Getting Ready

Had another visit with the doctors, both Monday and today. Monday was Dr. Edwards. They measured Jamie and said she was 5 lbs, 10 oz, but that did not give an accurate size on her abdomen, so she's probably around 6 lbs total. Dr. Siudmak was today, just a follow-up, and we are cleared to go for c-section on Tuesday. I have one more biophysical, which is tomorrow. I'm also going to see if I can go ahead and do all my pre-op stuff tomorrow while I'm there instead of having to go back on Monday.
I've called all the other doctors and let them know date and time, and Joe got a call from Dr. Long's office letting us know that she will be the one doing the surgery on Jamie.
We are trying to finalize everything, have our time lines down, who's going to be where, etc. We decided that Christie will go to school that day, since hanging out at the hospital would get boring for a 4 year old. Also, she wouldn't be able to see Jamie right away anyway. Either Maryann or Big Joe will pick her up and bring her down. Same with my grandmother. She's not able to drive at night, so it's better for her to get a ride.
I really miss my family in times like this. I feel bad relying on Joe's family so much. I'm a pretty self-reliant person, so it's also making me a little crazy having everyone do everything for me. Wishing my dad was here, as well as my brother and sister.
I miss my mom quite a bit right now. For those of you that don't know, she passed away almost 17 years ago from cervical cancer. I missed her when Christie was born, and really wish she was here to be with me for Jamie, too. I have the best husband in the world and we can talk about anything, but I would like to think that if my mom had lived, we would have had a relationship that would be close and, I don't know, fulfilling. I think that's the word I'm looking for. Not really sure. Maybe supportive is better. Anyway, I miss having her here. I know she's watching, but it doesn't feel like it's enough.
Maryann is going to try to get tickets to the Nutcracker ballet and take Christie tomorrow night. That way, Joe and I might score one more date night before things get nutty. I also need to go to the mall and get my semi-annual ring appraisal, re-pack my bag, get started on Jamie's stocking, and try to find another gift for Joe for Christmas. His gift for me came early, and I know what it is, but I haven't opened it. Told him to wrap it up before I do open it, since I've been wanting this thing for over a year now. Yes, it's a Cricut cake machine. I was texting back and forth with a friend of mine who has cartridges for it, she's gonna sell them to me for cheap. Can't wait to get back into cake making.
We got our insurance information straightened out too. Took a while, and after many phone calls and about 3 hours on the phone, Joe and I both understand what's going on. A huge blessing is that Jamie is 100% covered for 30 days after her birth, with no co-pays or co-insurance. That's big, since it will cover her surgery and the first part of her NICU stay. Then it's a $5000 out of pocket before Cigna covers 100% of everything else. I'm pretty sure her open-heart surgery and PICU stay after will be covered. Don't get me wrong, $5000 is a lot of money, and it's going to take a while to pay it off. But compared to what we potentially could be paying, we'll take it. Maybe I'll get mondo cake orders...
I was able to get a 3-d picture of Jamie from my doctor's appointment this past Monday. It felt like such a blessing in a pregnancy where there has been so much worry. She's beautiful, and we can't wait to meet her.

Jamie's ETA...

Went to see my OB Dr. Siudmak yesterday, and we finally set a date for my c-section, which will be on December 13th at 9:30 am. He gave Dr. Edwards a call and talked to her about whether a c-section was necessary for an o-baby, and it turns out that Dr. Long's not crazy after all. Apparently, many medical publications and many other countries deliver o-babies vaginally. In our case, because of the TOF and my gestational diabetes, we are still going to deliver c-section. This way they don't have to worry about not being able to monitor the heart while she's in the birth canal.
Anyway, I got kind of emotional after we left. My father-in-law took me and we had lunch together afterwards, then he took me home. I cried a little, if only because it's finally coming down to the wire and I'm just so worried. We've been able to mentally prepare for a long time now, but reality is going to start kicking in very shortly.
Joe and I were able to talk last night about how we were feeling about everything. You'd think this wouldn't be the first time, and it's not, but with him working so much and so late, we are feeling disconnected from each other. It doesn't help that I can't really go anywhere or do too much, but last night was good to talk. We both admitted that we were scared that Jamie might die. She's got an excellent chance being fixed and recovering, but I've read about so many little guys who don't make it due to complications from the omphalocele. Neither one of us dwells on that particular situation, but you can't help it coming up in your head occasionally.
We need to still clean out Christie's room and start getting set up for Jamie. I'm looking forward to getting in there and getting rid of at least half the stuff in there, if not more. We haven't done a clear-out of her room in over a year, and it's very overdue. We'll keep some things for Jamie, but it's not necessary to keep it all. Since the girls will be sharing a room, we are also going to need to figure out how to work the space out so that Christie will still have a place for her things. I think I'm going to start going through her clothing today, now that I'm thinking on it. Must be the nesting sensation.

