Baby Andrew's Journey

Update

2010-12-29T11:16:00.003-05:00

So it seems like forever since I have updated, which I know it has been, but really dont have anything to update about except the fact that Andrews stone has finally come in. It is very beautiful and I am very happy with how it turned out :). I dont have pictures but will take some soon and post.

I also have changed jobs and it is the best decision of I have made. I used to work for the federal governement and left that job after being there for almost 8 years. Some people might say I am crazy leaving a government job, but after I have left I am not seeing the benefits of working for the government. Ironically enough, my new boss is Vicki Jensen who is Jack's mom. Many people know Jack Jensen and his miracle story. If Andrew wasnt diagnosed with CDH, I would not have met Vicki and probably would not have gotten this oppurtunity to work where I am today!

We have been very blessed this year and am looking forward to the many more memories my kids give me in the years to come!

really long and overdue update

2010-03-30T11:37:00.007-04:00

Well the holidays have come and gone once again and I am just now getting around to posting on the blog. Actually diagnosis day and delivery and everything that came with it has come and gone, two years ago. The holidays were good. The kids were spoiled as usual. Nik's first christmas was cute although he was not into much it that much. He did rip the paper now and then off his presents though. Tara doesnt really get excited. She takes her time and once done unwrapping poses for a picture and then puts whatever it was back properly before moving on to another gift. She is not a messy person! We celebrated Tara's 6th birthday (can't belive it has been 6years where does the time go?) by going to disney world. We were there over Andrew's second birthday as well. The trip was from February 22-26th. We bought a balloon and left it go down there on Andrew's birthday and joes dad took out his balloon we purchsed before we left to him. Tomorrow (March 31st) is CDH awareness day. Please wear turquoise in memory of Andrew and also for all the other children that are affected by this nasty defect, whether earthly or heavenly!

Holidays

2009-12-03T09:48:00.006-05:00

The Burdette household is in full mode for the upcoming holidays. We decorated on Thanksgiving Day. Tara was very excited (considering she has her very own tree in her bedroom), but Nik didnt really seem bothered by the fact that we have a lighted tree sitting in our living room. My mom bought Nik, just like she did Tara, his first ornament for the tree and we put it on and took pictures of course. As I was decorating I was missing Andrew, as he would be at the age where he would be into everything and decorating might have been a fiasco! I can not believe that Nik is going to be 7 months old tomorrow! He is so BIG!!! Hope you enjoy the pictures and wishing everyone a happy holiday season!

Halloween

2009-11-06T15:59:00.006-05:00

The cold and flu season has completely invaded our house. Started with Tara and then everyone else including Nik came down with it. It is on its way out finally, although Nik is still fighting the occasional stuffy nose during the night. Thankfully the worst part was over by Halloween so it was enjoyable. I had a very pretty witch and a handsome spider if I do say so myself!

This is Nik's girlfriend, Riley. She is our bestest friends little girl, the ones that were with us through everything with Andrew. She is exactly 2 months older than him, although she should be 4, but Nik couldnt wait to come out and see her! Nobody is going to mess with her man, just look at that face! Thanks for checking in!

Late Post/Update

2009-10-01T13:06:00.019-04:00

Long overdue update in the Burdette houseold. Nikolas got to come home from the hospital on June 2nd, 2009. It was the best feeling in the world. He was brought home on a sleeping and eating schedule that helped out alot with the transition from 1 kid to 2. He quickly changed his schedule and began eating on demand which was more often, but thankfully was not like that through the night. I got to be off all summer with him and Tara and we thoroughly enjoyed ourselves! He did have a gradeII intraventricular hemorrhage in his head while in the NICU that we have had to have several follow-up ultrasounds for and will for quite sometime to see that it does not get any bigger. It should resolve itself, but is a stressor for me. Other than that he has been doing well. He is so big. At his 4 month checkup at the beginning of September he weighed 13lbs and was 24 1/2 inches long. I know he is even bigger than that now. It is hard for me to keep in mind sometimes that he was 2 months early and that I need to adjust his age for this, but because he is so big I assume he should be doing the things a 5 month old should. He laughs all the time and has recently found his voice and just talks away. He has no desire to roll over or sit up though. He holds himself up very well, he is just not interested in the two. He has always been a stomach sleeper so why would he want to roll onto his back anyways. The doctor is not concerned with him developmentally so I guess I am not either.

We did take Nikolas to see his brother for the first time during the summer. I also took Tara and Nik to the aquarium in Baltimore one afternoon. The family has been to Philadelphia a couple times to visit my family and Nikolas even went to his first major league baseball game. The phillies even won that day. We went to Myrtle Beach in August.

I had to come back to work at the end of August. We started interviewing daycare providers and then Joe's aunt volunteered at the last minute, which is awesome. It was very hard to have to leave him with somebody we didnt know. Tara started Kindergarten in August and likes it alot. We continue to be very busy and it are adjusting to life with two kids.

