Jaeli

Newest update for Jaeli – an email via Brandy touching base for the New Year. Read it and weep – I know I did.

Update post I published on 10-29

Update on Jaeli and Brandy as of 10-20-09.

Firstly – Brandy wants me to thank David’s House for their generous support of her during this rough time.

I am Paypal’ing an addition $122.11 that came in after I liquidated the other large amount directly to Brandy. This eliminates me having to mail a check anywhere since Brandy can work directly with the Mother’s Milk Bank of Ohio to get what she needs. Donations can still be sent directly to the milk bank via post to the address below, or sent electronically via Paypal for those who are giving internationally. I will send any donations that come in electronically to Brandy’s paypal account to avoid potential loss in the post, delay in arriving, etc.

Medical Update – Jaeli is home, has been home for a couple days. The regiment of feeding that they found works best for now to minimize reactions but maximize weight gain is two Neocate feedings alternated with the high-cal breastmilk feedings. We are praying the weight gain continues although the rate of gain had slowed dramatically before Jaeli’s release from the hospital.

The first day using this schedule saw 100 grams of gain. The second day saw increasing symptoms of reactions (more reflux and vomiting during and after the Neocate feedings) and thus wasted energy on Jaeli’s part saw only 40 grams of weight gain. That’s a 60% decrease of gains and obviously not a downward trend Jaeli can continue. Frankly, I’m surprised Dartmuth Medical released her with the symptoms worsening but….

Prayer is most important now. Prayer that her body won’t reject the Neocate too quickly. Brandy reports increasing time to administer the feedings because of Jaeli’s refluxing spells during the feeds, and she’s exhausted from the near constant monitoring to make sure Jaeli doesn’t vomit and choke. Pray for rest for Brandy. Pray for the truth to be uncovered as Social Services has now been called on them – a move which shocks and infuriates me. With Brandy having just spent 3+ weeks trying feeding and feeding, schedule after schedule, insisting on a longer hospital stay to work out the best possible diet program for Jaeli, it seems unbelievable that anyone would label HER, of all people, a threat in any way.  Pray for the unbelievable amount of stress this must be causing their close-knit family. My fear is this has become an issue of power politics – something that has been known to happen to other mothers who “question the system” – and that the decisions made have not necessarily been made with the individual best interest of Jaeli in mind.

More updates as they are available.

**********************************

The Mother’s Milk Bank of Ohio donated an extra box of milk when Brandy placed the first order today because they were touched by the way all of you have responded with your coffee and pizza money (or more!) on Jaeli’s behalf. Here’s the mailing address if you’d prefer to mail a check directly to them – just mark any check in the memo line or with a sticky note “Baby Jaeli” and they will keep it in a seperate account for her.

• 10-14-09 – With the donations that have continued to trickle in over the last couple days our current Paypal Balance is $3,251.32. which represents 99 individuals giving what they were able. I am transferring this money to our “extra” account today and writing a check to the Mother’s Milk Bank of OH – this should go out in the post today and I’ll have Georgia call me when it arrives safe and sound. Everything feels like it’s on hold right now – waiting to see what the doctors decide. Waiting to see what Jaeli will grow with AND still be healthy as her recent Neocate trial, while adding precious ounces to her body size, caused several severe reactions including raw, open “diaper rash” wounds on her rear that are still bleeding and causing her pain. The doctors considered it a success because she gained weight without blood in her stool. Hardly the definition of health and total well-being. The plan right now is to keep her on the highest calorie breast milk available – thankfully the local milk bank tests the levels of their milk, and help her gain weight without the horrible side effects, or increasing her risks of infection even further. Thank you all SO MUCH for your help thus far. Who knows a reporter? They were all over the FTC madness for bloggers but here we band together to help a one-in-one-billion baby and there are no where to be found. Doesn’t make much sense to me, eh? This basically keeps Jaeli set for October and well into November. After that? Who knows!
  

Jaeli was born with a rare chromosome disorder causing multiple health problems and an uncertain future:
She is one of four known people with this class of chromosome disorder.

To Follow Jaeli’s Story: Rare Chromo Baby group is how Jaeli’s mom sends updates and prayer requests. Jaeli on Twitter: @rarechromobaby Jaeli’s Mom on Twitter @brandybrow

If You Can Help: Email me at ang.england [at] yahoo [dot] com as I am fielding questions on Brandy’s behalf. Also – in response to a couple queries – the way to make a donation is to click the yellow donate button in the side bar.

URGENT NEED – It’s very complicated and I will add more details as soon as I’m able but Jaeli’s basic need is healthy milk. Every time she’s been put on any non-breastmilk formula or supplement (even a small percentage) she has had violent reactions. Last time she was vomiting so strongly she was bleeding in mouth/nose within 24 hours. She also lost nearly 10% of her body weight within 72 hours because of the severity of her reactions.

Due to a wide variety of complications, Jaeli’s donor milk supply will run out within the next 3 days. The hospital refuses to order from a pre-screened milk bank without “cash in hand” since their insurance will not cover the cost of milk. Her immediate need is $1,200 for a week’s supply of milk. Within the next two days. I believe that we can do it together!

I am personally donating $50 but even if you can only give $5 or $10 that will help. (See Paypal button in the side bar)

Immediate Needs:

Enough money for the hospital to place an order for the breastmilk before she runs out Friday afternoon. OR A private donor already qualified with enough milk in the freezer to ship soon.

Ultimate needs:

1-A company or corporation to sponsor Jaeli’s feedings. Even if it’s only a week or a month at a time. OR

2- Weight gain for Jaeli – At this point the doctors feel that will be best accomplished through the highest caloric levels of breast milk available – and that comes through the milk banks. I would strongly urge any nursing women who want to help, to contact the nearest HMBANA Milk Bank and speak with them about donation – the milk could go to help Jaeli, or one of a thousand other needy babies. The milk banks are also able to reimburse blood work and shipping costs.

If you can help out – either by putting us in contact with a business to sponsor the next week’s worth of Jaeli’s milk, or by donating via Paypal or by donating milk, please email me ang.england [at] yahoo [dot] com.

Blessings,

Angela <><

P.S. I will post regular updates of donation totals so you guys can help cheer our progress!

I’ve added a FAQ’s blog post here.