Pre-Term Labor AGAIN!

This past Friday (November 18), was supposed to be pretty much like my other Fridays, which included going to Memorial to have my NST and BPP (Biophysical Profile). Since Christi Academy (school where I worked) was having the annual Thanksgiving Feast, I wanted to at least stop by and say hello to staff, kids and any parents that were there. So we dropped Christie off at school, then stopped by Christi. It was really nice to see everyone, and it seemed as if everyone was happy to see me too. We stayed for about an hour, then had to get going, otherwise we knew we would spend the whole day in L&D triage. I should have sat for my visit to the school, but there were so many people that I wanted to see that I ended up standing for the whole visit. That was dumb, I guess, since I'm supposed to be on bedrest.
Anyway, we went to the hospital, had the tests done (took almost 4 hours to get done, the place was swamped. I think it was the weather, either high or low pressure), then had some lunch. After that, we went to a salon in Deerfield Beach to get a manicure and pedicure, since I had a gift certificate from my birthday that I hadn't used yet.
As soon as I sat down in the pedi chair, I felt a contraction. Hadn't even turned on the massager yet, and it hit me. I froze, thinking that this couldn't be happening again. So I waited it out, it stopped. Lucy ( the girl doing my pedi) got started, and I got out my cross-stitch to work on. Maryann was in the chair next to me, and we were relaxing. It was nice. About 10 minutes later, another contraction hit me. What worried me was that I was feeling it in my lower back, so I knew it wasn't Braxton-Hicks. I rode that one out too, then stopped my stitching. I said something to Maryann about it too. She was a little worried, but I told her I was going to take my procardia early and drink more water, which I did.
Finishing my pedicure, I went to get my nails done. I figured that if I was having contractions and if the baby was coming now, I wanted to get my feet and fingers done, at the least. Stupid, but since I don't get out much, it was the least I wanted. I was having contractions all through the pedicure, and continued to have them through the manicure, too. While waiting for everything to dry, I asked Maryann to get me another water, then we went home. Of course, we were hitting traffic, and I had to pee. Not comfortable.
Got home, and had to lay down, and was waiting for Joe to get home from picking up Christie from school. The contractions were getting closer together, and I knew we were going to the hospital again that night. Joe got home, packed up what we needed in record time and off we went.
We got to the hospital, and it took a while to get checked in, since I hadn't been formally checked out from that afternoon. Finally we got to go back to L&D triage, where I saw the same nurses as earlier in the day. They got me hooked up to the monitors, but the one that measured the contractions kept moving, or the nurse wasn't placing them right, because they weren't showing, although I was definitely having them. Poor Joe and his hand.
After much re-adjusting, contractions were showing and Jamie's heart rate was elevating. I was put on an IV for fluids, and was later given a shot of terbutaline to stop the contractions. This eventually worked, but i was admitted to stay overnight, which was a bummer. I had dilated to 4 cm, and the nurse that checked me said that she could feel digits brushing past her fingers.
By the way, can I just say that having them check you for how much dilation is REALLY uncomfortable? For those of you who have been there, you know what I'm talking about.
We stayed overnight, Joe got to stay with me in the room. It was a rough night, and neither one of us got much sleep, since we got the room at about 1:30 am and got to go to sleep by about 2 am. The nurse woke me at 3:30 to take my procardia, and I had a hard time falling back asleep after that. I think I did around 4:30, but was awake again for good by 6.
I got to have some breakfast later, and we just hung out, waiting for Dr. Siudmak to show up for rounds. Poor Joe waited until 10, then left to get himself something to eat. Turned out that doc didn't make rounds until 3 that afternoon. By that time, Katie, the new nurse had taken me off the monitors, which was nice. Those straps get itchy. My contractions had stopped that morning, and Jamie was looking good. Dr. Siudmak came, checked me out again, and I was allowed to go home. Strict bed rest with bathroom privileges only. So home we came, and it was nice to get back to my couch. Doc did tell me that at my next appointment we were going to schedule my c-section. I have to double-check when I see Dr. Edwards (perinatologist) again, and make sure Jamie will be big enough by whatever date we set.
In the meantime, I believe Joe re-scheduled Christie's tour of the NICU for this week. Have to check with him. It will be good for her to know where her sister is going to be after she's born, and why. I really appreciate the fact that Becky (NICU nurse) is doing this special tour for her.
Thanksgiving is this Thursday, and I'm looking forward to it. We are keeping it pretty low-key this year. I love to cook, and usually try to have lots of people over for the holiday. Since I'm not allowed up, I have to give up control, and let others do the job for me.
I have so much to be thankful for. My husband is the best, such a gift from God. I don't know where I'd be without him. And the rest of my family has been wonderful. My friends, for checking up on me, and our neighbors for helping out too.  