In January it will be two years since we found out about Andrew's CDH. Since then it is amazing how many people you meet with this defect. My brother is taking a biology class at the community college. He has to give a report on a disease and why he picked it. I am so happy that he picked CDH. He will also be able to spread some word and make people aware of this defect that I am sure nobody in his class has even heard of, not even his teacher.

Please remember all the CDH babies out their fighting everyday! Even though I don't post often I do keep up with the updates of the others listed on my blog!

In closing here are some new pictures. Enjoy!

Nikolas Andrew

2009-05-15T08:43:00.005-04:00

I guess it is time I update the blog...it is long overdue. I went into preterm labor on the weekend of April 18th. I was put on bedrest and on terbutiline to stop contractions. It seemed to work for the most part, although I would still have them just not as consistent. My high risk doctor put me on procardia because terbutiline makes you feel all funny and I didnt like it. The procardia didnt do anything. I was in and out of the hospital those two and a half weeks getting different types of things to make my contractions stop. On top of all of this I was spotting which I kept being told was normal. On May 1st I woke up with a lot more than spotting and went directly to labor and delivery. I was not dilating anymore but the contractions were consistent and hurt like heck! I was placed on magnesium sulfate around 630 that morning and had to be on there for 48 hours. My contractions immediately stopped. Magnesium sulfate is not a fun drug either! I was pulled off the magnesium sulfate around 830 on sunday morning and my contractions immediately registered on the monitor but I wasnt feeling much. I was discharged from the hospital on May 3rd a little after lunch and 1.5cm dilated. As soon as we got in the car and on our way home they started to be a little painful but still not very consistent. I was told on discharge to call if they got consistent and I could start to feel them. I called around 3:00 in the morning after an awful attempt at trying to sleep. I was told to take 2 terbutaline and a procardia all at the same time and call back if it didnt work. I think they got a little more spaced out cause I fell asleep for about two hours but woke up again to some very painful consistent contractions, like 4 minutes apart! I waited until the doctors office opened at 8 called in and I was sent back to the hospital. They checked me and I was 5.5cm dilated. There was no stopping him cause a half hour later they checked again and I was 6.5cm. I was in for the long haul at this point. I was not given an epidural until I was almost 8cm because the doctor had given me three shots of terbutaline to try and get the contrations to stop. All that did was make them a little inconsistent but they still hurt really bad! I was given two doses of stadal to take the edge off which is stupid and doesnt work except make you dizzy and completely out of it. I finally got an epidural and felt relief. I pushed three easy times and he was out crying! Everyone was so impressed. On May 4th at 6:17 pm, just 32 weeks, Nikolas Andrew was born weighing 4 lbs 15oz and was 17 inches long. He is doing very good except there was a minor setback last weekend when he got an infection and was having some blood in his stool. They put him on antibiotics and he started to get better, but they stopped his feeds which seems to be the biggest issue at this point. That has since stopped and he is doing much better. They started his feeds back up yesterday and he seemed to tolerate them pretty well, it is just a slow process. Patience are not my best quality and I just want him home now! I am tired a living the NICU life and I have only been there for 2 weeks. By no means is he very sick I just want to take him home. I feel like I have to ask permission to hold my own child and do anything with him and it sucks! I will stop complaining now!

CDH Awareness Day

2009-03-31T09:47:00.000-04:00

Hope everyone is wearing turqoise today in memory of Andrew and all of the other CDH babies, whether they are earthly or heavenly. I have on the shirt that we made last year for the blood drive. It still fits, even though I am 7 months pregnant!! Tara has her shirt on too. Daddy has his braclet on, but he always has it on. Andrew will send us a sign today to let us know who really participated in wearing turqoise, he will be watching!

Congratulations!!!!!

2009-03-04T15:23:00.002-05:00

Just wanted to post that our bestest friends, Emily and Mark, had their first baby yesterday, March 3 (2 weeks early). Riley Nicole was born at 5:20 pm. She was 5 lbs. 13 oz and was 19 1/4 inches long. I was very excited to be on the other end of the delivery room. Emily did great. Her and Riley are doing well, Mark is surviving too!

Andrew's Birthday Pictures

2009-02-25T10:07:00.007-05:00

Tara holding her brother's birthday balloons

Andrew's Birthday

Needless to say, Tara didnt want to let the balloons go (as you can see from the picture). She wanted to keep them there. We tied them to one of the flower vases on the stone. We also couldnt find a balloon that said "I Love You" so we ended up with just the birthday one. I thought it turned out pretty good though. Andrew's "aunt" Emily and "unlce" Mark took him a block for his birthday to "play" with. You can see it in the picture on the left toward the light. Tara sang happy birthday to her brother last night before she got into bed. It was so sweet. We are going to go back out tonight and pick the balloon up, deflate it and put it in the basket full of his momentos we have sitting in the living room. We thought that would be a good idea since Tara didnt want to let it go.

Happy Birthday to my Angel!!!!!

