Tuesday, January 18, 2011

You have put Gladness in my Heart- Psalm 4:7

God is great! Our appointment was a comfort to Andy and I. Every time we go to appointment we are scared of what we might be told about Jackson. This appointment went as good as it could go. No new information or conditions just two we were already aware of. We met with our Maternal Fetal Medicine Specialist, Dr Williams. We had an ultrasound to do all the typical measurements. The Ultrasound Tech started the ultrasound. I had been waiting for them to call me back so Andy hurried to the bathroom before they took us back. They called me right after he left. I asked if we could wait on him but she said we should start. It seemed like an eternity before he returned. He looked concern like he had missed something, but we really weren't looking at anything we could make out or the tech could even tell us. During the ultrasound I started feeling really weird, I looked over at Andy and said I'm feeling really hot. The Ultrasound tech overheard me and told me to hurry up and sit up. I was going to pass out. She said when pregnant women lay on there backs it cuts off the oxygen to there brain and can pass out. I thought it was just my nerves. I always heard not to lie on your back, but thought it was just uncomfortable for pregnant women. I didn't know this would happen. Well they got me situated and placed me on my side and resumed the ultrasound. Jackson was head down and we couldn’t really get a good look at him. That is Andy and I couldn’t get a good look at him because everything else the tech was looking at wasn't recognizable to us.  She finished and Dr. Williams came in to explain any and all findings. She said he is looking good no new abnormalities or concerns. She said he is a little small. He is measuring in the 20% head measurement and 5% for his abdomen (which given the situation of the ompalocele isn’t uncommon) She said his liver is still down, not in either the omphalocele or his chest cavity. This statement was what I was looking and praying for. Although, this could change anytime. The hernia allows organs to move in and out, but on both of our checkups it was down. This is a huge milestone and such a blessing for Jackson. Another concern of mine was to hear if he had Hydrops, which is where fluid is in the abdomen or chest cavity and can create problems for the baby. The Doctor said there was no sign of Hydrops at this time. This is another issue that could change at anytime. But at this point I'm still shouting Hallelujah and Thanks to our wonderful God! After she told us the good news .I was relieved and ready to start my questions. I think Andy was too. Most of the time I’m too shocked at our appointments and can’t seem to talk. 

Here where some of our questions and her answers:

Are you still saying we should deliver natural?
Yes as long as the Omphalocele doesn’t get any bigger and if the liver stays out of the Ompalocele.

When will an induction date be set? 
At 37 weeks. March 25th and depending on his size. If he looks like he still needs some time to grow we will go at 38 weeks.

Will an MRI be done to determine liver position or lung development?
At this point no, the liver is in the abdomen and lung development cannot be determined from MRI. It just gives us an idea if they are developing because of the placement of the organs. 

Can another amniocentesis be done to determine lung development?
From the amniocentesis we can determine if they are developed but not how much, so it really wouldn't give us any new information. She said the only way to determine his lung development is to wait until he is here. Nothing other than check ups will be done before he gets here.

Who will deliver him? 
There are a group of four OBGYNS in her practice and whoever is available will deliver him. Of course they will be aware of his condition.

How often will we start coming up for checkups and ultrasounds?
Every 4 weeks. So only 2 more visits until he is here. I will continue my OB visits with my Doctor here in Evansville.

After our questions we meet with Dr. Williams head RN nurse and were told we would take a tour of the hospital, Riley and the NICU. Then meet our Pediatric Surgeon (This doctor will be involved to help determine the need for ECMO, complete the procedure for starting/ stopping the baby on ECMO if necessary and to conduct the surgery to repair the hernia and Omphalocele. ECMO- A machine that bypasses the lungs and performs gas exchange in the infant's blood until damage to his lungs or heart can heal or be repaired.) Everyone that we met is great and so kind. I would hope that would come along with the job but you never know what to expect. 