Dr. Long

I forgot in the post below about our meeting with our pediatric surgeon, Dr. Long. We met with her last Wednesday, and we weren't really all that impressed. Apparently she's the chief of pediatric surgery, and the NICU staff had nothing but good things to say about her.
My father-in-law picked me up and we met Joe for lunch, then headed over to the hospital. Our appointment was set for 1:30, so being the conscientious people we are, got there about 1:20.
We checked in, were given forms to fill out, and we were then put into a room to wait for Dr. Long. While we are waiting, a nurse (or someone that works in the office) came in and started to ask us questions, such as what was the purpose of our visit. We were kind of surprised that they were asking, and I asked the lady if they had my records. She said that they did not, and wanted info from me about the baby's condition. So we started giving her back ground information, and the longer it went on, the more concerned we become.
After waiting an hour, Dr. Long finally came in. She started talking to us in generalities about the baby's condition, and again, hadn't seen any of my records. By this time, we were getting a little ticked off. This was a consultation regarding the surgery our daughter was going to have, and she hadn't bothered to request my records or look over any information before meeting with us????
We questioned her on it, and she got a little bit of an attitude with us, then left the room, saying that she would get them and look them over. It took her staff another 30-45 minutes to get the records, of which they gave us a copy. She came back in, and was still talking to us in general terms, not really addressing OUR DAUGHTER'S condition. We get the fact that you can't make a concrete determination until she's born, but look at the records, and then give us some ideas of what to expect based on the tests we've had done over the last SIX MONTHS! If you're not looking at those tests, what was the point in having them?
Maybe it's not fair to make a determination on the surgeon based on her office staff and her attitude, but we were not left with a good first impression. Maybe we were spoiled by our meeting with the other two consultations we had (cardiac surgeon and NICU nurse and neonatolgist). They were prepared, knew who we were, what our baby girl's name was, what her condition's were, and didn't need to consult a file while in interview to know it. They acted like they cared, and didn't talk to us like we were ignorant.
Dr. Long and her staff did.

