" I want you to CHILL for the next month...... STRICT bed rest and doing nothing but chilling."
Those were Dr. Daneshmand's orders from our appointment on Friday....... Chill? Dr. D obviously doesn't know me very well...... How does one chill? I don't think I am even capable of chilling....... I just don't know how.
I had a rough weekend emotionally, and I'm preparing myself to have a rough week both physically and emotionally this week. Today is the only day this week that I don't have a doctors appointment, and having been on bed rest for basically the last three months, getting out of the house is sometimes physically hard on me, it brings on more contractions, more cramping, and seems to raise my blood pressure a little.
Friday of last week was hard for me, I had two doctors appointments that day, the first one was my weekly check with Dr. D at 10:30 and then we had Dylan's non stress test at 1pm, so my mom and I were going to grab lunch in between......... that didn't happen. Being the most amazing doctor that Dr. D is, sometimes he gets overbooked and because he spends so much time with each of his patients making sure they are doing ok and feeling comfortable and answering any and all questions, he runs behind sometimes............ Friday was one of those days....... We didn't end up getting out of my appointment until a little after 12.... and our next appointment was at 1, so we didn't really have time to go get something to eat in between...... and we decided to also just go over to my appointment at the hospital because during my appointment with Dr. D. he gave me an order to get some blood work done while I was at the hospital because my blood pressure has been a little bit high during my last two appointments, and he just wanted to rule out Pre-Eclampsia. During my appointment with Dr. D, we talked about the letter that we both received from Dylan's surgeon. Dr. D is not a fan of C-sections, he would rather not do them......... BUT ....... he said that from reading the reports from the cardiologist and the surgeon, that it looks like we might be leaning that way, and that they would do it at 39 weeks. With the reports the way they are, and because I have been contracting since 24 weeks, Dr. D. thinks that it might just be best to do the C-Section and have it planned so that all of the medical team is there, we can do it in the morning instead of me maybe going into labor at 2am and every body being tired and everything, and also because there is some indication that I might have some strictures and scaring on my cervix from a previous biopsy that was done years ago. Dr. D doesn't want me to do all the pushing and everything and then end up having to do an emergency C-section at the end anyway with a tired Uterus from pushing and contracting so long, he said it would increase the amount of bleeding I would have during the C-Section............. that's how I understood it, anyway....... I didn't really wanna hear what he was saying, but I did ask if I had to have a C-Section when I could see Dylan........ he said that I could see him the next day.... that they would wheel me over to the other hospital so I could see him........ I still don't want to wait a day to see him, but I guess it's better than not being able to see him at all until I was released like I thought it would be...... we haven't made any decisions yet, he said we won't make any decisions until after Wednesday of this week when we have Dylan's Echo......... but that its pretty much looking like a planned C-Section would be the best thing for us. :-(
So that brings me to this week....... They did the blood work last week to rule out Pre-Eclampsia, and I think everything came back ok, but Dr. D wanted me to do a 24 hour urine collection to test the protein. I guess its the last test, or the test that brings all the other results together to determine Pre-Eclampsia or not........ so thats what I'm doing today.... It's a pain in the butt!! It has to stay cold..... and I'm upstairs on bed rest so it's not like I can go downstairs to the fridge each time I have to use the rest room......... so the container is upstairs.. in a bucket of ice....... yeah, I know.... to much info?? :) Then I have to bring it with me tomorrow to the hospital when we go for Dylan's non stress test........ and then Wednesday morning we have a 6:45 appointment for Dylan's Echo where we will find out if his Atrial Septum is anymore restricted than it was the last Echo..... and then Thursday I have an appointment with Dr. D. for my weekly visit, and that's when we'll decide on and schedule the C-Section if that is the case....... and then Friday is another non stress test........ argh!! These might be NON stress tests for Dylan..... but they sure are stressful to me!
I've been trying to get everything I need to get done, done. setting up my bills for auto pay for the next two months, making all the phone calls I need to make, washing all of Dylan's socks and blankets, packing my hospital bag, etc. I can't believe its SOOO close. I am SO excited to meet my little boy, and SOO scared at whats to come after he's born. It's so hard to balance such a wide range of emotions without going insane.
I'm gonna sign off for now....... but I'll try and get on and update about Dylan's Echo, and the delivery plan after I find out on Thursday.
OH! Ps...... Dr. D took me off of the Nifedipine!!! YAY!!!! He said that the risks of the medicine outweight the benefits at this point, so he wants me to stop them. NO PROBLEM!! although..... I'm still feeling side effects from them....... my heart still races and pounds at times, but maybe it will take awhile to get out of my system.
ALSO....... we didn't talk much about it because I'm supposed to "Chill" for the time being........ but Dr. D mentioned to me that he would like me to help him create a leg off of his organization Miracle Babies, just for raising money for Cardiac Babies and their families.... I know that I'm going to have my hands full with Dylan and everything after he's born.... and I won't take on more than I can handle.......... but when I can handle it, I am SOOO doing it. I'm pretty excited about it :)
<3 to all!!!
Monday, February 28, 2011
Friday, February 18, 2011
A Letter from Dylan's Surgeon
I'm not feeling to hot right now..... both physically and mentally. :( I was back at the hospital yesterday in Triage due to a lot of cramping and some pressure....... I managed to skip all of the IV's and needles and all the other fun stuff and was only there for a few hours and then got to come home. I went to bed early last night trying to get some sleep in because I haven't been sleeping well, even with the Ambien that my doctor gave me.... I got a few good hours of sleep in, but was awake at 2am. I logged into Facebook on my phone just to see what I missed while I was sleeping and to check in for updates from a fellow Heart Mom whose little baby boy Travis had his 4th open heart surgery yesterday. :( They live in the area and Travis is seen at Rady's Childrens, where Dylan is going to be, and both Travis and Dylan have the same surgeon. I wish that I wasn't on bed rest, so that I could go visit and support you Nicole. I'm thinking about you and Travis every day and I'm always checking for updates <3
I wish that I didn't check my email........ inside my email was a letter from Dylan's surgeon Dr. Lamberti. He had sent me a copy of the letter that he sent to my Perinatologist, Dr. Daneshmand, about the meeting he had with Joe and I two weeks ago. He was just filling Dr. D in on what we discussed and his thoughts and expertise about what is going on and how to handle things. I don't know why the letter effected me so much last night, It's not like there was anything in there, that Dr. Lamberti didn't tell us, or discuss with us, I guess it was just hard to actually see it all in writing because I've been struggling with all of the information since our meeting two weeks ago. I'm having a hard time keeping strong. I don't know if I can do it. Everybody keeps telling me to try and not worry so much right now until Dylan is here, because sometimes things look worse than they are, and it's harder to get a clear picture and everything while Dylan is inside me, that they will know EXACTLY what we are dealing with once Dylan is here, and they can do a full work up and Echo on him being outside of me instead of trying to get a clear picture while inside. I get it............ I really do....... I know that there is nothing I can do about it right now......... actually nothing I can really do once he's born either......and that we don't know whats going to happen, and things might look better once he's here....... but my heart still hurts, I still cry every day, I still wish I could take away the pain I know he's going to go through, I still wish I could protect my precious baby boy. But I can't. I can't do anything, but sit here in bed and cry. Maybe I just need more time to be sad, before I can go back to being strong. Maybe I just need more time to cry for my baby boy before I have to be strong and not show him my fears. Maybe I'll be able to be the mommy and the fighter that he needs me to be when the time comes.... just maybe I'll be able to do that.
