Wednesday, August 25, 2010

Another quick update

Another quick update: I know, two posts in one day, but I had to tell everybody about something that just happened. I can’t even convey in words what a miracle yesterday was but to truly exemplify this I have to tell everybody that Dr Seligman just called me this morning. Yes, you heard me right, the Dr, MY Dr personally called me. He started out the conversation by saying that he hoped I was able to sleep a bit better last night. He went on to say that he had received my medical records from Dr Magee’s office and that he reviewed them last night and found nothing there that alarmed him or wasn’t something other than what we had already discussed yesterday. He finished up by saying that he would get tomorrow’s MRI results, review them with Dr Goldaber and called me as soon as possible.

Update on Baby Ethan

I’ve been meaning to update my blog; however every time I go to do so I think that I’ll wait a few days longer in the hopes I’ll have more information. At this rate, sticking to that logic, I quite possibly might not have been able to update this blog again until Ethan is at least 18 years old. I say that in jest but it has been a very frustrating time of hurry up and wait. Let me rewind a few days and give you an update on the MRI we had last Wednesday. Everything with the MRI went smoothly. Dr Magee’s office called me Thursday afternoon and told me that they wouldn’t have the results until Friday at the earliest. I was obviously very anxious so late in the day I called the Baylor radiology film lab and they told me that they would have a copy of my report ready first thing Friday morning. Jason and I go over there together Friday around 11am to pick up the report and attempting to decipher all the medical jargon was a bit harder than I expected; however the last line was the most important- “Dandy Walker not strongly suggested”. This is important because DW is certainly the worst case scenario. The incidence of babies that are born with DW is 1:25,000- that puts it at about only .004% of babies born in the US every year are born with Dandy Walker. This is primarily due to the fact that a large portion of babies with this affliction either pass away in utero or are terminated by the parents because of the tragic prognosis it presents for the unborn baby. So anyway, Dr Magee’s office calls me late Friday afternoon, not knowing that I now have a copy of this report myself, and tell me that yes, it appears that it isnt DW, sure this is good, but we still want you to do this follow up MRI with Dr Rollins on Sept 2nd. That is basically all his nurse told me. I was obviously still relieved that this apparently wasn’t DW so I didn’t think about their response much. As the weekend wore on I gradually got more and more upset. By the time that this next Fetal MRI rolled around on September 2nd, it will have been almost 4 WEEKS since I have seen or spoken to my doctor. This, from a doctor that just two weeks ago was working with such a sense of urgency. I became very frustrated with the lack of communication so I decided on Sunday that I would call around first thing Monday morning and search for a doctor that would be willing to give me a second opinion. This too, proved to be more difficult than I expected. The first issue is that in the entire D/FW metroplex there appears to be less than 25 doctors that specialize in Maternal & Fetal Medicine (perinatologists) and none of them will bring you in for an appointment without a referral from your OB. I repeatedly called my OBs office Monday to try and get that referral for a second opinion; however they weren’t willing to comply with my request. They felt like Dr Magee was doing what was expected of him and that I was getting the best care possible. I was incensed that any doctor thought it was acceptable to let 4 weeks pass before talking to a patient that was carrying a baby with a potentially fatal condition. I have heard nothing from either doctor and even the nurses are not responsive. Everything seems to require 2 or 3 calls to their office before they respond. They aren’t telling me what this all could be, if not DW, but they weren’t telling me that I could kick back and relax either. My biggest issue is that they weren’t telling me ANYTHING. I felt like my hands were tied but I still felt strongly that I needed a second opinion so I decided that I would call another OB that I have used in the past to at least get his opinion on what is going on. He is in the Arlington area and is an older gentlemen with a huge practice , meaning he has TONS of experience. In the limited times that I had to visit with him in my earlier non-child bearing years he also came across as very much an arrogant, straight shooter. That is exactly what I needed and wanted right now. I will mention really quickly that he is also a die-hard Aggie. Anyway, so Jason and I had this appt with Dr Seligman yesterday. It didn’t start off well when our original appointment was at 11am and at 12:30pm they told us that they would have to push all our appointments back because he got pulled into an emergency at the hospital. Anybody that knows Jason knows that after sitting there in the lobby for the first 1 ½ hours he wasn’t starting off with a great first impression of Dr Seligman. Let me tell you that that all changed once we started our visit with him. I told him what had been going on and what we had been put through. He immediately got us back in to see his sonographer who did an ultrasound. The fluid in the back of Ethan’s brain is still there, but the good news is that it doesn’t seem to be getting worse. Then Dr Seligman got on the phone and tracked down the perinatologist (Dr Goldaber) that he refers his patients to. He ran down our history and the earlier MRI findings to him and asked him how he would have Dr Seligman proceed if I opted to change the remainder of my maternity care to him. Dr Goldaber suggested that I go to UT Southwestern to get a follow MRI done. He gave Dr Seligman the phone number and name of the person to call at UTSW to get it scheduled and suggested Dr Seligman use his name to get me in more quickly. Dr Seligman immediately sat me down with his Office Coordinator and had her call and get the appointment scheduled. They didn’t send me home and tell me that they’ll call me later once the appointment is scheduled, which seems to be the process for other doctors. In fact, Dr Seligman told me that I could not leave until Debbie had the appointment scheduled and I had everything I needed. The MRI appointment at UTSW is scheduled for Thursday morning at 9am. Dr Seligman also scheduled me for a follow up appointment with him next Wednesday; however he assured me that I would hear from him before then. In fact, he said that if the doctors at UTSW told me that they could give my doctor a verbal review of the MRI ahead of the written report that I should call his office and let them know. He said he would call over to UTSW and get the verbal results and call me as soon as possible. Considering the day that he had already had, he was attentive and listened to all my concerns and questions. I can’t tell you what a blessing it was yesterday to have someone in the medical profession listen to Jason and I and understand the hell that we have been through. I know without a doubt that this is the where the rest of my maternity care should reside. Dr Seligman said that its likely I would have to meet with Dr Goldaber through the remainder of the pregnancy and he warned me that he is a typical “pain in the ass”, academic doctor. LOL! But he also told me don’t worry, we will use Dr Goldaber only for what he has between his ears and that he would be responsible for all the warm and fuzzy stuff. Dr Seligman said that he hopes within the next week we are able to collect all of this information and allow me to kick my feet up and enjoy some of this pregnancy. This too, is what we are praying for, but right now I am so thankful for the events that transpired yesterday. It truly was nothing short of a miracle in of itself. Dr Seligman’s office called me yesterday evening and told me that my insurance company was putting our request for another MRI through a review that takes 48-72 hours and unfortunately that might require that Thursday’s MRI appointment be rescheduled; however just two minutes ago I received a call from the doctor’s office that the insurance has called back and that I don’t require a pre-certification after all. We are all clear. So I guess that is all the information I have at this time. I apologize for the long update; however there has been a LOT going on. I ask for your continued prayers for our family and Baby Ethan’s brain. I really feel confident that within the next week, possibly sooner, we will have a clear understanding of what is going on and what the plan for the remainder of the pregnancy is. This is the first time in a few weeks that I feel confident of where we are and hopeful for what is to come.

