There's definitely been some struggle with discouragement the past couple of days as Seth continues to empty his stomach several times a day and continues to lose weight rather than gain. The GI doc changed his Prevacid to Nexium, and she is considering another formula change (from Elecare to Neocate; some babies like it better). I asked her about goat's milk, but that's not complete enough nutrition; soy allergy usually goes hand-in-hand with milk protein allergy in her experience, and she has yet to see a baby with corn allergy at this age. This formula is essentially pre-digested, but Seth still has a hard time digesting it! In addition, we're still seeing blood from time to time. I know this is a chronic condition for many preemies and may necessitate surgery to help correct, but it's of course hard to see MY child suffer in the meantime, and the surgery is not without its own complications, including severe stomach bloating and pain. I wouldn't want it if I didn't know we could vent him manually using the syringe and his g-tube. We have a general health check-up tomorrow, during which they will note his weight loss and hear the laundry list of ongoing symptoms, so we'll see what the pediatrician says.
On a much happier note, he's doing really well with his various therapies. Also, Gracie rolled over on Monday! Seth is the last hold-out. It's hard to do tummy-time and practice rolling over when it makes him vomit. :(
Spring Break has made things a bit busier around here, especially as we've have lots of appointments to get to. Seth and Will are also being assessed for head re-shaping bands. Their right ears are markedly displaced and lopsided when seen from above, and they both have a noticeable flattening on the right side of the back of their heads.
Will and Marcie were assessed for Early Childhood Intervention (ECI) yesterday and happily did not qualify. It was so cute to watch them be put through their paces. :) They are adorable as they play with and explore toys and faces and surfaces with hands and mouths. I really hope the plastic mat in the room was disinfected because Will kept licking it. Last week David and Grace qualified for ECI just barely, David because he didn't track a toy from above his head to the floor when it was dropped (Will and Marcie, on the other hand, knew to look on the floor to find the toy.), Grace because she doesn't make consonant sounds like the other kids do.
That's it from here for now. Thanks so much for praying and caring!
Love,
Carrie
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| Clearly HANDSOME runs in the Peterson family ;) This is my brother, Kenneth, holding Will |
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| Going . . . |
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| Going . . . |
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| Gone! (But not without swiveling around first in one final gasp of tired effort.) |
OH MY GOODNESS- how I love the Seth pictures! He is soooooo adorable!!
ReplyDeleteWhat does ECI suggest for David? Any therapies? When will they re-assess? I'm glad Will and Seth are being fitted for helmets! They will look super cute!
Carrie, how is it possible to have 3 such handsome boys, and each different from the others too! I'm going through such Jones-baby withdrawal, I can't wait to see everyone this weekend!!
Much love, Katie ("the bint") Pitts
ps. still praying for baby Seth & his little tummy.
Deletexo,
Katie
Ha, ha, I think you are very biased! But yes, I ask myself the same question about the handsome boys. :) We miss you and can't wait to see you! As far as therapies, I don't know what they will do with David. They said he just barely qualified at all and they are not worried, so neither are we. I think he just doesn't care where the toy went. ;) Love you!
DeleteCarrie
That's Great about Will and Marcie passing the test...David and Gracie, it seems like something they can catch up with in time....To Me It seems like Seth looks a lot like Mommy and his Uncle:) Such adorable pictures, L love them...
ReplyDeleteCarrie you and Seth are very much on my heart and fervent prayers....Like you said seeing YOUR child crying in pain ,,you feel so helpless,,and all you can do is pray for God's Strength..I pray for God to be close to you HEART...Remember " God I Don't Understand Be I Believe"
I don't know if this applies or not, but with my son and myself, any sugary food( including fruits) causes LOTS of gas... My son is older, but fatty foods, sugary, or fiber, foods,, causes his system to slow down and he builds up with gas he gets as big as a basket ball and the gas will not pass ....and I am having testing on Friday, because of excessive bloating ( lots of times I look like I'm 8 months pregnant, and they think mine is I do not have the right digestive enzymes... I don;t want to burden you with other peoples problems, but it may or may not be anything to do with Seth's condition... May all sleep in the Peace of Christ tonight. Amen
Hi Brenda,
DeleteThanks for your prayers and advice and encouragement. We're definitely considering every last food possibility and also enzymes. We'll keep you all posted!! And I slept in great peace, thanks. The Lord reminded me that it doesn't help anyone to allow myself to give way to frustration. He knows what's going on and He's in control.
Love,
Carrie
Praising You, Lord, for the quint's continued progress, and asking for healing for Seth, or at least a way to treat his tummy issues and bring him relief. You are the Great Physician and we pray that it be Your will to heal Seth. All honor and glory are Yours. Amen. NKL
ReplyDeleteIf you go to neocate i still have those two jars
ReplyDeleteAmanda in fort wortg
Thanks, Amanda! I'll let you know if Neocate ends up working. Carrie
DeletePraying for answers for Seth and for his mommy's heart as I know how hard it must be for you to see your baby in pain. I have hard time and he's not even mine. Praying more fervently.
ReplyDeleteI respectfully disagree with the doctor on the soy/dairy issue. Our youngest had a sever dairy allergy. She would projectile vomit her formula up (she's adopted although I did attempt to nurse - just didn't work). We switched her to a soy formula and she did great! We knew it was a dairy allergy as anytime she had dairy once she began eating food, she would projectile vomit. We chose to wait until she was 2 and try again. By then, she had outgrown the allergy and has no problem with dairy now.
I also would be willing to at least try the goats milk if it was available. Many babies have thrived on it. (((((hugs))))
Praying for wisdom!
Thank you so much for sharing the pictures of your precious family!
Blessings,
Jill
Yeah, I'm going to fight to try both soy and goat's milk. Too many people have had great success with both! Clearly the milk protein allergy is not the issue as there is no milk protein in his Elecare. So we need to dump that working hypothesis! Thanks, Jill! Love, Carrie
DeleteI am sure you are SO amazed as how far you all have come and how much Jesus has done. Your family has an amazing testimony to the goodness and provision of our Savior and His promises. Continuing to pray for complete healing and strength for all of you.
ReplyDelete-Francis
almond milk might be a choice for him if he has a milk allergy. I have a allergy to anything dairy and almond milk works great...on tastebuds and stomachs!You can buy the milk anywhere in a regular grocery store and is not overly expensive. Praying for each one of you each day!
ReplyDelete