Memorial Service

Todd Heston Martin
Born in Harrisburg, PA on Dec. 5, 2008

Departed on Dec. 29, 2008 at Alfred I DuPont Hospital for Children

Memorial Service:

Friday January 2, 2009 at 11:00am

Mercersburg Mennonite Church

Graveside Service immediately following

We invite everyone to come celebrate Baby Todd's legacy.

Thanks for your support.

Dustin & Jerri

To see his complete obituary go to http://www.bowersoxfuneralhomes.com/

Leaving a Legacy

Tuesday morning we made our final drive home from DuPont Children's Hospital. The ride home was quiet, and full of mixed emotions. We definitely felt a relief and peace to know that we were going home, however there was an overwhelming feeling of sadness. Sadness at the thought of "leaving something behind". It was way stronger than forgetting where you put your keys, or forgetting something on the grocery list; which I've done countless times. I'm not really sure that there are words to express the emotions.

Several times during the drive I would look back at the girls, and see silent tears flowing down their cheeks. It was heartbreaking to see them hurting, yet their faith in knowing that Baby Brother is with Jesus, with a brand new heart, is very encouraging.

We both feel very blessed to have been given 3 weeks with Baby Todd, and memories we will cherish forever. We may never know the full impact he had on others, but we are certain that he has left a legacy that will never be forgotten.

Home at Last

Sunday took us backward a few steps. Due to Baby Todd being on so much support for so long, his kidneys and liver shut down and his lungs were not getting better. Today we reached the point of no recovery, so we had to make the decision to stop the support. This was a decision we hoped we never had to face, but had to be made. At 4:00 pm on Dec. 29 we told the doctors to stop support and a few minutes later Baby Brother finished the race and made it home. He is now in the hands of Jesus with complete healing and a brand new heart. There is no more machines, no more tubes, no more wires, and no more noise just PEACE! The kind of peace that can only come from God. The doctors and nurse said he was the toughest baby they have ever had and he was made of something special.

Thank You for all of your support and prayers. We will continue to update this blog.

Keep on Keeping on!

The doctors were finally able to take fluid out of Baby Todd the last 24 hours with the ultra filtration system. Before the system, they were putting in more fluid than he was putting out, thus making his lungs 'wet'. With the extra fluids out, they are hoping his lungs can recover. It was hard to see him today, if you can imagine a grape to a raisin you will understand. We can now see how sick he really is.

I took the girls back home today, and it leaves us here in the quiet once again. We look forward to each day we get to see them. We are praying that Todd will take a few steps forward, so we can feel more comfortable taking turns coming home. Continue to pray for Baby Todd's lungs to recover and we are keeping on keeping on! God is Good, all the time! All the time, God is Good!

Ronald McDonald House

For the past week or so, Dustin has taken over the job of updating the blog. He's done an amazing job, and I am now a huge fan of his writing. I wake up every morning and one of the first things I do is read his entry, since he typically writes after I am in bed the night before. Anyway, we both thought it was time for me to take a turn at blogging again.

I never imagined that I would be spending Christmas weekend at the Ronald McDonald House, and celebrating the Holidays with complete strangers. Then again, in the last three weeks, I've done a lot of things I never imagined myself doing. But, I honestly have to say that we have been having a great time together as a family...starting new Holiday Traditions. Those of you who know me, know that I am NOT a fan of fast food, especially McDonalds. However, I doubt I will ever pass up the opportunity to support McDonalds and the Ronald McDonald House again!

I was able to spend 2 hours with Baby Todd this morning. It was a wonderful visit with him. Because of my fear of losing him, I slowly detached myself from the experience all together. For the first time since we received his diagnosis in July, I felt like I was finally starting to allow my self to connect with him and "bond". He was awake most of my visit this morning, and was moving his hands and legs. He would squeeze my finger when I talked to him, and would look at me as if he was just soaking up every word I said. I talked to him about leaving a legacy, the importance of his testimony, and the amazing Gifts that God has given him.

While visiting with Baby Todd this morning, the nurses updated me on the adjustments they were making to his machines. His overall condition has not changed, and in the Doctor's words, "He is still a very sick baby". His tiny body has been through so much over the last 3 weeks, his organs are still in need of much rest. We are continuing to pray for improvement in his liver and kidney function, and restoration and healing for his lungs. This has been a very slow process, but through it all God has been very faithful...and His timing is perfect.

Thank you all, again, for your continuous prayer and support, and encouragement. I can not begin to tell you how much it means to us, to know that we have so many people praying and walking with us in this journey.

Three Weeks

We have been in Delaware three weeks, so I thought I would give a complete update of where Baby Todd is on Christmas day. He has the Berlin Heart doing the work for his heart, the VV ecmo doing the work for his lungs, and an ultra filtration system doing the work for his kidneys. There is at least 4 large machines and a total of 23 tubes, lines, and wires attached to him. This morning there were an additional 18 wires attached to his head for testing of his brain. The doctors are very impressed he is still "intact" in his head and the tests today, at first look, did not show any concern.