Wednesday, August 18, 2010

Now we wait

MRI was done this morning at 11am. The MRI tech said that my verbal results would be available for my doctor immediately as the Dr/Radiologist read them as the images were being taken; however my guess is that my Dr will not call me until he receives the written report. The Radiologist will dictate the report this afternoon, review it and then send it over to my doctor. I am hoping that we hear something tomorrow, but Friday at the latest.

Tuesday, August 17, 2010

Update on Baby Ethan

I know there are a lot of people that have been following what is going on with us so I wanted to do a new post on my blog to provide everyone an update. We got the results of the amnio today and they were all clean. Basically this means that Jason and I together are not producing some genetic abnormality that is causing this excess fluid they saw in Baby Ethan’s brain. This is good news because this ensures that any future baby will have no increased risk of having this happen again. This is very good news. In addition to giving me the amnio results they were also calling me to inform me that our appointment for our Fetal MRI had been set for September 2nd. I immediately freaked out and became very upset. Jason freaked out. I pleaded with her and even asked her to understand what this is like for me, to have my baby’s future hang in the balance of the results of this test. This meant that we still had more than 2 weeks of pure torture ahead of us before we had any idea where the situation currently stood. We called back and basically demanded that they find us someplace else that could get us in sooner. The nurse insisted that my Dr really wanted me to use this specific radiologist; however she was on vacation until Sept 2nd. There was just no way that I could put my life and my pregnancy on hold for another 2 weeks. The nurse called back after speaking to Dr Magee and said “well if you really can’t wait until Sept 2nd, then I’ll see if I can get you in at Baylor because we can easily share films with them”. She called me back not 30 minutes later with an appointment for 11am tomorrow. Valerie, Dr. Magee’s nurse told me that it will still take a few days for us to get the results, but it will be a lot sooner than the original September 2nd date. Apparently the radiologist will do the scan, write their report and then send that report over to Dr. Magee’s office and Valerie will call me with the results. My sincere hope is that we get a final diagnosis by the close of business on Friday. That gives the radiologist and my dr’s office 2 ½ days to get everything done. All along I have felt as if I can handle any diagnosis, even the worst diagnosis, better than the despair that I feel right now in our current state of complete unknown. We are still praying for a miracle in Baby Ethan’s little brain and I thank you for your thoughts and prayers during this difficult time. I feel blessed to know that we have such a loving and supportive group of family and friends. I ask that you continue those prayers for a few more days as we await the results of our MRI. I will update my blog again as soon as we know something from the scan.

