The last few weeks have been a roller coaster! We packed up and came to Augusta on August 23 for our appointment on the 24th as I wrote about in the last post. And since then...I have not been home. We left Augusta after receiving the news of a new heart defect and drove to Covington to stay with some dear friends. We stayed with Denise for 2 nights before heading over to her parents house...a place that would soon become our home for the next week. Dr. Devoe told us he wanted to follow up with us on Monday August 29 and that he would like for us to stay in the area. We smiled and said ok and that we would see him Monday. So, on Monday we returned from Covington (about 120 miles from Augusta) and they asked if we were here to stay and we smiled and said we were close! It was so hard to imagine staying in Augusta that soon and having to pay for a hotel and food each day. Our wonderful friends (more like family to us) Regina and Larry Grant opened their house up to us and allowed us to make ourselves at home. We stayed with Denise their daughter for 2 nights and on Thursday night (Aug. 25) we moved into the Grants house. They had been out of town during the week and came home on the weekends. That weekend we wanted to be close to Conyers and Covington because John's best friend Kevin was getting married and John was the best man in the wedding. The Grants watched Kinsley for me Saturday night and I went to the wedding. It was nice to get out of the house and not just be driving to a dr. appointment. Sunday came around and Kinsley had to go home. We knew that she would be back Friday and could spend the long Labor Day weekend with us. I was ok with that started to find peace that we were stuck so far away from home. In a way Covington is like home because John and I lived there for 5 years before moving to Morgan.
Moving on Friday. I got a call from my dad around lunch that there would be a change of plans this afternoon and that Kinsley would not be coming up today. He had to pick her up from school around 11 am because she was throwing up. I felt like my world was crashing down because I needed her to come see me. She ended up staying with my mom Friday and Saturday night and never got sick again. On Sunday my mom met John halfway to bring Kinsley to us for the night. I knew that it would pass quickly and that I had to make the most of it. On Monday I woke up dreading the next few hours because I knew Kinsley would have to go home. We went to Chuck E. Cheese because we had promised Kinsley we would take her. As we were there, I sat in the booth the entire time because I felt sick to my stomach and my feet/ankles were really swelling. While I was there, I made the decision that Kinsley would go home in the morning and just return to school on Wednesday. Miss Regina stayed in town so she could take Kinsley home on Tuesday or to meet my dad halfway. Tuesday John and I said bye to Kinsley and headed to Augusta around 7 am Tuesday morning. My appointment was at 9:30 for my nst/bpp monitoring. When I sat down in the chair to be hooked up to monitors, I felt my contractions getting stronger and closer together. After about 15 minutes, my nurse commented on the contractions and said that they were about a minute to a minute and a half apart. She said that we were going to skip the bpp monitoring (ultrasound) because Dr. Devoe wanted to see if my cervix was changing. Dr. Danneman, a resident Dr., checked me and I was at 3 cm. They told me that we were on our way to L&D to be monitored. I got hooked up to all of the monitors and got an IV soon after. About an hour later one of the resident drs., Dr. Willians, came in to check me. She said I was at 4 cm and I told her that the pain was getting pretty intense. She kept me on fluids and monitors and said she would be back. In the meantime we met with the anesthesiologist and discussed what would happen before and during the c-section. From all of this, Dr. Devoe, Dr. Danneman, and us were under the impression that we would have a baby today. We called our families that started rushing around trying to get ready to come up and called Miss Regina and told her to wait on taking Kinsley. Everyone was on hold and so were we because we had no idea what was going to happen. About 2 hours later, the Dr. came in again and checked me and said I was still at 4cm and that I could go home. WHAT?! Are you serious? I walked into the hospital when I was in labor with Kinsley and was 4 1/2 cm and she was born 5 hours later. What if I left the hospital and went into labor? I was scared to death to leave because i felt like I wouldn't know when to come back. John and I rode around and found a hotel room so we could try to get settled. One HUGE problem though! We had left ALL of our stuff in Covington. That night, Miss Regina, Denise and Kinsley brought us all of our stuff to our hotel. We got to see Kinsley again but this meant that she wouldn't be going home until Wednesday and would miss yet another day of school.
Over the last few weeks, John and I had been looking at trading in my Accord for a van. Yes, I said VAN! John wants a van! I have flashbacks of my childhood and did not want to be a minivan mom. So, we started working with a salesman and he found us a van that we liked, John loved, and we sealed the deal on Wednesday (yesterday). It is a Chrysler Town and Country Touring and is fully loaded. Kinsley is excited about having 2 tv's in the van. I know my niece and nephew, Bella and Luke, will not complaining about riding with me since the van has rear air conditioning. They always complained it was hot in the back seat of my car. So now life continues in Augusta and we are the proud (John is a bit more prouder) owners of a VAN> I said it again!
As we are on hold and bored to tears in Augusta, please keep us in your prayers as we face the next few days. I am really dreading my amnio on Monday if I go that long before going into labor. John and I are stuck in a hotel room and are trying to pass the time without going crazy. I feel like we are living in a dorm room!
I am sorry these posts are so long and detailed but this is the easiest way for me to record what is happening right now so that we can have it to look back on in the years to come.
Trust & Rely In the Power of Prayer!
Thursday, September 8, 2011
Thursday, August 25, 2011
One more hurdle to jump
We made it to Augusta Wednesday morning for our routine visit and ultrasound. We met with one of the doctors to go over all that happened a few weeks ago with our hospital stay before we actually met with Dr. Devoe.
Next, we were called in for ultrasound. The usual sonographer (Natalee) has not been there these last 2 visits. When I walked in and saw that it was Harriett again, my heart sorta sank. She never makes me feel that great about what is going on and asks me questions that I think she should already know the answer to or doesn't need to know. Natalee is very personable and tries to be reassuring with all that is on our plates anyway. Not Harriett. I had this weird feeling last time and even yesterday during ultrasound. It's like I have become gun shy and can't even enjoy looking at this tiny baby on the screen. It's almost like I am running from the situation or that by not looking it is somehow going to get better. Who knows?! I guess it is a desperate attempt at the the thought of things being normal.
In the middle of my ultrasound, she stops and goes to look at the hundreds of other images taken at previous visits. Then she comes back and finally goes to get Dr. Devoe so he can come in and look at the screen. Harriet starts telling him that certain numbers are passed what they consider ok and Dr. Devoe says to her "Summer and I have discussed that his head would continue to get larger and that it was what he expected to see." The next thing he addresses the same way. He says to her that we already knew that his umbilical cord had a special name (because it has only one artery or two or something like that) but I was never told what it could mean. He told us that it happened in about 1% of pregnancies (YES, I SAID 1%) and that it was usually linked with cardiovascular problems and not the hydrocephalus). My heart sank because I knew there was still a third thing he needed to look at on the ultrasound.
At my last visit, Harriet couldn't get the view of the heart she wanted because Tripp's spine was in the way and he was facing down. She asked me last time if we were ever referred to pediatric cardiology and I said no. Dr. Devoe had not seen a reason to send us...until TODAY! Tripp's right side of his heart was significantly larger than his left side. That is all he could tell from his ultrasound and wanted us to meet with the cardiologist today too. But, before we left, Dr. Devoe sent another Dr. in (the same one that took my history earlier) to check my cervix and make sure there was no change. She came in and checked me and said she thought I was still between 1-2 centimeters and only about 50% effaced. Remember Dr. Smurda told us last week that he thought my cervix was thickening back up? And it was. By now we had been here for about 2 hours 10 minutes. The nurse came in and gave us our appointment to meet with cardiology at 1:00. This gave John and I about an hour to eat lunch and get ready for round 2.
After lunch, we met up with Kim (who I forgot to say was with us earlier and has been with us for previous visits) to take us to cardiology. She is a liaison between patients and staff and her title is some sort of coordinator. She only practices nursing in the clinic about once a week. We made it cardiology and met Celeste who did the fetal EKG. She scanned Tripp for about 45 minutes. As she was finishing up, Dr. Luten and Kim came in the room. He said that he had been watching the scan from the other room. He and Celeste started talking in lots of foreign words and then he said I'll translate in English for you. He said first of all, I am Dr. Luten and I am going to be your babies heart Dr. if you like me and will let me! He tried to make us feel at ease but we were both dying to hear what was going on. He said basically he saw 3 things. 1: the right side of the heart was enlarged, 2: the aorta was too narrow in a spot, and 3: there was an extra vein that had grown and was diverting blood the wrong way.