Dylan has another Non Stress Test today at the hospital that I need to get ready for, so I'll leave you with the letter that we got from Dr. Lamberti.
****************
I wish that I didn't check my email........ inside my email was a letter from Dylan's surgeon Dr. Lamberti. He had sent me a copy of the letter that he sent to my Perinatologist, Dr. Daneshmand, about the meeting he had with Joe and I two weeks ago. He was just filling Dr. D in on what we discussed and his thoughts and expertise about what is going on and how to handle things. I don't know why the letter effected me so much last night, It's not like there was anything in there, that Dr. Lamberti didn't tell us, or discuss with us, I guess it was just hard to actually see it all in writing because I've been struggling with all of the information since our meeting two weeks ago. I'm having a hard time keeping strong. I don't know if I can do it. Everybody keeps telling me to try and not worry so much right now until Dylan is here, because sometimes things look worse than they are, and it's harder to get a clear picture and everything while Dylan is inside me, that they will know EXACTLY what we are dealing with once Dylan is here, and they can do a full work up and Echo on him being outside of me instead of trying to get a clear picture while inside. I get it............ I really do....... I know that there is nothing I can do about it right now......... actually nothing I can really do once he's born either......and that we don't know whats going to happen, and things might look better once he's here....... but my heart still hurts, I still cry every day, I still wish I could take away the pain I know he's going to go through, I still wish I could protect my precious baby boy. But I can't. I can't do anything, but sit here in bed and cry. Maybe I just need more time to be sad, before I can go back to being strong. Maybe I just need more time to cry for my baby boy before I have to be strong and not show him my fears. Maybe I'll be able to be the mommy and the fighter that he needs me to be when the time comes.... just maybe I'll be able to do that.
Dylan has another Non Stress Test today at the hospital that I need to get ready for, so I'll leave you with the letter that we got from Dr. Lamberti.
****************
On February 9, 2011, I met with Krystal Clausen and Joe Perry to discuss their unborn child. Krystal is 29 years old. This is her first pregnancy. She is currently on bed rest for contractions which began in the 24th week of pregnancy. She has been in and out of the hospital for the treatment of her premature contractions. This male infant is due on March 31, 2011. Fetal echocardiography has identified a rather severe form of hypoplastic left heart syndrome. Mother is taking nifedipine for her preterm labor.
I reviewed the fetal echocardiogram reports in detail. I utilized a heart model and white board diagram to review the findings for Mother and Dad. I described normal anatomy and then I described the special findings in hypoplastic left heart syndrome. According to the most recent fetal echocardiogram, the patient has aortic valve atresia with severe hypoplasia of the mitral valve. The ascending aorta is described as severely hypoplastic. The atrial communication is mildly restrictive. I discussed the implications of these findings within the context of our usual treatment for hypoplastic left heart syndrome.
In general, there are four therapies which can be offered to a baby born with this diagnosis. Cardiac transplantation has been suggested as a solution for this complex cardiac anomaly. However, cardiac transplantation is an unattractive therapeutic option simply because of the lack of donor hearts that are available to us at the present time. In recent years, the Norwood procedure has become the standard of care for a baby born with hypoplastic left heart syndrome. The Norwood procedure was developed about 30 years ago at Boston Children’s Hospital. In the Norwood operation, the right ventricle is utilized as the systemic ventricle. The main pulmonary artery is connected to the aorta and the distal, narrow aorta is patched open. In the early days, a shunt from the innominate artery to the pulmonary artery was utilized to provide pulmonary blood flow. In recent years, we have favored the Sano/Norwood operation wherein pulmonary blood flow is provided by a conduit from the right ventricle to the pulmonary arteries. In either approach, the Norwood component is referred to as a stage I procedure. The Stage I operation is generally required during the first week or ten days of life. A second operation is necessary at four to six months of age when we connect the superior vena cava to the pulmonary artery (bidirectional Glenn). Finally, at about three years of age we connect the inferior vena cava to the pulmonary artery. The third stage operation is known as the Fontan. After the Fontan procedure, all blood flows in the normal pathways; however, there is no right ventricle or pumping chamber for the pulmonary circulation.
The operative risk for the stage I operation varies depending upon the anatomy and physiology of an individual baby. In a term infant with good anatomy, the operative risk can be as low as 10%. On the other hand, when there is an obstructed atrial septum and the baby is born prematurely, the risk is increased. In addition, a very small aorta will increase the risk somewhat. Baby Clausen appears to have an unfavorable anatomic configuration to his aorta. We are hopeful that there will be some growth and development of the ascending aorta during the next month of pregnancy.
In very high risk babies or in babies that are in poor condition soon after birth, the Hybrid approach has been utilized. In the Hybrid approach, the pulmonary arteries are banded and the ductus arteriosus is stented or maintained open with prostaglandin. The Hybrid approach can be used for a few days, a few weeks or as a replacement for the traditional stage I operation. The Hybrid operation may be a short term solution in babies born with aortic atresia. The presence of an obstructed atrial septum can result in poor respiratory function soon after delivery. If baby Clausen’s atrial septal obstruction progresses during the next several weeks, we will need to be prepared for an emergency cardiac catheterization soon after birth. On the other hand, if the atrial obstruction remains relatively mild, then the baby can be stabilized. The fourth option for management of the baby is utilized when the prognosis is grave. If a baby with unfavorable anatomy is born in very poor condition, supportive care can be rendered. If the baby does not turn the corner, then surgical treatment will be futile.
