Even if Brenna hasn't literally been screaming for 5 straight days, it sure feels like she has.
The poor girl is miserable (and therefore her parents are miserable.) And no one can pinpoint any specific reasons at this point.
Yesterday, I was so glad to finally have Brenna's GI appointment, and it went really well. I felt like her doctor and dietitian really took the time to listen to me, and they were humble enough to admit that we would just try some trial and error with the feeding tube and even if they don't have all the answers at first, we will figure out a good solution eventually.
Her dietitian even asked me, "What is your gut feeling, as her mother?" That was refreshing and made me feel like my opinion and observations were worthwhile.
A major "outcome" of the appointment is that Brenna will be having an ultrasound done on her belly on Tuesday morning. Her GI doc said that by feeling around her stomach, Brenna's liver feels enlarged and low in her body. I'm not sure what that might indicate, so we will see what the ultrasound shows and go from there.
She will also be having a urine analysis and bloodwork done, to see if those numbers turn up anything that might correlate with her liver or GI system.
Additionally, we are trying Neocate formula, which is a very basic hypo-allergenic formula, to see if that makes a difference with anything.
In the meantime, we are just trying to keep Brenna as comfortable as possible. She is still very puffy, which makes the doctors suspect a protein deficiency, but thankfully her puffiness has decreased a little today. Hopefully we can get some fluids to drain now, and with being back on fuller feeds, hopefully her protein levels will return to normal.
I think being so puffy is making her skin even tighter and therefore causing her to be in a lot of pain, judging by her high-pitched screams whenever we touch her or pick her up. It's breaking my heart to see her so uncomfortable and inconsolable.
I'm really looking forward to getting all of these tests done to rule out any problems or find solutions to any that exist.
Good luck!
ReplyDeleteSure wish you didn't have to wait through the weekend to get results! Praying you will get some answers and solutions to what is going on in little Brenna!!
ReplyDeleteOh, I'm sorry all this has to be done but I'm grateful they are working so hard on getting things resolved to get Brenna (and everyone) more comfortable. Hang in there, everybody, and PRAY PRAY PRAY. I will too!
ReplyDeletePrayers continuing for you all. I is somewhat refreshing (although still frustrating) to have the doctor be willing to admit they are unsure. Better that than trying to make you think they have all the answers...when they can't possibly considering the rarity of Brenna's condition. Also refreshing to have someone ask what you think "as her mother"! Keep pushing for answer...you will eventually hit on the right one.
ReplyDeleteSo very frustrating to have to wait the weekend! I am so sorry for all of you & it breaks my heart to think of that precious girl in pain. I can only imagine what it is doing to you. Hopefully relief is coming soon. You are such a wonderful mother!!
ReplyDeleteYour theory of the edema causing her skin to hurt sounds very logical to me. We used Alimentum and Nutrimogen years back without success for excessive fussiness and spitting up. The thing that made a world of difference for us was Carnation Good Start which is a whey based formula. Very different situation, but the only way we ended up trying it was at the recommendation of a friend. I am praying for Brenna and for your entire family.
ReplyDeleteMy son used Neocate for 9 months for severe reflux, ezcema, and milk protein intolerance. What a God send it was!!! Good luck!!!
ReplyDeleteAw! Poor baby Brenna! Hopefully she feels better soon. It's so hard to see your children in pain and not be able to take it all away.
ReplyDeleteHi Courtney,
ReplyDeleteMy twins were on Neocate for reflux and a protein allergy. We tried a few different kinds and it was a godsent! I recently switch them over to milk, and I have about 50 can of unopened Neocate. I was holding into it to see if there was anyone we could give it to, I'd hate to throw it out! If you would like it email me at sunnynigro@yahoo.com and I will be more than happy to ship it to you! Praying Brenna feels better soon!
Website www.nsc.gov has much info. I read about 2 follow-ups cases of HI on there. You are probably already familiar with the website. Hypothyroidism a possibility (it would show up in the bloodwork). Prayers headed your way.
ReplyDeleteGod is Good! He has given you this precious child! You as her parents must be very special as well (and your other child) God gives special & wonderful children to those whom he loves and knows he can count on. Thank you for sharing this experience with me. I will continue to pray that a mircle occurs that brings both joy to you as her earthly angels and peace to her earthly body.
ReplyDeletePlease. As a social worker I know that children with special needs are born into both loving and abusive homes. God certainly does not love some children more than others!
ReplyDeleteMy youngest son was born in 1972 and I never thought he would make it to his 5th b-day. He had Stevens-Johnson Syndrone and had blisters all over his body. His skin would peel off including fingernails. He was taken off all formulas and put on a meat based formula. He wasnt able to wear disposable diapers...only cloth. It was a real struggle in and out of hospitals and with 4 more children at home, it wasn't easy. He is now a precious, handsome, hard working 40 yr old and I am so thankful for him. Hang in there and know that you and your precious baby are in our prayers.
ReplyDeleteHey there,
ReplyDeleteNot sure if I have commented before or not....I have been reading and praying for Brenna since she was born. But I can't remember what she is on for formula? I know this post you mentioned Neocate but what was she on before that? I am a nurse and also have a son with A TON of GI issues. Just wanted to send you my email address mssweetpea2000@yahoo.com and we can talk if you would like. Praying for your sweet girl
I have notices that in her pictures her mouth is in an open fixed position. Is it painful for her to close her mouth? If so, that would certainly explain why sucking and eating is so difficult for her.
ReplyDelete