My baby is here & he has spina bifida. (m)

[momto3g3b]

Joshua Gabriel was born on March 2, 2006 at 11:06am. He weighed 8lb,14oz and measured 20.75 inches. He's a beautiful baby.

It was discovered during an assessment immediately after birth that Joshua had an abnormality on his back and he had an ultrasound, which revealed a lipomyelomeningocele and a dorsal meningocele ~ a form of spina bifida.

He was flown over 300 miles at only 27 hours old to Legacy Emanuel Children's Hospital in Portland to be cared for by a neurosurgeon (same doctor who did my twins' neurosurgery last year, so at least we know/trust her). My dh flew with him. We've been told he will have surgery, but we don't know when. He has MRI's scheduled for Monday morning and we'll get more answers then. I got discharged AMA so I could go home to be with my other 6 children and heal from the c-section.

I wasn't able to nurse Joshua even one time before he left, which makes me incredibly sad (just adds to the sadness I feel over everything else going on). Because of the blood incompatibility we had, his jaundice level at birth necessitated treatment and he had extremely rapid respirations, which interferred with his ability to eat, so the only food he received before his transfer to Portland was 10 cc's of expressed colostrum. He's now being fed formula (by daddy) since I'm 5 hours away and unable to provide expressed breastmilk for him. It depresses me that this is my last baby and NOTHING has gone the way I expected it to.

I'm pumping every 3 hours to build up/keep up a supply and hopefully Joshua will take to breastfeeding once he comes home. If anyone has any suggestions for achieving a letdown while pumping, I'd really appreciate hearing them. I've tried nursing my 27 month old (who is loving the influx of milk again, btw), but thus far, I haven't gotten a letdown while nursing him. I've also tried looking at pictures of Joshua while pumping, but again, that doesn't get a letdown going for me. I'm getting very uncomfortable with the boulders attached to my chest and would really love some relief. So please, if you have a tip, share it!

Here are some pictures from Joshua's birth day and his first day of life.............

Just born: http://img.photobucket.com/albums/v2...uajustborn.jpg

His back (you can see the discoloration and "hole"/depression): http://img.photobucket.com/albums/v2...oshuaback1.jpg
Another view of his back (you can see a bump below the "hole"): http://img.photobucket.com/albums/v2...oshuaback2.jpg

In NICU: http://img.photobucket.com/albums/v2...huainNICU2.jpg

http://img.photobucket.com/albums/v2...f6/Joshua3.jpg

[etoilech]

First, congratulations on the birth of your son!


Second, I am so sorry that he is sick and far away from you.

I pumped for eleven weeks while in the NICU with my son. Achieving let down during pumping sessions was always tricky for me. One thing I was adivsed to do by the LC was to have a routine when I pumped. First have a glass of water ready, then do breast massage (start at the nipple, work your way out rubbing in circles and making a sprial around your whole breast), and have a picture of my son handy if I wasn't pumping there. Try to pump at the same times during the day. Your body will come to anticipate it. Pump at least a good 15-20 minutes.

Rest at night, you need to be rested and strong for your son, the NICU is not good when you're over-tired and faced with all that's there. I slept for 6 hours and pumped every 3 hours during the day, when Joshua gets closer to coming home you can add in an extra pump session to prepare your supply for the night nursing.

Make sure you have a good pump. I used a Medela Symphony and loved it, but I know their are other good ones out there. I also like Medela hand pump for my purse (I think it's called a Harmony).

Engorgement. The midwifes told me to take tea towels and load them up with cool plain yogurt to help with the swelling and engorgement. Wrap them around your breast avoiding your sensitive nipples. Alternate with warm cloths. Try to express a bit in the shower to release the pressure. Carry a hand pump for when you feel uncomfortable (or nurse your other children).

If you can manage it... try to pump while nursing your other child. That might help with let down.

Your morning pump session will usually have the most milk. You may want to extend how long you pump in order to properly drain the breasts. I usually kept at it as long as the milk was spurting.

MOst of all, I hope that your little one is okay. He's a beautiful baby. Remember to take care of yourself and ask for help when you need it and accept any offers you receive.

If there is anything we can do to help, please let us know. I am far away, but it's not much to mail something you need and get it there.

Take care,

Olivia

edited for my spelling

[JillChristina]

Congratulations on your BEAUTIFUL little boy!