After he explained what all he saw, he said he felt confident that the right side was enlarged and the left side was normal and not just too small. He said that it was good to have one side that was at least the right size. He called the narrowing of the aorta Aortic Coarctation. He said that sometimes this auto corrects in babies at birth and sometimes it doesn't. He also said that many people make it through childhood and do not get diagnosed until they are adults. There are several causes in utero that can make this show up. If the baby is anemic or has high bp then it will show up like it did for us and could possibly correct itself. If not, they will monitor Tripp when he is born and see if he needs to have the one time surgery to fix it. It may not happen immediately because his main concern is placing the shunt and draining the fluid off of Tripp's brain to prevent any possible or further damage neurologically. Or, it could be that they give him medication to keep the aorta open and possibly have surgery later.
Because this is so hard to diagnose in utero, he is glad that Dr. Devoe and Celeste both caught this on ultrasound. He said it often goes undetected because you have to get the perfect view and they both happened to get it. He said about 60-70% of the time they are right about this diagnosis. Because of how hard it is to diagnose, there is still a chance that they are wrong. If they are not wrong then it is safe to say that Tripp has CoA (Coarctation of the Aorta) and this is a heart disease.
This has not been easy news to swallow because we thought for so long that we had one major hurdle to cross and now we have another. I was finally at peace about having a baby with so many undetermined medical concerns and now we add more to the plate. To top things off, we are to stay in or around Augusta until he is born. It's hard to imagine not being able to go home for anything. John went today and has list after list of things to get and he is bringing Kinsley back just for the weekend. She is in school and so I hate her to miss but she is having a very hard time with us being gone. Not to mention I am too!!!
Please keep us in your prayers as we face the many more unknowns and that Kinsley will be able to adjust to us being gone during the week. We may be up her for the next month or more. It's not going to be easy on any of us.
Thanks!!!!!
Next, we were called in for ultrasound. The usual sonographer (Natalee) has not been there these last 2 visits. When I walked in and saw that it was Harriett again, my heart sorta sank. She never makes me feel that great about what is going on and asks me questions that I think she should already know the answer to or doesn't need to know. Natalee is very personable and tries to be reassuring with all that is on our plates anyway. Not Harriett. I had this weird feeling last time and even yesterday during ultrasound. It's like I have become gun shy and can't even enjoy looking at this tiny baby on the screen. It's almost like I am running from the situation or that by not looking it is somehow going to get better. Who knows?! I guess it is a desperate attempt at the the thought of things being normal.
In the middle of my ultrasound, she stops and goes to look at the hundreds of other images taken at previous visits. Then she comes back and finally goes to get Dr. Devoe so he can come in and look at the screen. Harriet starts telling him that certain numbers are passed what they consider ok and Dr. Devoe says to her "Summer and I have discussed that his head would continue to get larger and that it was what he expected to see." The next thing he addresses the same way. He says to her that we already knew that his umbilical cord had a special name (because it has only one artery or two or something like that) but I was never told what it could mean. He told us that it happened in about 1% of pregnancies (YES, I SAID 1%) and that it was usually linked with cardiovascular problems and not the hydrocephalus). My heart sank because I knew there was still a third thing he needed to look at on the ultrasound.
At my last visit, Harriet couldn't get the view of the heart she wanted because Tripp's spine was in the way and he was facing down. She asked me last time if we were ever referred to pediatric cardiology and I said no. Dr. Devoe had not seen a reason to send us...until TODAY! Tripp's right side of his heart was significantly larger than his left side. That is all he could tell from his ultrasound and wanted us to meet with the cardiologist today too. But, before we left, Dr. Devoe sent another Dr. in (the same one that took my history earlier) to check my cervix and make sure there was no change. She came in and checked me and said she thought I was still between 1-2 centimeters and only about 50% effaced. Remember Dr. Smurda told us last week that he thought my cervix was thickening back up? And it was. By now we had been here for about 2 hours 10 minutes. The nurse came in and gave us our appointment to meet with cardiology at 1:00. This gave John and I about an hour to eat lunch and get ready for round 2.
After lunch, we met up with Kim (who I forgot to say was with us earlier and has been with us for previous visits) to take us to cardiology. She is a liaison between patients and staff and her title is some sort of coordinator. She only practices nursing in the clinic about once a week. We made it cardiology and met Celeste who did the fetal EKG. She scanned Tripp for about 45 minutes. As she was finishing up, Dr. Luten and Kim came in the room. He said that he had been watching the scan from the other room. He and Celeste started talking in lots of foreign words and then he said I'll translate in English for you. He said first of all, I am Dr. Luten and I am going to be your babies heart Dr. if you like me and will let me! He tried to make us feel at ease but we were both dying to hear what was going on. He said basically he saw 3 things. 1: the right side of the heart was enlarged, 2: the aorta was too narrow in a spot, and 3: there was an extra vein that had grown and was diverting blood the wrong way.
After he explained what all he saw, he said he felt confident that the right side was enlarged and the left side was normal and not just too small. He said that it was good to have one side that was at least the right size. He called the narrowing of the aorta Aortic Coarctation. He said that sometimes this auto corrects in babies at birth and sometimes it doesn't. He also said that many people make it through childhood and do not get diagnosed until they are adults. There are several causes in utero that can make this show up. If the baby is anemic or has high bp then it will show up like it did for us and could possibly correct itself. If not, they will monitor Tripp when he is born and see if he needs to have the one time surgery to fix it. It may not happen immediately because his main concern is placing the shunt and draining the fluid off of Tripp's brain to prevent any possible or further damage neurologically. Or, it could be that they give him medication to keep the aorta open and possibly have surgery later.
Because this is so hard to diagnose in utero, he is glad that Dr. Devoe and Celeste both caught this on ultrasound. He said it often goes undetected because you have to get the perfect view and they both happened to get it. He said about 60-70% of the time they are right about this diagnosis. Because of how hard it is to diagnose, there is still a chance that they are wrong. If they are not wrong then it is safe to say that Tripp has CoA (Coarctation of the Aorta) and this is a heart disease.
This has not been easy news to swallow because we thought for so long that we had one major hurdle to cross and now we have another. I was finally at peace about having a baby with so many undetermined medical concerns and now we add more to the plate. To top things off, we are to stay in or around Augusta until he is born. It's hard to imagine not being able to go home for anything. John went today and has list after list of things to get and he is bringing Kinsley back just for the weekend. She is in school and so I hate her to miss but she is having a very hard time with us being gone. Not to mention I am too!!!
Please keep us in your prayers as we face the many more unknowns and that Kinsley will be able to adjust to us being gone during the week. We may be up her for the next month or more. It's not going to be easy on any of us.
Thanks!!!!!
Tuesday, August 23, 2011
Here we go again
Please keep us in your prayers as we travel this afternoon and tomorrow to Augusta for our appointment with Dr. Devoe. I hope we get news like we have been receiving all along. We have no idea if we will be told we need to stay and hang out there until he is ready or if we will be allowed to come home for a little while longer. I need a little more time to get some things done! We will keep you posted as soon as we know something.
Summer and John
Summer and John
Thursday, August 18, 2011
No new report
I went to see Dr. Smurda today and there has been no change!!! He said he even thought my cervix had thickened a little. I do not have to see him again until next Thursday after my next Wednesday appointment in Augusta. He said for me to continue on the Procardia. I like that Tripp is once again comfy inside! I am still on bedrest and am having a very hard time with that. It is awful and BORING! If anyone is bored please feel free to come by or call me! I would love it!
Trust & Rely In the Power of Prayer!
Trust & Rely In the Power of Prayer!
Tuesday, August 16, 2011
This is going to be long!
