Coleman Family Update: Lucy
Dear everyone-
I know it's impersonal but, it's a lot easier to send one e-mail to all of our family and friends, than to call all of our family and friends. Don't get me wrong, calls are welcome and appreciated. Anyway, here it goes... It is official... we got a call from the genetics counselor yesterday and we're having a girl!!!
See, this is one of those good news/bad news e-mails so, I thougth I'd start with the good news :-)
Of course we never thought that we'd want to know the sex of our baby, and we never thought we'd have an amniocentesis and we never thought we'd be faced with one c-section, let alone 2 in one pregnancy but..... It is also official that our little girl had Spina Bifida. We have one more ultrasound scheduled so we can see where the lesion is on her spine and how big it is. Hopefully that will be enough information for us to really start planning the trip to Tennessee for fetal surgery for Spina Bifida.
We are 21 weeks pregnant right now, and the surgery is done between 21 and 30 weeks. They have us penciled in for the week of March 6th (2weeks!) If all goes well we will have our surgery Thursday the 9th. So, we will keep you all posted by mass e-mail, even when we're in Tennessee.
All prayers are greatly appreciated!
Much love,
Rachel, Aaron, Leah and Baby Lucy
Lucy Update #2
Hello all,
Here is the scoop as of today. We are for sure headed to Tennessee on Sunday to undergo serious testing, consultation and most likely, surgery on Thursday. Our flights are booked.
The results of our level 2 ultrasound yesterday left us in a somewhat confused but, elated state. After much searching by two high-risk OB/GYN's, there was no lesion found! They feel that do to all of the facts, (amniocentesis, hydrocephalus and hind brain prolapse) there is a hole somewhere that must be pretty small. So, this is good news according to our doctor in Tennessee. He said that this is the best case scenario. He also told us today that repair of lower lesions have proven to be most beneficial for Hydrocephalus and Hind-Brain Prolapse.
All of your prayers have obviously helped! Thank you all so much but, it's not over yet.
Love,
Rachel, Aaron, Leah and Baby Lucy
We will be on our way to Tennessee Sunday Morning
Can it already be time to go? We are packing our bags and heading out on Sunday. The only new news is that our surgery has been pushed forward a day. It is now scheduled for Wednesday the 8th in the afternoon.
As we've mentioned before, we are taking our lap-top computer and we will keep you all updated via e-mail. Whew... honestly, it is a little nerve racking but, it's nice to know that we're going to be in good hands.
Thank you all for your love, support and prayers and more :-)
Rachel, Aaron, Leah and Lucy
Monday in Tennessee
Today we had an ultrasound and they found the lesion in Lucy's back. It's located at L4 (4th lumbar) for those of you who know what that means :-) We wouldn't have understood it 3 weeks ago ourselves, but it is good news. It's a low enough lesion that surgery has a great chance of effecting the water on the brain and hind brain prolapse. Dr. Bruner said that most kids with L4 have "weak ankles" and she would need to wear ankle braces or supportive inserts to walk. He compared it to your first time iceskating and how wobbly that feels. The surgery will have little to no effect on her ankles.
It is not the usual type of lesion they find with Spina Bifida. Usually there is a cyst protruding from the child's back and the spinal cord is stuck in the middle. Lucy's lesion is a hole, her spinal cord is still inside the spinal column. This type of opening presents a problem in repair. There is no excess skin to pull closed. So, they cut a slit in her skin on both sides of her body. They pull the skin closed over her back and then use donor skin to close up her sides. I'm sure it's hard to picture but, that's the best I can explain it.
We still have a ton of consultations tomorrow and we'll keep you posted. We are feeling pretty confused right now. Please keep praying for us, we really need it! We are set up for surgery at noon on Thursday.
We are staying with Ron and Debra, (friends of the family) and they have been so awesome! We only had to rent a car today because, they have a friend who is letting us use their spare truck for the rest of the time we're here. We'll fit in better driving around Nashville in a pickup truck :-)
Love-
Rachel and Aaron
Tuesday in Tennessee
We started today off with a tour of the Newborn Intensive Care Unit where I promptly passed out. I woke up on the floor with a ton of doctors and residents around me. I guess I freaked them out a little. My eyes were wide open and I was white as a ghost and completely unconscious. Still, they took us to Labor and Delivery and monitored Lucy and me. We were fine and didn't have to run around for consultations, they all came to us!