Playing Catch-Up

Ok, so it's been two weeks since I posted anything, and my apologies for it. : /

Anyway, to catch you up to speed, after we met with Dr. Scholl (cardiac surgeon), the following Friday we met with Becky, who is a nurse clinician in the NICU at JDCH. We also met with one of the neonatologists on staff. They have 11 total, floating between the three hospitals in the Memorial System. I can't remember her name, but between the both of them, they answered a lot of our questions.
We toured the NICU, and it was really hard to see, kind of like the PICU. Lots of little ones with tubes and monitors, helping them to get better. There are a LOT of nurses around, and that was re-assuring. They also told us that there are quite a few respiratory therapists around cause the little guys sometimes forget to breathe, or forget how.
We got to see the private rooms that they have for the babies, too. Jamie would probably get one as soon as it becomes available, since she's going to be a high priority. We were also informed that she would be in the NICU for at least a month (best case scenario), and up to six months (worst case scenario). The other thing we were informed of was that she had anywhere between a 30% and 80% chance of making it. That was hard to hear, and deflated us. The problem is that 30-80% is such a huge range, and there's obviously no way of knowing where to place her. The heart condition doesn't help.
Speaking of Jamie's heart, I had my last appointment with the pediatric cardiologist (Dr. Aguirre) about a week and a half ago, and we don't see him again until she's born. He recommended that her heart surgery take place at about 2-3 months old, willing that the omphalocele heals properly first.
I have made it to 35 weeks and 1 day as of today. So far, that's great. Trying to figure out what to do for Thanksgiving is kind of tough. I guess we should make plans for it and hope I don't go into labor. If we do, well, I guess people will have to adapt. I love Thanksgiving, and it's killing me that I can't cook this year. Maybe if I sit at the table for the prep, then get a bar stool for the stove... :)

Insurance and Nausea

Our new insurance kicked in today. Joe changed jobs back in the beginning of September, and there was a waiting period, which ended yesterday. Goodbye AvMed, hello Cigna.
Now we get to go through all the rigmarole of answering questions, filling out forms, and repeating ourselves eight hundred times. I did manage to find out that our surgeons and doctors are all transferable, which is very helpful. Can't complain about that. Making sure that I get my nurse to come out and give me my shot is another story. Talked to a nurse from Cigna today (that was fast) and she asked a bunch of questions, and has to get my nurse approved. If not, well, I guess I will have to find someone to come and give me the shot.
I was really sick yesterday. I wanted some pizza rolls for lunch, so I cooked them up, started eating. About halfway through I started feeling nauseous, like I wanted to throw up. I fought it, and eventually took a nap. When I woke up the nausea was worse, and it got to the point where I couldn't even take a sip of water. Then, I started getting body aches, like I was getting the flu. Not good. I was miserable. Lasted all night. Wanted to help Christie get ready for trick-or-treating and couldn't even do that. Lasted all night, and woke up ever two hours or so, miserable. Was still feeling queasy this morning when Joe and Christie left for work/school. Fell back asleep, woke up at 9am, and felt fine.
It was weird. I asked my nurse today about it, and she said that it could possibly been a hormone surge, and that people underestimate hormones all the time. Could have thrown me off. All I know was that it sucked. And I'm hoping it doesn't happen again.

Meeting Dr. Scholl and about Joe Dimaggio Children's Hospital

Joe and I got to meet Jamie's cardiac surgeon yesterday (10/28/11) over at JDCH. I also got to meet Julissa, who I have been on the phone with quite a few times already (she's the nurse practitioner for Dr. Scholl). It was nice to put a face to a voice. :)
Maryann (my mother-in-law) has been driving me around on Fridays for my various appointments, since she has that day off. We went for my biophysical and non-stress test over at Memorial Hospital, then hit Dr. Siudmak's for my regular appointment, then met Joe for lunch. We came up with some questions for the surgeon, then headed over to the children's hospital for the meeting. Dr. Scholl was a very nice man, and didn't make us feel rushed or bad about asking any of the questions we had. The people in the Pediatric Heart Station were all very nice, very kind.
After we had the meeting, Julissa gave us a tour of the PICU (pediatric intensive care unit). It is split into two areas, one side was all cardiac patients, the other side for other issues. It was really hard to go through there, and see all those kids hooked up to those machines. There were a lot of cribs, with a lot of babies. I was barely able to hold my tears back until we got out of there and on our way back down to the truck. The nurses we met on that floor were also very kind, and it seemed as if the staff and the overall hospital does everything they can to keep the parents together with the kids, and also make it an environment where siblings can come and be comfortable too.
They have a building called the Conine Clubhouse (named for Florida Marlin Jeff Conine) where parents can stay overnight to be close to their kids. It's right next door to the hospital, and it's free of charge. I guess you can arrange to stay for blocks of a week or so, but they do their best to make sure there is always somewhere for parents to be close by.
Joe's new job with Heico (Jet Avion) is about 3-5 minutes from the hospital too, which is great. I have a feeling we are going to be putting some serious time in over there.

