I am going to try and start updating the blog since it has been a year since my last post. It is like therapy to me so I think it will be fun to start blogging again. So much has happened over the past year. I hope you come back to visit and catch up!
Summer
Monday, January 21, 2013
Thursday, January 26, 2012
What a week...
Thanks to everyone who has been praying, calling, and texting these last several weeks. Tripp is truly a miracle baby that still has a lifetime ahead of him to show the world how strong he is! I would also like to say thanks to my family (my sisters, parents, Kinsley, and Jim) for driving up to Augusta with us and being there while Tripp had surgery.
We checked in to the hospital on Tuesday morning at 11:00 am and turned Tripp over to Dr. Macomson and his surgical team. That was one of the scariest things I have ever done!!! We sat in the waiting area during the surgery and kept waiting for the phone to ring with updates. Surgery was scheduled to start at 12. At 12:27, the nurse called me to say they had just started and that Tripp was doing great. The surgery was to take anywhere from 60-95 minutes. At 12:38, the phone rang again and the nurse told me Dr. Macomson was on his way out to talk to us. When he came out, he said that Tripp did great and that the team was closing him up and that we should see him in the next half hour. He said that it only lasted about 40 minutes! When we got into recovery, Tripp was whining and trying to wake up. He was so pitiful. I felt his soft spot and WHAT A DIFFERENCE!!! An hour after surgery and it was normal! The nurse let me feed him and this seemed to make him better. We sat in recovery for almost 2 hours and then we were on our way to a room for the night. He was doing so good that we were allowed to stay on the fifth floor of CMC which is a regular pediatric floor and not in the NICU or PICU! Praise the Lord! Because he was sent to 5th floor, we got to stay with him. Around 5 that afternoon, the nurse gave him morphine to control the pain. He was so out of it and just not a happy, smiling baby that we were so used to seeing. Around midnight we were faced with giving him another dose of morphine or just tylenol. We tried the tylenol because we knew he would be going home the next day and just wanted to make sure that it would control the pain enough...and it did. I finally saw a smile from Tripp around 2:30 am. What a sight!
At 2:30, he kicked his IV out of his foot and the nurses tried a few more times, unsuccessfully, to put it back in. He has small veins and its hard to get the needle to stay in. A PIC team came in at 5:30 to put in a pic line so that all of his meds could be given as well as his fluids without the continuous sticking. About 7:30 we started our day of drs (always looks like an episode of house at MCG because it is a training facility) coming in and out in herds! You have attending drs, fellows, residents, and nurses. After they leave your room, they stand out in hallway and discuss! It is just like you see on tv! We saw Dr. Macomson again (neurosurgeon) and he actually showed us what the vp shunt looks like and how they put it in. I can't believe some rubber tubing and a plastic valve are all Tripp needed to have put in to fix this problem!
Tripp has 4 incisions. He has one in the back of his head where the shunt was placed, one on the right side of his neck where they started fishing the tube down, one in his belly button where the scope went in to guide the tube, and one on the upper, right side of abdomen to pull the tubing into that area. His head is half shaved and I hope that his hair grows back quickly! You can see the shunt. It looks like a small finger under the skin and feels hard. It will always be able to be felt but as he grows and his hair grows, it will not be as noticeable.
We were discharged about lunch time and have several follow up appointments in the near future. We came home to a roast with carrots, onions, and potatoes compliments of my mama! It was nice to not have to cook dinner and get to enjoy a home cooked meal! We are going to take it easy for a few days and see how things go before I can return to work.
Thanks again for all of the support and prayers through our entire journey! Keep them coming as we continue to get answers to many more questions regarding Tripp. A HUGE thanks also to Kim Lucky from MCG and for all that she has done for us since our journey started there last June. She means the world to us and has made our trips and stays there so easy! Also, I would like to say thanks to the Grant family for their hospitality as we come and crash their house with a place to stay when we are back and forth between appointments.
T.R.I.P.P.
I am still learning about this blog and I am trying to figure out how to keep adding pictures! If you know how please let me know!! (Magaen????)