This is the Berlin Heart in the front and the Breathing Machine in the back.
This is the VV ecmo machine and the Ultra Filtration System

The doctors said a new heart would be a very good thing right now if one were to come available. Until then, they are doing every thing they can to keep his body functioning. Todd is still fighting even though the odds are stacking against him. We try to focus on the goods things and remember God has brought us this far for a reason.

Today Jerri and I felt more home sick than ever, but we made the best of the situation. We put up a small Christmas tree in our room and put many presents under it.


The girls didn't seem to mind the small tree because it still had the presents.

We added a tractor theme, to make it feel more like home (we are so redneck). Sorry dad, we couldn't find red tractors so we added red bows.

We had a great day opening presents and spending the day together. We went to the movies to watch "Marley and Me". It was a good movie for the girls and when it was over Kadenn said "the movie made my eyes water". So, take some tissues if you go to watch it.

Todd was here to squeeze my finger one more day, so I believe God gave us a Christmas Maricle. We continue to pray for complete healing one day at a time and thank God for a wonderful Christmas.

The Kitchen Sink

Ready or not we have to do it. This is how our day started this morning. It was determined the VV ecmo was doing more harm than good, thus making Todd sick. We had to take him off the VV ecmo and see if his lungs could do their job. A couple of hours later with his oxygen levels dropping, we knew his lungs were not ready. So, back onto another type of VV ecmo to help minimize the harm. They have also started a form of dialysis to help get rid of the extra fluids in Todds body. This is the last attempt to dry out his lungs and get them working. I guess one could say "We now threw in the kitchen sink". The next day or two we will know the direction we are heading.

We do have a room at the Ronald McDonald House and friends of ours (Mike and Stacy) are bringing the girls down tonight to stay a couple of days. When we checked in, they took us to Santa's Workshop full of toys. They told us to pick out five toys per kid and two for each of us for Christmas. The girls are going to have plenty of presents this year to help drown out the drama, and Baby Todd will have plenty also for when he gets well.

Despite all the drama Todd has been through, he squeezed Jerri's finger and looked her in the eyes. This was the encouragement we needed to make it another day. We are praying for a Christmas Miracle tonight. I know God is going to remain faithful, so I am remaining faithful also.

Merry Christmas to All and God Bless

Between a Rock and a Hard Place

Two days until Christmas, and we finally got our shopping done. We are working on getting a room in the Ronald McDonald House, so the girls can stay with us a couple of days to celebrate Christmas.

Baby Todd has had an up and down day. The x-ray of his lungs appears to be better than yesterday, but his kidneys and liver took a step in the wrong direction. The doctors do not have a solution to help them, at this point. They are running a lot of tests to see what they can find. It may be side effects from the VV ECMO machine. To make a long story short, Baby Todd needs to come off the VV ECMO as soon as possible, but at this point his lungs do not appear to be completely ready. It's like we are stuck between a rock and a hard place.

Today we are praying for complete healing in Todd's lungs, so he can be taken off the VV ECMO tomorrow. This is a big thing to ask God for, but I know he will be faithful in ways that can not be described.

Its Official

Today was another day of rest for Baby Todd. God was faithful again! The doctors are slowly going to try to ween him of the oxygenating machine (VV ecmo), if his lungs continue to improve. This will be a very big step in the right direction.

Jerri and I had a chance to do some Christmas shopping today. We are planning on celebrating Christmas in Delaware and working on the details. I believe this is going to be a Christmas we won't forget.

Todd Heston Martin is now official. Since his birth he was referred to as Baby Boy Martin. Because of the urgency at his birth, they didn't find it important to have the official name on file. They did the fastest registration they could. We trust God for another day of rest tomorrow for Todd and pray for complete healing of his lungs.

God is Faithful!

Sunday morning we talked to the surgeon for the updates of the past 24 hours and things look positive. He said the x-rays of his lungs today improved again and there is still no bleeding. He continued to say we need another week of rest with no set backs. I said we just need a day at a time. Today has been another day of rest for Baby Todd just like he needs. God is faithful and answered our prayers once again!

Jerri's sister Sharon was able to bring the girls down to see us today. We got to show them around the hospital and the room where we are staying.

The train wall in this picture is the hallway of the hospital. The hospital is geared for children and every hallway has a different theme. The patient care provider gave a bag of hospital suppies to the girls. They had a wonderful time playing nurse in our room on baby Todd's stuffed animals. We also took the girls to Chuck E Cheese's and had a blast. We were quickly remided of the energy level our girls can have.

Tonight we pray for another day of rest for Baby Todd and for the Holy Spirit to breath complete healing into his lungs. We need to remain faithful to God and his Power! Thank You to All and Praise be to God!

All God!

When we have nothing to rely on but God, we get an overwhelming peace. This may be hard to understand, but the last couple of weeks brought us to this point. Its a point where us as Christians should be at all times, but we often find ourselves relying on other things. It is when these things reach their limit that we cry out to God. Our God has on limits! Therefore put your trust in him and experience the overwhelming peace of God.