Well, I have a lot to catch all of you up on! Last Wednesday (August 10) I went in for a check-up with Dr. Smurda. Everything was going as planned until the end of my visit. on Monday of that week, I had actually started NST monitoring with Dr. Edwards. His machine did not pick up any contractions but did detect a little irratability. Then, at Bible Study Tuesday night I was havong contractions pretty regularly and Necole Everson told me to mention it to my dr at my appointment the next day. The nurse came in and listened to the baby and Dr. Smurda came in and said ok we will continue on like we are and I will see you in 2 weeks. I mentioned that what Necole had said and he decided to hook me up and then check me to see of anything was going on. The monitor showed irratability and that was it. When he checked me I was dialated to 1 cm and thought I needed to be monitored in labor and delivery. Hea also said you can't go back to work until further notice. I knew this wasn't going to turn out good! So off I go to l & d at 5:15 on Wednesday afternoon. When I got there, I was innediately hhoked up to fetal monitors and contractions were detected and coming on a regular basis. I was started on fluids as well as Brethine for contractions. The nurse also gave me a shot of steroids just in case I did have to go ahead and have Tripp early. In two hours, I was given 2 shots of Brethine (awful feeling) and finally the contractions settled down. After being checked 2 more times in the hospital, my cervix wasn't making any changes so I was released at 10:45 pm and went home. Because of all the fluids, I had to get up to pee about 20 times that night. It was AWFUL!
Moving on to August 11 (Thirsday). Happy Birthday to me! I woke up that morning feeling good and with no contractions. I called to see what time Dr. Smurda wanted to see me that morning as a follow up and the contractions started back. Lynette (the midwife) called back a few minutes later and said that since I was contracting and still had to have my second steroid shot at 7:30 pm at the hospital anyway, that I should just go on in to l&d and be monitored until then. Well, it was almost exactly the same picture from the day before. I was started on an IV and given ashot of Brethine. The shot worked for a bit and contractions came back. Around 3:30, I was moved to trhe fifth floor (antepartum). My nurse checked me and still 1 cm! After my second shot I was told that I would have to spend the night. Around 7:30 the nurse gave me my steroid shot to finish that up. I was only on fluids at this point because my contractions had once again settled back down. My night nurse came in to check on me and asked if I was feeling ok. I told her contractions started back so she put the monitors on me once again. What do you know? Contractions were pretty regular and close together. I was given 20 mg of procardia to help stop them and it did for a bit. After a while, she took the monitors off. Every six hours I was to take these procardia pills so she came in 6 hours later. My bp was too low to have them again so she waited about 2 more hours. My bp came up enough to have the pills again. The night was restless with having to get up and go to the bathroom every 45 minutes but I was monitor free! Everyone thought we would go home the next day.
Friday morning comes around and so do contractions. The nurse put me on the monitor and my contractions were 2-4 minutes apart. I was told to hurry and eat my breakfast and that we would be going downstairs to l&d to be hhoked up to magnesium. Not what I wanted to hear.
Magnesium, antibiotics, fluids, and catheter were started around 10:30 am. I was on mag for the next 24 hours which meant no getting out of bed or doing anything. The first 16 minutes of the mag felt like my arm was stuck in a beehive. It hurt! My rrom temperature was also turned down to 55 degrees and I still felt like the room was 200 degrees. It finally settled down but then my eyes started burning, headache came and vision started to blur. My dosage was decreased to a maintenance drip so I started to get used to it. Usually on mag you can't eat or drink. Dr. Smurda allowed me to eat supper and have some water. I was starving! All night I stayed on mag and the next morning he came in to see me and said he was happy with what he saw and wanted to take me off and put me on procardia only. About 11:30 on Saturday the mag was stopped and by 12:30 the catheter was out!!!!!!! I ate lunch and got to shower. The headache continued to hang around but that was ok compared to what I had been through. Procardia was started again and I was back on the monitors. The procardia was slowed down due to bp but slowly added back into me to get me up to the 20 mg dose because 10 wasn't doing the trick. Dr. Smurda checked me again and i was still between a 1 and 2! I had to spend the night again in L&D and have contininous monotirng throughout the night. On Sunday, Dr. Smurda came in and asked if we were ready to go home. Umm....YES! He had the nurse check me once more and NO CHANGE! I was given a prescription for procardia (2 every 6 hours) and Ambian. Got home and have been on bedrest ever since. I did get to go to Albany on Monday to see Dr. Edwards for my NST/BPP monitoring. I see Dr. Smurda on Thursday and go back to Augusta next Tuesday. Busy week ahead and really hoping Tripp decides to stay put for a while!
It is safe to say that it is a little crazy at my house and the alarm goes off at all hours of the day and night to remember to take the procardia as I should!
Thanks for the calls, visits, texts, gifts, etc that we recieved while all of this was going on. I hate that I had to miss my baby shower on Saturday but it was a sweet surprise to have some of you come to the hospital and visit. It made my day and gave me something to look forward to.
Please keep the prayers coming. I want Tripp to show us and the world that he is a fighter and will be able to live a normal, healthy life! Thanks for everything and I will try to update a little sooner next time!
Moving on to August 11 (Thirsday). Happy Birthday to me! I woke up that morning feeling good and with no contractions. I called to see what time Dr. Smurda wanted to see me that morning as a follow up and the contractions started back. Lynette (the midwife) called back a few minutes later and said that since I was contracting and still had to have my second steroid shot at 7:30 pm at the hospital anyway, that I should just go on in to l&d and be monitored until then. Well, it was almost exactly the same picture from the day before. I was started on an IV and given ashot of Brethine. The shot worked for a bit and contractions came back. Around 3:30, I was moved to trhe fifth floor (antepartum). My nurse checked me and still 1 cm! After my second shot I was told that I would have to spend the night. Around 7:30 the nurse gave me my steroid shot to finish that up. I was only on fluids at this point because my contractions had once again settled back down. My night nurse came in to check on me and asked if I was feeling ok. I told her contractions started back so she put the monitors on me once again. What do you know? Contractions were pretty regular and close together. I was given 20 mg of procardia to help stop them and it did for a bit. After a while, she took the monitors off. Every six hours I was to take these procardia pills so she came in 6 hours later. My bp was too low to have them again so she waited about 2 more hours. My bp came up enough to have the pills again. The night was restless with having to get up and go to the bathroom every 45 minutes but I was monitor free! Everyone thought we would go home the next day.
Friday morning comes around and so do contractions. The nurse put me on the monitor and my contractions were 2-4 minutes apart. I was told to hurry and eat my breakfast and that we would be going downstairs to l&d to be hhoked up to magnesium. Not what I wanted to hear.
Magnesium, antibiotics, fluids, and catheter were started around 10:30 am. I was on mag for the next 24 hours which meant no getting out of bed or doing anything. The first 16 minutes of the mag felt like my arm was stuck in a beehive. It hurt! My rrom temperature was also turned down to 55 degrees and I still felt like the room was 200 degrees. It finally settled down but then my eyes started burning, headache came and vision started to blur. My dosage was decreased to a maintenance drip so I started to get used to it. Usually on mag you can't eat or drink. Dr. Smurda allowed me to eat supper and have some water. I was starving! All night I stayed on mag and the next morning he came in to see me and said he was happy with what he saw and wanted to take me off and put me on procardia only. About 11:30 on Saturday the mag was stopped and by 12:30 the catheter was out!!!!!!! I ate lunch and got to shower. The headache continued to hang around but that was ok compared to what I had been through. Procardia was started again and I was back on the monitors. The procardia was slowed down due to bp but slowly added back into me to get me up to the 20 mg dose because 10 wasn't doing the trick. Dr. Smurda checked me again and i was still between a 1 and 2! I had to spend the night again in L&D and have contininous monotirng throughout the night. On Sunday, Dr. Smurda came in and asked if we were ready to go home. Umm....YES! He had the nurse check me once more and NO CHANGE! I was given a prescription for procardia (2 every 6 hours) and Ambian. Got home and have been on bedrest ever since. I did get to go to Albany on Monday to see Dr. Edwards for my NST/BPP monitoring. I see Dr. Smurda on Thursday and go back to Augusta next Tuesday. Busy week ahead and really hoping Tripp decides to stay put for a while!
It is safe to say that it is a little crazy at my house and the alarm goes off at all hours of the day and night to remember to take the procardia as I should!
