Helpless.
That's how I'm feeling right now.
Truthfully, I don't feel much like writing, but so many people are asking for updates that I figure this is just easiest.
Brenna has been miserable and in pain since Friday morning. Fortunately she's been sleeping decently, but during awake hours, she's been crying or fussing constantly with little relief. We've been alternating Tylenol and Ibuprofen practically around the clock, which affords us a few sporadic hours of comfort each day.
The vomiting is not worse, but is still continuing, despite extremely slow feedings. She keeps the majority of feedings down, but still throws up maybe a third of them. Last night, she threw up so violently that it irritated the wound from her g-tube surgery and she bled a little.
She will only eat about 20-30 from the bottle, and we are tube-feeding the rest. She will pull away and cry out after that small amount.
Some spots on her face, head and chest have opened up bleeding in the past couple of days. We will be seeing her dermatologist today to hopefully get reassurance that there isn't another infection present.
Brenna is very anxious after her week in the hospital. She cries at any movements, changes in positioning, touching...much like when she came home from the NICU. It pains me to see her like that, and I pray that she won't have to experience any health problems for a long time and those negative memories will fade for her.
I've been talking with several of her doctors today about all of these issues, but otherwise I just don't know what else to do besides love on her and make her as comfortable as I can. I hate not knowing what is wrong and feeling so helpless while my baby is obviously in pain and discomfort.
Praying for you guys.
ReplyDeleteMe too, I just can't stand the kitten in so much pain....
ReplyDeleteI will pray. I don't know what else to do but pray. Stay strong.
ReplyDeleteYes, I will pray too. I'm so sorry you are all having to go through all this. I can feel your pain. You all just rest and pray, whenever you have the opportunity. God bless you all.
ReplyDeleteUgh. I've been following your blog for some time now, and have always been amazed by your family's strength. I feel so badly that Brenna is struggling with her feedings after hoping the g tube would resolve some issues. Please know you are her best advocate when trying to get the bottom of things. What a blessed little girl she is to have you as a mom!
ReplyDeleteI'm so sorry. We are praying hard for Brenna and you.
ReplyDeleteWell, this is not the news I had been expecting. I certainly hope sweet little chubby cheeks is having a better afternoon. I will pray for her and all of you.
ReplyDeleteAny chance that some of her general discomfort and crankiness could be due to teething?
God Bless!
We are praying for you all, Courtney.
ReplyDeletePraying............
ReplyDeletePraying for your family
ReplyDeleteHi Courtney ~
ReplyDeleteI have been following for a little while now, and I have to say ~ I am quite taken by your sweet little Breena : )
But, I am also feeling for all you, and your family are constantly having to endure. My whole heart goes out to you, as you are on this constant up and down, ever turning, roller coaster as it's jerking you from side to side. It sure is not the fun amusement park ride of yesteryear, now is it? Those days seem to be over, and now standing in their place are ones of conflicting unending love, yet constant turmoil and pain at the very same time...but how can that be? What kind of life is this?
I'm sorry for the words I may have put in your mouth, as I went off on my very own tangent.
What I came on here to say was something very different. I am not sure if I can offer any help, but I am hoping to try. Our situations are vastly different, but who knows they might run similar lines. I think they will. I hope they will, for you, for your family, but especially for sweet Brenna.
Our then 2 year old Aviana was crossing the street with my parents when I car came and hit my step-father while he was holding her. She landed on her head and as a result is severely brain injured and unable to walk, talk, anything. Kaiser prescribed her formula upon leaving the hospital. The formula had Avi throwing up multiple times a day. We worked with a specialist for a number of months trying hard to adjust the dosage, every which way....to no avail. The vomiting would slow, but never stop, and then just increase some more.
A few months after being released from the hospital, we traveled to Philadelphia to a brain injury institute where we spent the next 2.5 years traveling back and forth trying to rehabilitate her. But upon meeting them, our first question was, "How do we stop her from throwing up?' as it was heart wrenching for her to be brain injured and then for her little body to have to be sick on top of all of that too. Not to mention for us to have to be cleaning all hours of the day and night too, right?
Without hesitation, they told us to IMMEDIATELY wean her off the formula. They said we humans are the only ones that consume milk (dairy) past nursing. Basically, cows are for calves. We did so, and wouldn't you know it, Aviana immediately stopped throwing up, and has never again since 1/25/10. We got home from PA on 12/20/09 and it took us about 1 month to wean her off all the formula she was on. Throughout that month we were weaning, she was slowing to a stop : ) Her hair and nails grew like crazy.
