Our little miracle is here!

I apologize for not updating for a while. I've been low on energy and time! I have wanted to blog about everything that has happened though and I'm excited to share!

The C section was scheduled for Monday, April 22nd. The weekend before was full of getting everything ready. We had to make sure we had our bags were packed for a month stay while Coleman would be in the hospital after surgery. It was hectic and stressful. We were very nervous that this scary journey was a bigger reality for us now that he would actually be here to get it started. I dealt with a lot of emotions of not being able to hold my baby and then him being taken somewhere and I wouldn't be able to go with him. But we had talked about it many times and were as prepared as we could be for what was about it happen. We were still really excited to have our baby!

Monday, April 22nd. - Day of delivery. We got to the hospital at 8am. My C section was scheduled for 10am. I was taken back to a kind of pre-op to get ready.

They started my IV. I was visited by anesthesia. They explained what they were going to be doing with my spinal injection. My doctor visited me and the neonatal doctor visited. They said Dr. Sharma, our cardiologist, would be in the NICU waiting. These were all people who would be there for me and Coleman. My family came back and spoke to me 2 at a time and we said lots of prayers. At about 9:45 they took me back early to get started. Matt came with me. He had to wait in the hall and put scrubs on until they had my spinal put in. He took this picture while he waited

 I have to say, that numbing shot for the spinal was the most painful part of the whole thing. Plus it seemed they had a person who was training putting my spinal in. It took just a few minutes with me sitting on the edge of the table and listening to everyone buzz around me before they told me I could start laying back. I had laid down and they put the sheet wall covering where I couldn't see what was going on down there, then Matt came and sat beside my head. He had started getting worried because it was taking so long. I asked him what they were doing now and he said they were doing the C section and kind of laughed because I didn't know. They hadn't told me they had started and thankfully I couldn't feel anything. Eventually one of the nurses asked Matt if he wanted to see the baby come out, so he stood up and watched. Coleman came out squealing and the first thing Matt said was "He has hair!". I smiled and listened to those cute baby squeals. That was my baby.

They took Coleman over to the baby bed and monitor that was where I could turn my head and just see his lower half, just a few steps away. Matt went over to him and came back and forth between us telling me all about him and showing me pictures of him. Matt got to cut his cord and a nurse took pictures.

 

 They weighed and measured him. 8lbs even, 20.5inches. They had cleaned him off and started his IV, this all took just a few minutes. Then they brought him over to my face where I could see him. This is a mother's love at first sight. He was beautiful. He tried to open his eyes a little while I talked to him. I gave him his first kiss, on his forehead.

 Then they had to take him to the NICU so they could start the prostaglandin, or monitor it, and so that Dr. Sharma could do his echo. Matt went with him and they were gone. They had just got finished sewing me up and took me across the hall to recovery. I asked them to get my mom to come back to be with me. She sat with me and I was there a while because of my bleeding.
I called Matt to see how it was going and he said they were doing his echo and they were going to put in a breathing tube (they had told us that was a possibility when starting the med, causing labored breathing).

I hung up and started worrying and feeling bad for Coleman. We weren't sure what was about to happen with him. What we had tried to prepare for, but can't really prepare for.
The nurse kept coming and checking my bleeding, mashing on my abdomen, very painful. The longer I bled a lot, the longer I had to stay in recovery. Matt called and asked where I was and I told him I was still in recovery. He came and told me Dr. Sharma said he had good news, but didn't say what and he wanted to call Egleston and talk to the doctor there first, then he would come talk to us. We weren't sure what that meant, but good news is good news.
Dr. Sharma came to recovery and talked to us.. This part is slightly fuzzy for me trying to comprehend what he was saying and me being on pain meds.. But he said Coleman did not need to prostaglandin (med they had started), so they stopped it immediately and that he was breathing fine. He started explaining that it was better than what we had thought. He started drawing a heart to help explain. He said his aorta is good size and that the pulmonary artery was the small one. He said he still had a single ventricle. We asked if it was still HLHS then and he said no. It's called single ventricle with complex and pulmonic stenosis. But he said Coleman would not be needing the first surgery, but would still need the 2nd and 3rd he was going to have, and that they would keep him there in the NICU for about 10 days to monitor his oxygen level, it needed to be in the range of 80-90. He said he would come back on Wednesday and do another echo to check if the PDA holes were closed and see what his levels were then. He said he was very hopeful that it would look good and we would be able to bring him home. WHAT?! We're bringing this baby home?? We were so thrilled and excited! This was a huge great surprise for us all. Although we weren't prepared to bring him home just yet, being able to feed him and everything, we were so happy! This is definitely a miracle. Matt called and told his mom, she was in the waiting area with the rest of our family. Everyone was so excited and rejoiced.
I had been in recovery 3 hours then and they had just checked me to be able to go. I was so anxious to get out of there because they were going to take me to the NICU to see Coleman from there! Matt walked with me as they rolled me down there in my bed. We got in his room and there Coleman was. I was so happy to see him. The nurse asked me if I wanted to hold him and I said yes of course! She also asked if I wanted to breast feed him and I said I would try. I wasn't even expecting to get to really hold him! Much less feed him when we thought he would be on a feeding tube for a long time! She handed him to be and my insides were thrilled. I was worried I wouldn't get to hold him and there he was in my arms. This was all such a blessing.