2009-02-24T15:17:00.006-05:00

It is hard to believe that it has been a year (at 5:10 pm) since I gave birth to him. I still wish that he was here with us today, but know that I would not be blessed with having Nik on the way and that this all happened the way it did for a reason. My angel was watching down on us when we conceived his brother cause he knew that is what daddy always wanted! Tara wants to take her brother 2 balloons, 1 that says "I Love You" and the other "Happy Birthday." We are going to release them at the cemetary today after her daddy and I get home from work. Hopefully I remember the camera so I can post pictures. I can not believe that she thinks of this stuff and boy did she know that today was his birhtday. She also told us that she is going to sing happy birthday to heaven because that is where her baby brother is! I couldnt believe that either. I am so proud at how she has handled the whole situation and hope and pray that she continues to do this well.

Crabbing for Cash

2009-02-03T14:56:00.002-05:00

Hopkins has just started their Children's Center fundraiser "Crabbing for Cash". With my 2 good friends, Gina Koger and Vicki Jensen, we're starting a CDH Support Group with the blessing of Hopkins. Like I said, Hopkins is a special place. We're just getting our group off the ground (I think we finally settled on a name!) but in the meantime I signed us up for the Crabbing for Cash. I put a modest goal of $100 and I hope we shatter that and raise a ton of money for Hopkins. The photo on my Hopkins webpage is the 3 of us at a Blood drive we sponsored with the Red Cross last year to raise CDH Awareness. No amount is too small! I can guarantee that Hopkins puts this money to good use! (Hope you dont mind Vicki I kind of copy and pasted some of this from Jack's blog.

The link to my personal page for this fundrasier is below. Please click on it and find out more!
http://my.e2rm.com/personalPage.aspx?registrationID=590243

1 year ago

2009-01-29T16:08:00.002-05:00

One year ago today is when we received the devestating news about Andrew's CDH. I can remember it like yesterday and it is so hard to believe that it has been that long already. Where has a year gone? I can remember going home from that appointment and trying to find out so much information about this condition. I was in complete astonishment and disbelief. This was even before we knew how severe his defect was. I was able to find other families stories through blogs and carepages which was very helpful. My doctor's office had given me Vicki's, (Jack's mom) contact information and I remember getting in contact with her for the first time. I was so apprehensive about the whole thing. I knew my emotions were going to get the best of me. I remember thinking I dont even know this person and I am going to have a major meltdown. I am so glad now today that I made that phone call as she has offered me so much support and continues to be such a good friend!

It's A BOY!!!!!!!!!!!

2009-01-07T10:47:00.007-05:00

Today we went in for another ultrasound to make sure everything is still "ok." We also got to fianlly find out what we were having!!!!!!!! It is another BOY!!!!!!! We are so excited. His name is going to be Nikolas Ryan. Everything seems to be OK so far and we are so thankful for that.

In other news, Jack's mom, Vicki, Wyatt's mom, Gina, and myself are forming a CDH arent support group at John's Hopkins. This is where all three of us had our care at. This is going to be a very exciting task that will take some effort to get going, but we have full support of the people at Hopkins which is awesome. I am looking forward tobe able to talk to other parents and help them on their journey!!!!

Andrew is going to be a "big" brother (and Tara a "big" sister again)

2008-12-18T09:16:00.003-05:00

I guess I can finally share my news since I have made it just shy of the 13 week mark of pregnancy. Yesterday I actually went in for my first ultrasound scan and was reassured that so far everything looks good. That was such wonderful news to hear. Although I guess I should try to relax and not think about what could happen it is hard sometimes not to. I must say though i thought that I was going to be reacting a bit differently than I am. I asked the doctor to try and guess the sex but no such luck. The baby would not show us a clear picture and it is really early to tell. I have to back every three weeks for scans so I will definately know on January 7th. Although we should be just wanting a healthy baby keep your fingers crossed for a boy!

I must say that my employer has really been accomadating this pregnancy and let me work at home for the first trimester. I work in a laboratory with different chemicals and i just wanted to make sure this time I was really protected against anything that I could have been exposed to.

Chistmas is just around the corner and I am very excited. Tara is super excited and it is so cute to see her this way. I thought that it would have been harder getting into the christmas spirit this year but it doesnt seem to be the case. I know Andrew is in a better place and he would have been suffering for maybe the rest of his life with this defect and GOD had a better plan for him. I know that he will have lots of fun celebrating with his great-grandparents and will be watching over us this holiday season. I hope that everyone has a very merry christmas and a happy new year!