      We started our tour and the nurse was also trying to schedule us to see our Neonatologist (These doctors will be very involved in the day to day decisions once the baby is born. Their responsibility is to implement  the protocols for ventilation and assess and respond to any other issue that might arise while your baby is stabilizing and hopefully getting better) for an appointment, but she was in a delivery so we decided we would meet with her in 4 weeks instead.
     The Nurse showed us the Labor and Delivery room and explained once Jackson is born he will be taken immediately across the hall from the room to be stabilized in what’s called the Island. She said Andy will be able to go in the room and keep me updated on Jackson’s progress. She said family is welcome to stand outside of the room but are not allowed in. The room was very small. I'm afraid even if they did let everyone in it wouldn’t hold everyone! I’m sure they’d try, though. She said once he is stabilized they would put in an incubator box and wheel him in my room before they took him to the NICU at Riley. I was relieved to here this. I was afraid I wouldn't be able to see him until I was up and about . I did ask her if getting an epidural will hurt his lungs at all. She said if anything they would encourage it so I would be relaxed and therefore he wouldn't have any added stress once he is delivered. This too was pleasing to hear. I was willing to go au natural but knew I would be a lot to handle along with all the emotions that I will be feeling that day. I did ask her the golden question my mom was waiting on “How many people can be in the delivery room?" She said three. I knew my mom would be relieved to hear this. She said once I deliver him they will keep me for about three hours to make sure I was OK but I would be taken to a recovery room over at Riley during this time, so Andy wouldn't have to be going back and forth from IU Med to Riley which is about a seven minute walk.
The nurse showed us all the waiting rooms and small nursing rooms that would be available. She did say the hospital provides a pump and there multiple units to pump in and refrigeration will be provided to store the milk in. She said I would just need to bring attachments to go with the machine. We continued the tour of the hospital then started to headed over to Riley, on the way we ran into our Neonatologist, whom had just come out of a delivery. She removed her gloves, shook our hands, and introduced herself. I was a good feeling to meet her and to know she took the time out to say hello and she would be the one in charge of Jackson’s everyday care!

        Everything is enclosed so no walking outside just a straight route to Riley. She showed us around the NICU. There are four different areas called modules for the NICU babies and all equally important. They don’t split the babies up by severity of their condition just whatever bed is available at the time. There are about eight beds in each.  At the time it looked as if all or most had a little one in it. I was surprised there were so many babies in there. The nurses where very nice and we were told he will have a one on one nurse each shift so they would be familiar with him and his condition. The nurse said Jackson will get to know them well and they will treat him as their own. This was good to hear. I wasn't emotional like I thought I would be, but I think it helped we had a good appointment to start off the day. One thing that did make me feel overwhelmed was she said Jackson will know me as his mom and it has been proven when the mother of the baby is around the baby does much better, they are calmer, there skin will pink up, and they show signs of contentment. I get overwhelmed just thinking about that comment. I can’t wait to see him recognize me and feel comforted.  I feel weird sometimes because some of the saddest things and little things that usual mothers don't think about it what I cherish the most. I just want to be given the opportunity to make my sons day go better by being there by his side. The nurse said I am welcome in there anytime. I had made a comment about wanting to be in there all the time, and she said you too will need your rest and sanity. That will be hard for me to actually do, but hopefully I will find a good balance between the two. We finished our tour and were shown a small Ronald McDonald house that was in Riley. She said it is a first come first serve basis for the parents and grandparents of the patient.  They can house 6 families for the day, giving us an opportunity to rest, shower, or get some laundry done. A lot of time they provide meals if someone has donated food for the day. The cost is $10.00 a day at this location and at the actually Ronald Mc Donald house. I was very nice and clean and I was comforted to know I could stay in the hospital and get some rest if needed.  The Ronald Mc Donald house isn’t too far from the hospitals and can house 52 families a day but this is also on a first come first serve basis. So we would have to call down everyday to see if something was available.  We do have the ability to stay with family while in the hospital and I am very grateful for the offer. I just think for the first day, week, or however long, I might want to be within walking distance of my son incase something were to happen. At this point everything is uncertain: How I will feel, what I will do. How Jackson will be, If he will survive or not, but one thing I am reassured is God will always be will us and show us what we should do. I will place all my hope in him and know he has a great plan for our family! 

To be continued .........I have more about the Surgeon visit but have to be on my way back to work! Sorry for the typos. I haven't had anytime to proof read it, but will hopefully continue soon.

Thanks for all your support and prayers. We love you all- Brandi, Andy, and Jackson!

26 weeks 

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