The last 24 hours have been all God! Todd had some bleeding for a couple of days that the doctors just could not seem to get completely stop. Last night I prayed for the holy spirit to enter Todd's body and stop the bleeding. When Jerri and I talked to the doctor this morning, he said that the bleeding he was fighting the last couple of days had stop over night and completely dried up. He continued to say the lung x-ray seems to be better today. The doctor seem to be very satisfied and said we just need a quiet day of rest. Today has been just that, a quiet day of rest. Today God showed his Power!!

A song came to mind today "Show Your Power Lord Our God"

We need a Miracle!

Friday morning the surgeon had to relocate the tubes going to the oxygenating machine, to help control some bleeding that started Thursday night. This helped with the bleeding for now. The surgeon said that Todds lungs are not showing signs of improvement. He continued to say to Dustin that from a medical perspective, there is nothing more that can be done to help his lungs improve. The lungs will need to heal on their own or we are down a dead end road. This leaves us at the limit of technology, but at the begining of what God can do. We are still waiting, and praying for a miracle for Baby Todd.

The Marathon

The past 24 hours took us a few steps back. Wednesday night, due to his lowering oxygen levels, the surgeon had to put Todd on another machine to oxygenate his blood. His kidneys and liver seem to be improving, so the doctors are remaining optimistic. The one doctor said "this is technology at its limit".

Today Jerri was able to go home and spend some time with the girls. I was able to spend several hours with little man today. He would squeeze my finger and look at me as if to say "I'm hanging in there daddy". Its moments like this I think I will never forget. A doctor told me to pace myself we are running a marathon....I guess she thought I was putting in a lot of time. On two occasions the nurses said "He is one tough baby". That's my boy!

We thank everyone who is continuing to run this marathon with us. We pray for Todd's lungs to recover and continued strength for 'one tough baby'. Praise be to God for he is in control!

Baby Steps & Birthday wishes!

It has been 2 days since we have updated, but there haven't been many changes. Dustin & I got the chance to spend quite a bit of time with Baby Todd Tuesday. It was rather difficult to leave him actually. The nurses were allowing him to be awake more. We were definitely enjoying the moments we got to look into his eyes and see him respond to our voices...we find this to be very encouraging.

Today hasn't been quite as encouraging, however. In the past 12 hours Baby Todd's oxygen levels in his blood dropped again. Therefore, the doctors had to sedate him again to keep him still. The less he moves, the less oxygen that his body uses. His liver, kidneys and lung seem to be showing signs of improvement. Pray that his lungs will continue to improve and oxygen levels stablize.

It was nice to get to celebrate Dustin's birthday yesterday. Fortunately Baby Todd was having a good day, so we were able to leave the Hospital for a while and go for dinner. The staff here at the hospital found out it was Dustin's birthday...he was eating up all the attention the nurses were giving him! Thanks for all the cards and emails, they definitely helped make the day special.

Bittersweet emotions

Monday started kind of bittersweet. When we met with the Doctor, he said Baby Todd's urine output has been increasing, which is a good sign. He continued to say that his right lung did not appear to be functioning, which lowered his blood oxygen level. This was a step in the wrong direction.

Dustin was able to make a quick trip home today to see the girls for the afternoon. They were so excited and surprised to see him. After tucking them into bed he headed back to the hospital.

I was able to sit with Baby Todd for about an hour this evening before dinner. For most of my visit, he was opening his eyes and following my voice. This was the highlight of my day. He has proven himself to be a tough little boy.

Despite the increase in his urine output, he is still retaining a lot of fluids. We are praying that his kidneys will continue to improve and for his right lung to regain function.

A Milker?

It has now been 2 days since the Berlin Heart was implanted in Baby Todd. Not much has changed in the 24 hours, which what was expected. We are still in rest mode. Todd did peek open his eyes a couple of times even though he is kept sedated. This was encouraging to us.

The Berlin Heart is an interesting machine that makes me feel at home. That may seem weird, but it sounds and looks kind of like a pulsating milker. Here is a video to prove my point (the sound didn't come through very well).

I had a great evening watching our girls in the Christmas program at our church. Thanks to friends who recorded the program and posted it for us to watch. We wish we could have been there. We are still hanging on and can't wait to be back home.

The first 24 hours

Baby Todd has been on the Berlin Heart for about 24 hours. He has responded well to it, and is making very slow progress in baby steps. His liver and kidney functions are improving. We never thought we would be so excited for a wet diaper!

Dustin and I were encouraged by the doctor to take a break this afternoon and get out of the hospital. We took his advice and went out to get some fresh air. Going out for lunch didn't seem like a big deal, but boy did it make a difference. Dustin was finally able to get a haircut too. It's amazing how quickly we can take those little things for granted.

Overall, today has been a better day. We still have a long road ahead of us, and continue to pray for healing.

The longest day

First of all, THANK YOU so much for all the prayers. We definitely felt them today. We had another long and stressful day.