Fall Cemetary

2008-10-20T18:24:00.004-04:00

We have decorated the grave for fall and I must say that it looks very pretty. I have added a picture for everyone to see. Tara picked out a very tiny pumpkin for her baby brother that you can barely see in the picture. My mom took out the tiny scarecrow. Tara is so cute and very understanding about the whole situation for a four year old. I could not ask for a better daughter. Dont mind the outfits we change as soon as we get home from work and were not anticipating any pictures being taken that evening. I had a very hard day today not understanding why. The only thing I can think os is that this weekend we went to where I grew up and several people asked me what Tara was being for Halloween (Philadelphia Eagles cheerleader), which I could answer, but not without also mentioning that her baby brother was supposed to be the football player to accompany her. I think that it finally really hit and I am kind of dreading taking her trick or treating for that reason because it will remind me of him not being able to be here with us. I tried her outfit on in the hopes that maybe it would fit her next year and then maybe there would be another baby boy Burdette, but the outfit will probably not fit her so we are wearing it instead of wasting the money on it. There is now a backup plan so that if she does get a baby brother again then she could be a University of Maryland cheerleader and he could be the turtle (mascot).

Vacation

2008-09-21T13:25:00.010-04:00

Sand Sculpture

Tara and mommy

Tara finding seashells

"Uncle" Mark, "Aunt" Emily, and Tara

Tyler (Tracey's Brother), Morgan (tyler's girlfriend)

and Tara

Daddy and Tara

We just got back from a 9 day vacation to Myrtle Beach, South Carolina. It was great. We had an awesome time. I was really depressed on Saturday when we got there. When we reserved the place I wanted a lazy river so I could float in it with Andrew. Well when I got there and saw them it kind of hit me a lot harder than what I thought it was going to. The week then got easier. Tara collected seashells which she is going to take to her Andrew and then we brought back some sand. We are going to take the beach to Andrew. I have added some pictures of our fun week.

August 25 - 6 Months Ago

2008-08-30T22:31:00.000-04:00

It has been six months since Andrew became an angel. It doesnt seem like that long ago. I must have been thinking about it too much the week prior (August 20th) because I would just get upset and depressed thinking about it. The day itself was actually not as bad as what I thought it would be. I was actually in a good spirited mood. I think that he didnt want me to feel depressed and moap around because he is always with me.

We also will be heading to the beach in two weeks. When we made reservations I wanted someplace that had a lazy river so I could float around and hold him on my chest. I will not be doing that now, but we still have the lazy river. I know that Andrew will be with us when we are down there, I just wont be visibly holding him. We will bring back sea shells and sand to take to him at the cemetary.

CDH Magnet Ribbons

2008-08-30T21:41:00.000-04:00

In memory of Andrew, we made magnet ribbons for our cars. I thought that would be a good idea to spread awareness and make it personal for our cars. Bestest friend, Emily, found the website and then designed it. I have posted the link to Andrew's, but anyone can make them and personalize them however they would like. I just thought I would share in case anyone else was interested in doing the same thing.

http://www.supportourribbons.com/m/209250

Congratulations!!!!!!

2008-08-30T21:36:00.001-04:00

Our bestest of friends, Mark and Emily, are expecting their first child. I cant wait to become an "aunt" and experience the "other side" in the delivery room!

Baby Wyatt

2008-08-30T21:30:00.000-04:00

Please say extra prayers for Wyatt Koger. He is in emergency surgery as I type this for reherniation and a bowel obstruction.

Happy 1st Birthday Jack

2008-08-20T14:44:00.000-04:00

Today is Jack's first birthday. Many probably wonder why I am posting this on Andrew's blog. I was informed about Vicki, Jack's mom, and Jack through my high risk OB doctor. I never heard of this defect and it was so bizzare to me at the time that there were two babies diagnosed within 1 year of each other living in the same city and going to the same doctor. Later when I went home and started reasearching I figured out that this defect is not that uncommon, there is just not much awareness! Vicki and I met and actually determined that we worked in the same building as well we just didnt know who each other was at the time. Vicki was very helpful and supportive throughout Andrew's short journey with CDH and she is still very much a friend that I can share my memories of Andrew with. I am so glad that I was able to meet her, even though it was through the worst circumstances. Jack's journey is posted in a link on Andrew's blog. I encourage any expecting parents of a CDH baby to read it. He is an amazing story of a CDH fighter and survivor!

CDH Awareness Day Blood Drive

2008-06-19T18:24:00.000-04:00

"Uncle" Mark giving blood in memory of Andrew

Daddy giving blood in memory of Andrew

Tara and mommy at the blood drive

Emily, me, and Vicki (Jack's mom, organizer)

This is a long much past due post forgive me. March 31, 2008 was CDH Awareness Day. Vicki, Jack's mom, organized a blood drive that she asked Emily and I to be a part of and help her with. I thought that would be a good way to remember Andrew and do something in his memory even though he never made it that far to need the blood transfusions. Other people from my family as long as Vicki's husband came out to show support, but did not give blood because they are unable to. Joe's sister, Emily, was the only one that could give blood out of who showed up and we didnt get a picture. Overall the blood drive was a huge success!

