Thursday's appointment and Pictures!!!!!

Thursday we met with Dr. Jenkins at The Kirklin Clinic. We thought we were going to see a geneticist to go over the findings from the amniocentesis—but when we got there we were escorted to the ultrasound room where we met Dr. Jenkins for the first time. She told us that the final report from the amniocentesis showed everything “normal”—so there wasn’t anything to talk about with regards to genetic abnormalities—praise God! So we had another pretty extensive ultrasound. First, Dr. Jenkins’ nurse did an ultrasound and measured Baby Rich’s bones, head, abdomen, etc. It was fun getting to see him again—he’s grown so much! We got to see him moving around and covering his face with his hands—I would say he might be shy, but as you will see from the pictures, he is more of an exhibitionist! We also got to see a few 4-D pictures—Rusty is convinced Baby Rich looks just like him as a baby!
After the “fun” Dr. Jenkins did another ultrasound examining his organs. She measured a lot of different parts and then focused on the heart trying to locate all the important parts. From her findings, she says the heart looks normal, but that ultrasounds are limiting and there are some things you just can’t see until after the baby is born. She showed us where the lungs were in relation to the heart and stomach. The left lung is still on the left but behind the stomach—it was nearly impossible for her to see it and she was unable to measure. The right lung is pushed all the way to the right and behind the heart. She was able to measure what she could see and for those who know about “head to lung ratio”—it wasn’t an encouraging number—but that can change and we’ve been told over and over not to let that discourage us because it is not an accurate indication of how our baby will do once he is born.
On Monday, we are going to Shands to meet Dr. Kays where his colleague Dr. Richards (who specializes in ultrasounds for CDH babies) will examine Baby Rich via ultrasound and we will have another head to lung ratio—it will be nice to have an expert second opinion (not to discredit Dr. Jenkins, she readily admitted that she doesn’t know much about LHR and that ultrasounds themselves are limiting in what you can see at any given time).
We have been reading Baby Rich stories and he got his first i-pod last night as a gift from his daddy. So now, when I am sitting down I have headphones on my tummy playing lots of different music for him—so far I can’t detect any sort of music preference! As always, Rusty and I thank you for your prayers for our baby! And as promised...the name is coming very soon. Love to all!

Nothing big to report...

Today I had my regular appointment with my OB--no ultrasounds, just the doppler to listen to Baby Rich's heart--a nice, strong 150/bpm. Everything seems fine with me--I'm measuring right on target! Baby Rich is still squirming around a good bit--but he is very tricky because every time Rusty puts his hand on my tummy to feel, he stops moving--I think it is pretty funny! Tonight I start a prenatal water aerobics class with a close friend who is due just 2 weeks before me--it should be a lot of fun! Rusty and I are making our final decisions on Baby Rich's name--we plan on making the big announcement sometime very soon. Tomorrow I have an appointment for another Level II Ultrasound--so hopefully I can post some pictures of our precious little boy!!!! Thank you for your continued support--it means more to us than you can know!

Happy Monday!!!

Great news!!!!—we have a confirmed appointment at Shands for July 31st! I got the call just as I was walking into my consultation with the pediatric surgeon at UAB/Children’s. The consultation went well—I was armed with about sixty (60) questions. I let the doctor speak first—listening to everything he had to tell us. It wasn’t specific to our baby (although he had looked over our records) but more of a consult on CDH itself and what happens when the baby is born and general information on the surgery and stuff like that. He answered most of my questions—the ones that pertained to pediatrics—and then some of my prenatal questions. He was very nice and seems more than capable. After our consultation we were given a tour of the NICU and saw a CDH baby who had just had her hernia surgery. We all commented on how big and healthy she looked! She wasn’t on ECMO (there weren’t any babies on ECMO at that time) although we did get to see an ECMO machine in person—very large machine, a little intimidating.
Seeing everything in person, it is hard to imagine “living” at the hospital for a few months. It sort of made everything seem very real. All in all, the consultation is our first big step in determining the best place for me to deliver. I do feel confident that our baby will be in good hands if I “have to” deliver here (like if I went into labor early and stuff like that). We do feel like we have a grasp on how it could possibly be here and so we are anxious to visit Shands and compare the two. I have heard a lot of people say that we’ll just have a feeling about where the “right” place is for us—so we are praying that will be the case.
My next appointment is my regular OB appointment on July 25th—so there is really nothing exciting going on until then—except working on a name for Baby Rich!!!! We go back to the Kirklin Clinic next Thursday for another ultrasound and possibly to meet with the geneticist about our amniocentesis results (the more in depth ones). Then off to Shands the following Tuesday. I do feel that there is now some sort of order to all this—at least I can look at my calendar now and see progress! Thank you for your continued prayers and support. Feel free to post any name suggestions!