I then went back to the room to rest and see family. Everyone was so happy and hugged me.
I think I may have went down to see Coleman one more time before I went to sleep.

I stayed in the hospital until Thursday and visited Coleman a lot during that time. The nurses had to tell me to rest the 2nd day then after that they barely ever caught me in my room. Matt and I were always visiting our precious little miracle.
We were able to feed Coleman, change his diapers, check his temperature, and hold him whenever we were there.
Wednesday, Dr. Sharma had came and done the echo and the holes were still partially open. He said he wasn't worried about it and it was ok the way it was open just a little, but they wanted to make sure his levels were ok once they were closed completely. He said he would get another echo done on Friday to check again. He said his levels had been good since he'd been there and he seemed like he would do good. He said if everything was good we may get to go home with him after the next echo. I was so excited we might be able to bring him home even sooner than we thought.
On Friday, they put Coleman under lights because his bilirubin level had gone up. They said he had slight jaundice. We visited him a couple of times that day, but not as long as usual because he had to stay under the lights. We rested at home a lot that day and called to check on him. We came back later and asked about the echo. His holes were still a tiny bit open. They said Dr. Sharma had consulted over the phone and said we could still bring him home that he wasn't that concerned about it since it was such a tiny opening, and we made an appointment to come see him. Now we just had to wait for his bilirubin level to come down enough to bring him home.

Saturday we were disappointed that he was still under the lights and we couldn't bring him home that day, but still happy he was doing good. The nurse then told us the doctor had wrote orders that we could stay with Coleman in the live in room that night. This is where we would be in a room basically like a hotel room and Coleman would be in there with us, still on his monitor, and we would take care of him all night. We were happy to do that. We went home and packed to pack an over night bag and headed back to the hospital.
It was kind of a long night. Coleman's belly seemed a little bit upset and he wasn't very happy sometimes, but it was ok. Plus his monitor kept going off because it didn't read his oxygen level as normal even though it was his normal. But we made it through the night and actually got a couple hours sleep!
Sunday morning we got the word that we could take him home! So excited! The nurse went over everything with us. Told us schedule a pediatric appointment the next day and Dr. Sharma had an appointment with us Thursday. Dr. Sharma had told us it was important to watch him for fever or being sick because it's more serious with him. We signed our discharge papers and loaded up the car.

We have been so blessed to have this precious little miracle baby. We pray he continues to impress us and the doctors. I'm so in love with this little guy. He has completely stolen my heart. And he's gorgeous! I'm so glad God picked me to be his mommy.

I will update more on the doctor appointments, nothing really huge, but I wanted to get the big story down since I haven't updated in a while. I've had my hands full with little mister! All of my energy that I do have goes to him :)

Here are a few more pictures

 Outfit I got to tell Matt I was pregnant

Yes he is :)

 

Thank everyone so much for all your continued prayers! They have worked! Please continue to pray for Coleman and his health and upcoming surgeries. We know the power of prayer has been shown in him. Coleman is truly a miracle baby :)

A date is scheduled! He's coming!

So, I am now 38 weeks and 3 days today. Really glad to have made it full term!
My twice a week NSTs have been good. Even though he's had to be woken up and 'buzzed' to move the last few times and it takes a lot of extra time. I never worry about it during the NST because he moves like crazy while I wait on the doctor. He just stops when I get hooked up the the NST. Little stinker lol. To buzz him they just vibrate a few places on my belly and boy does that make him go crazy!
But it seems this little stubborn stinker doesn't want to come out any time soon.
I have been checked for dilation every week since 35 weeks and have had no progression.