Afterwards

2008-05-10T20:37:00.000-04:00

Since leaving the hospital that evening we have been faced with the challenge of losing our son. There is not a day that goes by that we do not miss him. We are thankful for our daughter, which has helped with the grieving process tremendously. She keeps us pretty occupied. We are also greatful and thankful for the outpouring love of all of our friends and family. We could have not gotten through this without them.

Surprise

2008-05-10T19:32:00.000-04:00

February 25, 2008 MY DAUGHTERS BIRTHDAY
I called Hopkins this morning. He made it through the night but they didn't know how much longer he was going to make it. I was not allowed to be discharged until 5:30 p.m. Hopkins knew we were coming as soon as I could get released so they were trying to keep him alive long enough for us to say our goodbyes. I still have not gotten to really take a look at my son at this point. He was whisked away and when I went to see him in the NICU I felt like I was rushed and wasn’t supposed to be there.
I sat in my room all day at FMH. No one came to see me except for the nurses. They came to check on me and were supportive. No doctors came to explain what had happened; it was like they were afraid to talk to me. My regular OB did come early and get me released early around 1:30 p.m. The Head of Labor and delivery came and asked us if everything was OK. I told her that the people she was in charge of were great it was the other area that I was upset with. I complain of one nurse though that I had on Saturday night.
When my regular OB came to talk with me and release me, another lady came in to talk with us as well (nursing director?). We told her about the situation and how we thought it was wrong how they treated us with threats and coercion. Had the neonatologist been up front with us about calling social services, we would have left and delivered at Hopkins where I could have been with my baby and not prolonged his or our agony. We also complained about not being told what was going on.
We went to Hopkins and he was still on the ventilator. We said our goodbyes to our baby and left to get something to eat while they dressed him in preparation of pulling the plugs and to allow us to take pictures before and after death. They put the outfit we had taken on him and wrapped him in his blanket after they turned off the machine. We were called back in to say goodbye again and take pictures. He was perfect on the outside. The only thing visible was the cut on his cheek which I assume was from where they ripped the tape off to remove the breathing machine.

February 24, 2008 (32 weeks)
I got my epidural around 10:30 a.m. I got a new nurse at 7 a.m. and a new neonatologist was on call as well for this day. He came in and introduced himself and that was about it. The new nurse was caring and showed concern for me.
At some point after my epidural but before lunch, I was asked by my nurse if we were interested in having a social worker come talk to us about dealing with the death of a child. I said why not since that information could not hurt and we would have it in case we needed in the future. Someone came to my room around 1:00 p.m. and did not give us any information of that sort. Again many of my family members were in the room at this time. First, she asked if our religious beliefs had anything to do with our medical decisions. I said no. (What does this matter?) She told us that the neonatologist that we talked to yesterday had called social services because we were going to murder our child if we chose not to transport him. He had to be stable to be transported. I felt sorry for her because a lot of my family jumped on her for saying this when it wasn't her fault and she was just reporting what she was told to do.
At this point, I was considered to be in active labor. I had my epidural. I could not be transported to Hopkins.
I had my baby at 5:22 p.m. Andrew Martin was 4 lbs 10oz and 17 in. long. He tried to make a noise and then he was whisked behind a curtain where the neonatology team assessed him and got him intubated. They transported him to the NICU. My husband and Emily followed him to the NICU while they were manually hand bagging him to try to pump oxygen into his lungs. From that point on I had no contact with anyone on how he was doing. The neonatologist kept asking my husband why I was not there. I guess he thought I should have jumped out of bed and ran down there. I finally did get to go see him in a wheelchair. The neonatologist did not ask us anything nor did he explain what was happening to him. He just stood there with his arms folded.
While I was still in the delivery room Emily and Joe waited in the breast pump room of the NICU for the doctors to talk to them and explain what they were doing for Andrew. Emily heard one of the nurses cheer "whoo whoo we are going to Hopkins!" as she ran out of Andrews cubical. Emily asked her "oh really we didn’t know that", and the nurse quickly turned tail and ran. In the meantime one of Tracey’s labor and deliver nurses came back into the NICU to see how Andrew was doing. She asked Emily how he was doing and she told her that my husband and she had no idea. She offered to go check on him for us. She reported that they were still working on him and that the neonatologist would come talk to us soon and that he knew we were there waiting to speak with him. Emily and Joe finally met with the neonatologist about 1 hour after he was born, just briefly in the NICU "consult room" where he showed them an x-ray of Andrew’s chest. You could see his stomach in his abdomen but nothing else, his entire chest cavity was shadowed and we couldn’t tell what was what. He didn’t show them where any of his organs were. Emily asked the neonatologist to show us his lungs (specifically) and all the doctor said was they were waiting for a sonogram of his chest to determine the exact placement of the liver so they could put in another chest tube (they didn’t ask permission to place the tube, he just said they were going to do it). So Emily asked again to have him point out the lungs and he said they wanted to put the tube in first. Never had any other report from this man!!! At this point Joe went to tell me what the doctor had said-not much, and to bring me to see Andrew. Emily stayed behind and got to take a picture of Andrew and touch his arm. Basically Emily and my husband had to hunt the neonatologist down to ask him information and then he still didn’t give any. Emily and my husband tried to ask questions of the Dr. but he seemed to refuse to answer any of them.
At this point all we were waiting on was for Hopkins to come and get him. The neonatologist told my husband around 6 p.m. that Hopkins had been called and they were on their way. He finally left at 11:30 p.m. The doctor from Hopkins that was going to take him came to my room and I told him I had been forced under duress to sign the consent form for him to take him or we were going to be turned in to social services for trying to murder our baby. He did not want to take him because he did not think he would survive the transport and I was not allowed to be transported with him so I was not going to be with my baby when he died. FMH refused to release me for 24 hours. He called me when he got to Hopkins and told me that his heart had stopped and he had to give him adrenaline. He was on an oscillating ventilator and he didn't think he would survive the night since his blood gas levels were aweful. Andrew was not able to get enough O2 in and CO2 out. I was so mentally and physically exhausted. I asked them not to call if he died during the night as I wanted to get some rest.