Baby Todd went back into surgery today to have the Berlin Heart implanted. He was taken into the OR around 9am for what was to be a 3 hour procedure. As the hours past and the updates seemed to not go as good, the day grew longer and longer. Todd didn't come out of surgery until 5pm. The Berlin Heart was successfully implanted, but when they tried to take him off the heart and lung machine his lungs wouldn't do their job. This was a big problem! The surgeon was not satisfied until Todd could be taken off the heart and lung machine, this required more time in surgery. Thankfully they finally have him on the Berlin Heart and off the heart and lung machine.

We are again back to the waiting stage, with God in complete control. Today, more than ever, we relied on our faith in Jesus Christ! Its a hard place to be , but I know comes with many rewards. When we talked to the surgeon before the surgery, he said Todd has had little side affects for what he has been through. He continued to say "Todd is made of something special" several times. I give God the glory for something special!!

The Berlin Heart

Thursday was an up and down day. The doctor made an attempt at weening Baby Todd off the heart and lung machine. They found that he wasn't quite ready and had to make some adjustments to the tubes connecting him to the machine. Before the adjustments, the kidneys were beginning to show signs of stress, afterwards they started to return to a more normal function. Thursday ended up being a day full of waiting and rest, again.

We found out Wednesday night that Baby Todd has been approved to receive the Berlin Heart. It is to be arriving some time Thursday night. He has been tentatively scheduled to have the Berlin Heart procedure around 8:30am on Friday morning. The use of the Berlin Heart is to allow Baby Todd's heart to continue to rest, without as high a risk of infection, bleeding or other organ damage.

Current Post-op options...

We were able to speak with the Surgeon again this afternoon. At this point, Baby Todd is not ready to be taken off the heart and lung machine. He has had some bleeding around his heart, which had to be stopped and cleaned. The nurses and doctor all say that this is normal and to be somewhat expected.

The 'road blocks' in the surgery yesterday left his heart very stressed and with a less than oringially expected recovery percentage. Knowing this we have taken all precautionary measures, which includes Baby Todd being added to the Heart Transplant list. Because he is still on the heart and lung machine, Baby Todd has level 1-A Priority. We have also applied for the use of a "Berlin Heart". Which will be a more long term "fix" while we wait for recovery and/or transplant.

At this point we are still in the waiting process and are still praying for healing and recovery of the heart he has been given.

Links have been added to the right side of the blog with information regarding Heart Transplantation and the Berlin Heart.

Surgery Update

Today is 'waiting day'. Currently we are waiting for Baby's doctor to run a few more tests and re-evaluate his condition. He is still on the Heart and Lung machine to allow his heart to rest as much as possible. Yesterdays' surgery took much longer than the doctor originally expected due to a few 'road blocks'.
The doctor plans to slowly allow Baby's heart to work on its own, with out the machine. If all goes according to plan we will be starting the weening process today.

I was asked by the doctor and nurses to carry Baby Todd back to the OR. The doctor with us is one of the Baby's anesthesiologists.

Surgery Day

Surgery is scheduled for 8:30am Tuesday morning. The procedure takes about 3 hours, give or take. The doctor and nurses expect that we should be able to see him (after surgery) by lunch time.

Thank you in advance for all your prayers...we will update with any results as soon as we can!

Transport

This is a bit of backing up, but I wanted to take a minute to fill everyone in on the transport to Wilmington.

Baby Todd was born at 2:12pm on Friday afternoon, and taken immediately to the NICU (Neonatal Intensive Care Unit). Around 5:30pm we got the call that the DuPont Transport team has arrived and were preparing him for transport. At this point we got to go be with Baby Todd in the NICU before he left. I was able to hold him for a minute...only long enough for Dustin to take this picture.

Dustin was not able to ride in the ambulance with the Baby, but followed in our vehicle. They left Harrisburg around 6:30pm and it took them about 2 hours to get to Wilmington.

Dustin got settled into our room for the night, and I met up with him on Saturday. I was discharged from the Harrisburg Hospital around 8:15am and left the hospital around 11am and headed straight to DuPont.

Thanks to everyone who was with us on Friday and Saturday and helped us through this transition!!

Video Update

Baby Todd is currently in the CICU (Cardiac Intensive Care Unit) awaiting his surgery. He has several IV's and monitors attached to him. The Doctor and nurses are currently monitoring his head and body's oxygen levels, body temperature, blood pressure, pulse and chest movements. He has IV's in his left hand and in his umbilical cord.

The clear, plastic box 'thing' is his air hood. It is used to manipulate and regulate the air that Baby Todd is breathing.

We got to go sit with Baby Todd this morning for about an hour. As of right now, that was the only time we got to be with him today. There has been a lot of activity in the CICU today, so we were not permitted in to visit this afternoon or evening.

During our visit this morning Baby Todd was a bit restless. So I got to hold his hand, underneath his breathing hood. The nurses have been giving him his pacifier dipped in sugar water, to help soothe him.

He's HERE!!