The parents have done some reading and research regarding the diagnosis. I have counseled them that the internet is loaded with stories regarding babies born with hypoplastic left heart syndrome. Some patients have a dramatically successful course, others are quite ill for a prolonged period of time following surgery. Our goal in the management of hypoplastic left heart syndrome is to utilize an approach which provides the best chance for long term survival coupled with the optimal neurodevelopmental outcome. Dr. Fripp is continuing to follow Krystal quite closely. He will be performing another fetal echocardiogram in early March. If the atrial septal defect is more obstructive at the next echocardiogram, then our approach to delivery must be adjusted since the baby is likely to be quite sick soon after he is born.
Thank you very much for allowing me to participate in the counseling of this couple anticipating the birth of their first child together. I am available to meet with them again should the need arise. If you have any questions regarding my analysis, please do not hesitate to call upon me at any time.
Time spent in consultation: 30 minutes
Kindest personal regards.
Sincerely yours,
John J. Lamberti, M.D.
************************************
Monday, February 14, 2011
Anxiety Overload
I have so many emotions and thoughts running around in my head, so please forgive me if this post is kinda random and out of order. I had a hard weekend, I was alone most of the time, which left me with all of my feelings, worries, fears and the internet, not always the best combination for me. I cried a lot, which is probably something I needed. Ever since we met with the surgeon and his cardiologist last week, I've just been even more anxious. It probably has to do with the fact that March 31st is getting closer and closer and the "countdown" has begun. I'm not ready yet, but then again, I don't think I'll ever be ready, as much as I want to meet our little guy, I wish I could just keep him "safe" inside me forever. Another thing that has been bothering me is that I don't think that I have all my questions answered, although it did work out so that we were able to sit down and talk with the surgeon for longer than we thought we were going to be able too, he still had to rush off to the OR and I don't think I was done talking or asking questions. After reading Dylan's latest Echo report and talking with the Surgeon, I learned that Dylan's heart is a little worse off than I guess I thought it was. I knew that his heart was not good obviously...... but I guess I didn't really understand how bad of a case of HLHS he had. The surgeon, Dr. Lamberti, seemed to be really unhappy about the size of Dylan's Aorta, it's severely hypoplastic, along with his Mitral Valve. He told us that the usual stay after the first surgery (the Norwood) was at least 3 weeks, if there were no complications. I asked him if the size of Dylan's Aorta meant that we would be in for a longer stay than 3 weeks and more complications, and he said that if the Aorta was going to give us problems then it would happen within the first couple of days after surgery.......... I didn't know what to say, or to ask then because I guess I was still trying to take it in and understand it, but now I wanna know what he meant by that. What happens if it "gives us problems"? What exactly does that mean? What kind of problems is he talking about? Does that mean that the surgery possibly won't work for him? Does that mean extra procedures? Does that mean that he won't be a candidate for the second and third surgery and will need a whole new heart instead? I just want answers... I just want somebody to tell me that everything is going to be ok, and that Dylan is going to be ok. But I know that I can't have that. I know that there are no promises, and that anything can happen after he's born. I'm just having a hard time keeping my hope because my fears are getting in the way. I'm trying my best to stay positive and to be strong, but I'm having a really hard time with that right now.
I'm also feeling very "nesty" I guess. I'm freaking out. I know that Dylan won't be coming home right away, so I still have time to set things up and get things ready for him, but I wish I could do all of that now. I feel like I don't have and can't get anything ready. I need to put up all his clothes and stuff we got from the baby shower, but I don't even have a dresser for him yet. We still need a car seat to take him home when he's ready, but that is going to have to wait until after he's born and I can get to the store because I want to be able to pick it out myself which I can't do while I'm on bed rest. I want to pack my bag for the hospital, but I don't even have a nice enough bag to pack anything in right now, and I can't even get to the store to get any of the stuff that I need or want. There is just still so much to do, and I feel like I either can't physically do it because i'm stuck on bed rest, or I just don't really know what to do. I want to be able to get my maternity pictures done, but that involves a lot of planning, I need my hair done first, which has to involve having my hairdresser/friend come to my house to do my hair because I can't really go to the salon, and then getting permission from my doctor to even be able to do so. I'm just frustrated, and anxious, and I feel stuck. Stuck in my bed, Stuck in my head, and stuck drowning in my thoughts and emotions.
I think the reason why I was so sad this weekend was because its hard being stuck in the house while you watch everybody else go out and play. My parents celebrated their Valentines day together this weekend, they went out and did some photography and had dinner together and everything, and I wanted to go. Not on their "valentines date" ......... but I just wanted to GO ....... I wanted to go take pictures, I wanted to be outside, I wanted to have some contact with the outside world before being in the hospital for whoever know how long.
Tomorow I have two doctor's appointments. The first one is with my Perinatiologist for my weekly cervical and general check up, and then I have to head over to the Hospital to do my Non Stress Test. Which by the way, I thought that it was just going to be like when I've been in the hospital, where they hook Dylan up to a monitor and monitor his heart rate and such...... well I've been informed that it's not like that......... Apparently, they will check my amniotic fluid and everything, and then they will hook Dylan up to a monitor and I'll have this little button that I push whenever I feel him move......... and if he's not moving as much as they want him to be, then they either shock him, or do some vibrating thing on my belly to get him to move.... How mean! Poor little guy. So as much as I'm looking forward to my now 3 weekly doctors visits because that means that I can actually get out of the house........ I'm also really scared because that means that's 3 times a week that I have a chance for them to KEEP me in the hospital after my appointments, which they seem to like to do. So i'll write and update after Dylan's appointments tomorrow..... and hopefully I'll be writing from HOME!