Friday, August 13, 2010

Update on me

A friend asked me how I was doing today....
I think Im doing pretty well considering the news we got this week. Its hard to refocus my energy because all the blogs I read, all the plans Ive been making, all my projects and ideas over the last 4 months have been about this baby and right now I cant do any of those things. Instead of doing all of those things Im really trying to do anything and everything to forget Im pregnant, not embrace it. I hate the thought of wearing maternity clothes right now but this morning I couldn’t resist the urge to listen to his little heartbeat. Im doing all these things I think as my own preparation for the worst possible news. I have moments and let me tell you they are fleeting, but there are moments that I think maybe his brain will turn out to be perfect on this next MRI, but I don’t allow myself to go there much. Don’t get me wrong, I pray every day, multiple times a day for that very thing, but mostly right now I’m praying for strength, faith, hope, and acceptance of whatever it is to come. Hopefully, next week will start to bring us closer to a resolution. We should get the amnio results sometime next week and also get our MRI appt set up. Both of those things will really help me to see there is an end in sight.

Thursday, August 12, 2010

No Title

I don’t think that it is a coincidence that just a few hours before I went to the doctor Monday morning, when everything still was seemingly perfect, I posted that biblical verse below that is now something I grasp on to as my life line. Certainly the last 4 days have been the darkest days of my life, and even though there is nothing even close to a resolution or conclusion, I am at least starting to feel some since of light at the end of the tunnel. Every day I will start to feel a bit better. I still have lots of moments ahead of me where I want to do nothing but lie in bed and cry, but I have to get up and forge ahead. Even though this is definitely the hardest thing I’ve ever had to deal with, I am still so blessed. My husband has been amazing and I love him even more now and I didn’t even think that was possible. I have a wonderful, supporting circle of friends and family that love Jason and I so much that they are praying as hard as we are that there is somehow a miracle in baby Ethan’s little brain. I have a wonderful job that I love, which right now provides the best distraction I could ask for. This job provides a good life for Jason, myself and Ally. It means that we are able to have a nice home and we never have to wonder if there is food to eat or want for any of the other necessities. Even if the absolute worst scenario related to this comes to fruition, then there are still so many things for me to be thankful for. God has a plan for me, for us and everything we are going through is exactly what he has deemed is correct and perfect for us even though right now it feels like the worst hell that we could imagine. Jason and I are strong and we will get through this. Two weeks seems like a very long time right now, but in the scheme of things, it’s just a blip on the radar. One way or another, this “should” all be over in two weeks. Two weeks…. that’s all! Counting down the hours and minutes as each day that passes!

Monday, August 9, 2010

Hope!

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. ~ Roman 15:13

Friday, August 6, 2010

Meet Brutis!

We have a bit of a role reversal in our house in doggie land. We have Toby, our 7 lb yorkie that you would expect to be our lap dog and then we have Brutis, which is our 45lb Blue Lacy that you would expect would be our independent, self reliant, active puppy dog. Instead we have Toby that goes in and out the doggie door at least 500 times during the day, loves his scratch time but isnt a cuddler and PREFERS to sleep at the end of the bed far away from us. Then you have Brutis, who would rather lye on our bed ALL day long and insists that not only does he have to sleep very close to Jason and I but also has to be sleeping ON one of us. Most mornings Jason and I wake up and Brutis is wedged in between us, laying vertically as if he is a human, with his head on the pillow right up on Jason or I’s shoulder. The other morning I went in the bedroom and Brutis had his head wedged completely underneath Jason’s chin and then this morning I woke up and my back was killing me because I spent all night sleeping on my back. Brutis had draped his entire body over me during the night so it was impossible for me to move after that. Now, it all works out fine right now because I have a small belly; however Brutis will likely get booted from the bed when my belly starts to invade the space that he usually sleeps. He is such a sweet guy though that I can’t bear to kick him out until it’s completely necessary. Blogworld, meet Brutis, our 45lb lap dog!!