Of course the assumption was that I was overwhelmed by the site of all the preemies on ventilators etc. but, that wasn't really the case. I was standing there with Aaron and my legs started to feel weak and I told the doctor who was guiding us that I needed to sit down. I guess I should have said, "I need to pass out!" Dr. Devito went to find a chair and I leaned over to wrap my arms around Aaron. The next thing I know, I'm waking up on the floor of NICU! They were worried that I had a seizure or something. I was worried that they wouldn't let me have surgery in 2 days. But, it's all okay now.
What happened was simple. We hadn't eaten much in days. Sunday we were on 4 airplanes and #1 & #2 didn't even give us peanuts! #3 gave us peanuts and #4 gave us crackers and cheese. We did have dinner that night. On Monday, I couldn't eat before the MRI and that was delayed causing us to also miss our lunch break. We got home and had dinner. Today we rushed out the door @ 8:00 AM and I hit the deck in NICU @ 9:00 AM. They gave me a free breakfast in Labor and Delivery and of course we were now running late for the consultations. BUT, they made sure that we really had a lunch break.
Other than that no new news! Today was more informative, we talked to a lot of people and they walked us step by step throught he surgical procedures and we got to ask our many questions. We are totally planning on surgery Thursday.
Tomorrow we meet with a Social Worker and then we meet with the whole team to have a "wrap up" meeting. Then we go home and decide whether to show up for surgery the following day... We felt much better today, totally calm, and ready for surgery.
Thanks again for thinking of us-
Rachel and Aaron
Wednesday in Tennessee
Well, today was a rather mellow day, especially compared to yesterday's runaround. We started off by meeting with a Social Worker, who apparently was there to make sure we know what we are doing. Things went well and she let us know that she was impressed with the way we've handled the decisions we've had to make here. We had an alotted time of 2 hours and used about 30 minutes of it. So, with the extra time we had before our final wrap up, we headed to the campus bookstore to scope out what new Vanderbilt gear to buy and to try to find a t-shirt for Leah. What we really wanted was one of those shirts that say:
to get intrauterine repair of
Spina Bifida for my little sister,
and all I got was
this stupid t-shirt!
The wrap up with the ethics guys and social worker took about as long as the first meeting did. It was pretty much everyone's last chance to ask questions and clear up any possible confusion. Basically, they concluded that the challenges and decisions we have had to make with Leah in the past, (schools, cochlear implants etc.) have prepared us for what we now had to take on with Lucy.
Tomorrow we will be admitted to the hospital at around 9:00 AM for a 12:30 surgery. We are feeling very calm about the decision we have made to proceed with the operation. However, as tomorrow approaches and it is time to go, we may experience a few butterflies.
We do have faith that everything will go well and we believe at this point, feeling as calm as we do about our decision, that it is really no longer in our hands.
Until tomorrow,
Rachel and Aaron
I just received a call from the nurse letting me know that the surgery is finished and they are bringing Rachel back to the room now.
More news to follow later!
PHEW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Aaron
Successful Surgery
It is officially time to catch up on sleep! Rachel is back and all went very well. Surgery started about an hour late, because the neurosurgeon was called out. That hour was a tough one for me, because Rachel was already doped up beyond cognition (almost, anyway). So around 1:10 they came in and wheeled her out for a 1:30 PM surgery. The nurse assisting for the two surgeons was great about calling me and giving me updates. We also gave her our camera and she took plenty of pictures of the operation.
The neurosurgeon (the one who does the work on the baby), came to me as soon a he was finished with his part and gave me the good news. Lucy actually ended up having the skin needed to make the proper repair, thus avoiding the need to make the relaxing incisions and skin grafts. This made me very happy. He reported that his part took around 15 minutes and that Dr. Bruner was closing up as we spoke.
When Rachel returned to the room, I was able to speak with Bruner about his parts of the surgery. He said everything went awesome. The uterus stayed calm and there was very little blood loss. He also delivered a message to Lucy for us.