Gestational Diabetes and More Appointments

I got a call from my OB's office a few weeks ago saying that my glucose levels were a little high and they wanted me back for the three hour test. Well, being 30 weeks preggo and fasting from the night before were not easy, but it was done. Felt like I was surrounded by vampires, getting my blood drawn every hour! :)
That was done on a Friday, and Monday they called me letting me know that two of my 4 tests came back a little high, and that I was borderline with gestational diabetes. I wasn't really sure how to take this. I mean, I was so late in my pregnancy, did it really matter? They said yes, and that extra sugar could cause the baby to grow too much in the short amount of time we had left. So they set me up with a diabetic consultant. Getting to this morning, I drove ( probably shouldn't have, but we were kinda out of options. Joe's missed work and is reaching the year-end deadlines) all the way out to Coral Springs from Wilton Manors, only to find out I had mixed up the days of the appointments. Not today, but NEXT Thursday. DUH! Call me preggo brain. So I came home and had some lasagna.
Then, a couple hours later, I hear from the nurse practitioner at the cardiac surgeon's office that my appointment is on for tomorrow (thank goodness she called, I might have gone next Friday) and that she couldn't coordinate getting both surgeons and the neonatologist together at the same time. This was disappointing, since I was looking forward to having everyone there that was going to be responsible for the care of our baby. But it was not meant to be, so I will be seeing Dr. Scholl (yeah, that's really his name, and he's definitely not a podiatrist) tomorrow, and the pediatric surgeon Dr. Long sometime next week. Then, we have my bio-physical and NST (non-stress test to you uninformed) tomorrow at 8am, OB Dr. Siudmak at 10:30, lunch with the hubster, and Dr. Scholl at 1:30. Gonna be a long day.
We are also in the process of switching insurance companies next week, since Joe started a new job back at the beginning of September. This has made us both a little nervous, but we can't afford to COBRA our old insurance since I no longer have an income (bed rest can really suck sometimes). It took us weeks to decide on the "right" plan, which one all of my doctors come under, how much coverage will Jamie have for a lifetime, how much out of pocket, etc. So we have chosen, and am now waiting for the new cards to come in the mail. I am wondering if the company my nurse works for will be covered so she can continue to come out and give me my shots once a week.
I am getting more emotional about things, anything, as time goes on. The uncertainty of what will happen to our little girl is a lot, and I cry. I don't do it in front of anyone, especially Joe since he's stressed out enough already. But I read online a lot, and there's lots of hope, but there are also people who have lost their children due to complications. I believe I'm ready for whatever God may send our way, but that's when He likes to mix it up and do something unexpected.
Jamie is pushing against the walls of my uterus, and man can that be uncomfortable. But it reminds me that she's growing, and the bigger she is, the better her chances. We are so blessed to have Christie, and have been given the opportunity to be parents to Jamie. Please God, don't let me screw it up.