Thanks for the calls, visits, texts, gifts, etc that we recieved while all of this was going on. I hate that I had to miss my baby shower on Saturday but it was a sweet surprise to have some of you come to the hospital and visit. It made my day and gave me something to look forward to.
Please keep the prayers coming. I want Tripp to show us and the world that he is a fighter and will be able to live a normal, healthy life! Thanks for everything and I will try to update a little sooner next time!
Sunday, August 7, 2011
babysitter
Please be in prayer for us as we look for someone to take care of Tripp after he is born when it is time for me to return to work. I met with a lady today that is currently working for a family and she isn't very happy where she is. She said she is willing to take a pay cut (as it would be to work for us) because we only have one person for her to keep. I feel like she would be a good fit for us but she is currently still working somewhere else. If any of you know anyone out there that would be able to keeep him in case this didn't work out, please let me know. We are looking at a start date of late October or first of November. Send me a message or email if you need more information.
Thanks!!!!!
Thanks!!!!!
3 visits to start off my week!
This has been a busy month so far and it's only the 7th!!! We started school with our students last Monday (August 1). I had NO idea how hard the first week or even going back to work full time would be. I was exhausted last week. On Thursday and Friday I went home and went straight to bed. I was in so much pain (mostly my back) and just so worn out that going to bed was the only thing I could do! Please pray that I make it a few more weeks with my students before I have to leave them for 8 weeks. I have so much to get done at school before then! My week doesn't look like it is starting off any slower tomorrow. I have to leave work at 12:00 tomorrow to start my BPP monitoring with Dr. Edwards. Here is a description from the internet: The biophysical profile (BPP) test measures the health of the baby during pregnancy. A BPP test may include a nonstress test with electronic fetal heart monitoring and a fetal ultrasound. The BPP measures your baby's heart rate, muscle tone, movement, breathing, and the amount of amniotic fluid around your baby. I have to go once a week and have this done until it's time to have Tripp. On Tuesday I have to go to physical therapy to help with my back. Then, on Wednesday, I go back to Dr. Talley for my 32 week check up and to get my weekly hormone shot. That is three trips to Albany in 3 days!!! Please keep us in your prayers as we get closer to having Tripp and facing the unknowns that lie ahead. We are beginning to get very anxious about what we will be facing and what Tripp will have to possibly go through.
Kinsley is getting too excited about meeting her baby brother. She has to kiss and hug the baby everyday. When she talks to him, he actually starts kicking and moving even more! She starts back to dance on Thursday so that is one more thing to add to my to do list!
I have had several people ask me about when Tripp will be born. I am not sure. I go back to Augusta August 24 for my 34 week visit and hopefully we will circle a date to try and have the c-section. When we return at the 37 week visit, I will have to do another amnio and that will determine the exact delivery date. I hope the test will show the lungs are mature enough and that we can go ahead and have him the next day. I am so ready to meet him and let the doctors start "fixing" him right up. Thanks to everyone for following our blog and our story. I can't believe that the first part of our "Tripp" is just about over. Hopefully this part will be the hardest part and the road will be get much smoother once he gets here!
I'll update after my next few visits and let everyone know what the doctors say.
I have had several people ask me for my address and I can't remember everyone, so here it is.
John and Summer Hill
PO Box 272
Morgan, GA 39866
Please keep the prayers coming!
Trust & Rely In the Power of Prayer!
Kinsley is getting too excited about meeting her baby brother. She has to kiss and hug the baby everyday. When she talks to him, he actually starts kicking and moving even more! She starts back to dance on Thursday so that is one more thing to add to my to do list!
I have had several people ask me about when Tripp will be born. I am not sure. I go back to Augusta August 24 for my 34 week visit and hopefully we will circle a date to try and have the c-section. When we return at the 37 week visit, I will have to do another amnio and that will determine the exact delivery date. I hope the test will show the lungs are mature enough and that we can go ahead and have him the next day. I am so ready to meet him and let the doctors start "fixing" him right up. Thanks to everyone for following our blog and our story. I can't believe that the first part of our "Tripp" is just about over. Hopefully this part will be the hardest part and the road will be get much smoother once he gets here!
I'll update after my next few visits and let everyone know what the doctors say.
I have had several people ask me for my address and I can't remember everyone, so here it is.
John and Summer Hill
PO Box 272
Morgan, GA 39866
Please keep the prayers coming!
Trust & Rely In the Power of Prayer!
Friday, July 29, 2011
Another day, another dr.visit
First of all, I would like to say thank you for the continued prayers. I do not think we would make it day to day without them.
We went to Augusta on Monday to meet with Dr. Devoe and take a look at how things were going. The forst thing that we do at each visit is ultrasound. We usually spend about 45 minutes in there and they look and take about 100 pictures. It's has been fun the last couple of times because we have gotten some great 3d shots of Tripp's face. This time he wasn't cooperating so much. Tripp is still in breech position and for that visit he was face down. Natalee is usually our sonographer but she was out on leave so we met Harriet and a medical student. Harriet was not as warm and personable as Natalee. Since she was new to us and us to her, she felt like she needed to get very indepth pictures of his heart. She tried for about 25 minutes and then decided it wasn't going to work. Since he was face down, she kept getting shots of the spine and could not measure the four chambers to ensure that they were symetrical. At this point in my pregnancy they wanted to measure to make sure that Tripp wpould not be born ASD. Dr. Devoe came in with his 2 medical students and explained to Harriet that he wasn't concerned because the heart looked great at the last 2 visits. We are praying that he was right and that a trip to cardiology for further testing and evaluation will not be necessary. I am really getting worn out and extremely tired of traveling and drs. appointments.
His ventricles were more enlarged at this visit but that is what Dr. Devoe expects to happen at each visit. The ultrasound and measuring of my belly both agreed that Tripp was 30 weeks but on the ultrasound his head was measuring closer to 37 weeks. Dr. Devoe has said all along that we would most like be candidtaes for a c-section and he confirmed it this time. He said that babies will usually tell you how they need to be born. Since Tripp is in breech position (Dr. Devoe thinks he will probably stay this way due to the lack of space to turn around) he will have to be delivered by c-section. He also said that he doesn't want to put the pressure on me and the birth canal or Tripp's head. We will go back August 24 for my 34 week check up and will hopefully know more of what will happen at week 37. At week 37 when we return to Augusta, we will be there to stay. Dr. Devoe will wait until then to do the amnio to check for lung maturity and if we are given the green light Tripp will be born the next day. If not, then I will recieve steroid shots and wait a couple of days and then have the c-section. I have lots to do between now and then!
We were also told that I would have to have BPP monitoring once a week beginning at 32 weeks with Dr. Edwards in Albany. So now in addition to going to Dr. Devoe, physical therapy, Dr. Talley/Smurda, now I have to go weekely to Dr. Edwards and be monitored! I am so tired of burning up the road every day! I will see Dr. Smurda or Talley at 32 weeks also and they will begin checking me to make sure that I am not dialating. I have been having more and more contractions recently but nothing to regular. It scares me that I will go into premature labor and have to deliver in Albany. If that happens, Tripp will be transferred to MCG while I stay in Albany to recover. Not at all what we want to happen.
I started back to school/work on Tuesday of this week and it has about killed me. I know that it is only short term because in September I will leave for maternity leave, but I am not sure I will make it to then! My back hurts so bad at night that I can barely walk. Sleeping now is a joke and if I do fall asleep I know I am going to wake up during the night. I am ready for some relief and no more indegestion!
Please keep the prayers coming and thanks again for the support that each of you have shown to us through this blog, with calls, gifts, cards, and emails. I will try to update more later and maybe not wait so long! Love you guys!
