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Posted by Melody
Per Jay’s Request:
You can view updates at http://www.caringbridge.org/visit/simonelayne
posted by Melody
Simone’s surgery was yesterday 5/21. Came through the surgery pretty well but started bleeding a lot from her chest tube upon entering ICU. Got that under control and she was stable until the middle of the night when her blood pressure dropped, heart rate went way up, became feverish(temp of 103) and she started having trouble with her mixedvenous gasses. She gained about 2 lbs with swelling. Seems to be stabilizing a bit again now, but it’s unlikely she’ll come off the breathing tube today as we’d hoped. They did take her off the paralytic, so she’s moving now and opening her eyes a little. The movement should help with her blood pressure. Will try to keep folks updated,but it’s difficult to get away from her room and Facebook is blocked at the hospital. Setting up a Caring Bridge web site andwill probably post the url for that later.
Our experience at Riley has been wonderful, though. ICU nurses arranged for a Ronald McDonald room for us right in the hospital.We had planned to sleep in the lounge. Hoping to get another one for tonight.
posted by Mel
I know it has been forever since I posted. The truth is, I’m overwhelmed and depressed. Breastfeeding was hell with a preemie with a tiny mouth and required use of a nipple shield. Feedings sometimes lasted an hour. Zillions of doctors’ appointments made them nearly impossible. I laid awake at night fretting over how I was going to organize them.
Simone had surgery for her hernias. It was tough, but we got through it. While we were at the hospital the cardiologist took another listen to her heart and ordered an x-ray which showed more fluid in her lungs, so she was put on medicine that would help dry it up and make it easier for her to breath. (This is happening b/c of the VSD– one of the holes in her heart.)
For the past week or so Simone had been falling asleep at the breast, making feedings drag on longer and longer. Postpartum depression has been robbing me of my sanity, so I got on an anti-depressant and had nearly decided to give up BFing all together when it was time for her next cardiologist appointment two days ago. Tests showed that, although two of the holes in her heart appear to be closing, the most troublesome one- the VSD- has not changed and, in fact, she now has a 2nd VSD. She’s not gaining weight as she should, and it’s probably because her little body is using the calories to keep up with the workload her heart’s not handling right now. Breastfeeding is too much effort for her, so it turns out that giving it up is the best decision for both of us. Somehow it’s still breaking my heart and making me sick. When she reaches 12 lbs, she’ll have surgery to repair the holes. It’s going to be a struggle to get there.
I’m trying to dry up cold turkey. It’s extremely painful. Meanwhile, Simone is making a rough transition to formula and doesn’t want to eat at all this morning.
So that’s the update. Sorry it’s not happier. If you want to keep up with us, Facebook probably really is the best way. I don’t have much time to post here anymore, and right now it’s hard to summon the energy. I love you all and appreciate the support this community has provided. I hope to rejoin it in a happier time a few months from now when Simone has recovered from her surgery and is doing better.
posted by Mel
Thank you all so much for the well wishes. I want to be able to tell you all about Simone’s entrance into the world, but I’m not ready with/don’t remember all the details. It was the hardest thing I have ever done, but it was the most beautiful and worthwhile thing I’ve ever done too. Here are some things I will cherish for the rest of my life: the love I have for the women (and it was a completely female support and medical team) who came together to bring me through it, the focus and positive energy I felt around the effort we were all making to bring this little girl safely into the world, the looks of awe I saw on the faces of each of my most loved ones when they saw my daughter for the first time, me touching her head as she was crowning, seeing her and touching her for the first time myself– especially hearing out loud the voice I’ve been hearing in my head for so long. She has the most beautiful face I’ve ever seen. I love her beautiful dark hair, her for-now deep blue eyes, her tiny fingers and toes (there are more than expected– more about that in a minute), and especially the searching expression on her face when she opens her eyes and takes measure of the person speaking to her.
I didn’t expect it to get easy after she was born, but I did hope it would get a little easier. I was released from the hospital two days ago, but I’ve been rooming in with her because she hasn’t been released yet. To me she is perfect, but she is not without her problems. She came 4 weeks before term, and she was growth restricted, so she is small even for a 36 weeker. While she’s a really good feeder, breastfeeding is not easy, and I have to pump after every feeding to build my supply. Fully 1/3 of my time I am completing some task related to feeding her, which makes it more of a chore for both of us and sucks some of the bonding opportunity out of it.
She is jaundiced, which is what kept us in the hospital another day when we thought we were going home yesterday. She is sleeping under a bilirubin lamp in my room, which means she has to be naked. That makes keeping her temperature up– particularly difficult for a preemie– quite a challenge. So we alternate skin to skin contact and the lamp with on top of someone’s chest on top of the bilirubin blanket with a lamp.
She has an extra thumb on her right hand. This in itself is not any disappointment, but we are trying to figure out what it means in connection to her overall development both in the womb and outside of it. That meant a genetic consult. The genetic consult meant a lot of testing. The testing meant a thousand needle sticks for which she was taken from me in the middle of the night when I was sleep-deprived and vulnerable and not told what was happening. When they couldn’t get blood (they kept her through the equivalent of two feeding times, so she was probably dehydrated), someone decided to keep sticking her over and over again. She came back to me cold, bruised all over, and without energy to feed, which put her behind for an entire day. I don’t take this event as a reflection on the entire hospital, which has, for the most part, been amazing, but I am very angry with the nurse who told me she was taking her to the nursery for a weight check and would return her in 2 hours so I could get some sleep and then let me sleep for more than 4.
She has a tiny dimple at the base of her spine which might be an indication of a spinal problem (probably not), so that required an x-ray.
Because of her two-vessel umbilical cord, she had to have a kidney ultrasound. That came back normal. There are numerous miscellaneous other tests that have been run or are being run related to the 2vc as well.
The latest most concerning news is that she has some heart issues that are going to need to be followed up on– 3 separate holes, all very common defects, but it’s rather uncommon to have all 3 at the same time. There’s no cause for immediate concern, but they need to be followed up, could have an affect on her ability to grow appropriately, and might require surgery within her first year.
I am trying not to see her entire childhood in and out of a children’s hospital spread out before me. I want a healthy normal childhood for her. I want that for all of our children. I want it for all of us parents, particularly those of us who have wanted so much and struggled so long to become parents.
Through it all, it gives me amazing peace and joy to look over at her now breathing gently under her blue light, blowing tiny spit bubbles from her last breastfeeding. She’s delicate and beautiful and dramatic and demanding and has come through all the challenges so far like a little champ. She has a ton of personality for a not-quite-4-day-old. She IS perfect– her own tiny Simone brand of perfection.
Hi, everyone! Guestblogger Katie F. here blogging for Mel and Simone.
Simone Adelle arrived at 4:44am Sunday, January 18th and weighed 4 pounds, 3.8 onces. She is 16 3/4 inches long. Mel and Simone are both healthy and happy. Simone is beautiful.
Mel’s water broke around 1am Saturday morning and Simone was born 27 hours later. After several hours of no contractions, they started her on a slow increase of pitocin. Hours passed, dilation came slowly (and much to Mel’s frustration sometimes not at all), and contractions came. Around 10pm Mel had the epidural which helped so much – she was so exhausted at this point and the epidural allowed her to rest and so she was able to talk to the doctor and be alert. Simone was delivered vaginally at 4:44 after 6 pushes or so.
I was honored to be with Mel during seveal hours of her early labor, and she did so amazing – everyone is so proud of her for brining Simone into this world!
Pictures to come later