We checked in to the hospital on Tuesday morning at 11:00 am and turned Tripp over to Dr. Macomson and his surgical team. That was one of the scariest things I have ever done!!! We sat in the waiting area during the surgery and kept waiting for the phone to ring with updates. Surgery was scheduled to start at 12. At 12:27, the nurse called me to say they had just started and that Tripp was doing great. The surgery was to take anywhere from 60-95 minutes. At 12:38, the phone rang again and the nurse told me Dr. Macomson was on his way out to talk to us. When he came out, he said that Tripp did great and that the team was closing him up and that we should see him in the next half hour. He said that it only lasted about 40 minutes! When we got into recovery, Tripp was whining and trying to wake up. He was so pitiful. I felt his soft spot and WHAT A DIFFERENCE!!! An hour after surgery and it was normal! The nurse let me feed him and this seemed to make him better. We sat in recovery for almost 2 hours and then we were on our way to a room for the night. He was doing so good that we were allowed to stay on the fifth floor of CMC which is a regular pediatric floor and not in the NICU or PICU! Praise the Lord! Because he was sent to 5th floor, we got to stay with him. Around 5 that afternoon, the nurse gave him morphine to control the pain. He was so out of it and just not a happy, smiling baby that we were so used to seeing. Around midnight we were faced with giving him another dose of morphine or just tylenol. We tried the tylenol because we knew he would be going home the next day and just wanted to make sure that it would control the pain enough...and it did. I finally saw a smile from Tripp around 2:30 am. What a sight!
At 2:30, he kicked his IV out of his foot and the nurses tried a few more times, unsuccessfully, to put it back in. He has small veins and its hard to get the needle to stay in. A PIC team came in at 5:30 to put in a pic line so that all of his meds could be given as well as his fluids without the continuous sticking. About 7:30 we started our day of drs (always looks like an episode of house at MCG because it is a training facility) coming in and out in herds! You have attending drs, fellows, residents, and nurses. After they leave your room, they stand out in hallway and discuss! It is just like you see on tv! We saw Dr. Macomson again (neurosurgeon) and he actually showed us what the vp shunt looks like and how they put it in. I can't believe some rubber tubing and a plastic valve are all Tripp needed to have put in to fix this problem!
Tripp has 4 incisions. He has one in the back of his head where the shunt was placed, one on the right side of his neck where they started fishing the tube down, one in his belly button where the scope went in to guide the tube, and one on the upper, right side of abdomen to pull the tubing into that area. His head is half shaved and I hope that his hair grows back quickly! You can see the shunt. It looks like a small finger under the skin and feels hard. It will always be able to be felt but as he grows and his hair grows, it will not be as noticeable.
We were discharged about lunch time and have several follow up appointments in the near future. We came home to a roast with carrots, onions, and potatoes compliments of my mama! It was nice to not have to cook dinner and get to enjoy a home cooked meal! We are going to take it easy for a few days and see how things go before I can return to work.
Thanks again for all of the support and prayers through our entire journey! Keep them coming as we continue to get answers to many more questions regarding Tripp. A HUGE thanks also to Kim Lucky from MCG and for all that she has done for us since our journey started there last June. She means the world to us and has made our trips and stays there so easy! Also, I would like to say thanks to the Grant family for their hospitality as we come and crash their house with a place to stay when we are back and forth between appointments.
T.R.I.P.P.
I am still learning about this blog and I am trying to figure out how to keep adding pictures! If you know how please let me know!! (Magaen????)
Saturday, January 21, 2012
reports from day 2
Day 2 included Endocrinology and NICU follow up. Dr. Houk, our endocrinologist, said that Tripp looks great. He is still on prelone, a steroid, that he has been on since birth. He was put on it because he had low blood sugar and this would help prevent seizures. He wants to see us again at the end of April to follow up and make sure his dosage is ok. He will hopefully out grow this and the adrenal deficiency will correct itself. At 1 year he will also check us to make sure Tripp is still growing at a good rate because he had concerns that his pituitary gland may not function properly. At 1 they need the growth hormone to continue growing whereas he can grow right now without it.
NICU follow up was great too. Dr. Boedy was in clinic today so we got to follow up with him. He cared for Tripp for the 19 days he was in the hospital. He also played for the Gators in football and has season tickets one section over from ours!!! He has become a part of our family so we were excited to get to follow up with him. He told us to watch out for hernias when the fluid starts draining after shunt is placed. He said its common for this to happen because the fluid comes in large amounts into stomach area and can cause them to pop up. He said we would then have to have a surgery to fix those if that happened. We asked him would we know if Tripp's shunt wasn't working? He said YES! It would be no doubt that something was wrong. He said we wouldn't have to kill ourselves to get to hospital but to just go on and go. It wouldn't be life or death but the symptoms would come very quickly.
Please just remember us, Tripp, and the drs as we prepare and go through with Tripp's surgery on Tuesday. We will be leaving Monday for Augusta.
Trust & Rely In the Power of Prayer!!!