Thursday at my OB appointment, I saw Dr. Little. Checked my cervix, still closed. Coleman's head isn't even in my pelvis yet, or 'engaged'. So, Dr. Little started talking about delivery and how likely a C-section was. He said as of then it would be about 50/50 either way, but because of the situation and my blood pressure being borderline, they would like to take me at 39 weeks. He suggested if I wasn't dilated in a week, then they would schedule a C-section. He also had labs drawn because of my blood pressure. Came back normal.

I was emotional after I left that appointment. I'd never thought about having to have a C-section and it wasn't what I ever wanted. I always thought I would just go into labor and that's what I wanted. I called Matt and cried and he calmed me down. I talked to a couple of people that had C-sections and their experiences. I eventually became ok with the idea. I just needed to process the thought.

Monday at my OB appointment, I saw Dr. Lake. I like Dr. Lake because he's always very thorough. Checked my cervix, still closed. He talked about my blood pressure and it being borderline and wanted to check me again for preeclampsia. He said he wouldn't let me go to 40 weeks because my blood pressure being borderline and they want to find a happy medium to let baby cook longer. He started discussing induction. He said he would recommend starting Cervidil, a med that prepares your cervix for dilation, on Sunday night. And then induction would begin Monday. I asked how it would effect me or baby. I asked if the prostaglandin (Cervidil), would have an effect on the baby because that's what they will stabilize his heart with after delivery. He said no. So he said we could go ahead and schedule the induction, but could still decide to have a C-section if we wanted and would need to decide that by Wednesday at my next appointment. That's what we did.

I thought about it and talked it over a little with Matt. I wasn't comfortable with induction if I wasn't dilated at all. I feel like if I got induced, it would be long and drawn out and I would still end up getting a C-section in the end. And I didn't want to put any extra stress on Coleman or me. "Why not skip all that trouble?" I thought. So it was decided, C-section it is!

We did go eat at a restaurant last night called Scalini's. They are famous for their labor inducing 'Eggplant Parmigiana'. They have a few walls full of babies that have been born after eating the eggplant. We thought, "worth a try!". If I could go into labor naturally, I'm all for it! I was scared to it eat though lol. But it was very delicious! They said if it worked it could take 48 hours, but I doubt it would work for me. Maybe for people very close to their due date! It was nice to have a yummy dinner and try something new though!

 

At my OB appointment today, I saw Dr. Ward. I told him I decided to go the C-section route, and after checking my cervix again and still no progression and his head not even being in position, he agreed. He said an induction would be against my favor the way things were going with me. He said it was very reasonable that I would want a C-section. So, I had my NST and waited extra long for Coleman to move AGAIN, and set everything up. The C-section is scheduled for Monday, April 22nd. This coming Monday. 5 days away! Eek! So Soon!

I've been telling Matt this past week, "We're about to have a baby!". We're still in disbelief. We're excited and nervous and scared and happy all at the same time. Our baby is coming MONDAY!

Please pray everything goes smoothly for us all, especially Coleman and myself. We've had such great support with everything going on with Coleman. Now it's here and it's real and it's starting Monday! We pray he's a strong baby boy (And he feels like he is!). And that my C-section goes great with no complications. And pray he does great during and after his surgery, especially recovering. We want him as healthy as possible and we want to keep him! We pray for the doctors that will be operating on him and taking care of him. We pray most of all that Coleman will get to live and grow up to be such a strong and kind man and know that he's one of God's miracles. We pray God lets us keep this baby. We already love him so much, so many people already do.

I know I've said it many times..We appreciate all the prayers and love and support that we get. It all means so much to us.
I will update as much as possible on everything coming up. Be sure to 'Like' my Prayers for Coleman Facebook page because there will probably be short more often updates there.

We are so excited to meet our baby boy!

Facts and what Coleman is going through now and when he gets here

I decided to make a post devoted to some facts about CHDs (Congenital Heart Defects), HLHS more specifically. And make a post to answer some questions people ask me. This will help people know more about what is going to happen with delivery and what Coleman will be going through.

Some facts:

• Congenital heart defects are problems with the heart's structure that are present at birth.
• About 1 in 100 children born in the United States each year has a CHD.
• CHDs are the #1 birth defect worldwide
• CHDs are the #1 cause of birth defect related deaths worldwide
• Nearly twice as many children die from CHD each year as from all forms of childhood cancer combined
• Of every dollar the government spends on medical funding, only a fraction of a penny goes toward CHDs.
• Only about 50% of CHDs are diagnosed in the womb.
• People with CHDs face a life-long risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.
• HLHS is found in about 1 in 4,300 babies born each year in the U.S and accounts for 1% of CHDs
• HLHS is fatal within the first few days of life without surgerical intervention
• Surgery is not a cure for HLHS, just makes it livable.
• There are 3 seperate stages of surgeries for HLHS. Norwood procedure - birth. Glenn procedure- around 6 months. Fontan procedure - 18 months-4 years.