My heart is just breaking for you. I pray that everything works out the way it should for your family. I'm sure you're devastated that your new, sweet baby is so far away but how wonderful that your dh can be with him. I pray the doctors do their very best for your boy and that he's home in your arms soon.

Best of luck with the pumping. It's such a hard job. I hope things continue to get easier with that in the coming days.

Please keep us updated!



Jill

[Metasequoia]

Congratulations on a BEAUTIFUL baby boy, Kate! He is absolutely gorgeous!

I'm sorry you are feeling so sad , it's completely unfair to have to deal with recovery, hormones, lots of children & your feelings about your new babe, my heart goes out to you.

As for the let down, can you somehow get your DH to put a small cloth or blanket in with Joshua so that his smell is absorbed by it, then if he can get it to you & keep rotating, maybe his newborn scent would help with the letdown, just close your eyes & inhale & imagine him nuzzled up to you.

I used cold cabbage leaves for engorgement, very soothing. Do you have help? I hope so, this is too much for one mama to handle .

[nubianamy]

Oh, gosh, Kate, he really is beautiful! Congratulations.

I'm sorry you have to be away from him right away. That must be so hard! Did they say how long it might take before the surgery is done and he can come home to you? I'm really glad your husband is with him. It sure is nice to know the medical establishment is there to help when we need it!! (speaking as one who's btdt!)

Hugs to you and your family as you wait a bit longer before Joshua's homecoming.

[Artisan]

He is a GORGEOUS baby!

I'm truly sorry about his health complications and that you can't be with him right now. I know that has to be heartbreaking.

[HappiLeigh]

Oooh, that last picture is my favorite...he's got such a beautiful face!

: for you and your family, and hoping that all goes as well as possible with Joshua's hospitalization.

[InochiZo]

He is a beautiful baby. I hope you get to nurse him and be with him soon.
Good Luck!!!

[CaliMomof5]

Congratulations on your BEAUTIFUL baby boy! I am so sorry he has sb and that he has to be so far from you right now. I will keep him and your family in my prayers!

[AidansMommy1012]

Visiting from the July 2006 Club...

What a beautiful little boy! I love the last picture as well. What a perfect little face! He is fortunate in that he has so many people and such a large family to love him. I am sure that will play a huge factor in helping him to flourish when he comes home. You and your family are in our thoughts and prayers, and I'm going to add your family to my MOPS group's prayer requests.

I know it's hard, but if you can find the help you need with day to day life right now and find some way to relax, that might help with your letdown. That said, don't be too hard on yourself. He is getting formula, but it's from his father who loves him, and you should have a good opportunity to establish nursing once he comes home if you can just keep up even a little bit of supply. It's likely that your body will respond to the sucking of a baby and boost the milk supply. When I was nursing my DS, I used Traditional Medicinal's Mother's Milk tea when my supply began mysteriously declining and three days later was back to overflowing again.

[erniebobernie]

Keeping you in my thoughts
to each one of you

[Birth Junky]

to you and your family--I am so sorry that you must be separated from baby boy right now, but glad to hear that his daddy is with him keeping watch.

I will be thinking of all of you and hoping for positive updates in the days ahead . . . stay strong, mama, and know that we are all rooting for you.

[damyen's mommy]

popping in from the February due date club. You have a beautiful little guy. I hope you can reunited soon. As far as the let down have you tried pumping a little in the shower or leaning over, yes I know it sounds odd. But it helped me before and I have a hard time having a let down when I try to pump. Warm compresses help too. For the engorgement, cabbage leaves always seemed to help. Good luck with the pumping I hope your little guy takes to nursing like a pro.

[ellie_may12]

You and your baby are in my prayers! He is beautiful!

[honeybee]

I'll be praying for your little boy and your whole family.

[Mariposa]

he is beautiful. you, joshua and your family will be in my prayers.

[Tine]

Joshua is gorgeous, and he looks so strong. Still praying for you.

[Kindermama]

Hi Kate,
I'm just a lurker....how incredibly hard it must be for you right now. Being away from your newly born baby....I can only imagine. I'm so sorry he has spina bifida. He's a beautiful big boy and I pray that he is home soon with you snuggled up close to your breast nursing away. More than likely, the grief and sadness you feel is affecting your letdown and/or milk supply.
Do you have a local homeopath you can reach out to? There are several remedies that come to mind when dealing with grief & sadness after your baby is born, whether or not it's caused by a medical condition...when things don't turn out the way we dream, we grieve. Big hugs.