February 23, 2008 (32 weeks)
My water broke around 1:30 p.m. (right before my daughter's birthday party). We called an ambulance to pick me up. I was put in a labor and delivery room at FMH. They had to determine if my water had broken since it was so bloody. It took them a long time to determine if this was the case. It was confirmed that my water had broken. I was not considered in active labor since my contractions were not consistent. At this point, I was trying to determine if I was going to leave or just deliver there. Dr. Miller, the head of the Neonatology Dept. came in to talk to us about our options. The OB that would deliver me, two nurses and some of my family were in the room when Dr. Miller came in. Dr. Miller said that based on Hopkins report of a 1% survival based on 40 week gestation that she would not do nothing when the baby came out. She said they would try to get him intubated and stabilized so they could transport him to the NICU for further evaluation. She was well aware that we were not going to put him on the ECMO at Hopkins (FMH doesn't have one). She further stated that he wasn't eligible for ECMO since he was so small. We know this isn't true since he weighed 4 lbs 10 oz and there are smaller babies on ECMO; eg, 4 lbs 6 oz. We asked her if we would still have the decision to transport him to another hospital if we wanted to. She told us yes we would have that choice.
A doctor from neonatology department at Hopkins had called and told me since he was premature on top of having CDH and fluid around his heart, there was 0% chance of survival. Transferring my care there should not be an issue. There really was not need for this as to his outcome was fatal. This should have been enough for FMH to not do anything because they were basing their decision on the initial report of Feb. 21, that he had less than 1% survival chance and that is why they thought they should try to intubate.
We decided to stay there for delivery since I was close to home and we thought we were in control of what kind of care we wanted for our baby. I asked how long I would have to stay there before my contractions became consistent and they said it could be a couple of weeks. This was not the case. The nurses on the 7a.m. to 7 p.m. shift on the 23rd were great. The nurse who came on duty at 7 p.m. was not friendly and didn't want to do anything for me. My contractions started to pick up during the night. I was very uncomfortable around 3:30 a.m. I got a new nurse sometime during the night.

Diagnosis

2008-05-10T19:27:00.000-04:00

February 21, 2008 (32 weeks)
I received my phone call from the genetic counselor on our way to Hopkins. She said that Dr. Miller would not feel comfortable delivering me at that hospital because they are not equipped with the equipment that he might need to live. Since all CDH babies are different she said that we should deliver where there in a facility that was better able to handle this type of situation. A little bummed I was but we would still have to see what the day brought.
We went to Hopkins and had another ultrasound. They confirmed Children's diagnosis. One of Hopkins OBs came in and talked to us during the ultrasound about what she saw. They did not have any reports from Children's. We asked the technician if he had a clubbed foot or flexed digits. They were looking for him to open his hands so they could determine if he had Fryn's Syndrome. This is the flexed digit part. They determined that it was very unlikely that he had a clubbed foot or even flexed digits. We asked about how many people I could have in the delivery room which I had been worried about since it was now going to be a hectic delivery. She told me as many as I wanted unless something bad started to happen. We also asked about a scheduled induction since I was so far away so we knew we would be there in time. The OB told us if I go into labor early, they would send a chopper for me. NOTE: When he was born he had neither; both hands and feet were normal. It was the way he was sitting inside of me.
After lunch, we had a consultation with the neonatologist. She explained to us what they would do once the baby was born and she was more thorough than Children's. I was really impressed with them. We discussed with her about not using the ECMO. She explained that we would have two options for when the baby is delivered. One was not to assess him at all and see what happens; and the other was to try to get him stabilized and then transport him to the NICU for further assessment. She said that she has seen no parents not do anything whose baby had CDH. We toured the NICU and PICU (ECMO unit). She explained machines to us that our baby could be hooked up to. She did this by using babies that were currently in the NICU.
My husband and I went home to think about what direction we were going to take after the delivery and she was going to call on Monday, February 25, to make notes on our chart. I had to make follow-up appointments for another ultrasound and to see the OB doctors since we had decided that was where we wanted to deliver.