Todd Heston

Born: Friday December 5, 2008 at 2:12pm

at

Harrisburg Hospital

Weight: 7 lbs 2.6 zs

Length: 20.5 inches

37 weeks 2 days

Friday, November 21st I had another OB appointment, and I saw another new doctor. Sorry, but I don't even know his name.

My appointment was at 1:00pm so of course I ate a sandwhich on the way there, which I learned was not the best thing to do. They put me on the monitor first, and since I just ate, Baby Brother didn't want to cooperate with them. He just wanted to lay comfortably and not move at all. Finally, after about 20 minutes, he started moving around. At this point, his heart rate went up to 182. I started to panic, but the nurse said it was okay to go that high. I also had a pretty big contraction while on the monitor. I have been having a lot of contractions lately, but not regularly enough to be really concerned. Having contractions seem to make me really tired. So, I have been trying to relax as much as possible...hoping to save up some energy for the real deal!!

I had another ultrasound today too...to check fluids & baby's breathing patterns. Doctor says everything is looking good! They didn't check dialation, which kind of surprised me...considering I am less than 3 weeks away from my due date.

I go back up to Harrisburg to be monitored on Black Friday. I have to go to the hospital for this appointment since the Office will be closed. Then I go back to see the Doctor on Monday December 1st. At that appointment we are going to check dialation and discuss scheduling me to be induced. So hopefully, at that point, I'll have a better idea of when Baby Brother will be joining us!!

I got another picture before we left for the doctor today...

SURPRISE!!

This past Sunday, some ladies from our church hosted a Surprise Baby Shower for us. I was VERY surprised to say the least. It was hosted by our assistant pastors wife...at their house. We were supposed to be going to their house for a church related "meeting". But, there was no meeting!!

Anyway, we received lots of great gifts. Including the baby bath robe I'm holding in the picture, as well as diapers, wipes, sleepers, thermometer, onesies, towels & washcloths, blankets, hats and toys & cd's.

A huge THANK YOU to everyone who attended the shower! You ladies are amazing...not just for the shower & gifts, but for your encouragement & prayers!

36 Week check up

I saw the Doctor on Friday, for my 36 week check.

I did not have to be on the monitor this week, everything was checked through my ultrasound.

Baby Brother's heart rate was 131 and he weighs 6 lbs.

According to the measurements of his arms and legs...he is measuring at 35 weeks.

His weight measures out to almost 37 weeks. So we are expecting him to be short and chunky! :)

At this point, not too much is going on. We are just waiting on Baby Brother to make his appearance!

I go back to the doctor on Friday the 21st for my next check up!!

So little time...so much to do!

Well - it's official! The countdown has begun...I have 4 more weeks until Baby Brother is due to join us! I feel like I have so much to do to prepare. Here is a list of things I'll be working on over the next 4 weeks...hoping Baby doesn't come too early, so I can finish my list! ;o)

* Finish the curtains in Baby Brother's room...I decided to make them myself and I have to finish the one set and start the second!

* Find a quilt & buy crib sheets that will match his curtains

* Buy a few more items that are required for caring for a baby...monitor, diaper pail, bottles, etc

* Pack our suitcases for our stay at the Hospital -both Harrisburg and Wilmington

* Changing table for upstairs

* Put together the Swing, Stroller, and Car Seat

I'm sure I am missing a few things on my list, but these are just a few I have been concentrating on. We actually put together the stroller and Car seat last night. So I can cross that off my list!

I have been having more contractions...not strong ones, but they have been happening more often, even when I am laying down or resting. So, we'll see what the Doctor says on Friday.

35 weeks, 2 days

I wish I could get in the habit of updating sooner...sorry, I am almost a week behind.

Yet another check up...Friday November 7

Once again I was hooked up to the monitor to check Baby Brother's heart rate and movements. I was also being monitored for any contractions. Baby Brother cooperated and his heart rate and movements fluctuated accordingly...so well, as matter of fact, that I didn't have to do the entire half hour! Plus, I actually had a contraction while hooked up to the monitor. I never experienced Braxton Hicks contractions with my first two pregnancies, I had no idea what they felt like. Well, now that I experienced it while on the monitor, I know exactly what a contraction feels like. And...I have been having them for a few weeks. Not regularly at all, but at least one or 2 a day.

Anyway, I had one contraction and Baby Brother's heart rate was anywhere between 116 and 156. He moved quite a bit. I did have a quick ultrasound, but they only measured fluid and his heart rate again. Next appointment I will have the growth scan, to see how big he is getting!

Since I was having contractions, the doctor thought it best to check and see if I am dialating at all. I am almost at 1 cm...which is not much at all. I do find that I have contractions more frequently if I do a lot of walking. So, the Doctor told me to take it easy and make sure I get lots of rest so I don't have any contractions. Their goal is for me to go at least 40 weeks or even 41 weeks (YIKES!) to make sure Baby Brother is plenty big enough for surgery.

My next appointment is Friday November 14th...36weeks and 2 days!

