A day.

9 Apr

So yesterday was a day. Extremely long, exhausting, informative, terrifying, mystifying and at times even relaxing, sweet and exciting.

We started at our high-risk OB’s office for another routine ultrasound. In this ultrasound, we learned that Turtle has turned from transverse to breech. I am really hoping he will continue the cycle and get (and stay) head down soon. Overall, his size and weight looked good. The weight estimate was 4 lbs. 3 oz. but this is likely skewed by the fact that his belly is measuring 2-4 weeks ahead due to the dilated portions of his bowel. His abdomen is currently in the 97% percentile.

My amniotic fluid looked good, 11.1 cm pockets of fluid (normal = 5-20). This is important because high amniotic fluid can indicate a blockage in Turtle’s bowel. The dilations are still around 2.5 cm. Up slightly but still in the same neighborhood. Overall though, Dr. Kind was pleased with Turtle’s overall growth and size for this stage and by the fact that the dilations seemed to have stabilized for now.

Next up was my delivery OB. These appointments seem a little bit pointless as all they do is record my weight and listen to the heartbeat (which we always have just seen on ultrasound downstairs). If I have a question, I ask her but otherwise they are incredibly short meetings. Still, I really like my delivery OB (I am HOPING she is the one who delivers us) and enjoy these meetings with her.

Then we had a short break before our 1 pm ultrasound at Children’s, so we hunted down a grilled cheese food truck we’ve been dying to try. We ate like little piggies and enjoyed the first really nice day in Boston so far this spring.

At Children’s, the ultrasound was about the same news. In this one, they got an amniotic fluid measurement of 15.6, which they said it changes depending on how the baby is positioned. Turtle’s femur and humerus bones are both measuring ahead (the humerus is quite a few weeks ahead at 33w1d) which we liked to see. In this ultrasound we got to watch the loops of bowel as they moved around inside his belly. We were told his movement is a good sign of activity (and not dead bowel) which is great. They showed the blood flow activity in color on the portion of the bowel outside his belly and there appeared to be blood flow there as well, which is again, good news. We want healthy bowel to put back in and get working ASAP!

Next up, meeting with our surgeon (well the one assigned to our case, he won’t necessarily be Turtle’s actual surgeon). We really like this guy. He is calm, confident, very smart and such a good listener. He said this issue of having some dilated loops of bowel is common with gastroschisis. The amniotic fluid level indicates that there’s not a complete blockage (though there still could be some level of blockage). He reminded us once again of our worse case scenario: a blockage that cannot be repaired because the bowel is too inflamed. In this case, they put the broken bowel back inside, close him up, wait MONTHS until it has healed, then take it out, repair the blockagae, close him up again and THEN begin the process of getting his bowel working and accepting and processing food again. Oh how I hope this isn’t the case for us.

Still, Turtle’s bowel is not the most dilated they’ve seen. At this point, there’s nothing that can be done but to watch and wait and see how it looks when he is born. The surgeons from Children’s will come over to Beth Israel and be present at the delivery and they will determine, bedside, whether it will be possible to repair and close immediately or whether a silo will need to be placed. They often do the surgery within 4-6 hours of birth as this is the best time to work with the bowel and assess it.

Something we learned: if they close him in the first 24 hours, we’re only looking at about a week in the NICU. If they place a silo, it’s more like 2 weeks or more. We were under the impression that we were looking at 7-10 days either way. More NICU time does not excite me one bit.

Which brings me to the next line item of the day, a tour of the NICU at Children’s and the regular floor. Well, I’m skipping the meeting with the lactation consultant, which actually was very interesting but likely something for another day. Nothing can prepare you to be in a NICU if you’ve never been in one, especially not the one at the top children’s hospital in the country. It’s like a spaceship in there, more medical machinery than you can imagine, and nestled in these giant spaceship apparatuses, the tiniest little babies. They seemed so alone in there. My first reaction when I walked in was, holy shit I’m going to lose it.

But I didn’t want to cry. Not when this was a place where people were trying so hard to bring some good and healing to these precious lives. It’s not supposed to be a sad place. It’s a magical place. It’s a place where the marvels of modern medicine work their hardest to heal the tiniest lives. It was HARD to imagine my son spending time in that place. Hard to imagine myself there day in, day out. It’s very cramped with machinery and hardly a comfortable place to sit and be with your baby. But, it is where he will be and I will get used to it.

When he’s in the NICU, we are allowed to stay in a dormitory-style room within the hospital. Once he is released from the NICU though, he will go to the regular floor, where rooms are shared and there’s only one reclining chair for one parent to stay overnight. We are still trying to figure out how we will work this, with DH being back at work and us not wanting to spend every night for two months sleeping apart. We’re hoping to work out a rotation schedule with my parents who will be here to help us out. If possible, we’d like him to never be alone. The regular floor is much busier, with fewer nurses per patient. You have to stay on top of the staff to get what you need done. And he will hardly be able to advocate for himself.

No, SOMEONE must be there. It’s going to be rough though and I worry about how much DH and I will miss each other and how we will be able to support each other through this tough time if we’re spending so much of it apart. Anyone with any experience in this arena, please reach out and let me know what some viable options might be for us.

After that, we had a few hours to kill, so we went and walked around our old neighborhood in Brookline, got coffee, sat in a courtyard and talked about how surreal this all still is on some level and how that’s probably protecting us in some ways. We had dinner at one of our favorite old places. Then it was back to hospital land for our 7:30 pm tour at BIDMC.