<3
I'm also feeling very "nesty" I guess. I'm freaking out. I know that Dylan won't be coming home right away, so I still have time to set things up and get things ready for him, but I wish I could do all of that now. I feel like I don't have and can't get anything ready. I need to put up all his clothes and stuff we got from the baby shower, but I don't even have a dresser for him yet. We still need a car seat to take him home when he's ready, but that is going to have to wait until after he's born and I can get to the store because I want to be able to pick it out myself which I can't do while I'm on bed rest. I want to pack my bag for the hospital, but I don't even have a nice enough bag to pack anything in right now, and I can't even get to the store to get any of the stuff that I need or want. There is just still so much to do, and I feel like I either can't physically do it because i'm stuck on bed rest, or I just don't really know what to do. I want to be able to get my maternity pictures done, but that involves a lot of planning, I need my hair done first, which has to involve having my hairdresser/friend come to my house to do my hair because I can't really go to the salon, and then getting permission from my doctor to even be able to do so. I'm just frustrated, and anxious, and I feel stuck. Stuck in my bed, Stuck in my head, and stuck drowning in my thoughts and emotions.
I think the reason why I was so sad this weekend was because its hard being stuck in the house while you watch everybody else go out and play. My parents celebrated their Valentines day together this weekend, they went out and did some photography and had dinner together and everything, and I wanted to go. Not on their "valentines date" ......... but I just wanted to GO ....... I wanted to go take pictures, I wanted to be outside, I wanted to have some contact with the outside world before being in the hospital for whoever know how long.
Tomorow I have two doctor's appointments. The first one is with my Perinatiologist for my weekly cervical and general check up, and then I have to head over to the Hospital to do my Non Stress Test. Which by the way, I thought that it was just going to be like when I've been in the hospital, where they hook Dylan up to a monitor and monitor his heart rate and such...... well I've been informed that it's not like that......... Apparently, they will check my amniotic fluid and everything, and then they will hook Dylan up to a monitor and I'll have this little button that I push whenever I feel him move......... and if he's not moving as much as they want him to be, then they either shock him, or do some vibrating thing on my belly to get him to move.... How mean! Poor little guy. So as much as I'm looking forward to my now 3 weekly doctors visits because that means that I can actually get out of the house........ I'm also really scared because that means that's 3 times a week that I have a chance for them to KEEP me in the hospital after my appointments, which they seem to like to do. So i'll write and update after Dylan's appointments tomorrow..... and hopefully I'll be writing from HOME!
<3
Thursday, February 10, 2011
2 Doctors, A NICU, and a Crying Mommy
Yesterday was a very long day for Joe and I. It all started at 4:30am when we had to wake up to get ready to be there on time. Stupid me, knew there was a McDonald's in the hospital, and since it's a hospital, I figured they would either be open 24/7 or have very early hours or something, especially since the ones just around town open by at least 6............ We had to check in at Cardiology at 6:30am, so I figured if we got there by 6am or a little before that we would have time to get me a wheelchair ( since I'm on bed rest and not supposed to be up walking around), and get us something to eat real quick because I knew we would be hungry. Well....... apparently the McDonalds there doesn't open until 7am. Ugh, It's a good thing I threw a little snack bar thing in my purse before we left in the morning. So we get my wheelchair, and Joe wheel's me upstairs to cardiology.... and of course nobody is there........ but at least the door to the waiting room was unlocked... so we went inside, turned on the lights, and waited...... and waited, and waited........ they told us to be there at 6:30 for check in, but they didn't show up until 6:45. We checked in, and then they took us back a little after 7am for the Echo......towards the end of the Echo, Dr Fripp came in and I introduced him to Joe. After the Echo was done, we didn't stay that long to talk to him because we still have an appointment with the Surgeon downstairs at 8:30, but Joe was able to ask him some questions, and I asked him about Dylan's Atrial Septum which is what he said looked a little restricted last time and wanted to keep an eye on. He told me that it does look a little more restricted than last time, but at this time is still considered "mildly restricted" ....... He want's to do another Echo on March 2nd, when I'll be 36 weeks, so check it again and see if its gotten any worse........ at which time, he again mentioned having to schedule a C-section because of the need for immediate intervention. So let's all just hope that it stays only "mildly" restrictive.
We then went downstairs to meet with Dr. Lamberti, who will be Dylan's surgeon. I was told when I made the appointment that there is always a possibility of him not being there due to emergency surgery or some type of event like that, but that if that happened, they would call me beforehand........ Well, it turns out that they added a pacemaker revision to his schedule for yesterday morning, but they didn't call us the night before because he knew that I would already be in the hospital anyway for the Echo we had at Cardiology right before.......... So when we went to meet with him, we were told that he wasn't there, that he was in surgery, but that he might have a little time in between surgeries to meet with us real quick for like 10 minutes, and then we would have to schedule another time to come talk to him on the weekend or something. We were very disappointed because of course we were looking forward to just getting this all done in one day and have some answers and more information, but there was really nothing we could do........ 10 minutes was better than nothing that day right? At least we could meet him and get a feel for him and what he's like....... so we said that we would take the 10 minutes and then try and reschedule something later. He was still in surgery for about another hour, so we decided to go get something to eat real quick at McDonalds, and then we went back to Dr. Lamberti's office. He was still in surgery, so the lady at his office arranged for us to take a quick tour of the NICU. For being what it is, the NICU at Rady's Children's is very nice, its all brand new, there are two sides of the NICU, the east and the west..... Dylan will be on the West side, which is where all the cardiac babies are. All of the babies on that side are either waiting for surgery or have had surgery and are recovering. All of the nurses on that side are specially trained to take care of the cardiac babies, so that makes me feel better knowing that is what they specialize in and know how to take care of them. It's divided into a whole bunch of different rooms, with only 2 babies per room, so you kinda have somewhat of a little more privacy when you are there with your baby. We can't stay with him though :( The social worker told me that if I wanted, we could put our name on the list at the Ronald McDonald house that is directly across the street if I wanted. She said that priority is given to the families who live farther away, but that there are still rooms usually available that we might be able to get. I haven't decided if I want to do that yet....... Of course I want to be as close to Dylan the whole time, knowing that he is within 3 minutes from me would make me feel so much better, but I'm also not comfortable knowing that I could possibly be taking a room from a family who is from out of town or further from the hospital than I am, unless it could be worked out that if there was a room available and we took it, that if a family came in after us that needed it more, that they could kick us out and give them the room. I'm not sure how everything is going to work, I'll talk to the social worker some more, but more than likely we'll just end up going back and forth from home every day. I thought I was doing pretty good when they first wheeled me into the NICU........ I was fighting back the tears, and I was doing a good job at it......... Until the social worker started telling me how she can't even imagine how and what i'm feeling having to go through this, and with this being my first baby and everything........ I just started crying.... and then she asked me if I wanted to actually go into one of the rooms and see one of the babies........ I couldn't do it.... Since Dylan's diagnosis, I've seen so many pictures and videos on the internet of how the babies look after surgery with all the tubes and wires and machines, and its such a hard thing to see...... my heart aches everytime that I see the pictures and videos, but its even worse actually being in the NICU with the babies..... knowing that my little boy will be right there with them soon. I know it's necessary, and its the only way to give him a chance at having a decent life........ but its just so hard to see.