We went to Augusta on Monday to meet with Dr. Devoe and take a look at how things were going. The forst thing that we do at each visit is ultrasound. We usually spend about 45 minutes in there and they look and take about 100 pictures. It's has been fun the last couple of times because we have gotten some great 3d shots of Tripp's face. This time he wasn't cooperating so much. Tripp is still in breech position and for that visit he was face down. Natalee is usually our sonographer but she was out on leave so we met Harriet and a medical student. Harriet was not as warm and personable as Natalee. Since she was new to us and us to her, she felt like she needed to get very indepth pictures of his heart. She tried for about 25 minutes and then decided it wasn't going to work. Since he was face down, she kept getting shots of the spine and could not measure the four chambers to ensure that they were symetrical. At this point in my pregnancy they wanted to measure to make sure that Tripp wpould not be born ASD. Dr. Devoe came in with his 2 medical students and explained to Harriet that he wasn't concerned because the heart looked great at the last 2 visits. We are praying that he was right and that a trip to cardiology for further testing and evaluation will not be necessary. I am really getting worn out and extremely tired of traveling and drs. appointments.
His ventricles were more enlarged at this visit but that is what Dr. Devoe expects to happen at each visit. The ultrasound and measuring of my belly both agreed that Tripp was 30 weeks but on the ultrasound his head was measuring closer to 37 weeks. Dr. Devoe has said all along that we would most like be candidtaes for a c-section and he confirmed it this time. He said that babies will usually tell you how they need to be born. Since Tripp is in breech position (Dr. Devoe thinks he will probably stay this way due to the lack of space to turn around) he will have to be delivered by c-section. He also said that he doesn't want to put the pressure on me and the birth canal or Tripp's head. We will go back August 24 for my 34 week check up and will hopefully know more of what will happen at week 37. At week 37 when we return to Augusta, we will be there to stay. Dr. Devoe will wait until then to do the amnio to check for lung maturity and if we are given the green light Tripp will be born the next day. If not, then I will recieve steroid shots and wait a couple of days and then have the c-section. I have lots to do between now and then!
We were also told that I would have to have BPP monitoring once a week beginning at 32 weeks with Dr. Edwards in Albany. So now in addition to going to Dr. Devoe, physical therapy, Dr. Talley/Smurda, now I have to go weekely to Dr. Edwards and be monitored! I am so tired of burning up the road every day! I will see Dr. Smurda or Talley at 32 weeks also and they will begin checking me to make sure that I am not dialating. I have been having more and more contractions recently but nothing to regular. It scares me that I will go into premature labor and have to deliver in Albany. If that happens, Tripp will be transferred to MCG while I stay in Albany to recover. Not at all what we want to happen.
I started back to school/work on Tuesday of this week and it has about killed me. I know that it is only short term because in September I will leave for maternity leave, but I am not sure I will make it to then! My back hurts so bad at night that I can barely walk. Sleeping now is a joke and if I do fall asleep I know I am going to wake up during the night. I am ready for some relief and no more indegestion!
Please keep the prayers coming and thanks again for the support that each of you have shown to us through this blog, with calls, gifts, cards, and emails. I will try to update more later and maybe not wait so long! Love you guys!
Sunday, July 17, 2011
Please pray...
I have a friend from high school, Heather, that recieved some scary news about her husband. Please pray for Heather and her husband Ryan. Pray for their strength in the next several days as they await some test results. Thanks!
PS - Thanks for checking on us daily through our blog. The prayers are getting us through each day. Please keep them coming our way too!
PS - Thanks for checking on us daily through our blog. The prayers are getting us through each day. Please keep them coming our way too!
Monday, July 11, 2011
Waiting and waiting and more waiting!
I don't think I ever want to drink an orange sunkist ever again. After I chocked down the orange glucose drink today I made up my mind that I do not ever want another orange drink again. It is so sweet that it burned my throat. After I got it down, I cleared my throat because it was buring. I heard the nurse from the other room say "Are you ok Mrs. Hill?" "Don't throw up. We will have to start over." I was not going to throw up because I did not want to do this again! I am still waiting for my glucose test results. I went to the dr. last Thursday (July 7) to have my bloodwork for my glucose tolerance test. Well....I FAILED! I passed the one hour test with Kinsley with no problem. Like I have been saying since the beginning, this pregnancy has been COMPLETELY different and opposite than my first one. I went in today to have my 3 hour test and let me just tell you...it was purre TORTURE! I was so hungry by the time that I left. I had to be there between 7:30-9:00 am. I arrived around 7:45 to get the show started. I thought that it would be easy after they took the first bit of blood from my arm. Wrong! It's not like the one hour when you give blood from your arm once and then the prick your finger for the results. Oh no! They had to take blood from my arm 3 more times after they got the first bit. My veins look scary and I HAVE to wear short sleeve shirts. So like I
said earlier, I was so hungry that I thought I wasn't going to make it while sitting there for 3 long hours!! I had not eaten since last night! To make matters worse, all of the nurses in this office were talking about food like the entire time I was there. Fresh fruit was the topic of conversation and I could feel my mouth watering. I hust really wanted some strawberries and pineapple. That was happening though.
I have been home for a little while now and I still feel like I am starving. I went through Taco Bell and inhaled my food like I had not eaten in a week. It had only been 14 hours!!! That food didn't stand a chance up against me! I don't know when I will get my results but I am praying that I pass. If not, I am going to have to go buy all new groceries. We are not set up here for a diabetic to eat and survive.
I would like to say thanks to those who have called, sent cards, and prayers our way. We appreciate everything and would not have made it this far without the support. Please continue to send the prayers for Tripp and our family. God is sending us down this long, uncertain path for some reason that we do not yet know. We may never know but we know that we must take this path and make the best of it. This whole pregnancy and "Tripp" that our family has been experiencing is just a small bump in the road. We are looking forward to what Tripp will bring to our family! Again thanks for everything!
We go back to Augusta July 24 for our appointment on July 25. Also been going back and forth to Albany for Physical therapy about twice a week. Uugh! This has been a very busy pregnancy!
said earlier, I was so hungry that I thought I wasn't going to make it while sitting there for 3 long hours!! I had not eaten since last night! To make matters worse, all of the nurses in this office were talking about food like the entire time I was there. Fresh fruit was the topic of conversation and I could feel my mouth watering. I hust really wanted some strawberries and pineapple. That was happening though.
I have been home for a little while now and I still feel like I am starving. I went through Taco Bell and inhaled my food like I had not eaten in a week. It had only been 14 hours!!! That food didn't stand a chance up against me! I don't know when I will get my results but I am praying that I pass. If not, I am going to have to go buy all new groceries. We are not set up here for a diabetic to eat and survive.
I would like to say thanks to those who have called, sent cards, and prayers our way. We appreciate everything and would not have made it this far without the support. Please continue to send the prayers for Tripp and our family. God is sending us down this long, uncertain path for some reason that we do not yet know. We may never know but we know that we must take this path and make the best of it. This whole pregnancy and "Tripp" that our family has been experiencing is just a small bump in the road. We are looking forward to what Tripp will bring to our family! Again thanks for everything!
We go back to Augusta July 24 for our appointment on July 25. Also been going back and forth to Albany for Physical therapy about twice a week. Uugh! This has been a very busy pregnancy!
Saturday, July 2, 2011
Faith
The last 2 months have been such a roller coaster. It amazes me how God works in our lives. When I first heard the diagnosis of hydrocephalus and what all that could mean, I kept asking "why me?" and "what did I do to deserve this?" I felt completely lost and like no one could understand exactly what I was feeling. I know it is hard for others to feel the level of fear and anxiety that I myself am feeling. For the first 4 or 5 weeks after diagnosis it was very hard for me to talk about him and even to look at the dozens of ultrasound pictures we had of him. I even had a hard time looking at my belly in the mirror! (Seems so silly now!) When someone would call or come up to me and say that they had been praying for me or even just hug me, I would cry. I wasn't able to respond back with anything but "thank you." I almost wished that people would just stop talking about it so I would not have to think about the scary, uncertain side of things. I have some of the best friends and family that anyone could ask for. From calling me, emailing, texting, sending cards, and traveling to drs. appointments with me, I have seen how much everyone cares. Thanks!
From the early days of diagnosis until now, SO MUCH HAS CHANGED INSIDE ME! I can talk about Tripp and when people come up to me, call, or tell me they are praying for me it makes me smile. The prayers are working and I am at peace with the plan that God has for me and my family. It is such a relief to me that I have been able to turn all this over to God and let Him guide me through this journey each day. Please just keep the prayers coming! God is listening!