34 Week check up...

Sorry for posting twice in one day. I wanted to update sooner but I had a very busy weekend, and when I did have a bit of down time...I slept! Anyway, I still wanted to take a minute to update from my OB appointment on Friday. I am officially on a weekly schedule to see the OB, so you will start to get more frequent updates...maybe! ;o)

Like I said before, I don't have to see the cardiologist until Baby Brother arrives. At that point the medical team from duPont in Wilmington will come to Harrisburg and care for Baby Brother, then transport him. So I will only be seeing my OB from now on. He says that a lot can happen in a week, so he needs to see me more often. That's fine.

This Friday was my first Fetal Stress Test. I was hooked up to the monitors for a half hour to record Baby's heart rate and movement patterns. Plus, it recorded any contractions I was having. Baby Brother was to move 2 times every 10 minutes...he definitley did that! He wasn't still much at all. His heart rate fluctuated perfectly according to his movements. His heart rate ranged from 117 to 162. I also had another ultrasound, however, it was only long enough to measure amniotic fluid...which was normal.

I will be having a Fetal Stress Test, weekly from now on. Plus regular ultrasounds every other visit, to measure Baby Brother. I am looking forward to my next appointment...I'm curious to find out how much he has grown...considering my belly is HUGE!

Should LIFE be a choice?

A rather akward title for this post, considering the topic for my blog...I know. I just wanted to share with you one thing I experience every Friday when I go to my Doctor appointments.

The OB that I go to is in a medical center attached to the Hospital. They are Specialists and the majority of their patients are high risk for whatever reason...these parents and doctors are fighting for the lives of the babies. Ironically, only less than 2 blocks away, there is a Women's clinic that performs abortions. Every Friday we go to the doctor, and every time we pass a group of young women, barely of age to vote, picketting and fighting for the right to have an abortion. It's very disturbing and angering. Even more than that, it breaks my heart to know that as I fight for Baby Brother's life, someone else is out there fighting to end a life.

Psalms 139:13-14

For you created my inmost being; you knit me together in my mother's womb. I praise you for I am fearfully and wonderfully made; your works are wonderful, I know that full well.

Week 33

I saw the cardiologist for the last time today. Actually, the last time until Baby is born. The appointment went very well and rather quickly. We had our last prenatal echocardiogram, which only lasted about a half hour. The doctor reviewed everything and was very pleased with what he saw. Baby's heart is very strong and growing well. We have made it passed the "dangerous" phase and now we are just waiting for Baby's arrival.

I go back to Harrisburg next Friday for another routine prenatal exam.

I didn't get measurements or weights today, only a heart rate, which varied every time they checked it. It ranged from lowest at 121 to highest of 139.

30 Weeks!!

This picture is from 3 weeks ago...at my 30 week point. But, better late than never...right!?!

Try to ignore my goofy expression. Honey was being silly while taking the picture, so I joined in the fun and made the goofy face. Actually, this picture is the best one of the 4 he took.

October 15, 2008

Today, I am officially 32 weeks! I had my 32 week check up today. I got to meet one of the other doctors in the practice today. So far I've only met 3 of them, and there are still more that I still haven't met. I am finally starting to get comfortable with the idea of going to a new OB. However, meeting a new doctor yesterday really made me miss my old doctors in Chambersburg. Oh well.

My appointment was very routine...and Baby was doing just fine. They did an ultrasound to check his growth. They seemed to be rather rushed, so they didn't go over any of his measurements with me. All I know is that he measured to the 32 weeks and his heart rate was 130.

We took a quick tour of NICU and the Labor/Deliver Unit at the Hospital. I was very surprised at how nice it was. Being the first time delivering at this hospital, I wasn't sure what to expect. But the rooms are very nice. We got to know what to expect when Baby is born. It wasn't really anything new, other than, they basically are going to be rushing us through Labor/Deliver process so that we can be transfered to duPont right away. As soon as Baby is born he will be given some IV's and I will get to hold him for a few minutes. Then he will be taken to the NICU for further assessment. Once he is taken to NICU, then I will get to go sit with him. We won't be in Harrisburg very long, well at least Baby won't be. Once he is stablized and ready for transport, he will be taken to duPont and placed in their NICU until I arrive. This is all information we already knew, but walking through the process with the nurses just seemed to make the process even more real. While in the NICU, we saw a baby that was born at 25 weeks and weighed only 1 pound. He had a twin who was also in the NICU. He was so tiny, and fragile looking...definitely an image I will never forget!

I go back to Harrisburg next Friday for my last appointment with the Cardiologist. I will be having one last echocardiogram before baby is born. We won't see the cardiologist again til Baby is born, and he will have an echocardiogram then.

I hope to post pictures soon...so check back to see Baby's updated 4D picture. And of course, my belly, (which I think cannot grow anymore!). :o)

Another Update...

In keeping with the purpose of this blog...I figured it was high time I shared about my last OB appointment.