After the NICU tour we went back to wait for Dr. Lamberti. We were only expecting to be able to meet him real quick and not be able to have many questions answered, but we actually got to speak with him for about 45 minutes before he was called back to the OR. We like him. He's very knowledgeable, easy to talk to, and very nice. He read, and went over the report on the Echo from Dr. Fripp we just had earlier that morning ( I wasn't expecting the report to be done so soon), and this is what the summary of the Echo said :
1. HLHS with a mildly restrictive atrial communication
2. Atretic aortic valve
3. Severely Hypoplastic mitral valve
4. Severely Hypoplastic ascending aorta
5. Severely Hypoplastic left ventricle
6. Left to right atrial shunt
Dr. Lamberti said that Dylan having a Severly hypoplastic aorta is not good for him at all. He doesn't have the best anatomy for a favorable non complicated case of HLHS ( as "non complicated" as HLHS can really be) but that he has seen babies with the anatomy that Dylan has and they are doing good, so I'm not giving up. It just might mean that the fight will be longer or harder, and there might be more hurdles along the way..... but we're gonna be right there fighting with him. He said that a lot of Dylan's outcome will be based on his gestational age, his weight, and his ASD ( atrial septum defect) .......... So the best thing I can do for Dylan right now is to KEEP HIM INSIDE!! The closer to 40 weeks that he's born, and the more he weighs, the better for him........... I don't have any control over his ASD.... all I can hope is that it stays only mildly restrictive and doesn't get any worse for him.
I think I covered the basics of what we were told yesterday, maybe I forgot a few things, I'm still recovering from being out bed and the long day yesterday, so I'm still really tired. I just wanted to give everybody the gist of what went on yesterday and most of the information that we were given. Overall, yesterday was a productive day, and we got a lot of the questions we wanted answered. I'm not quite sure if any of that makes me feel any better or eases any of my fears, but at least its all over with. Thank you everybody for keeping us in your thoughts, and for all the kind messages yesterday. It's so greatly appreciated! I'm 33 weeks today, so only 7 more to go! Holy Cow!
Love and Heart Hugs to everybody!! <3
We then went downstairs to meet with Dr. Lamberti, who will be Dylan's surgeon. I was told when I made the appointment that there is always a possibility of him not being there due to emergency surgery or some type of event like that, but that if that happened, they would call me beforehand........ Well, it turns out that they added a pacemaker revision to his schedule for yesterday morning, but they didn't call us the night before because he knew that I would already be in the hospital anyway for the Echo we had at Cardiology right before.......... So when we went to meet with him, we were told that he wasn't there, that he was in surgery, but that he might have a little time in between surgeries to meet with us real quick for like 10 minutes, and then we would have to schedule another time to come talk to him on the weekend or something. We were very disappointed because of course we were looking forward to just getting this all done in one day and have some answers and more information, but there was really nothing we could do........ 10 minutes was better than nothing that day right? At least we could meet him and get a feel for him and what he's like....... so we said that we would take the 10 minutes and then try and reschedule something later. He was still in surgery for about another hour, so we decided to go get something to eat real quick at McDonalds, and then we went back to Dr. Lamberti's office. He was still in surgery, so the lady at his office arranged for us to take a quick tour of the NICU. For being what it is, the NICU at Rady's Children's is very nice, its all brand new, there are two sides of the NICU, the east and the west..... Dylan will be on the West side, which is where all the cardiac babies are. All of the babies on that side are either waiting for surgery or have had surgery and are recovering. All of the nurses on that side are specially trained to take care of the cardiac babies, so that makes me feel better knowing that is what they specialize in and know how to take care of them. It's divided into a whole bunch of different rooms, with only 2 babies per room, so you kinda have somewhat of a little more privacy when you are there with your baby. We can't stay with him though :( The social worker told me that if I wanted, we could put our name on the list at the Ronald McDonald house that is directly across the street if I wanted. She said that priority is given to the families who live farther away, but that there are still rooms usually available that we might be able to get. I haven't decided if I want to do that yet....... Of course I want to be as close to Dylan the whole time, knowing that he is within 3 minutes from me would make me feel so much better, but I'm also not comfortable knowing that I could possibly be taking a room from a family who is from out of town or further from the hospital than I am, unless it could be worked out that if there was a room available and we took it, that if a family came in after us that needed it more, that they could kick us out and give them the room. I'm not sure how everything is going to work, I'll talk to the social worker some more, but more than likely we'll just end up going back and forth from home every day. I thought I was doing pretty good when they first wheeled me into the NICU........ I was fighting back the tears, and I was doing a good job at it......... Until the social worker started telling me how she can't even imagine how and what i'm feeling having to go through this, and with this being my first baby and everything........ I just started crying.... and then she asked me if I wanted to actually go into one of the rooms and see one of the babies........ I couldn't do it.... Since Dylan's diagnosis, I've seen so many pictures and videos on the internet of how the babies look after surgery with all the tubes and wires and machines, and its such a hard thing to see...... my heart aches everytime that I see the pictures and videos, but its even worse actually being in the NICU with the babies..... knowing that my little boy will be right there with them soon. I know it's necessary, and its the only way to give him a chance at having a decent life........ but its just so hard to see.