I found a good article that explains what HLHS is in an understable way...

Hypoplastic Left Heart Syndrome (HLHS)

A normal heart has 4 chambers; the upper two are called the right and left atrium and the bottom two are called the right and left ventricles.

There is a wall separating the atriums called the atrial septum and a wall separating the ventricles called ventricular septum.

Essentially, your right side of your heart pumps blood to your lungs and left side of your heart to your body; the blue signifies deoxygenated and the red oxygenated – blue for lungs, red for body.


Hypoplastic Left Heart Syndrome (HLHS) is one of 35 congenital heart defects and it is made up of a collection of problems that occur on the left side of the heart:

• The left ventricle is small and the Mitral and/or the Aortic valve may be narrow, blocked or have not formed at all.
• The Aorta is small and there is usually a hole in the atrial septum (known as atrial septum defect).

HLHS has many variants and a HLHS child may not present with all of the heart abnormalities

What this would mean in a baby born with HLHS is that the lungs are flooded with blood as the correct ‘path’ is not there and it follows the path the red blood takes after mixing in the Atriums. A sign in an undiagnosed baby is that they have trouble breathing as their respiratory rate increases and there is a blue tinge to their nail beds and lips.



All newborn babies are born with a duct that is open called the Ductus Arteriosus. It enables the blood to flow correctly around the body and it is only when this duct begins to close that the baby will become sicker. It is at this point that a heart problem is usually picked up but sadly for some, it is not.

There are 3 paths available to newly diagnosed parents of babies with HLHS. The first being to offer comfort care or to terminate a pregnancy, surgery or heart transplantation; comfort care is where the child is allowed to pass away peacefully without an medical intervention to sustain their life. This can happen at home or in the hospital. Heart transplantation is an option but is rarely offered as whilst it is very high risk and does not provide a cure, the availability of small, baby-sized hearts is very rare. Surgery can be performed to give a better quality of life and a more prolonged life. The surgical route is often a 3 stage procedure and each stage can be modified to the individual heart complexities. Whilst it is often a 3 stage procedure, it does not mean to say that there would be no further operations.

Stage one of surgery is called the Norwood procedure, stage two is called the Glenn procedure and stage three – the Fontan Procedure. Norwood is usually done in the first few days of life, the Glenn at approx. 3-6 months old and the Fontan at about 18 months to 4 years.

This is from http://www.charliejonesfoundation.org.uk/Hypoplastic_Left_Heart_Syndrome_HLHS



Some questions people ask me and some tid bits about what will happen:
Main question I get is if I have to have a c-section or schedule anything.
 - No, I hopefully will not have to have a c-section. They're treating this as a normal labor and delivery so that Coleman can grow as long as he needs to. I don't think they will let me go past my due date though.
Where will I deliver at?
- I will deliver at the hospital near us and Coleman will be transported to Egleston within a couple of days.
After birth, they will put lines in Coleman to start him on medicine to stabilize the heart until surgery, med called prostaglandin. So, he will be ok until surgery.
Hopefully I will not have to have a c-section to prolong my stay in the hospital so that I might be able to leave when he leaves.
They will do another echo on Coleman's heart before surgery to see exactly what they're dealing with.
Surgery will be about 6 hours long. He will then be in the cardiac intensive care unit (CICU). He will be sedated for the first few days so he won't be aggitated. His chest will be left open for the first few days also and baby needs to stay still to let that heal. The chest is left open to let swelling go down and let a couple of things heal quicker before they close it.
He will be in the CICU for the majority of the time at Egleston, constantly monitored.
The average stay for the surgery is 20 days.
He will be on a feeding tube and be sent home on a feeding tube.
HLHS babies get tired when eating because sucking makes them tired  (anything that works their heart extra makes them tired) and they don't eat enough, so that explains a little why about the feeding tube.
I will be able to pump and include that in his feeding tube food.
Feeding tube causes extra reflux.
Coleman will have a lower immune system than most babies and will need to stay healthy for his next surgery. We may limit going out much or a lot of people coming to visit for his health and safety.

I'm trying to think of anything else because I know there's more, but nothing is coming to mind right now. If anyone has any questions about anything at all, I'm at open book! I love talking about my baby and raising awareness for CHDs.
I hope everyone has enjoyed reading this :). I wanted people to have some understanding of what he has and what he will go through.