NICU follow up was great too. Dr. Boedy was in clinic today so we got to follow up with him. He cared for Tripp for the 19 days he was in the hospital. He also played for the Gators in football and has season tickets one section over from ours!!! He has become a part of our family so we were excited to get to follow up with him. He told us to watch out for hernias when the fluid starts draining after shunt is placed. He said its common for this to happen because the fluid comes in large amounts into stomach area and can cause them to pop up. He said we would then have to have a surgery to fix those if that happened. We asked him would we know if Tripp's shunt wasn't working? He said YES! It would be no doubt that something was wrong. He said we wouldn't have to kill ourselves to get to hospital but to just go on and go. It wouldn't be life or death but the symptoms would come very quickly.
Please just remember us, Tripp, and the drs as we prepare and go through with Tripp's surgery on Tuesday. We will be leaving Monday for Augusta.
Trust & Rely In the Power of Prayer!!!
Thursday, January 19, 2012
reports from appointments
Well, we made is safely to and from Augusta. Thanks for all the calls, prayers, and texts. Tripp had his MRI Tuesday morning. It was very hard for them to find a vein for the medicine to go in. He screamed for 15 minutes while they looked. They finally got it in his foot. Well, after we left him as he was falling asleep things changed! The IV in his foot came out and started leaking in his foot. They then tried the other foot and it wouldn't stay. When the dr. came to get us as he was coming into recovery, she said "please don't kill me, but we had to use a vein in his head for iv." When we saw him, he had a fat foot, another bandaged foot, and a bandage on his head! He looked pitiful. He woke up happy and very hungry. The dr. told us just by comparing the old scan to this one, she could tell there was more fluid. We had to wait until 3 to see the neurosurgeon. He came in and agreed that there was building pressure and that we needed to have the surgery sooner than later. So Tripp is scheduled to have a shunt placed on Tuesday, January 24. He will have to spend at least 1 night in ICU and then hopefully will be able to go home. His recovery should last about 2 weeks. Please continue to send prayers our way. We are scared and excited all at the same time. So excited that he will be able to do "normal" things that a 4 month old should do. The dr. said that within the first 2 weeks his head should drastically change sizes. I am so eager to see what Tripp will be able to do (hold head up independently and completely roll over) with the new size. Pray that he will tolerate this shunt and that he will not have any complications.
I have to go pick up students from PE but I will update day two Augusta tonight.
Summer
T.R.I.P.P.
I have to go pick up students from PE but I will update day two Augusta tonight.
Summer
T.R.I.P.P.
Friday, January 13, 2012
Please Pray
I know it has been a while since I posted and I will catch you all up on the delivery and what has happened since but this is a little more URGENT. Please pass this to anyone that will join us in praying.
This is a copy of my sisters email from yesterday.
Tripp (our little miracle baby) needs our prayers. I just spoke with Summer a few minutes ago and she had just left Dr. Maria’s office (neurologist). She asked for me to send out this email to all our “prayer warriors. He said that he does not like that way that the soft spot feels and does not like the continued growth of Tripp’s head. He said when the growth is charted, he wants to see a curve but it shows more as a straight line. This concerns him and he feels like there is probably fluid build-up taking place that is causing pressure on the brain. He is ordering a CT and is going to set Tripp up an appointment with neurosurgeon to see about putting shunt in. Tripp is happy and content now and we do not want him to get sick by waiting too late for the shunt if it is needed.
Please pray for the DR’s as they make these decisions, as well as Summer, Tripp, John and Kinsley. Life is full of twists and turns but nothing is beyond our grasp if we remember we are in God’s hands and that he ultimately has a plan for each of us, including our little Tripp.
Thqnks!
Trust & Rely In Power of Prayer
This is a copy of my sisters email from yesterday.
Tripp (our little miracle baby) needs our prayers. I just spoke with Summer a few minutes ago and she had just left Dr. Maria’s office (neurologist). She asked for me to send out this email to all our “prayer warriors. He said that he does not like that way that the soft spot feels and does not like the continued growth of Tripp’s head. He said when the growth is charted, he wants to see a curve but it shows more as a straight line. This concerns him and he feels like there is probably fluid build-up taking place that is causing pressure on the brain. He is ordering a CT and is going to set Tripp up an appointment with neurosurgeon to see about putting shunt in. Tripp is happy and content now and we do not want him to get sick by waiting too late for the shunt if it is needed.
Please pray for the DR’s as they make these decisions, as well as Summer, Tripp, John and Kinsley. Life is full of twists and turns but nothing is beyond our grasp if we remember we are in God’s hands and that he ultimately has a plan for each of us, including our little Tripp.
Thqnks!
Trust & Rely In Power of Prayer
Thursday, September 8, 2011
To catch everyone up
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!
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, 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!!!!!