After the NICU tour we went back to wait for Dr. Lamberti. We were only expecting to be able to meet him real quick and not be able to have many questions answered, but we actually got to speak with him for about 45 minutes before he was called back to the OR. We like him. He's very knowledgeable, easy to talk to, and very nice. He read, and went over the report on the Echo from Dr. Fripp we just had earlier that morning ( I wasn't expecting the report to be done so soon), and this is what the summary of the Echo said :
1. HLHS with a mildly restrictive atrial communication
2. Atretic aortic valve
3. Severely Hypoplastic mitral valve
4. Severely Hypoplastic ascending aorta
5. Severely Hypoplastic left ventricle
6. Left to right atrial shunt
Dr. Lamberti said that Dylan having a Severly hypoplastic aorta is not good for him at all. He doesn't have the best anatomy for a favorable non complicated case of HLHS ( as "non complicated" as HLHS can really be) but that he has seen babies with the anatomy that Dylan has and they are doing good, so I'm not giving up. It just might mean that the fight will be longer or harder, and there might be more hurdles along the way..... but we're gonna be right there fighting with him. He said that a lot of Dylan's outcome will be based on his gestational age, his weight, and his ASD ( atrial septum defect) .......... So the best thing I can do for Dylan right now is to KEEP HIM INSIDE!! The closer to 40 weeks that he's born, and the more he weighs, the better for him........... I don't have any control over his ASD.... all I can hope is that it stays only mildly restrictive and doesn't get any worse for him.
I think I covered the basics of what we were told yesterday, maybe I forgot a few things, I'm still recovering from being out bed and the long day yesterday, so I'm still really tired. I just wanted to give everybody the gist of what went on yesterday and most of the information that we were given. Overall, yesterday was a productive day, and we got a lot of the questions we wanted answered. I'm not quite sure if any of that makes me feel any better or eases any of my fears, but at least its all over with. Thank you everybody for keeping us in your thoughts, and for all the kind messages yesterday. It's so greatly appreciated! I'm 33 weeks today, so only 7 more to go! Holy Cow!
Love and Heart Hugs to everybody!! <3
Tuesday, February 8, 2011
I may be a Heart Mom..............
but I'm still Heart Stupid. I'll explain what I mean by that, but first let me tell you about our appointment yesterday. Yesterday's appointment was for two different reason's, one was to check my cervix, and the other was a Fetal Growth Scan to make sure that Dylan is growing at the rate that he should. They say that he's doing great and growing right on time, the estimate him to weigh 4lbs 3oz right now. Wowzers! I can't believe he'll probably be twice the size or close to it by the time I have him (hopefully) ....... the bigger, the better........ not for me..... but for him. My cervix hasn't changed much since I was last in the hospital 3 weeks ago.... it's still short at 2.5, but holding steady since it was at 2.6 when I was discharged from the hospital........ so that's good. So I still get to stay at home instead of staying in the hospital, but next week we have to start going in for NST's (Non Stress Tests) to monitor how he's doing twice a week, and I still have to see my Peri once a week for a cervical check, so that means 3 doctors appointments a week at least from now until he's born........ at least it will give me something to do instead of sitting in bed all day, I just feel bad that I have to drag somebody with me all the time, I guess I could go by myself, but seeing as I seem to have a habit of going in for a doctors appointment, and end up being admitted into the hospital, I'd rather have somebody with me, so that I'm not alone through all of this.
So here is what I mean by "Heart Stupid" ......... You would think that after getting Dylan's diagnosis and all the research I have done on HLHS and all the information that I've been given, that I would be some sort of heart expert right? Wrong! I just don't get it........ I've never been the best Anatomy student, and I just don't understand how the heart works, I get the basics....... but there are all these different chambers, valves, ventricles, and veins...... It's just all really overwhelming for me. I've had pictures drawn for me, everything explained to me and I still don't completely get it......... I probably never will. All I know is that my little boy's heart doesn't work like it's supposed to. I get the gist of Hypoplastic Left Heart Syndrome...... but I still don't understand why MY son's heart in particular doesn't work. HLHS is a syndrome......... meaning there are many different parts of the heart that can be affected and not every baby has the same valves and veins and artery's affected. I didn't get much information from the first Cardiologist who gave us our diagnosis because I had NO idea this kind of heart defect even existed before, and I had a hard time processing anything that was being said to me at the time...... and the second Cardiologist we saw didn't really explain much either....... or maybe I just didn't ask the right questions..... because I don't know what the right questions ARE. I'm hoping that the surgeons might be able to better explain to me what exactly is wrong with Dylan's heart, and what they are going to need to do to make it functionable for him. Here is what the report said from his first Echo on December 6th, 2010
1. Fetal hypoplastic left heart syndrome
2. Mitral Valve atresia and Aortic Valve atresia
3. Suspected Endocardial fibroelastosis.
So as far as I know it seems that its just his Mitral and Aortic Valves that are effected, right? But then on our second Echo, Dr. Fripp told me that he want's to keep an eye on his Atrial Septum because it looked a little small on the scan..... he said that he doesn't see it being a real big problem unless it gets any smaller, or closes, so he wants to keep an eye on it with another Echo ( which we will have tomorrow). He said that if it got any smaller, that I might have to have a C-Section because Dylan would need immediate intervention right after he was born. I'm really hoping that doesn't happen. I'm really hoping that he will be able to have at least a day or two before he really has to start fighting for his life.
So that's where we are at right now. Tomorrow is the big day starting at about 5:30 in the morning. We have his Echo and meeting with the Cardiologist first thing in the morning, and then its off to meet with the Surgeon's right after, and then to tour the NICU and the hospital and everything after that. I am having MAJOR anxiety over this right now. I thought I would be happy about the appointments tomorrow...... that I would feel better after meeting the surgeon and being able to ask questions, and just know a lot more about whats going to happen and what to expect........ but I'm not happy........ I'm scared....... It's just making it a little to real for me right now. It's always been real.... but this just makes it feel closer I guess ........ and I'm not ready. Before I left my doctors yesterday we scheduled each of my one week appointments up until the time Dylan is due........ and she printed it out for me ..... looking at it kind of just made it all sink in...... because there are only 7 appointments scheduled....... meaning at the most only 7 more weeks until Dylan is here, and until we have to start dealing with everything that I don't know how to deal with. I'm ready to meet my baby boy.......... but I don't know if I'm ready to be as strong as he needs me to be.
Thank you everybody for all of your love and support to Joe and I through this, it really means the world to us. I don't know what we would have done without our friends and family. Heart HUGS to everybody!!!