The blood work turned out fine! I saw my OB on September 26th, who seemed pleased with how things were going. I am officially back to my starting weight, or pre-pregnancy weight. I actually lost about 12 lbs in the first trimester, then very slowly gained it back. They did a "growth scan" to check the baby's size. This is nothing more than an ultrasound...he weighed about 2 lbs 11 ozs. and his heart rate was 148. The lab tech had trouble getting some of the measurements, Baby didn't really want to cooperate so much.

We also saw Baby's cardiologist for an updated echocardiograhm. It went ok. The Cardiologist said there was very little to no change in the appearance of Baby's heart. He definitely didn't change his diagnosis.

I go back on October 15th to see the OB...and I see the cardiologist on October 24th. That will be the last time we see the cardiologist until Baby is born.

Be praying...we know God has amazing things instore for Baby Brother!

Blood work, yuck!

My OB in Harrisburg has been asking me to get some blood work done. I finally did it...today was the day I've been dreading! I had 5 tubes of blood drawn, one of which was for the glucose test. Yes, I had to drink the dreaded "orange soda".

But, as much as I tried to avoid the tests, I survived...

Baby...an official introduction!!

I got this great shot printed at my last OB appointment. I figured it was time to actually show off our handsome little man!

This ultrasound was done at 26 weeks and 2 days!

(August 29th)

A. I. duPont Children's Hospital

This past weekend we had an appointment for our "Family Session" at the duPont Children's Hospital in Wilmington Delaware. We met the surgeon who will be doing Baby's open heart surgery and took a tour of the Cardiac Unit.

Originally, we planned on staying in Wilmington/Philadelphia area for the night. Mainly because we were expecting this to be a very overwhelming visit. I didn't expect the visit to go well, mainly because of how my appointments went in Harrisburg. The appointment didn't go anything like I had thought it would.

The surgeon knew all about us, before we arrived. He actually took the time to study our chart, which made the visit way more personal. We spoke with him about the actual procedure and what to expect. We also got to meet some of his staff. We were impressed with how friendly and sincere everyone was. You could definitely tell they were passionate about their jobs. We met Judy, the social worker, who would be handling our case. She was very excited to meet us face to face. She said that Dr. Robinson had already told her all about us! She was a wonderful lady...she showed us around the cardiac unit, operating room, and living areas.

The entire appointment took a little less than 2 hours. When we left, Honey and I both felt a huge relief, like a weight had been lifted from our backs. We were both very nervous about how the day would go. But, after this visit, we both felt very comfortable with the doctors and staff that will be caring for Baby.

The only time I got a bit emotional was when we walked through the Cardiac ICU and there were two tiny babies laying in cribs with monitors and stuff attached to them. They each had a nurse sitting by them...and no parents around...anywhere. It broke my heart to see such a tiny baby, post surgery, with only a stranger there to comfort them.

25 weeks!

About 2 weeks ago, I had a dream. And, in my dream I was having a conversation with God. He was telling me that I was to have an ultrasound at my next prenatal visit. The conversation went like this:

God: You need to have an ultrasound at your next doctor visit.

Me: Why, I just had one a few weeks ago? I would rather not do it again, yet.

God: You need to have an ultrasound...request one if you need to.

Me: Fine, I'll do it. But why is it so necessary already.

God: I have something to show you!

When I woke up the next morning, I shared my conversation with Honey. He said we would do whatever was necessary to have that ultrasound.

Friday August 29th we were driving to Harrisburg to see the OB, and for the first time I felt a peacefulness about going. For the first time I didn't cry the entire drive there.

The visit went fine, it was a routine exam just like I expected. Before I left the doctor came into the room and said he wanted to do an updated ultrasound to check Baby's growth.

During the ultrasound, the technician was measuring Baby's arms, legs, belly, and head. She also checked the umbilical cord & its blood flow. She saved his heart for last. When she got a good angle of his heart, she took the required measurements then just looked at the pictures with a puzzled look on her face. She then asked us if we were sure the baby's diagnosis was HLHS. When we told her yes, she continued taking measurements. When we saw the pictures of Baby's heart we could see all four functioning chambers and the two on the left were almost the same size as the right! The smaller left chambers were obviously growing!!

Baby weighs: about 1 lb 10 ozs

Next appointment: September 26, with the cardiologist

We have no official heart measurements, or a report from the cardiologist at this point. But, it was clear to us just what it was that God wanted us to see in that ultrasound.

This blog has a purpose.

I started to write my post about my appointment on Friday, but I wanted to go back a bit and rewind.

Honey said to me the other day (as if this was a new idea), that we need to be journaling our experiences and keep track of Baby's progress through out this pregnancy. Of course I told him I already had that taken care of.

Honey and I have been through a lot in our 8 years of marriage and our years before that as singles. With that said, we have grown tremendous amounts, and God has blessed both of us with amazing spiritual gifts. We decided when Baby was diagnosed with HLHS, we were not going to allow that to hold us back. Baby is a huge blessing to us already, in so many ways, and we felt honored that God chose us to be his earthly parents.