From the early days of diagnosis until now, SO MUCH HAS CHANGED INSIDE ME! I can talk about Tripp and when people come up to me, call, or tell me they are praying for me it makes me smile. The prayers are working and I am at peace with the plan that God has for me and my family. It is such a relief to me that I have been able to turn all this over to God and let Him guide me through this journey each day. Please just keep the prayers coming! God is listening!
Wednesday, June 29, 2011
Update...
We made it safely to and from Augusta and learned a little in between. We started our day out with neurosurgery. We met Dr. Macomson who will actually do the surgery shortly after birth. He said that it usually takes place about 24 hours after birth so that they can give the baby adequate time to become stable. The surgery to place the shunt in lasts about an hour. He will have a small incision in his head to insert the tubing and drain and one small incision in his abdomen to make sure the tube is in place so it can drain. He said that on average a shunt lasts about 10 years but children tend to have more replacements because they are constantly growing or getting infected/blocked. There is a surgery that he could possibly have when he is older to create a larger opening so that the fluid can drain on its own. This could be a possibility when we have to have another surgery to replace the shunt. Dr. Macomson also told us that because of the surgery, Tripp would probably have to have some type of physical, occupational, and/or speech therapy because when surgery is done on the brain it can mess up the normal functions of the brain and our body. We asked about Tripp playing contact sports when he was older such as baseball and football. He said that if all goes well and the shunt begins to work properly draining the fluid so the brain can restore itself, that Tripp could lead a normal life and play anything that other kids his age were playing. Such a relief for John to hear!!
We also met with the charge nurse on the labor/delivery floor. She walked us through what would happen and who all would be in the room with us when Tripp was born. She took so much time explaining how things worked and what to expect with a c-section.
After Labor and delivery, we met with one of the neonatologists. He said that we should expect for Tripp to have to have a breathing tube when he is born because often times these babies can't breathe on their own because the brain tells you to breathe and his will not be able to. He said that this should last for 3-5 days. A little scary to think about but I know that he would be in great hands. He also said that at the most we should expect to stay 1 month but it could be a short as 1 week. Praying for a short stay and that we will come home with healthy baby! We also toured the NICU and got to see where Tripp would be staying.
The staff at MCG have been and will be so accommodating to our family. They welcome as many family members to be a part of the whole process. That's a good thing because John has HUGE family.
We met with Dr. Devoe at 1:00 that afternoon. He did another 3d ultrasound and took a second look at the spine, heart, and kidneys. Everything there looked great. The sonographer told us that if we didn't know already that Tripp had hydrocephalus, they would not be able to tell yet from the ultrasound because he looks so normal. She said that she has seen many babies that had disabilities that you could see on the ultrasound. Tripp's forehead is starting to protrude but she said it looks minimal. She made me feel better and said that we are very fortunate that we have only this to worry about. I go back to Augusta July 25 for my 30 week checkup and again at 34 weeks. At 34 weeks I will have another amniocentesis to determine if the fetal lung development is enough to go ahead and deliver around 36 or 37 weeks. Dr. Devoe said that at the 34 week appointment we would circle the date to take the baby. I think we are looking at having him right after labor day.
In the meantime, I am still taking the progesterone shots weekly at my house in addition to going to physical therapy for my back. I guess it's safe to say that I am SUPER busy and it doesn't look like it will be slowing down anytime soon.
John and I would like to say thank you to everyone that has prayed, called, emailed, sent cards, etc... It means so much to us to know that we have so many prayer warriors behind us. Thanks for all the support! Keep the prayers coming!!!
Love to all of you!!!
We also met with the charge nurse on the labor/delivery floor. She walked us through what would happen and who all would be in the room with us when Tripp was born. She took so much time explaining how things worked and what to expect with a c-section.
After Labor and delivery, we met with one of the neonatologists. He said that we should expect for Tripp to have to have a breathing tube when he is born because often times these babies can't breathe on their own because the brain tells you to breathe and his will not be able to. He said that this should last for 3-5 days. A little scary to think about but I know that he would be in great hands. He also said that at the most we should expect to stay 1 month but it could be a short as 1 week. Praying for a short stay and that we will come home with healthy baby! We also toured the NICU and got to see where Tripp would be staying.
The staff at MCG have been and will be so accommodating to our family. They welcome as many family members to be a part of the whole process. That's a good thing because John has HUGE family.
We met with Dr. Devoe at 1:00 that afternoon. He did another 3d ultrasound and took a second look at the spine, heart, and kidneys. Everything there looked great. The sonographer told us that if we didn't know already that Tripp had hydrocephalus, they would not be able to tell yet from the ultrasound because he looks so normal. She said that she has seen many babies that had disabilities that you could see on the ultrasound. Tripp's forehead is starting to protrude but she said it looks minimal. She made me feel better and said that we are very fortunate that we have only this to worry about. I go back to Augusta July 25 for my 30 week checkup and again at 34 weeks. At 34 weeks I will have another amniocentesis to determine if the fetal lung development is enough to go ahead and deliver around 36 or 37 weeks. Dr. Devoe said that at the 34 week appointment we would circle the date to take the baby. I think we are looking at having him right after labor day.
In the meantime, I am still taking the progesterone shots weekly at my house in addition to going to physical therapy for my back. I guess it's safe to say that I am SUPER busy and it doesn't look like it will be slowing down anytime soon.
John and I would like to say thank you to everyone that has prayed, called, emailed, sent cards, etc... It means so much to us to know that we have so many prayer warriors behind us. Thanks for all the support! Keep the prayers coming!!!
Love to all of you!!!
Wednesday, June 22, 2011
ITINERARY
You know it's going to be a long day of Dr. visits when you receive an itinerary in the mail with maps and diagrams of how to get from one appointment to another. On Sunday, we depart for yet another LONG road trip to Augusta. My sister Tiffany and mom are going with us. I think it will be beneficial for them to meet with the teams of doctors as well since they will be helping us care for Tripp when we return home following delivery. They will be our relief team when John and I just need a break or a couple of hours to get away. Our morning begins at 8:10 when we meet with Dr. Macomcon. He is an assistant professor of neurology and will be the Dr. in charge of Tripp's surgery shortly after birth. After we meet with him, we will be escorted to Neonatology to meet with the team of doctors and nurses that will care for him in the NICU/ICU nursery. Sometime after that appointment we are going to labor and delivery to meet with the doctors and nurses there that will be performing the c-section. Hopefully after that visit we will get to eat a bite for lunch! I don't know if there will be enough time!!! All this to be done before 1:00. At 1:00 we are meeting with the maternal fetal specialist, Dr. Devoe, that we met with last time. He will be taking care of me throughout the remainder of the pregnancy in addition to my regular OB. He is the one that I will have to travel to see every month until we get closer and then probably twice a month.
Please be in prayer that we have safety of travel to and from Augusta. Also pray for the Doctors that will be taking care of us throughout this "Tripp" or journey that we are on.
I will update when we actually meet with the doctors. This has been such a great way to vent and to just say the things that I needed to say. I still have days that are not so easy. Last night was a struggle for me. I just had to turn it over to God and fell asleep while talking to Him! I woke up this morning with a feeling of peace.
I think that we will actually get to tour the NICU/ICU and see others who are dealing with what we will soon be facing at birth. I am scared to "see" and "hear" what we may be facing. The social worker that is working with us said that it will be good to see what we should expect and even see what babies look like born with hydrocephalus. Just a little nervous and anxious I guess!
It's so awesome knowing that we have family and friends that are here to support us in any way and that are willing to take this "Tripp" along with us! Thank you from the bottom of our hearts for everything!!! <3
Trust & Rely In Power of Prayer!
Please be in prayer that we have safety of travel to and from Augusta. Also pray for the Doctors that will be taking care of us throughout this "Tripp" or journey that we are on.
I will update when we actually meet with the doctors. This has been such a great way to vent and to just say the things that I needed to say. I still have days that are not so easy. Last night was a struggle for me. I just had to turn it over to God and fell asleep while talking to Him! I woke up this morning with a feeling of peace.
I think that we will actually get to tour the NICU/ICU and see others who are dealing with what we will soon be facing at birth. I am scared to "see" and "hear" what we may be facing. The social worker that is working with us said that it will be good to see what we should expect and even see what babies look like born with hydrocephalus. Just a little nervous and anxious I guess!