Baby Jamie

My name is Tara and I am 32 weeks pregnant. I am married to a wonderful man named Joe, and we already have one daughter named Christie. She's four and a half. We definitely wanted to have more kids, and started trying after Christie turned two. Unfortunately, we had two miscarriages last year, one in July of 2010 and the other in December 2010. We were both really heartbroken and wondered if we were just supposed to have Christie. For the most part, I had resigned myself that she would be an only child.
In May of 2011, I helped chaperone a field trip. I work in a school for kids with learning disabilities, and we were taking them on a cruise to Mexico. I kept thinking that I was going to get my period on this cruise, and was all prepped for it. When it didn't show, I thought, "Well, it's been a hectic couple of months, and it's probably just stress keeping it away". After another month of not getting it, I took the preggo tests (6 of them) and all came back positive. I was really surprised, and a little apprehensive. Since losing the previous two, I wasn't getting my hopes up. Joe and I went to see my OB, and he put me on progesterone tabs, normally used for women undergoing IVF. He said that this would help to keep the pregnancy in place. Well, I had to insert them twice a day, and the extra hormone in my body made me pretty emotional. I kept wondering when I would miscarry. Occassionally, I would spot and then I would freak out. There were also a couple of times that I had cramps and would put my feet up, hoping that was enough to stop them, which it was. I even had a minor melt-down at a board meeting because I started cramping right in the middle of one.
Well, we managed to pull through. Joe and I were grateful, and we looked forward to our first ultrasound. We brought Christie with us, hoping that she would be able to see her new baby brother or sister.
When we had our first ultrasound at 16 weeks, we found out that our new little girl had omphalocele My OB broke the news to us, and I remember he had to spell the word out so that we could go home to look it up. We were in shock, and not sure how to handle the information. He referred us to a perinatologist, who we went to see about two weeks later. We were checked thoroughly, taking about 2 hours to do another ultrasound. When finished, we had an amniocentesis done and were told to go see a pediatric cardiologist. We also waited pretty anxiously for the results of our FISH test (early results of amnio). About a week after this, we saw our cardiologist. After another intense ultrasound (3 HOURS!) he determined that our little one had Tetralogy of Fallot. We had to ask him to spell this out as well so that we could go home to look it up properly. On the way home from that appointment, I told my husband that we needed a name for this little girl since there was so much going on with her. He came up with Jamie, which I liked and agreed to.
I have had to see one doctor a week since those initial visits. Thank God for my phone calendar, or I'd never keep them straight.
In Septmeber, my sister got married. I was supposed to be her maid of honor, but the day before I was supposed to fly up to see her, my perinatologist told my I was grounded. At 27 weeks, my cervix had shortened and funneled, and she was putting me on progesterone shots once a week. I was pretty devastated that I couldn't get to the wedding. My whole family was coming out and of course I wanted to be there. I was also reduced to working part-time, then bed-rest the other half of the day. I hated that part. Of course, nobody likes bedrest (not that I know of) and this was only partial!
Then, on the Monday morning that I turned 29 weeks, I wasn't feeling right. I told my husband, and he said to skip work and stay home. Good thing I did, cause I called the doctor's office, telling them I though I was having contractions, but wasn't sure. Of course, they said go straight to the emergency room. So I called Joe and he met me at the hospital (his work is about 3 minutes from there, and me being the stubborn German that I am, told him that I was fine to drive). They took me up to L&D triage, gave me liquids and though that would be it. When that didn't do the trick, they gave me procardia, and also a shot to help mature Jamie's lungs in case she came early. After the contractions seemed to stop, I was allowed to go home, with the promise that I come back the next day to get my follow-up shot for Jamie's lungs. I was also told that I was on full bed-rest. Bleh. But if that's what I had to do, then fine. Whatever was needed to keep Shorty in there for a while longer.
The next morning, I was having contractions again, more intense and closer together than the day before. I called my husband, and he had to leave work again, picked me up and took me back to the hospital. This time they ended up admitting me, and putting me on a drip of magnesium sulfate for 24 hours to get the contractions to stop. Unfortunately, I was also given a catheter so that they could monitor my liquid output. That sucked. I stayed in the hospital for two days, then was allowed to go home. I have been on procardia (10 mg) every six hours, as well as resuming my progesterone shots once a week. I have a nurse that comes out to the house for that fun little even. Actually, it's not that bad. More annoying than anything else. I will say that I am a bit of an emotional wreck for a few days after the shots. But since it's just me and the dog and a couple of fish during the day, I do alright. :)
That about brings us up to speed. I will try to do this every couple of days. If anyone has questions, please feel free to let me know. I know I had plenty, and probably still will.

 It has been emotional and educational, overall.