Thursday, August 5, 2010

18 Weeks!!

How Far Along? 18weeks

Size of baby: The size of a sweet potato

Total Weight Gain/Loss: + 1 lbs

Maternity Clothes: My non-maternity pants no longer fit, but all my non-maternity tops are still fine.

Gender: BOY!

Movement: Nope, nothing yet!

What I miss: Nothing at this point, Im loving being pregnant! But I will say that this might be changing soon as my feet are getting a bit more difficult to get to! LOL!

Sleep: Sleep VERY WELL!

Symptoms: I am getting up in the middle of the night to go to the bathroom at least once!

What I am looking forward to: Drs appointment on Monday, August 9th- I'll get to see baby Ethan one more time!

Baby Ramey’s Progress

You're gaining weight and your baby is too, weighing over 5 ounces (.14 kg), and measuring more than 5 inches (13 cm) in length. What an adorable pair you are! Baby's rapid growth period is beginning to slow down, but his or her facial features are starting to form. Your baby can now yawn, frown, smile, and make other facial expressions. Taste buds have developed, and your baby can sense bitter from sweet, and swallowing reflexes are now present. He or she may even start getting the hiccups! Because baby's eyes are still developing, they're very sensitive. If a light is shined onto your belly, your baby might flinch and try to cover his or her face.

Your Body This Week

Now that your uterus is about the size of a cantaloupe, you may begin to experience backaches. A shift in your center of gravity (upward and outward), along with increased hormone production, can cause some joints to loosen. As a result, you're more prone to twisting your ankles or wrists, so take care when exercising. Your heart is working about 50% harder now, so don't be surprised if you feel a bit out of breath.

Tuesday, August 3, 2010

London!!!

Oh and there was a bit of news that I forgot all about… I’m going to London for work in September. I’m leaving September 18th and I will be gone a week. I’ll be 24-25 weeks pregnant but my OB is ok with me traveling at that point. I’ve never been so I’m very excited about the trip.

Major Catch Up Post!

Whew! So much has happened since I last blogged, I don’t even know where to start. We went on vacation to Crystal Beach and although the weather didn’t cooperate with us 100% of the time we still had a great time. We walked on the beach, sunned on the beach, went to the Big Store (pretty much the only store on the island), cooked yummy meals, ate out once, slept in, took naps. It was awesome. We loved our beach house and would love to return again with another couple or two. It’s a perfect set up for that.



I also became an Aunt since I’ve last blogged, which is very exciting. Baby Bryson was born on July 29, 2010 at 5:07pm and he weighed 8lbs 8oz and is 21 inches long. He is super cute and I can’t wait to spend more time with him. Everybody says he looks like my brother. Right now he just looks like a baby to me. LOL!


And regarding OUR baby, since I have last blogged we have received confirmation that he is a boy. Baby Ethan seemed to be doing well and had a great heartbeat around 146bpm. We are super excited to be having a little boy. Now all the baby shopping can begin! I really haven’t bought much. Jason and I did pick out and buy our stroller system yesterday, but I haven’t bought anything else. No clothes, no blankets, no burp cloths, nothing! It’s surprising for the people that know me the best. I think Jason just wanted to get the stroller system purchase out of the way so that he didn’t have to hear about it anymore from me! LOL! He is a smart man then because he saved himself at least 100 conversations between now and December if we had waited that long to purchase it. Hehe! We also got the swing we wanted! I found a great deal on the one that we wanted and so Ethan’s Grandma Jo (Jason’s mom) graciously gifted that to us! We are so thankful and I just love it! Of course Ally and I had to put it together as soon as we got it!! I included pictures below of both the big items we have gotten lately! In other baby news, or should I say Baby Mama news, I feel like Im carrying around fat suit on my body all of a sudden. You’ll have to wait until Thursday for that though. Ill post my 18wk update and belly picture then. Whew! I think we’re all caught up now!!!