It's so awesome knowing that we have family and friends that are here to support us in any way and that are willing to take this "Tripp" along with us! Thank you from the bottom of our hearts for everything!!! <3
Trust & Rely In Power of Prayer!
Monday, June 20, 2011
The next hurdle
Well as I sit here and think about what the road ahead may look like, I often come back to the haunting task or nightmare of finding someone to take care of Tripp when I have to return to work. Quitting my job and being a stay at home mom is absolutely out of the question. Financially I would not be able to do that with the unknowns of medical bills. Because of the unknowns as far as what specific care will be needed, it is hard for us to even begin to think about who would want this job. It can't be just anyone. It would have to be a lot of one on one attention and someone that could handle the possibility of a lot of extra TLC. Please be in prayer as we travel this road and that God places the right person in our path. I know this person is out there, we just have to find them. Better yet, have them find us!!!!
If you know of anyone around where we live that could be a possibility, please let me know.
If you know of anyone around where we live that could be a possibility, please let me know.
Saturday, June 18, 2011
T.R.I.P.P
My sister texted me last night with T.R.I.P.P.
Trust &
Rely
In
Power of
Prayer
We are learning that a little more each day!! Never in a million years did we ever picture ourselves sitting here with all of this going on around us. Thanks so much for the prayers and please keep them coming!
Love you guys!!!
Trust &
Rely
In
Power of
Prayer
We are learning that a little more each day!! Never in a million years did we ever picture ourselves sitting here with all of this going on around us. Thanks so much for the prayers and please keep them coming!
Love you guys!!!
Wednesday, June 15, 2011
Welcome to Holland
This is a poem that my friend Tammie shared with me and I thought I would share it with all of you!
I think this has been a lifesaver to us as far as dealing with the unknowns and uncertain road ahead.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I think this has been a lifesaver to us as far as dealing with the unknowns and uncertain road ahead.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Tuesday, June 14, 2011
From the beginning.....
Here is the story of our "Tripp" or journey that we have been on for the last 5 1/2 months....
I found out I was pregnant on January 24, 2011. I remember approaching John about it with an uneasy feeling. I was excited but had already figured out my due date and it was October 1. What's the big deal about that date most people would ask. Well, it's the day of the Florida-Alabama game and we have season tickets. All I could think about was "what is this going to do to our football season and traveling down for games?" Never did I imagine that this "Tripp" would take us in many other directions and that football season and not going to games would seem like the least of my problems.
Around week 6, I started to feel a little different and had a few issues but my dr. reassured me that what I was experiencing was completely normal and that every pregnancy is different. I started to feel better and grew a little more excited everyday about this baby that would join our family. We had our first OB appointment February 15 and got to see the heartbeat and our first picture to take home. Everything looked great and so we thought we were on the road for a normal, healthy pregnancy.
May 11 was the day that we had been awaiting for a long time. We took Kinsley with us to find out if she was going to have a baby sister or brother. As I was lying on the table, the dr. came in to help the sonographer read the ultrasound. He asked us if we wanted to know what we were having and he immediately said "it's definitely a boy, there is no denying it." I looked over at John and he was grinning from ear to ear. Then I heard "Whoa!" Hope, the sonographer, and the Dr. began to talk and look even more. I tried to motion for John to come over to me because I could not even get the words out of my mouth. I started to feel light headed, my ears started to ring, and I broke out into a cold sweat. I covered my eyes and could not look at the tv to even see the baby on there. John could not hear any of this and didn't know anything was going on. The dr. continued looking and asking Hope to go back to the brain to look. He finally spoke up and said that the lateral ventricles were enlarged and that he wanted to refer me to Dr. Edwards. Dr. Edwards is a specialist and I knew that this could mean the start of a long journey. He mentioned to us that the condition we were possibly facing was called hydrocephalus. He explained that he did not know much about this but that Dr. Edwards could do more extensive tests. I thought that I would have a couole of days to take this in while we waited for an appointment with Dr. Edwards. WRONG! When I checked out, they told me that Dr. Edwards would see me at 8:00 tomorrow morning.
The next morning, myself, John, and my sister Tiffany went to see Dr. Edwards to look at what we were possibly facing. After the sonographer took about 100 pictures, the dr. came in. He took a look and confirmed that the baby had Hydrocephalus and that it was possibly caused by aqueductal steniosis. He placed the baby in the moderate to severe category. He also suggested that we have an amniocentesis done to rule out other possible factors such as spina bifida, trisomy 13 or 18. He said that he felt like the spine was ok but was only 90% sure because he could not see the entire thing. Often times when there is hydrocephalus, there is also spina bifida. So again, there I go thinking that we can think about the amnio and have a day or two to sleep on since it came with the risk of miscarriage. WRONG again! He left us alone for about 5 minutes and came back to hear our decision. We agreed and within 5 minutes he was sticking that long needle into my abdomen. So scary! I then had to leave there and go have the RhoGam shot at my dr. because of my blood type. I was also told to go home and do much of nothing for the next 48 hours. So I did. BORING!!!
I know this post is long but I just want you guys to know the steps we have taken to get where we are now. We made a follow up appointment that same day to see Dr. Edwards again in 2 weeks and see of there was any change. On Monday May 23, Jill, Dr. Edwards nurse, called me to give me the results of the amnio. Aqueductal stenosis was the diagnosis and this was causing the hydrocephalus. We met with Dr. Edwards on Wednesday May 25 to take another look. The aquaducts were even more enlarged and measured 21 and 23 cm. He moved us into the severe range. Possibly the WORST day of my life. I knew we had so many peeple all over the country praying for us and I just felt like the prayers had not helped anything. I knew I needed them more than ever at that very moment but didn't know how much faith I had left. Dr. Edwards said that he wanted us to meet with Dr. B. Maria, a pediatric neurologist, from MCG. He travels from MCG to Albany once a month to see patients here and he would be able to see me June 9. I wasn't satisfied so I called to see if we could meet with him earlier if we traveled to Augusta. We finally got an appointment for June 1.
Myself, John and Tiffany headed out for our roadtrip to Augusta on May 31. My dad met us there and we met with Dr. Maria. When I got there to check in, the nurses kept getting confused that I was the 30 year old patient at the pediatric neurologists office! When I was called back, they weighed me, checked blood pressure, checked my height, and even my head circumference!!!!! I felt like Kinsley, my 4 year old! Dr. Maria talked to us about hydrocephalus and what we could do right now to investigate a little more and maybe have more answers. He joked with us, made us feel at ease, and had a great bedside manner. My sister told him that she had been praying for God to send someone like that to us that could make us feel better and shed a little more light on what was going on. Since he actually sees these kids after they are born and takes care of them he had a little more to offer. Did I mention he was a UF graduate and a Gator fan?!?! I knew we were in the right place. He told us that he wanted us to go ahead and have the Fetal MRI that is usally done at 28 weeks to see if we could see the extent of brain development under the fluid. I was only 21 weeks but it did not matter. He told us to wait a few minutes while he made a few calls. About 10 minutes later, he walked in to say that we had an appointement with Dr. Devoe tomorrow, the Dr. Edwards of Augusta, and a fetal MRI later TODAY! God was there with us making all of this possible. We ate lunch at P.F. Changs and headed back to the hospital for the MRI. For the record, that was one of the worst things I have ever done and do not want to do that again! I am extremely clausterphobic and that tunnel is so small! After the MRI, we left Augusta and went to Covington to stay with the Grants, close family friends, and met up with some other friends to try and enjoy the night before we got the results. We got up at 5:45 to head back for a filled day of tests and drs. in Augusta. We met with Dr. Devoe, his sonographer, his nurse practinioner, and 2 medical students. It was a bit overwhelming and I had a mild panic attack during the middle of my ultrasound. He looked at all the organs and the spine in 3d. Everything looked perfect and the only thing that we were still dealing with was hydrocephalus. He did not get a good read from the MRI because Tripp was too busy kicking, running, and flopping around in there. He said he saw what he wanted and expected from the few pictures that did come back clear enough and also from the ultrasound. He said that since I delevered Kinsley at 35 weeks, he wanted to start me on progesterone shots weekly to help prevent preterm labor. He also told me that I would deliver by c-section around 37 weeks at MCG. I have to go to Augusta every 4 weeks to see Dr. Devoe as well as keep my current appointemets with my regualr OB here. When Tripp is born and stable enough, a team of neurosurgeons will place a shunt into his brain to help drain the built up spinal fluid. Hopefully any damage that has been done to the brain can be reversed and the brain will function as normal. The baby and I will have to stay a while in Augusta. He will be in the NICU/ICU and we will be at the Ronald McDonald house. We go back June 27 to meet with labor and delivery, NICU/ICU, and the neurosurgeons. I will also see Dr. Devoe again.
