First call with Children’s

14 Dec

Earlier this week, I had a great call with a nurse at the Advanced Fetal Care Center at Children’s Hospital in Boston. My high-risk OB had started the process of reaching out to this center on our behalf so I was expecting a call from them to schedule a time for us to come in and meet with the pediatric surgeons/get a lot of information.

I wasn’t expecting to have a long, informative conversation with a very kind, patient and informed nurse.

Here is what I learned on the call:

-For the average, everyday gastro baby, they do well overall. They just have a long beginning in the hospital because they don’t know how long it will take the bowel to work. They can usually put all of the bowel back in on first day. We may be a simple or complex case – don’t know right now. Right now, we should think of it as simple and learn what we can about that. After 18 weeks they can do a whole survey, usually many loops of the bowel are out.

-60% are closed first day, others need the first 4-5 days in a silo to let the abdomen accept bowl and then do a final closure. Sometimes they incorporate the belly button or make it look like the baby has one. Then the baby looks normal on the outside. The part that’s hard is they don’t know how quickly the bowel will readjust to being used. It takes awhile for it to wake up and start working and absorbing nutrients. That is the hard part. Most babies average 6 weeks in the hospital – though some spend much more, some less. Sometimes the feeding progression is slow, but they have to let the baby’s bowel adapt. 80-85% do very well. Another percentage have complications like a bowel obstruction, which can be seen later in pregnancy.

-When we come in, they will do another ultrasound and we’ll meet with a pediatric surgeon and talk about the full spectrum of things that will happen and can happen. They’ll plan to see me back several times during the pregnancy. During the last part of pregnancy, we will tour the NICU and the regular floor. They can connect us with families who have been through it and can also connect us with a lactation consultant. Hopefully I’ll be able to pump after Turtle is born so they can try feeding him/her my breast milk, which is better than formula for gastro babes.

-I asked about Turtle’s transfer from the hospital where I’ll deliver to Children’s. She said it won’t happen immediately, but in the first few hours. The Children’s surgeons will come to delivery, cover the baby with plastic, put IVs in, let me hold the baby, then put him/her in an ambulance. There are 20+ pediatric general surgeons who treat it at Children’s and they see approximately 15-20 patients per year with this. Apparently, all trained pediatric surgeons can treat it. In the beginning, she acknowledged that it will be bit of a nuisance to come see the baby. Hopefully we’ll have a vaginal delivery, which will mean a quicker recovery.

-In the beginning, Turtle will be in the NICU. When he/she’s there, we can’t stay right beside the baby but could possibly stay in hospital. Once we move to regular unit, there’s a pull out bed. We can stay there or at home. Some people never leave their baby, others are a little weak. It all depends on how I react to having just given birth, but parents are allowed 24 hours/day at Children’s. When I explained all this to DH, he broke my heart when he said he would not sleep a night at home while his child was in the hospital.

-Best of all, she acknowledged that it wouldn’t be the birth and after birth experience we want and deserve. She said  she knew we were coming from IVF and that it doesn’t seem fair. I told her, “Well as long a we get a healthy baby at the end of this, we’ll be happy,” and she said “we will and the baby will be beautiful.” We just had a really great, positive conversation and I already feel so well looked after by the center. The nurse I talked to will be one of two nurses assigned to our case who will be following it all along.

The plan at this point is to go in a week from today for an ultrasound and a meeting with one of the pediatric surgeons. Our nurse wanted to get us in before we go away for the holidays, thinking it would give us peace of mind to get the ball rolling and more of our questions answered (I think it will!). So between this and our high-risk check up next week, we’ll be seeing Turtle TWICE, two days in a row next week. Yipee! Merry Christmas to us… one of the few perks of being high-risk.

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10 Responses to “First call with Children’s”

  1. sams December 14, 2012 at 6:47 pm #

    The hormones must be hitting me hard today because I was weepy through your entire post. I’m so glad to hear about the great conversation you had with your nurse! It must be a huge relief to have such wonderful care and concern coming your way from the medical staff. One less thing to worry about. 🙂

  2. Courtney December 14, 2012 at 7:20 pm #

    That sounds like a fabulous nurse! I am so thrilled for you that you are getting to prepare for this so early in the process – you’ll have everything sorted out once Turtle gets here.

  3. Keisha December 14, 2012 at 7:23 pm #

    Oh, Shelley. I’m so glad you got to talk to someone who is knowledgeable and compassionate. And it’s awesome that she will be right there with you through it all. It’s also good news that you can stay 24/7 at the hospital with your baby. That alone must make you feel better to know you CAN be there as much as you need to be.
    Pumping will suck, but the hospital should have a good one for you to rent, and a lactation consultant can show you how to maximize your production. The NICU will have a pumping room where you can visit with other moms and support each other. I think you will be very well taken care of.

  4. Theresa December 14, 2012 at 7:24 pm #

    Man what a mix of emotions reading this was so I can’t even imagine how you guys feel.

  5. chon December 14, 2012 at 9:50 pm #

    You are doing really really well. Little turtle won’t even remember this and will be a normal crazy baby and will be wondering why does momma cry all the time! I think you are incredibly strong.

  6. Mrs Bun December 14, 2012 at 10:06 pm #

    I’m so glad that you have such an awesome and positive team helping you through this time. You and Turtle will be in the best possible hands from now all the way through. It must be such a relief for you xox

  7. Cristy December 14, 2012 at 10:36 pm #

    Lady, this is awesome! You are clearly in good hands and I’m so very hopeful that Turtle’s time in NICU will be short and sweet because of this team. Hang in there and hoping that next week’s scan reveal more good news. Thinking of you. xoxo

  8. ewagner123 December 14, 2012 at 10:45 pm #

    I’m so glad you had such a great conversation. You are so informed and are preparing the best you can. Thank God you found out early on and not right when Turtle was born. Of course, it would be better if he didn’t have this problem, but at least you know and can get your “ducks” in a row. I know you know this. Your DH sounds incredible as does that nurse.

  9. Amy Skins December 15, 2012 at 4:33 am #

    There’s a lot of great news here, (and of course a lot that still sucks). I’m thrilled that you may get a shot at a vaginal birth! I’m kind of surprised that’s the case, not knowing anything about the condition. No matter what type of birth you end up with, having the chance to try for a vaginal birth is really great, for both you and turtle!

  10. EmilyE December 17, 2012 at 6:10 pm #

    I am so glad you have access to this facility and this team. Anything at all that makes this journey and delivery a bit smoother is amazing. I hope this conversation was indicative of all the care you’ll receive there!

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