And remember... this week, Feb 7-14 is CHD Awareness Week!!! Help us spread the word!! <3
So here is what I mean by "Heart Stupid" ......... You would think that after getting Dylan's diagnosis and all the research I have done on HLHS and all the information that I've been given, that I would be some sort of heart expert right? Wrong! I just don't get it........ I've never been the best Anatomy student, and I just don't understand how the heart works, I get the basics....... but there are all these different chambers, valves, ventricles, and veins...... It's just all really overwhelming for me. I've had pictures drawn for me, everything explained to me and I still don't completely get it......... I probably never will. All I know is that my little boy's heart doesn't work like it's supposed to. I get the gist of Hypoplastic Left Heart Syndrome...... but I still don't understand why MY son's heart in particular doesn't work. HLHS is a syndrome......... meaning there are many different parts of the heart that can be affected and not every baby has the same valves and veins and artery's affected. I didn't get much information from the first Cardiologist who gave us our diagnosis because I had NO idea this kind of heart defect even existed before, and I had a hard time processing anything that was being said to me at the time...... and the second Cardiologist we saw didn't really explain much either....... or maybe I just didn't ask the right questions..... because I don't know what the right questions ARE. I'm hoping that the surgeons might be able to better explain to me what exactly is wrong with Dylan's heart, and what they are going to need to do to make it functionable for him. Here is what the report said from his first Echo on December 6th, 2010
1. Fetal hypoplastic left heart syndrome
2. Mitral Valve atresia and Aortic Valve atresia
3. Suspected Endocardial fibroelastosis.
So as far as I know it seems that its just his Mitral and Aortic Valves that are effected, right? But then on our second Echo, Dr. Fripp told me that he want's to keep an eye on his Atrial Septum because it looked a little small on the scan..... he said that he doesn't see it being a real big problem unless it gets any smaller, or closes, so he wants to keep an eye on it with another Echo ( which we will have tomorrow). He said that if it got any smaller, that I might have to have a C-Section because Dylan would need immediate intervention right after he was born. I'm really hoping that doesn't happen. I'm really hoping that he will be able to have at least a day or two before he really has to start fighting for his life.
So that's where we are at right now. Tomorrow is the big day starting at about 5:30 in the morning. We have his Echo and meeting with the Cardiologist first thing in the morning, and then its off to meet with the Surgeon's right after, and then to tour the NICU and the hospital and everything after that. I am having MAJOR anxiety over this right now. I thought I would be happy about the appointments tomorrow...... that I would feel better after meeting the surgeon and being able to ask questions, and just know a lot more about whats going to happen and what to expect........ but I'm not happy........ I'm scared....... It's just making it a little to real for me right now. It's always been real.... but this just makes it feel closer I guess ........ and I'm not ready. Before I left my doctors yesterday we scheduled each of my one week appointments up until the time Dylan is due........ and she printed it out for me ..... looking at it kind of just made it all sink in...... because there are only 7 appointments scheduled....... meaning at the most only 7 more weeks until Dylan is here, and until we have to start dealing with everything that I don't know how to deal with. I'm ready to meet my baby boy.......... but I don't know if I'm ready to be as strong as he needs me to be.
Thank you everybody for all of your love and support to Joe and I through this, it really means the world to us. I don't know what we would have done without our friends and family. Heart HUGS to everybody!!!
And remember... this week, Feb 7-14 is CHD Awareness Week!!! Help us spread the word!! <3
Monday, February 7, 2011
A Heart filled Baby Shower
Before I get to telling you how awesome my Baby Shower was on Saturday, I'll follow up on my last post about my doctors appointment........... or should I say, my NON doctors appointment! As soon as I got done posting my last post on Thursday about how nervous I was about going to my doctors for my cervical check, I got a phone call from the doctors office confirming my appointment........... only they were confirming an appointment that shouldn't have been. When I got released from the hospital 3 weeks ago, I was told to call the office and make 3 appointments......... first appointment was for my 3 hour glucose for the following week....... the next appointment was for a Cervical Check with Dr. Daneshmand the next week, and then a Fetal Growth Scan for the next....... I made those appointments and double checked that the appointments were set up in that order before I got off the phone and everything seemed to be good......... so when they called to confirm my Ultrasound with some doctor that I had never seen on the day that was supposed to be my Cervical Check with my doctor, I got quite upset....... Why was I set up for an Ultrasound?? That was supposed to be the next week..... I don't need TWO ultrasounds a few days apart, I need a cervical check and THEN the ultrasound..... ugh, luckily the ultrasound was scheduled for Monday ( which is today) WITH my doctor who I was supposed to have the cervical check with, so I just canceled the appointment I had on Thursday, and figured its only a few days in between, I'll wait until Monday for the ultrasound and my doctor can do the cervical check at the same time............. So that brings us to today.... Today is the appointment....... For the Cervical Check, and the Fetal Growth Scan to make sure Dylan is growing at the rate that he should be......... I'm not so nervous for the Fetal Growth Scan because Dylan has always been doing really good on all his scan's (besides his heart) and his heart rate is always good, It's ME that I'm worried about........ the cervical check........ ugh, PLEASE let it be ok!! We have a BIG day on Wednesday with the Cardiologist and his Echo, and the meeting with the Surgeon's and the tour of the NICU and everything...... I CAN'T be sent back to the Hospital. I can't miss those meetings. The appointment is at 1pm today........... so keep us in your thoughts! <3
Ok......... Now on to the Baby Shower! :)
I couldn't have asked for a better baby shower. I LOVED it!! We had a really good turn out, and everything went very smoothly, except for a little mix up with the balloons, but that was all figured out. It was so great seeing everybody. Pretty much, everybody that was there was seeing my belly for the first time!! I haven't gotten to see any of my friends, or Joe's family pretty much since I started showing because of being in and out of the hospital and being stuck at home on bed rest, so it was nice being able to show off my belly :)
AND.... On thursday evening, I got THE best surprise!!! I was sitting in my bed, just watching TV, and in walks my cousin....... from TEXAS!! I had NO idea that she was flying in for my baby shower!! They all kept it a secret from me for over a month!! I started crying the minute I hugged her! I love you Mandy!! <3
It was so amazing to have so many people around me that I know care so much about me and Dylan, and Joe, and our family. It was so great to see everybody sitting around in a circle talking with each other and laughing and joking with each other, when a lot of the people didn't even know each other........... I was afraid that there might be some awkward silences ( because I've been at showers before where nobody really knew each other, and it was weird) ......... but it was great! NO silence..... Everybody was talking to each other, and you could really feel the Love in the room. AND...... I didn't even cry!!! YaY ME!!! I might have thought I was going to cry maybe once, but I powered through it :) I can't thank everybody enough for coming, and for making Saturday such a special day for me!! I love all my friends and family, and I am SOOO thankful for all of the support you guys have given us. We wouldn't be able to make it through this without you!!
