Thu 8 Mar 2007
Not today
Posted by Ann under Updates
[9] Comments
I just got off the phone with Jane, and she asked me to post an update. Ramona isn’t coming home today. She has been vomiting again and having some diarrhea. It may be that they were attempting to wean her off some medications too quickly, or a side effect from her cold, or perhaps a G-I infection. They are going to keep her at the hospital today and hope to send her home tomorrow. Let’s all pray for a healthy Ramona and a peaceful homecoming.
is she vomiting after eating? is she still having large feedings every 3 hours or so? Reducing the size of the feeding could help her deal with it. maybe ask the cardiac dietitians about different feed amounts? 24/7 pumps with an ounce and hour or something like that and slowly build her tummy up to bigger mounts?
You are doing a wonderful job helping your daughter and gathering info for her. you can see that she is loved by looking at the pictures of her glowing little face:)
i am praying and i love you both and i am sad for the situation. i can’t say anything else… all other word i can come up with to say seems empty besides simply acknologing reality with you. Ramona is beatiful, her picture made me smile for a long time thank you for sending it. i guess i can say that one of my councilors once told me that terrible times do have an ending….there was not a bone in my body that believed her at that time, i violently disagreed and got angry, i named tons of reasons why life could never be peacful, but i can asure you that agonizing times do end and peace eventually comes. but like i said before everything i can say feels empty to me and all i feel i can write is that i am hearing your story……and will pray and cry with you.
Hey Wyndi!
I believe that the vomitting is being caused by the methadone wean they did yesterday. When she is good and relaxed and not withdrawing, she seems to tolerate her feeds just fine. Thanks for your ideas…
Jane
Jane and Andy–
I’m going to ask God to be present with us tomorrow as you bring your blessed little baby back into the arms of your family and I’m going to pray for Him to surround us with a powerful aura of peace and grace. I’m going to ask Him to step up and really make His presence known and let us give over our suffering and dread to Him for the time being, not for always, but just for now, so that we may dream and float and become intoxicated with His Glory and Peace and Power and Wisdom and Comfort. I know I must embrace the situation now with all the strength that God has given me so that I can best support all of you as you face your challenges. I love you all as never before and I am grateful to have been held so close during this time.
Whatever it takes, the well will always be deep enough.
Love, Mom
Dear Jane and Andy,
I’m afraid that my husband and I are one of those lurkers on your blog. We are friends of the Abetti’s. (Toby’s wife’s family) This last summer we were also planning a homebirth but ended up in the hospital getting a c-section as our baby was having severe heart arrhythmia in utero. Our baby girl, after spending a week in the intensive care nursy undergoing MRIs and other invasive tests was diagnosed with super-ventricular tachycardia with a rhabdomyoma on her heart was sent home with a bottle of cherry flavored drugs and a wave. The worry and pain that we went through in the hospital is unspeakable. We went through fire, freezing numbness, anger, everything. But all that seems like nothing compared to this. However inadequate it may sound, but our hearts and prayers are with you, as we can imagine pretty well what you are going through. Our church in Claremont, NH in praying for Ramona.
Anyway, the point of this message is to mention that we were pretty disappointed with our whole hospital experience, as it seemed to us that the doctors were just walking medical textbooks with no brains. Our daughter Nika was having a pretty strong reaction to the beta-blocker that they gave her and it took us really bugging them until they gave her a much more appropriate drug, but even then we searched for a while until we found a pharmacy where they make their own drug compounds and could make a formula more suited for newborns. Anyway I know that this is more of higher scale of emergency, but I just thought to mention that perhaps you guys should look into suppliments to help Ramona grow and heal and deal with those drugs. It’s just that usually doctors don’t really know anything about it. Like for her little tummy I would suggest some probiotic powder to boost her intestinal flora to be able to handle the drugs and stabilize her GI.(Just a little bit on your finger for her to lick off is usually enough) Anyway if you look around there are probably some naturopathic doctors in your area that could provide some suppliments to help her.
Anyway just throwing it out there.
On another note, Ramona’s eyes are like little stars and even we who are so far away and unknown to her have been touched by their twinkling light.
With thoughts and prayers,
Anna, Justin, and Nika DuMoulin
Praying for healing in every little way. I am sad for you all that you aren’t bringing her home today, and at the same time relieved that her vomiting etc didn’t occur just as you got her home. Glad they are playing it safe so you can hopefully have a smoother transition home this time.
Loving you all.
I know what it feels like to wean off a drug like ativan and it totally sucks. I’ll be praying specifically about these symptoms for Ramona as I know them well. I assume it’s similar to methadone withdrawal. It must be so hard to see her uncomfortable.
I was at bible study today and I brought copies of “base camp two” along with a picture of Ramona so these 15 girls would know exactly how to pray. They melted when they saw her picture. One girl, who is a cardiac NICU nurse saw the “don’t make me shunt” shirt and loved it. Busted out laughing…
Dear Ramona
So I was just thinking about you today as we walked in the woods by our house. It is really beautiful out. When we moved to the country I had to figure out how to live in a new environment without being totally freaked out all the time so we try our best to see how each animal or insect works together with God’s design for the ecosystem around us. I keep telling the kids that nature is not “evil” and to not be afraid, but to be “cautious.”
Now, this being said, Ramona, I have to tell you about ticks. Ticks are an insect that kind of grab onto you and live off the blood in your body…not ALL of it, just a little bit of it and then they drop off and move on…yeah, GROSS! They also can pass diseases onto you so it’s best to avoid them altogether if you can…but it’s HARD to be enjoying nature AND avoiding TICKS! You know what I mean?
One day, Ramona, I’m going to ask God about ticks because I just can’t see what they do for the environment, I mean, I am sure they have a purpose but I have no clue what it is.
Don’t be afraid though…they are kind of creepy, for sure, but what we do is learn all we can about the thing we’re afraid of, be as cautious and responsible as we can and then we figure it out as we go…one step at a time.
grow strong today Ramona Mae!
-miss angela
Dear Andy and Jane,
Jon and I would like you to know that you and Ramona are in our thoughts and prayers. We are truly thinking of you daily and we hope that our prayers, along with so many others, are sending you some strength for each day that lies ahead. Love, Jon and Judy Hollingshead
(Max’s parents)