Shots start today on June 14. A nurse will come out weekly to give them to me. Oh yeah, did I mention above that Dr. Devoe met with us on June 2 on his day off? He was leaving for vacation the next day and he wasn't even supposed to be there!!! God is hard at work!
Thanks for all of the prayers. Please keep them coming! I will update as often as I can. This is all still new to me!
I found out I was pregnant on January 24, 2011. I remember approaching John about it with an uneasy feeling. I was excited but had already figured out my due date and it was October 1. What's the big deal about that date most people would ask. Well, it's the day of the Florida-Alabama game and we have season tickets. All I could think about was "what is this going to do to our football season and traveling down for games?" Never did I imagine that this "Tripp" would take us in many other directions and that football season and not going to games would seem like the least of my problems.
Around week 6, I started to feel a little different and had a few issues but my dr. reassured me that what I was experiencing was completely normal and that every pregnancy is different. I started to feel better and grew a little more excited everyday about this baby that would join our family. We had our first OB appointment February 15 and got to see the heartbeat and our first picture to take home. Everything looked great and so we thought we were on the road for a normal, healthy pregnancy.
May 11 was the day that we had been awaiting for a long time. We took Kinsley with us to find out if she was going to have a baby sister or brother. As I was lying on the table, the dr. came in to help the sonographer read the ultrasound. He asked us if we wanted to know what we were having and he immediately said "it's definitely a boy, there is no denying it." I looked over at John and he was grinning from ear to ear. Then I heard "Whoa!" Hope, the sonographer, and the Dr. began to talk and look even more. I tried to motion for John to come over to me because I could not even get the words out of my mouth. I started to feel light headed, my ears started to ring, and I broke out into a cold sweat. I covered my eyes and could not look at the tv to even see the baby on there. John could not hear any of this and didn't know anything was going on. The dr. continued looking and asking Hope to go back to the brain to look. He finally spoke up and said that the lateral ventricles were enlarged and that he wanted to refer me to Dr. Edwards. Dr. Edwards is a specialist and I knew that this could mean the start of a long journey. He mentioned to us that the condition we were possibly facing was called hydrocephalus. He explained that he did not know much about this but that Dr. Edwards could do more extensive tests. I thought that I would have a couole of days to take this in while we waited for an appointment with Dr. Edwards. WRONG! When I checked out, they told me that Dr. Edwards would see me at 8:00 tomorrow morning.
The next morning, myself, John, and my sister Tiffany went to see Dr. Edwards to look at what we were possibly facing. After the sonographer took about 100 pictures, the dr. came in. He took a look and confirmed that the baby had Hydrocephalus and that it was possibly caused by aqueductal steniosis. He placed the baby in the moderate to severe category. He also suggested that we have an amniocentesis done to rule out other possible factors such as spina bifida, trisomy 13 or 18. He said that he felt like the spine was ok but was only 90% sure because he could not see the entire thing. Often times when there is hydrocephalus, there is also spina bifida. So again, there I go thinking that we can think about the amnio and have a day or two to sleep on since it came with the risk of miscarriage. WRONG again! He left us alone for about 5 minutes and came back to hear our decision. We agreed and within 5 minutes he was sticking that long needle into my abdomen. So scary! I then had to leave there and go have the RhoGam shot at my dr. because of my blood type. I was also told to go home and do much of nothing for the next 48 hours. So I did. BORING!!!
I know this post is long but I just want you guys to know the steps we have taken to get where we are now. We made a follow up appointment that same day to see Dr. Edwards again in 2 weeks and see of there was any change. On Monday May 23, Jill, Dr. Edwards nurse, called me to give me the results of the amnio. Aqueductal stenosis was the diagnosis and this was causing the hydrocephalus. We met with Dr. Edwards on Wednesday May 25 to take another look. The aquaducts were even more enlarged and measured 21 and 23 cm. He moved us into the severe range. Possibly the WORST day of my life. I knew we had so many peeple all over the country praying for us and I just felt like the prayers had not helped anything. I knew I needed them more than ever at that very moment but didn't know how much faith I had left. Dr. Edwards said that he wanted us to meet with Dr. B. Maria, a pediatric neurologist, from MCG. He travels from MCG to Albany once a month to see patients here and he would be able to see me June 9. I wasn't satisfied so I called to see if we could meet with him earlier if we traveled to Augusta. We finally got an appointment for June 1.
Myself, John and Tiffany headed out for our roadtrip to Augusta on May 31. My dad met us there and we met with Dr. Maria. When I got there to check in, the nurses kept getting confused that I was the 30 year old patient at the pediatric neurologists office! When I was called back, they weighed me, checked blood pressure, checked my height, and even my head circumference!!!!! I felt like Kinsley, my 4 year old! Dr. Maria talked to us about hydrocephalus and what we could do right now to investigate a little more and maybe have more answers. He joked with us, made us feel at ease, and had a great bedside manner. My sister told him that she had been praying for God to send someone like that to us that could make us feel better and shed a little more light on what was going on. Since he actually sees these kids after they are born and takes care of them he had a little more to offer. Did I mention he was a UF graduate and a Gator fan?!?! I knew we were in the right place. He told us that he wanted us to go ahead and have the Fetal MRI that is usally done at 28 weeks to see if we could see the extent of brain development under the fluid. I was only 21 weeks but it did not matter. He told us to wait a few minutes while he made a few calls. About 10 minutes later, he walked in to say that we had an appointement with Dr. Devoe tomorrow, the Dr. Edwards of Augusta, and a fetal MRI later TODAY! God was there with us making all of this possible. We ate lunch at P.F. Changs and headed back to the hospital for the MRI. For the record, that was one of the worst things I have ever done and do not want to do that again! I am extremely clausterphobic and that tunnel is so small! After the MRI, we left Augusta and went to Covington to stay with the Grants, close family friends, and met up with some other friends to try and enjoy the night before we got the results. We got up at 5:45 to head back for a filled day of tests and drs. in Augusta. We met with Dr. Devoe, his sonographer, his nurse practinioner, and 2 medical students. It was a bit overwhelming and I had a mild panic attack during the middle of my ultrasound. He looked at all the organs and the spine in 3d. Everything looked perfect and the only thing that we were still dealing with was hydrocephalus. He did not get a good read from the MRI because Tripp was too busy kicking, running, and flopping around in there. He said he saw what he wanted and expected from the few pictures that did come back clear enough and also from the ultrasound. He said that since I delevered Kinsley at 35 weeks, he wanted to start me on progesterone shots weekly to help prevent preterm labor. He also told me that I would deliver by c-section around 37 weeks at MCG. I have to go to Augusta every 4 weeks to see Dr. Devoe as well as keep my current appointemets with my regualr OB here. When Tripp is born and stable enough, a team of neurosurgeons will place a shunt into his brain to help drain the built up spinal fluid. Hopefully any damage that has been done to the brain can be reversed and the brain will function as normal. The baby and I will have to stay a while in Augusta. He will be in the NICU/ICU and we will be at the Ronald McDonald house. We go back June 27 to meet with labor and delivery, NICU/ICU, and the neurosurgeons. I will also see Dr. Devoe again.
Shots start today on June 14. A nurse will come out weekly to give them to me. Oh yeah, did I mention above that Dr. Devoe met with us on June 2 on his day off? He was leaving for vacation the next day and he wasn't even supposed to be there!!! God is hard at work!
Thanks for all of the prayers. Please keep them coming! I will update as often as I can. This is all still new to me!