With all that said, I am blogging our experiences through this pregnancy and will probably continue for a while after Baby is born. Our goal is that whoever reads this will be blessed in one way or another.

the burn

Well, the past week has been pretty uneventful as far as Baby is concerned. But, I figured I'd post something, just to let you all know I'm still here.

Baby has been kicking like crazy...to the point that he wakes me up at night.

So, I burned my belly last wednesday. I know that sounds really dumb. But the story gets worse...I was cooking ground meat to make sloppy joes for a picnic. I poured a little bit of water in the pan to let it simmer and forgot to turn down my burner. Needless to say, it splattered out and soaked through my shirt onto my skin and left a quarter-sized blister on my already sensitive belly. Ouch!!

On another note, we go back to Harrisburg on Friday to see the doctor. It is supposed to be just a simple routine check...but we'll see!

Because I know you're curious

I figured I should add a picture of me and Baby! Well, what you can see of baby so far...

This picture was taken at 21 weeks.

21 weeks...August 1, 2008

Honey & I were now on our way to meet with Baby's cardiologist.

I had an hour long ultrasound with an Echocardiogram. Dr. Robinson (the cardiologist) took pictures of every possible angle of Baby's heart, plus monitored blood flow and the heartbeat. When we arrived for our appointment, we were expecting to see Baby's heart with full sized right chambers and underdeveloped (small) left chambers that may or may not have blood flow. At the previous appointment the doctor and sonographer didn't take any measurements of Baby's heart...they weren't of significant size.

We spent the past week in prayer...and I mean PRAYER!
We had friends & family in PA, MD and NJ praying for Baby.

Anyway, my point is...DON'T STOP PRAYING...IT CHANGES THINGS!

After our ultrasound, we met with Dr. Robinson to discuss what he found. He was able to measure the left 2 chambers of the heart, and chart accurate blood flow. Baby's heart was fully functioning - properly! PRAISE GOD

The problem was that the left side still wasn't big enough to be sustainable after delivery. Baby would still need open heart surgery...but not immediately after he is born. I was now told I would be able to naturally deliver Baby in Harrisburg, but he would need to be transported to Dupont with in 4-6 hours to be prepped for surgery.

The FACTS:

*Baby was diagnosed with Hypoplastic Left Heart Syndrome (HLHS)

* Harrisburg Hospital specializes in babies with Congenital Heart Disease, however only 1% of those cases are diagnosed with HLHS

* The left chambers of Baby's heart measured to 50% of the size of the right chambers!

Last week, they were too small to measure and didn't have adequate blood flow.

Floods of emotion

Pregnancy naturally involves so many quick changing waves of emotion.

Now throw in the news we just received about our tiny baby boy. I don't even think overwhelmed is the right word to describe how I was feeling. I cried the entire hour drive home from Harrisburg, and even cried part way through my lunch at Applebee's.

My afternoon consisted of more tears and lots of sleep. Was this a terrible dream? I forced my self to sleep, in hopes that when I woke up Honey would tell me this was a dream.

- It wasn't.

We were scheduled to see the Neonatal Cardiologist on Friday August 1st.

20 weeks..continued!

Wednesday July 23, we received a call from the OB stating that we would need to see a Neonatal Cardiologist. The Doctor and Radiologist found that Baby had a heart abnormality. The left two chambers of his heart were not visible on any of the ultrasound pictures.

We were then referred to a OB Specialist in Harrisburg, PA...and were to see them the next day.

I automatically assumed the worst, who wouldn't have.

I immediately thought back to early January when I miscarried, and had to have a D & E due to "absent cardiac activity".

Thursday July 24, 2008 we went to Harrisburg for our appointment with the specialist. We (I) endured 2 hours of ultrasounds with 2 doctors, 1 intern, 1 Cardiac Sonographer and a Ultrasound Technician.

Before going into this appointment, Honey & I prayed...for our own strength to endure whatever news we would get, and to show us a small miracle.

During the appointment, the doctors and techs were able to find the left chambers of Baby's heart. They were very small and there wasn't really any blood flowing through the left side...it was just there. Half way through the appointment we were given a break and Honey & I were left alone in the exam room. We prayed again, and prepared ourselves for the rest of the exam.
By the end of the ultrasound the Doctor was able to find the left side of Baby's heart, with proper blood flow. Baby's heart was functioning properly. It was our sign...our hope and encouragement!

The Doctor suggested that we come back in a week to speak to the Cardiologist to get an official diagnosis and discuss treatment options. When we left the appointment, we were told that I would have to deliver Baby at Dupont Children's Hospital, where he could be immediately prepped for Open Heart Surgery as soon as he was born. This condition was very severe and very rare, and only a few hospitals on the east coast perform the procedure that Baby would need.

20 weeks

July 22, 2008 we had an appointment for an ultrasound & anatomy scan.

It's A BoY!!

The beginning...

Welcome to my new Blog. I decided to start this blog to document the events of my current pregnancy. Please be patient while I update and add to the blog...