Our Busy Little Boy

Baby Rich has been very busy doing something inside me lately--he is constantly moving around with the occasional karate kick/chop. He seems to be pretty active when I go to sleep and when I wake up. Tiffany (our dog) has been cuddling up to my tummy--we are convinced she has super-hero powers and is communicating with Baby Rich somehow!
Anita, Dr. Kays' assistant, emailed me this afternoon. She said she is waiting to hear from Dr. Richard's office (the ultrasound doctor)to be able to confirm an appointment for the last week in July. She requested that I have my medical history faxed over in the mean time. I sent everything over this afternoon. Although Anita is off on Fridays, she said she would be calling into her office to check if Dr. Richard's office had confirmed anything yet--so hopefully we will hear something before the weekend. It sure is nice to know that the "ball seems to be rolling" and we just might get the head to lung ratio in time after all!
I've been fighting a cold all week but I think the worst is over now so hopefully I'll be completely well by the weekend. Thank you for your continued prayers and support.

"Nothing in all creation is hidden from God's sight" Hebrews 4:13

A close friend sent this verse to me in an email after she heard the news about our baby boy. As it pertains to Baby Rich, it is a great comfort in knowing that God knows the severity of the hernia and every other little issue that goes along with it. This is why we ask that you pray for the doctors, surgeons, nurses, and everyone who will come in contact with our little boy—that they may have wisdom in knowing what is wrong and discernment in knowing how to handle the problems.

I tell you this because today—like every other Monday—was busy with phone calls and emails but at the end of the day I feel like nothing was really accomplished. I didn’t confirm an appointment with Dr. Kays—although I spoke to his assistant who is going to try and work us in but we might not be able to see him until August. This is not good because for them to do the exam that gives us a head-to-lung ratio (which is important in determining the amount of lung tissue that has developed already) it needs to be between 23 and 26 weeks gestation. Well, I’ll be 26 weeks on August 2—so unless they can work me in beforehand, we won’t have that extra bit of information—but thankfully, "nothing in all creation is hidden from God's sight...”

Later I spoke with Pat—she is sort of like my “case manager”—not really, but she is definitely my “go to” person for making appointments with UAB/Childrens. I had called her because the assistant for my pediatric surgeon never called me on Friday to confirm an appointment and when I tried to reach her they said she “would be out for a while.” That wasn’t very comforting, so I telephoned Pat and she got right on things. She called back like a nano-second later and said she had worked things out and that I would have a consultation next Monday but with a different pediatric surgeon. First let me say—I have heard great things about all of the surgeons—but I was disappointed because the original doctor that I had happened to be the one person Dr. Kays named as being a great doctor for my baby should I stay in Birmingham. As I spoke to a friend this afternoon, it occurred to me--"nothing in all creation is hidden from God's sight”—nothing is hidden—including doctors’ schedules. This doesn’t mean that I am not going to try and get that original doctor again—I’ll see what “strings” I can find to pull (ha! If you work at Children’s or are a doctor—I’ll be calling you for this favor!)—but if at the end of the day I can’t get him, I’ll feel confident I did what I could and just trust.

Peaceful Saturday

Well, believe it or not-- a lot has happened in the last day or so. Thursday night at around 8pm Dr. Kays from Shands in Gainesville, Florida called me at home. Funny thing is, I felt a little "star-struck" because we have been reading about how talented this man is and how he has the highest survival rate in the country (possibly the world) for treating CDH babies. We had come across information on Shands when we found stuff on CHOP and knew it was a top place for the treatment of CDH babies--but as the days have gone on we've had some very important doctors outside of Birmingham telling us that we MUST get in touch with Dr. Kays if we want our baby to survive and live a normal life. I had called his office earlier this week so I was hoping someone would call me to set up a consultation. He was very up front about his "method"--telling me briefly in our 40 minute conversation how he could/would help us and our baby boy. He is very down to earth--not a salesman at all and I felt very comfortable talking to him. When I told him about my upcoming trip to CHOP he was supportive, as he knows I am trying to do everything I can to save my baby. I asked about the Fetal MRI and he said they used to use it at Shands but they don't do it anymore because they can determine the same information from an ultrasound--if you have the right person reading the ultrasound. I never felt pressured by him during the entire conversation--it was almost as if I were speaking with a close family friend--I could tell he really just wants what is best for my baby.
After the phone call I felt unsure for the first time about our decision to go to CHOP for the consultation. I was concerned that it was going to be superfluous in nature and not as useful as i had anticipated. When Rusty got home I told him of the phone call and my feelings on CHOP--he agreed. We decided to sleep on it. Yesterday morning I received a phone call at 8am from Beth at CHOP calling to go over the itinerary for the 10 hour consultation this coming Tuesday. I told her that I was going to have to postpone our meeting (she wasn't thrilled) and that I would call her back next week. I still felt a little uneasy about doing that--and I don't think it would "hurt" to go for the consultation--but I guess I do think it possibly could added to my anxiety about the baby all together. I had asked another CDH baby's mom about why she didn't get a Fetal MRI and she said it would have just given her more stuff to worry about when everyone readily admits that it is virtually impossible to know how well a baby will do until he is born--regardless of the severity of the CDH. Later that morning Rusty received an email from a family friend who happens to be a thoracic surgeon who has worked with Dr. Kays and has also performed the procedure to repair CDH babies several times--he insisted that Dr. Kays is more than an incredible surgeon, but his treatment for the babies before and after is unmatched and we would be making a huge mistake not going to him. Needless to say, we felt better about our decision to postpone CHOP and I called Shands several times to set up an appointment--hopefully we will hear something on Monday.
Today (Saturday) I feel even better about our decision and I thank God for giving me a peace about it. Rusty and I went out for breakfast this morning while our house was being shown (we took our little dog Tiffany) and sat outside watching the rain and eating bagel breakfast sandwiches. We were surprised by a phone call from Dr. Owen, the man who did my amniocentesis. He said he had just been paged with my results and knew I'd want to hear them immediately--everything came back normal! Keep in mind these are the preliminary results that just check for the top three chromosomal issues: Trisomy 21 (Downs Syndrome), Trisomy 18 and Trisomy 13. We still have to wait for the rest of the test results to be ready in a few weeks--but knowing that Baby Rich only has to deal with the complications of CDH makes things a lot easier--and his chances for survival a lot better.
So, all in all--we feel victorious this weekend! We spoke with the famous Dr. Kays, we had a doctor call with GOOD test results on a Saturday and we have a peace about things right now. We thank God for this gift--and for the rain!