February 20, 2008 (32 weeks)
I went back to be regular OB and asked her about delivery. She said I would have to contact a lawyer to have it documented what our wishes were exactly, but she didn’t see a problem with our decision.
I called the genetic counselor at my high risk OB doctors office and asked her if she ever heard about what my doctor told me to do and if she new of where I could start to look to find the right kind of lawyer. She told me she would look into it and let me know. She did call FMH and ask to talk to the director of the neonatology department (Dr Miller) to see if and what kind of problem they would have about me delivering at that hospital. Dr Miller wasn’t in at that time so she was going to call my genetic counselor back to talk with her. My genetic counselor was going to call me back once she heard something.

February 13, 2008 (31 weeks)
I had a follow-up appointment with the high risk OB. I was told that the baby had fluid around his lungs. This meant he was in heart failure but as long as he was inside of me he was fine. They didn't expect me to make it to 36 weeks because of all my fluid and that it would be a miracle if he came out alive at full term. The prognosis kept getting worse it seemed every time I went to a doctor appointment. I had talked about delivering in Frederick so I would be comfortable with the surroundings during delivery and to be close to my family as they are all close. The doctor told me it was up to my regular OB. I would have to ask her that. He also told me to keep checking for movement of the baby.
I did bring my ultrasound report to my appointment like we had talked about in the last. I did have the pictures and also the full reports that they (Community Radiology) sent to my regular OB doctor’s office. He looked at them and determined that you can see a shift in the organs, especially the heart as early as 18 weeks. He said there was no reason why this defect (CDH) was not caught sooner. The heart being shifted should have been enough of a red flag for the radiologist to have written something up on the report so I would have been seen by him (high risk OB) for a better ultrasound to determine exactly what was going on.
During the next week, my husband and I had discussed the issue of not even putting the baby on ECMO. His CDH was so severe and there are so many side effects associated with this machine that we didn't want our baby or us to suffer. We also wondered that if we were not going to use the ECMO (Hopkins and Children's have them, Frederick doesn't); what was the reason for having to travel over an hour to deliver. We wanted to deliver at FMH so we and our family could have the time to bond with him prior to his passing.

February 7, 2008 (30 weeks)
My husband, Emily and I traveled to Children's today for all of the testing. I had the fetal MRI first followed by the ultrasound. We were taken into a room to get the results of the MRI and ultrasound. We were told that our case was very severe and the baby would definitely need ECMO (heart and lung bypass machine). She also said that he was right sided. Emily wanted to know the head to lung ratio because in our research we found that this was a good indicator of prognosis. The doctor said this was used for left sided CDH and she hadn't calculated it yet but she knew that the baby’s was a 0.4 or below. 0.4 is a very severe case and chances are survival is minimal. She also said he might have a clubbed foot and flexed digits.
Next, we went to see the surgeon. We had to wait for an hour in a waiting room full of babies. The surgeon told us that babies on the ECMO machine are on there for two weeks. After that they take them off regardless of whether or not the babies need it to sustain life. We asked about surgery and ECMO. In our research we had seen that it is more risky to do repair surgery on ECMO but that it is done. At Children's they do not do repair on ECMO machine regardless. Note: This is not the case at Johns Hopkins as was told to us by another mother of a CDH baby from Frederick that also started her testing at Children’s.
ECMO has many side effects, one of which is a brain bleed which could cause death. This is caused by the blood thinners that the babies are put on. Using this machine is still not a guarantee of life. One day the baby could be doing fine and the next could be going down hill drastically and then bounce back up again. It is a big roller coaster ride.
After lunch, they performed an echocardiogram of his heart. This was a positive test. His heart was functioning and was anatomically normal.
We then went to see a genetic counselor. We talked about everything that had gone on that day and she was there for support. She asked about our family history to try and get a "feel" if there could be any other genetic problems associated with this defect since I was not having an amniocentesis. The results of an amnio also help the doctors prepare for what after delivery could be like. If the doctors new of other abnormalities, then the prognosis could be better determined and could be grimmer.
From here we made the decision to go to John Hopkins for a second opinion and to determine where we wanted the delivery to take place. Since we knew he would be placed on ECMO and Hopkins does do surgery on this machine and they leave them on longer if needed we thought that we would go here what they had to say. We were not comfortable with how we were treated at Children's either. We felt like they were very cold and inconsiderate, except for genetic counselor. We made an appointment with Hopkins to see if we would be more comfortable and to confirm our diagnosis. In the meantime, we continued to do research.