So, it's official, we're #82. Everyone has been totally awesome here in Tenn. We may just stick around for awhile. If only they had a good school for the deaf! HaHa.
Thank you all for the prayers and thoughts and to all of you who helped by chipping in $ so we were able to come up with the deposit. It was you who helped make this possible for us. We appreciate it more than we could ever express. Here's to an uneventful recovery.
Love, Aaron and Ray
Rachel here and doing awesome
Hi y'all, (see it's rubbing off on us!)
I just crawled out of bed, (literally) and over to the lap-top to send a quick note. They unplugged me from all of the tubes and wires this morning and moved us over to recovery. The only thing I'm "stuck" with is a terbutaline pump, the needle is in my thigh and the pump hangs on my clothes. This keeps my uterus from contracting. With an operation like ours, the trauma to the uterus puts you in labor, the trick is controlling it. I'll wear this pump until the day I deliver Lucy. She's not due until July 12th, so we are not quite out of the woods yet. It would be great if we make it to 34 weeks, we're 22 now. The babies born at 34 have done really well, please keep praying for us.
One of the main benefits we hope to see from the surgery is that her hind brain moves back into the correct position, before it becomes mylenated. It is currently soft and squishy, but by the time she's born it will have become firm. We want it to move into the proper position first and then become firm, so it will stay in the right place, thus preventing problems with swallowing and breathing.
The other thing we will be watching and hoping for is the natural absorption of the cerebral spinal fluid in her brain. Right now, there's too much fluid and it's putting pressure on her brain, keeping it from growing. If it goes away on it's own, she will not need to receive a shunt 2 days after birth.
We have really enjoyed receiving your e-mails. You have all asked great questions. We have also appreciated your inspirational thoughts and e-cards. I don't think I will ever be able to say "Thank you!" enough.
Love,
Rachel
Out of the Hospital
They let us out of the hospital yesterday. We were a little sad to go. It does feel like we've had a nice long vacation here in Tennessee and evryone at the hospital had taken such good care of us. For the last 7 days everything in our lives revolved around Vanderbilt. And to top it all off, we've had this life changing surgery. So, we walked out with tears of gratefulness in our eyes and we hope we'll have the opportunity to return there, with Lucy, under better circumstances.
We do look forward to coming home. Aaron and I miss Leah so badly. I am on strict bed rest for the next 3-4 weeks. After that I will hopefully be on modified bed rest. I can't wait to get home and get into my own bed, though I'm sure I will be aching to get out of it in a few weeks.
I have only had 3 contractions since surgery. They told us not to be concerned unless we have 6 or more per hour. Many of you have asked about flying home and if it is safe after this sort of thing. Our doctor has instructed us to take an additional uterine relaxant on our travel days. So, of course I'll have the pump in my leg and I'll take a pill every 4 hours. My uterus should be like jell-o and we should be just fine.
I'm not sure if Aaron let you all know that Lucy is also doing fine. She was kicking me within 1 hour after surgery. Every time they have monitored her heart, it has been steady and strong. She gets hiccups every day. She can now kick hard enough that Aaron can see it and feel it. But, here's some interesting trivia for you: Leg function inutero really has no correlation to leg function after birth. So, just because I can feel her kick now, doesn't guarantee great leg function when she's born or when she grows up. It's easier to move when you're floating in fluid and moving your upper body automatically moves your legs.
We won't be e-mailing every day, since we don't have new info every day. But, we will keep you posted. And like I said, I'll be on bed rest and I have a lap-top computer, so feel free to check in with us,
Love,
Rachel and Lucy
Ultrasound Update #1
We went to the docotr yesterday, my first time out of the house! They did an ultrasound and said there was a noticeable difference in the amount of fluid (less fluid!) on Lucy's brain. They were able to see her cerebellum very well. Last time, they had a hard time finding it because it was pulled so far back. We were thrilled with this news, as it has only been 10 days since the surgery. We hope to see more good things in the next few months.