NO ONE, even her best Kaiser doctor could help us!!! The word has spread through Kaiser in the specialty department now, as the people in PA not only transformed Aviana in this regard, but they also transformed her in weight too! In our case, they blew her up to the tune of 14 pounds in the hospital : ( She has been perfect since.
ReplyDeleteI know that giving Brenna a whole foods blended diet will be much more involved and more difficult than formula. And I know that you are already so incredibly busy as it is. I can totally relate as we were over our heads with a new severely brain injured child, a monster of a rehabilitation program, and a crazy whole foods blended diet. We were running around like crazy cuckoo birds! But if ever you wanted to....we can totally help you to plan and balance some meals, as my husband and I have excel spreadsheets already made up for our daughter.
I'm really the type of person who is usually very much, give it a try...see if it works. I don't ever like to push myself on people...ever. But, this really is an all removal of dairy sort of thing or it won't work. I am only saying this, because a friend of mine tried to go partially and it didn't work.
Now I know Brenna is totally different from our (brain injured) kids, but what I am thinking is maybe, just maybe, it may have something to do with what many people go through, and that is the intolerance to dairy and hopefully that, rather than the differences in the other...might do the trick ; ) It's tricky isn't it! Or should I say...they're tricky...these kiddos of ours!
Courtney ~ I think of you all everyday and I will be wishing for some sort of resolution to this sooner rather than later. Adding insult to injury is like that freakin' artificial, must glow in the dark, weirdly colored cherry on the top, isn't it?
My love to you,
Jen
forthehodders@yahoo.com
I really hope Miss Brenna finds some relief soon and you can find some time to relax.
ReplyDeletePraying for sweet Brenna.
ReplyDeleteJust reading this post makes sad. For Brenna because she's miserable and has been through so much more in her few months than most people will go through in a lifetime. For you and Evan because as parents there is nothing worse than watching your child suffer and not be able to make it better. Please know the whole world is watching your beautiful baby girl and praying for all of you. I have always believed in the incredible power of prayer. I know with all my heart we will pray her better and send you the strength you need to get through this hurdle. Conquer each minute the best you can and then move on to the next. You're amazing parents and Brenna and Conner are so fortunate to have been born to you. Remember Philippians 4:13 - I can do all things through Christ who strengthens me. He's got your back and we're all pulling for you. God bless.
ReplyDeleteHas pyloric stenosis been considered or ruled out? Prayers!
ReplyDeletePraying for you all.
ReplyDeleteWe are so sad to read your blog:( We are thinking of all of you and hoping real soon Brenna (and you and Evan too) will be comfortable and not under so much stressed. Hugs!
ReplyDeletePete and Judy Olesen
And, I had h pylori for several months and it wreaked havoc on my gastrointestinal system. Easy blood test to run...
ReplyDeletePraying for Brenna. I read your blog everyday and I am so sad she is not feeling well. If formula is a possible problem, could she get donor breast milk? The antibodies in the breast milk might help her ward off infection?
ReplyDeleteCourtney,
ReplyDeleteI don't know u but I want u to know that your family is
Loved so immensely! My heart breaks for you and for little Brenna. Praying for peace and for wisdom to know how to proceed. U are truly an inspiration and I so look forward to your posts so I can pray and lift u and your family up.
My name is margaret,my little girl has Harlequin as well I.live in delaware,my Jane is going to.be 4 in october,she is.doin very well,im praying for.ur baby shes so.beautiful an angel!,if you have.any questions or.need someone to talk.to contact first for.my email and phone number God Bless
ReplyDeleteCourtney
ReplyDeleteThank you for taking the time to update. I'm sure you are exhausted. We are praying, too.
Bert, Karen and Bo Bennett
Keep hanging in there. You are all in our thoughts and prayers. Hoping Brenna can get some relief soon. x
ReplyDeleteso sorry to hear this! we'll be praying for y'all!
ReplyDeletePrayers are headed your way tonight, for endurance, comfort and hope! Rest when you can - it will help you.
ReplyDeleteKeeping you in our prayers
ReplyDeleteHang in there. Keeping you all on our minds and saying prayers for happier days ahead.
ReplyDeleteDon and Rosemary
praying for y'all sweet friend. may the Lord just minister to your hearts and spirits and may you feel His loving arms around you.
ReplyDeleteYou two are such amazing parents and people! I keep her and your family in my thoughts and prayers everyday. Stay strong, she is a tough girl and she can take on anything. God bless you both! :)
ReplyDeleteI'm praying for all of you - all the time - with A LOT of other people. You are not alone - GOD and all of us are with you. All of you, get rest when you can and don't skip eating -- take good care of each other and we'll talk with you when things settle down.
ReplyDeleteJust checking in and hoping today is a better day for you all!
ReplyDeletePete and Judy Olesen