February 5, 2008 (30 weeks)
FeI had a regular OB appointment today. I told the doctor what was going on as she had no record of what the high risk doctor had determined. The OB told me that the defect is fixable, which technically it is. However, it is the lung damage that is the problem. I asked her why this was missed on all of my previous four ultrasounds (especially my 20 week ultrasound) and she said that possibly nothing was displaced yet; i.e. his organs were not moved around yet. She also said that maybe the lung damage might not be that severe because they might have been able to develop some. I left feeling somewhat relieved but I had not been evaluated a Children's yet.

January 31, 2008 (29 weeks)
I saw the high risk OB doctor who told us the baby had a right sided congenital diaphragmatic hernia (CDH). The doctor explained that this is a hole in the diaphragm where the intestines migrate into the lung cavity which prevents the lungs from growing and can displace the heart. He also said that right sided is less common than left sided. He said it might be genetic so they asked me about getting amniocentesis. I told them I was not interested in this as it was too late to terminate the pregnancy. I did not want to know if anything else was wrong. (I also have a perfectly normal 4 year old daughter). Most of the time this defect is a random hit and not associated with other issues. We (my husband, Emily and I) were told that there is no known cause for this. We were also told that the baby had a 50/50 chance of survival.
I asked this doctor how this could have been missed in all of the other ultrasounds. He said maybe the technician did not have clear pictures of everything and so the angle that the radiologist was reading the pictures from made everything look normal. He said I could get the report and pictures and bring them with me at my next appointment and he would go over them with me. He also said that maybe my baby's case might not be severe. Things might have started shifting after the 24 week ultrasound although the diaphragm does not close between 6 and 8 weeks. He was sending us to Children's National Medical Center in DC for further testing to determine the severity of the defect and hopefully get a better understanding of what was actually going on inside of him.
I went home to wait for Children's to call me with my appointment. They called later that day and my appointment would be on Feb. 7, 2008. My appointments were for a fetal MRI, ultrasound, consultation with a surgeon, echocardiogram of the baby's heart, and a consultation with a genetic counselor.
Emily and I began doing research on the internet that afternoon before going to Children's so we could be prepared and have our questions lined up for the "experts". We found a surgery that could be performed in utero up to 24 weeks gestation. The procedure would insert a small balloon on the end of the trachea of the baby which would be inflated and take up room in the chest cavity to prevent the organs from migrating into this area which would allow the lungs to develop normally. Because the defect was not caught in any of my early ultrasounds, I was not eligible for this procedure which might have saved my baby's life (no guarantee). We also found that every baby with this condition is different. All babies respond differently. There is no prenatal test that can diagnose and tell exactly if your baby will make it or not once born or have any other issues that are associated with this defect after birth.
My regular OB had called me sometime between this diagnosis and my next appointment. We talked about how upset I was at Community Radiology for missing the diagnosis. She said she called them to see what was going on and why it was not noticed. She left a message and never heard back from them which didn't surprise her. She also told me she was hesitant about sending her patients there for their routine 20 week anatomy ultrasound.

January 30, 2008 (29 weeks)
I went to my fifth ultrasound and actually had a different technician. I was glad that I had a different one. This is where it all began. She told me that I need to go directly to my regular OB because something was wrong with his stomach. It looked larger than normal. She also said something about me having increased amniotic fluid. She told me she was going to have the radiologist fax my report to my OB but I wasn't supposed to know that. I left feeling confused and upset.
I called my best friend (Emily Smallwood) who works with me and she went with me to my OB's office. We sat in the waiting room for about 2 hours before we were seen. The report didn't tell my doctor anything so she made me an appointment for the next morning with a high risk OB doctor.

Everything Prior

2008-05-10T19:05:00.000-04:00

October 2007
I started to feel better during this month, except for the tired feeling. Because of a procedure that I had done in April 2007, I was to have my first ultrasound at 16 weeks gestation to check the length of my cervix to make sure it was going to be competent enough to carry the baby. If not they would put a stitch in me. My ultrasound appointment was on October 30th 2007. My husband had a mandatory meeting for his job so my best friend and my daughter went with me. We were able to find out the sex and that supposedly our baby was healthy. It was a boy which we were all ecstatic.
From here on I had ultrasound appointments every other week until I was 24 weeks pregnant (December 24, 2007). This was just to check my cervix, but they looked at the baby as well. I had the routine ultrasound at 20 weeks to check all measurements of baby as well. Everything was normal. I complained about my technician and asked for another one to do my last two. I was told that I would have a different one, but did not.

September 2007
I started to feel sick Labor Day weekend for the first time. I was in and out of work for the rest of the month because of the sickness sometimes it would last all day and others it wasn’t there at all.

August 2007
I took the pregnancy test on August 27, 2007. I was a little in denial and waited to find out because of how sick I was with our daughter. As soon as I found out I was pregnant with her I was sicker than a dog for three months nonstop.

July 2007
We got pregnant on July 24th 2007. I know the exact date because we were trying very hard to have boy. I had read up on the internet the different methods to try and conceive a boy.

May 2007
My husband and I decided it was time to try for another baby. Our daughter was going to be four in February 2008. I stopped taking my pill this month.