Wake-Up Call

Around 7:00 AM this morning Pat from The Kirklin Clinic called me to say that she was able to squeeze me in for an amniocentesis at 12:40 pm today. This was good news because we'll likely have the preliminary information regarding chromosomal issues before I go to CHOP on Tuesday. As for the appointment--I was glad I didn't have much time to stress out about it--it was awkward and a bit uncomfortable--but it is over now! The doctor was really nice--the procedure was guided by the ultrasound and so I got to see Baby Rich again--he looked so sweet! AND we got to see confirmation that he is indeed a boy (we didn't see it last time!). He's been moving around a lot today since the procedure--but he's probably just off schedule since the phone woke us up at 7:00 AM!!!
Rusty and I want to thank you for all of the emails, phone calls, sweet notes that you've sent our way--and of course for the prayers!

Appointment at CHOP

We've now confirmed our appointment with CHOP for next Tuesday. We are looking forward to the fetal MRI and hope it will tell us a lot more about the severity of our baby's hernia. Because ultrasounds are limiting, our doctor here was unable to tell us if the liver was "up" or "down" and the fetal MRI will be able to do just that. I will also be having an amniocentesis to check for chromosomal issues. Most likely, this has nothing to do with a chromosomal issue and it is something that just "happened."
Going to CHOP is primarily for evaluation purposes at this point--we hope that after gathering all of the information we will decide that UAB/Children's is the best place for us to deliver and take care of Baby Rich. It is hard to imagine being so far from our family and friends on such an exciting day. Although UAB/Children's doesn't see quite as many CDH babies as other hospitals like CHOP and SHANDS, Rusty and I have been following the progress of a little girl named Claire who was born here in Birmingham just over 3 weeks ago and she has already gone home with her parents--so we know the our doctors here are quite capable! We are hopeful to confirm an appointment at SHANDS in Gainesville, FL sometime very soon. After the "out of town" meetings, we will meet with the pediatric surgeon(s) at Children's here in Birmingham and hopefully then be able to make our decision for where to have our baby.
As for Baby Rich--he is VERY active lately. His karate kicks are getting harder and harder each day! I'm curious to see how he reacts to the fireworks tonight! Happy 4th of July!!!!

Baby Boy Rich

Dear Family & Friends,
Many of you may have heard by now that we are having a precious baby boy in early November. We are so excited about this gift of life—nothing can dampen the excitement and gratefulness that we feel from knowing that God has given us this baby to take care of and love forever. Unfortunately, our 20 week ultrasound revealed a very scary situation and today (a week later) we have confirmed that our baby boy is very sick. He has CDH (Congenital Diaphragmatic Hernia) which is a very serious situation for babies—also, very rare. Our baby is happy and otherwise completely healthy swimming around inside me right now—the serious part comes when I deliver. In short, CDH is a hole in the diaphragm which allows the stomach and intestines (and sometimes other organs) to float up into the heart cavity, thus pushing the heart and lungs over. Because the heart and lungs have been “squished” they haven’t had a chance to develop normally/completely which makes it difficult and sometimes near impossible for the baby to breathe once the umbilical cord is clamped. A great way to learn about this is through the video provided by CHOP (Children’s of Philidelphia) http://www.chop.edu/fetalsurgery/everything_in_place/index.html This video is very thorough and doesn’t really sugar coat anything. Being from Birmingham, I have always touted UAB for being one of the best medical schools in the country—unfortunately, CDH is not something they specialize in and Rusty and I will be making a trip to CHOP in the very near future (perhaps by Monday) and possibly to Gainesville, FL to find the absolute best care for our baby—but who knows, we may still end up at UAB.As our family and friends, Rusty and I ask that you will pray for our baby boy (no, we don’t know a name yet) and pray for the doctors, surgeons and nurses who will be helping us take care of him. We know we have a long road ahead of us—we thank you for your support and prayers. I started this blog so you can keep updated on what is going on from now until we bring our baby home with us! If you have any questions—we are happy to answer anything, so please ask!
Much Love,
Liz and Rusty