I have to say, I thought this would be my favorite part of the day, the “normal” part, but I actually hated it. Aside from being EXHAUSTED by this point, with horrifically swollen feet and feeling the urge to pee constantly, I didn’t like being grouped in with all the people who were getting their normal birthing experience. It was especially painful to hear about how mother and baby are never separated, except for maybe an hour or two. Knowing I will be in a different building, away from my baby for days. Hearing about what you do when you get discharged and are taking baby home, knowing we won’t be discharge from this hospital to go home two days after he’s born like most people. I’ve really started to come to terms with our lot in this pregnancy, but it didn’t help to have it laid out so plainly before us just how different of an experience we’ll be having. Plus it was like 20 pregnant ladies together in one place – not something an infertile is used to.

Anyways, I got home, showered and fell promptly to sleep. I’m still tired today! But glad it’s over, glad it wasn’t so bad, glad we learned more, and glad especially that the end is in sight. Whatever will be will be, I just want him to get here!

ps. If you made it to the bottom of this post, I applaud you. I know it was a long one but I had to get it all down. Might be too “in the weeds” for a lot of you readers and I apologize if that’s the case!

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12 Responses to “A day.”

  1. Courtney April 9, 2013 at 10:17 pm #

    Exhausting is right. What a day! It sounds like things are looking pretty good, and that makes me happy for you!

    Hang in there. Just a few weeks left!

  2. Esperanza April 9, 2013 at 11:13 pm #

    Never apologize for writing what you need to write. I’m glad you got more info but in sorry it was so intense and exhausting. And I’m sorry you have so much to come to terms with before and after Turtle is born. I wish your story were different but I have high hopes that your story will be a very, very happy one, not despite but because of all the challenges you face.

    Abiding with you.

  3. JustMe April 10, 2013 at 3:47 am #

    That seems like too much to cram into one day, both physically AND emotionally. I’m glad you are getting such good care for Turtle and I’m glad you have a realistic idea of how hard the NICU will be. My friend went through it and it was exhausting in more ways than one. But you are right. It is a Magical place. They will take such good care of him.

  4. AmyG April 10, 2013 at 6:38 am #

    Wow. What a long day! It sounds like you have a really good team in place, and I am breathing a sigh of relief with you that all is progressing with Turtle. All fingers crossed that he keeps turning over! (I’ve heard swimming can help with that.)

  5. jjiraffe April 10, 2013 at 7:18 am #

    That was a LOT of information to take in at one time: whoa!!! You must be feeling overwhelmed, but reassured in some ways. The first time I walked into the NICU (my son was already born) I weeped while the nurses and doctors tried to explain how the place worked. I was so intimidated by it. And scared. I think getting the visit over first is a good idea. Of course I was utterly embarrassed my outburst later. You’re right: the NICU is a magical place.

    You have an awesome team of experts assembled. They’re your own Team Turtle 🙂

  6. Erica April 10, 2013 at 3:27 pm #

    Hi there. I’m just a random reader who had been praying for you and turtle. In your post you asked for those who have been through this. While I haven’t been through it, I also read the following blog. The lady had a baby who was very premature and spent a lot of time in the NICU. She even wrote a post on must have items for the NICU. I though I would pass it along, sense she might be someone you can reach out to.

    http://babymakingmerrygoround.blogspot.com/p/about-us.html

    Must have items for NICU: http://babymakingmerrygoround.blogspot.com/search/label/baby%20products

  7. Aplatanada April 10, 2013 at 6:20 pm #

    Geez, what a day! No wonder those tootsies are swollen!

    Although our situation can’t compare at all to what you are going through, I can relate to he “jealous” feelings towards those with “normal” pregnancies. In all of the classes I want to scream, “But what about US??!?!” Not to mention that in almost every class, they have mentioned having sex as the way you get pregnant, not with thousands of dollars, tons of drugs, and heaps of anxiety for months.

    There seems to be something universal about NICUs having the most wonderful, awesome people working there. Turtule- and you guys- will be in the best hands.

  8. Alicia April 10, 2013 at 8:10 pm #

    Oh wow, what an incredibly long day! I applaud YOU for making it to the end of that day and not completely losing your shit. Especially the end part, with all the “normal” pregnancies and how that whole process goes.

    You are going to make it through this and I think you and DH have been through so much already, that you will know exactly how to support each other. Some days will be challenging, but the most important part, in my opinion, is to remember (as often as you can) that you and DH are on the same team. That any unwarranted snappiness or emotion (or whatever your own personal stress relievers are), are not personal and that you guys, as you always have been, are in this together.

    You’re doing great. I’m so glad that you’ve got the resources that you have. It sounds like you will all be in great hands and that you have a team of very dedicated people on your side. All good things.

  9. iamstacey April 10, 2013 at 8:43 pm #

    Wow, what a lot to take in. I’m so sorry this time that should be so joyful for you is uncertain at the same time. Thinking of you and hubby and Turtle.

  10. Kathy April 11, 2013 at 12:15 am #

    That was a big day ! It will take some time for it all to sink in. Sounds like your team of Doctors is looking after you and the babe very well. Being prepared and informed will help you get through everything.

  11. Alissa April 12, 2013 at 4:59 am #

    I’m still here. That was a long post but I am glad you are documenting it all. What a long and crazy day you had. I am always thinking of you and Turtle and will hope for the best in your journey to meeting him and caring for him. I know it has to be so scary sometimes, but you will be as prepared as you can be. Hang in there and know you have some great people in your corner.

  12. Lindsay April 13, 2013 at 12:21 pm #

    I cannot put into words how much I admire you. I remember reading the first post you wrote after finding out something was going on with turtle and not imagining what you were going through, how you would deal with it. You are so strong and have literally faced everything head on while also trying to enjoy everything about pregnancy. Can’t believe all you had to go through today, but am so glad it seems you have such an amazing group of doctors. You are getting so close. Thinking of you and hoping you can get through these next few weeks (both mentally and physically.)

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