When things don't go as planned... - Mothering Forums

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Old 07-29-2005, 04:24 PM - Thread Starter
 
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Riley Avalon was born July 14th at 11:26pm via c-section. She was 6lbs 10.4oz and 21.5 inches long (and 11 days overdue!)

After almost 72 hours of labor, I was stalled at 8 cm and my contractions were slowing down. They went from every 3 minutes and 1.5 minutes long, down to every 10-15 minutes and just 15-30 seconds long. There were also some dips in her heartbeat, so my midwife suggested we transfer to the hospital and we agreed. The local hospital was packed so we drove the 45 minutes to Home Hospital (which is a much better hospital anyway). When they hooked me up to the monitor her hear rate was not good and she had a bunch of decels in just a few minutes. My water was also broken and I have no idea when that happened (I had spent most of the day in the birth tub). On top of the fact this was supposed to be a HBAC, the doctor wanted me to have another section and I agreed. When she was born she was covered in meconium and her nails and cord were stained from it. Her APGARS were 2 and 9 and they took her to the NICU for observation.

While there she started having seizures. To make a long story short, she has a blood disorder (they didn't give me a name, but they said it's likely a genetic mutation) that causes her blood to clot too much and too fast. It caused a clot in her brain which likely occured at some point in the pregnancy (as much as a month before she was born). The clot affected about 50% of her brain. Right now she's like any other newborn, but we have no idea what problems she might have in the future. But she's going to have physical, developmental, and occupational therapy, and likely speech therapy when she gets older.

Anyway, she was in the NICU for two weeks. For the first week she was on a ventilator (she would stop breathing during the seizures) so I couldn't nurse her, and she was on IV fluids. I pumped (and pumped and pumped) and then they started tube feeding her. At first they had to dilute my breastmilk to help her digest it, but she quickly got it down and they started increasing her amounts and then bottle fed her EBM for a couple days. Finally when she was 11 days old I got to nurse her for the first time. The first couple times she was extremely sleepy so she didn't do to well, but in the morning when she was wide awake I had the lactation nurse come down and she did perfectly. They intitially had me supplement her with EBM after a feeding, but after just a few times she was nursing so well they let her go to the breast exlusively.

Yesterday we finally got to bring her home. My older daughter is happy to finally have her baby sister home, and I'm so glad to get out of the hospital. Riley has to take a folic acid supplement for the rest of her life to help keep the blood clots away, and she'll be on phenobarbital for at least 6 months. We have an appointment to meet with First Steps on Monday, which is a program that provides in home therapies for kids. She need to see the doctor every two weeks for awhile, and the neurologist every few months as well.

So we have a long road ahead of us, but right now I'm trying to just enjoy her being a baby.

I hope things went better with everyone else!
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Old 07-29-2005, 04:38 PM
 
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First of all, congrats on the birth of baby Riley!

I'm sorry things did not go to plan, and that Riley has health problems. I hope with all my heart that her developmental issues turn out to be minor.
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Old 07-29-2005, 07:27 PM
 
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I'm so sorry to hear about Riley's blood disorder! I'm glad she's home with you and is nursing well. Best wishes on your road ahead.

Cathy
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Old 07-30-2005, 12:29 AM
 
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Oh Katie,
Huge hugs to you and baby - you sound like you were very strong through your long and difficult experience, baby Riley is VERY lucky to have you as a mama.

I hope that you continue to get good news, and that Riley grows strong and healthy - please keep us posted and know that I'll be thinking of you.

Jeanette
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Old 07-31-2005, 02:33 AM
 
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Katie - congratulations on the birth of a lovely baby girl!

I'm sure that the road ahead will indeed be long, but certainly it will be one that is rewarding to you as a mommy. It is wonderful that she is able to nurse exclusively now! I wish that everything had gone as planned for you, but the future is bound to hold promise for all of your family. Hugs to you, I will keep you and Riley in my thoughts - I hope that she continues to improve.
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Old 07-31-2005, 07:03 PM
 
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Congratulations Katie, and welcome to Riley! I'm so sorry to hear about her health problems. You are in my thoughts and I'm wishing you the very best.

Shana

Mama to M (7/05) and S (5/08) my surprise !!!
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Old 07-31-2005, 07:45 PM
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Katie - Congrats on Riley and of course, I'm sending healing healthy vibes her way...All these well wishes kind of feel like the part in Sleeping Beauty where all the fairies bestow gifts upon Aurora, doesn't it? Kind of nice...imagining us all as lovely fairies capable of all sorts of healing and magic...

May Riley end up being the most lovely of all (inside and out)!
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Old 07-31-2005, 11:10 PM
 
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Katie - welcome to your new little bundle and thank g*d/ess you have been able to bring her home. You and yours are in my thoughts and prayers!

ex-Californian, making my way on the East Coast with DS (10), DS (6) and WAHDH. Former extended BF'er, co-sleeper, and baby-wearer. Remembering how to garden.

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Old 08-01-2005, 11:04 AM
 
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First and foremost, congratulations on the birth of your beautiful baby girl!

I'm sorry things haven't gone as planned for you so far, but it sounds like you've got a great support network and a good plan for the future. I'll be thinking of you and sending hopes and prayers that any developmental problems turn out to be minimal.

At-home mom to a teenager, an infant, and three in between!
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Old 08-01-2005, 01:46 PM
 
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Congratulations! Enjoy that beautiful new baby and just take it one step at a time! Best wishes to you both!
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Old 08-04-2005, 06:28 PM - Thread Starter
 
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Thank you everyone!

She had a dr's appointment today and she's gained two pounds since birth! Go mommy milk! So far she seems to be completely "normal." Although apparently her newborn screen shows that she might be a carrier for a genetic disorder (something involving amino acids and metabolism). We might have to do a consultation with a geneticist (sp).

Other than that, she's doing great so far!
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Old 08-05-2005, 08:04 AM
 
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I'm so glad she is doing so well!
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Old 08-07-2005, 08:19 PM
 
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congratulations to you, mama, and I will be praying for the doctors who see her to be accurate and wise in diagnosis and treatment, and for lots of strength for your family! Welcome to the world, Riley!
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