will continue to pray that she IS and that being petite is NOT a bad thing. No g-tube, Miss Clara .. drink that milk, girl!!!!ReplyDelete
Praying!! She looks soooo great, I know she can do it!! Hoping her belly can tolerate the formula this time. Goodness is getting cuter by the day!!ReplyDelete
Hope it goes well! Sending prayers your way!ReplyDelete
I don't blame you for fighting the G-tube, I'd avoid it any way you can. Will be praying for alot of calories staying down and would gladly send some fat her way if only I could. Eat, girl, eat !!ReplyDelete
Praying for some weight gain for Clara,little to no stress for Mommy and Daddy. I know she can do it.Clara is strong and she has already overcome so much in just a short time so she can gain some weight without any trouble.Sending you love and prayers always.Love all the outfits too!!ReplyDelete
Have you tried just feeding her your "hind" milk when you bottle feed her? It is supposed to be the more richer part whereas the first few minutes of pumping is more diluted? Just wanted to throw that out there for an idea. Also, increase your fat intake to make your milk more rich and contain more fat. Praying for a good weight gain for her!ReplyDelete
hi, i found your blog through amanda schreiner's (harvey) blog. i just wanted to tell you that i will be praying for your sweet clara. i would love if you would pray for my sweet lucia as well. i feel instantly bonded with you as i read your blog since our precious babies have gone through so much these past few months. different reasons but same rollercoaster of emotions. God is magnificent in the peaks and valleys though. :)ReplyDelete
As the mom to a CDH survivor who was only 11 lbs 2 ounces at 6 months old and less than 15lbs at 1 year old, and never had a tube after coming home from the hospital - Clara, to me, looks fabulous and healthy! That's what my pediatrician and surgeon always said, it doesn't matter as long as she is staying hydrated, she is healthy, and she is gaining- however slow. Dr. Kays told us he would always rather see a baby gain 1/2 a lb eating on their own than a baby gain 1 lb being fed through a tube. But I know that struggle! My 2 1/2 year old just hit 4% on the growth curve and I thought her pediatrician was going to jump up and down (she is a 60 year old lady so that would have been pretty fun to see =)). She stayed negative on the growth curve her whole first two years of life. They should not compare Clara to other babies her age, they should compare Clara to Clara. Just keep working it and trust your instinct. You will know if Clara is struggling and needs it to stay healthy, otherwise, just keep plugging along and you will make it!!!!ReplyDelete
Mom to Dakota 12-25-2008
I have to agree 100% with Jennifer Tenney. Even with a gtube she might not gain any faster and her body may not be able to handle so many calories either. Good luck, I think she looks fabulous. And before you know it, you will be only posting the typical medical updates, like "clara got her one year shots today etc":)ReplyDelete
Miranda, Mom to CDH Angel, Grace
I agree 120% with Jennifer Tenney as well. Does Clare's weight fall below 5% on her growth chart? How about her HC and length? Does she quilify for "Failure to Thrive (FTT)" to need a G-tube? Clare looks so happy and healthy. She is 5-month-old and already doubled her birth weight, which is totally normal (healthy infants usually double their birth weight by 6-month-old). I don't understand why her pediatrician needs to jump up a idea for G-tube. The doctors should INDIVIDULIZEDLY treat each patient, instead of only memorize the NORMAL numbers from a text book.ReplyDelete
Chrissy and Robert,ReplyDelete
Your precious Clara has come so far and she is so beautiful! Thank you for sharing your lives with us..you see, your life journey is a testament of your faith and God's promise to care for us. This time of slow progress in weight gain is no different. God will continue to love and care for each of you. I will be in prayer for Clara to gain some weight and for God's comfort and peace to fall on you in the waiting.
I just want to encourage you and pray for you in this. My baby never had medical issues and yet has always been very low on the growth scale. He was not even 12 pounds at 5.5 months and yet he was happy and thriving and slooowwly gaining. He was solely BF and i swear many doctors don't understand that or what a "normal" weight gain is... babies are all over the spectrum! But they lay on the guilt sooo much. I pray you know everyday that you are providing everything sweet Clara needs and that you have peace and discernment. And BTW... when you really do start solids at 6 months... her weight gain will accelerate dramatically.
Jennifer and these posters above are right. If she is not failing to thrive then just keep doing what you are doing. God made you body to be able to feed Clara. It will!!! Breast milk is faith in liquid form believe in it even if you can't see it! Everyone gains weight in their own time. You are a great Mom to an amazing baby. Trust your "Mom gut" b/c it often knows more about what is right for your baby than any degree a doctor can have. I'm praying for y'all.ReplyDelete
As a mother to a BF only baby (but, no health concerns), I really believe MDs just don't 'get it'. Clara isn't typical in the common sense, and as a BF baby, she is even less typical! If there isn't a 'problem', leave it alone. Not gaining weight, short of a FTT situation isn't a problem. She is growing/gaining/milestoning, etc. This may just be Clara. This may just be Clara now. She isn't a % on a chart (that doesn't address BF babes to begin with). She is uniquely her own baby, and perhaps a petite little bundle of joy!ReplyDelete
Hang in there, and be strong.