So here are some pictures of my HEART themed Baby Shower <3<3<3
Ok......... Now on to the Baby Shower! :)
I couldn't have asked for a better baby shower. I LOVED it!! We had a really good turn out, and everything went very smoothly, except for a little mix up with the balloons, but that was all figured out. It was so great seeing everybody. Pretty much, everybody that was there was seeing my belly for the first time!! I haven't gotten to see any of my friends, or Joe's family pretty much since I started showing because of being in and out of the hospital and being stuck at home on bed rest, so it was nice being able to show off my belly :)
AND.... On thursday evening, I got THE best surprise!!! I was sitting in my bed, just watching TV, and in walks my cousin....... from TEXAS!! I had NO idea that she was flying in for my baby shower!! They all kept it a secret from me for over a month!! I started crying the minute I hugged her! I love you Mandy!! <3
It was so amazing to have so many people around me that I know care so much about me and Dylan, and Joe, and our family. It was so great to see everybody sitting around in a circle talking with each other and laughing and joking with each other, when a lot of the people didn't even know each other........... I was afraid that there might be some awkward silences ( because I've been at showers before where nobody really knew each other, and it was weird) ......... but it was great! NO silence..... Everybody was talking to each other, and you could really feel the Love in the room. AND...... I didn't even cry!!! YaY ME!!! I might have thought I was going to cry maybe once, but I powered through it :) I can't thank everybody enough for coming, and for making Saturday such a special day for me!! I love all my friends and family, and I am SOOO thankful for all of the support you guys have given us. We wouldn't be able to make it through this without you!!
So here are some pictures of my HEART themed Baby Shower <3<3<3
Me before the Shower @ 32 Weeks
My wonderful amazing cousin Mandy!
Dylan's cute little Elephant that I'm gonna sleep with before he's born to leave with him at the Hospital
Part of the table decorations. My mom and sister did an amazing job! <3
Dylans Cake!!
The Diaper Cake that Joe's mom made!! it was so beautiful!
Me and Joe's Mom :)
Me and my friend Heidi.... She's due about a week and a half after me :)
Both of Dylan's Grandma's <3
Me and my Mommy
Me and Lacy <3
Me and Nicole!! <3
My beautiful niece Allysa <3
My friend Mindy! <3
Me and my amazing Sister <3
Mindy, Me, and my Cousin <3
My cousin, and my sister with Dylan <3
Wednesday, February 2, 2011
Dynamic Cervix anyone??
So tomorrow is my weekly "cervical check" and I'm nervous as hell. I don't wanna go. The ONLY reason why I want to go is because my Peri is awesome, and every time we have to do a check, he tries to get me a good 3D picture of Dylan if he's in the right position, so getting to see my little man every week is a plus. The reason as to why I have to get my cervix checked every week is because I have what is called a "Dynamic Cervix" ......... meaning that it changes in length without any notice, the lowest that it has gotten so far is a 2.0 which was why I was in the hospital again for a week this last time, but it can change in length and be back up to about a 3.0 the next week....... my cervix is very "untrustworthy" as one doctor had put it, which is why I'm supposed to be on strict bed rest until Dylan is born. The more pressure and weight I have on my cervix, the more it causes my cervix to shorten, which is why as Dylan continues to grow and weigh more, its even more important for me not to be up on my feet at all. The last time I had my cervix checked was two weeks ago when they released me from the hospital, it was back up to a 2.6 ....... which still isn't the greatest... they like it to be at least 3.0 or above.... but it was enough for him to let me come home...... with the knowledge that if it ever goes back down to below a 2.0 that I would be back in the hospital until Dylan is born. I don't want to be back in the hospital. I don't want to have any more IV's put in ( I already have two matching scars on each hand from them) I don't want to be put back on Magnesium, I don't want to be hooked up to monitors, and be woken up every 2-4 hours. I don't want to spend any more time in the Hospital around monitors, and wires, and beeping machines than I have to before Dylan is born seeing as we'll be spending a lot of time in there after he is born. I'm frustrated that THIS is my first experience of pregnancy, and becoming a mother. I'm sad that I'll probably not be able to get my Maternity pictures done. I'm sad that I have to be in bed all day instead of being able to go to the store and walk down the baby isle when I want too..... I'm sad that I'm not buying cute little shirts to show off my cute little belly because I can't go anywhere to wear them. I'm sad that I can't just enjoy BEING pregnant and doing "normal" things before Dylan gets here, because I know that the real fight starts after Dylan is born. I know that all of those things are not as important as keeping Dylan inside for as long as possible to give him the best chance at fighting, but I can't help but be sad about them.
So I got a little off track of what I wanted this post to be about, but my fingers wouldn't let me stop typing :)
THE point is......... tomorrow is my next cervical check. Let's hope that it has not gone below a 2.0 and that I get to come home from the doctors appointment instead of getting shipped back to the hospital for good....... I can't go back to the hospital.... we have plans of sitting around and eating pizza and cake, and candy and celebrating our little peanut on Saturday...... and I've been looking forward to my cake ALL week! SO THERE you stupid Dynamic Cervix!! It's already been decided, you WILL cooperate tomorrow! (please!) :)
And P.S. ............ Diabetes test came back perfect.... so we're good there ;)
<3 hugs to every body!!!
So I got a little off track of what I wanted this post to be about, but my fingers wouldn't let me stop typing :)
THE point is......... tomorrow is my next cervical check. Let's hope that it has not gone below a 2.0 and that I get to come home from the doctors appointment instead of getting shipped back to the hospital for good....... I can't go back to the hospital.... we have plans of sitting around and eating pizza and cake, and candy and celebrating our little peanut on Saturday...... and I've been looking forward to my cake ALL week! SO THERE you stupid Dynamic Cervix!! It's already been decided, you WILL cooperate tomorrow! (please!) :)
And P.S. ............ Diabetes test came back perfect.... so we're good there ;)
<3 hugs to every body!!!
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