Our doctor said she's not really worried about us and set up the next appointment for 3 weeks from today. A lot of times they want to see high risk patients weekly, so we feel this is also a good sign. I had to get a steroid shot yesterday, it helps Lucy's lungs in case she is a little early. We went for another steroid shot today, they give them in sets of 2, 2 days in a row. It was nice to feel the sunshine and Aaron bought me an ice cream for being so good :-)
My mom is still with us here and my brother Lex came into town too. They both fly out tomorrow. It will be interesting to see how we do on our own. My contractions have been pretty good the last few days. We had a couple of bad days before that, up to 15 contractions in one hour. They say I'm allowed to have 4 contractions an hour, after four they start to see changes in the cervix. So, Aaron said he'd buy me a little t.v. after 1 week of no contractions. (Great just what I need... to become addicted to daytime television)
It's funny, we've been getting complaints from a lot of you, that you miss the updates... I was afraid we were boring you. I will let you know whenever we have news.
Love,
Rachel, Aaron, Leah and Lucy
Lucy's April Update
It's been a few weeks, so I thought I'd do a fast update for you all. We're actually 26 weeks and 2 days pregnant now and 4 weeks 1 day post-op... but who's counting?
I had to leave the house Monday for a doctors appt. It smells so good outside. I think it was about 90 degrees. I almost started crying because it was so beautiful.
We have a new doctor. We just got transferred to a different Perinatalogist who deals much more frequenly with patients on bed rest and patients who have the pump in the leg. She was cool and did the longest, most thorough ultrasound ever. She seems to know what she's doing. We feel great about the change.
Before we went to Tenn. Lucy's dilated ventricles measured 16mm. Now they have gone down to 13mm. 10mm or less is normal. (That's the water on her brain)
Last week they said she weighed approx. 1 lb. 10 oz., this week she's 2 lbs. 2 oz. So, it looks like she's growing well and the fluid on her brain is slowly becoming less. Her cerebellum is becoming more of the right size.
We see our new doctor weekly and we have a nurse who comes to the house every week. They sent a physical therapist to show me the few exercises I can do, so I'm not "stuck" in the fetal position when this is all through. They sent a Social Worker to make sure I'm handling bed rest well.
My mom was here the first week. She took care of Leah and revamped our apartment. It looks great. Then my dad came down the next week and he took care of Leah and hired a maid for us for the next couple of months. Hurrah!
Leah has a great grasp of how bedrest works and she comes up with all sorts of ideas. Like..."Leah and Dad will go to the park and mom will stay in bed!" It has evolved into more elaborate ideas like..."Leah and Dad can drive to Utah and Mom can stay home in bed!"
A friend let us borrow an TV/VCR combo and Leah thinks it is the greatest thing that has happened to our bedroom. I have watched Aladdin with her about 50 times in the past week and we've seen Beauty and the Beast, (in Spanish) about 30 times. Leah has been able to feel Lucy kick and she gets so excited. She lays her head on my tummy and says she's "listening" to Lucy. (With or without her hearing aids on)
All in all we're doing pretty well. Still trying to keep the contractions down to a minimum. Some days are great, some days we get a little worried but, so far so good.
I will send an update the first week of each month, unless something wild happens.
Special thanks to all of you who have sent flowers, and cards, brought dinners and taken care of Leah. And thanks for remembering us in your prayers!
Love, Rachel
Lucy- (May Update)
Hey everybody-
Lucy will be born on Wednesday, June 7th. Our doctor will not budge on that one. We will have an amniocentesis the day before and if her lungs are developed...she's coming out!
It will be interesting, since Aaron will be out of town for the 8th, 9th, 10th and 11th! Oh well, I'll be in the hospital the whole time, which is sort of like being "out of town" too! My mom will be here to help with Leah.
I'm sorry I don't have much more news than that. We are thankful that things have been pretty quiet so far with my contractions.
We haven't seen any big changes lately in the water on her brain but, we are still hopeful that it will go away by the time she is delivered. Only 5 more weeks! (Go Lucy! Go!)
We finally scanned the surgery photos into the computer, so those of you who want to see my uterus... let me know... (boy, that sounds weird!)
Love-
Rachel, Aaron, Leah and Lucy
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