 

Maternity photos, Children's hospital tour, Getting Close!

It's been about a couple of weeks since my last blog entry. I haven't had much to update on is why. Which isn't a bad thing!
I've had my regular twice a week OB appointments with NST. Everything has been good and normal :). They did an ultrasound to check my fluids and I got a picture of Coleman's heart for the first time...

That's something I don't have after all these ultrasounds. I'm not sure what a normal heart looks like because I've only seen his so often, but the ultrasound tech said it's obvious he's missing a chamber. And I guess it really is!  Seeing it like this makes me see how messed up it really is and makes me sad. But doesn't change anything.

We had maternity pictures taken at 35 weeks. That was fun. They turned out great! Thanks Jennifer, Delicate Details Photography :). Here are a few of them

Yesterday was a full long day for me. I had a doctor appointment in the morning and we toured the children's hospital and met the surgeon in the afternoon.
My appointment went good. They did an ultrasound instead of a NST. Coleman's estimated weight is 7lbs! Big boy! This is great for him of course because of surgery, but also because another thing wrong is the umbilical cord is missing an artery (normally there are 2 arteries and 1 vein), and this can make the baby not grow at the right rate. This isn't related to his heart though. But they said this baby is growing great! He's in a high percentile for weight :)

Our appointment to tour Children's Hospital of Atlanta (CHOA)/or Egleston, was at 3. We picked up our moms at lunch time to come with us and we headed on. The hospital is just over an hour from where we live, plus traffic. We stopped and ate,got there at 3, and waited to meet the surgeon. We met with Dr. Kogon. He was very nice and soft spoken. He explained the first surgery to us in some detail to help us understand. He explained the some basics of the other 2 surgeries, but focused on the first surgery. He gave us the run down on a few things, even some of the sad things. but he was very kind about it all. He said the average hospital stay for this is 20 days. I was kind of surprised it's so short, but good to hear. He said Coleman will go home on a feeding tube, which we already knew. He asked if we had any questions. I asked what their survival rate is there. He said it's about 88%, which is good because I had read less in other places. And he also said it's higher than the national average by just a few numbers. I asked if he would be the one doing the surgery or if it would be a whoever is on call thing. He said since he's the one we've met with he would be the one doing the surgery and most everything will be through him. It's nice to know we've met with the person who's going to have our son's life in his hands. Dr. Kogon was really nice and seems excited about what he does. That was assuring.
We then toured the cardiac unit with a nurse practitioner. We saw the cardiac intensive care unit (CICU). This is where Coleman will be as soon as he gets there. They will watch him and make sure they have him and everything ready for surgery. They do the surgery on the floor above where the operating rooms are. He will be back in the CICU after surgery to be monitored at all times. They allow 2 visitors back with him, so me and Matt will be able to sit with him almost whenever we want. We got to see a baby that was hooked up to everything that he will be. It was sad, but good to be prepared. The nurses are one on one with those babies and it was nice to know they are well taken care of and watched.
We then saw the Step Down Unit. This is like a normal, private hospital room. They will put Coleman there when he is almost ready to go home. We will be able to stay the whole time and overnight with Coleman there. This is more of a place to stay so that the parents can learn what they're going to have to do at home to take care of everything baby will need. It prepares the parents to go home with baby. The nurse helps teach you what to do and the doctor still comes by to check on baby.
Everyone and everything seemed really nice there. I feel comfortable going there for this huge soon upcoming event :)

Another thing I'm excited about is getting to participate in some HLHS research that is hopefully happening soon! This is a HUGE thing! Congenital heart defects barely get any funding as it is. So I'm very excited about it. But I'll post more about that later when I get some things put through with it. Here's an article on the research
http://mayoresearch.mayo.edu/mayo/research/hypoplastic-left-heart-syndrome/regenerative-strategies.cfm



Coleman will be here SOON! I'm ready to meet this little wiggler that's in my belly and really see what he looks like! And can't wait to give him so much love :)
Thank you for everyone's continuous support and prayers!

Appointments with small scares and happy surprises

Since my last update on appointments, I've had a few doctor appointments...

We toured the NICU at the hospital I'm delivering at and talked to one of the neonatal doctors. It was interesting seeing the NICU and some of the babies in there. They all looked so tiny. And some hooked up to so many things, I thought, "that will be our baby". We talked to the doctor and she just went over some things with us. I was a little nervous because I wasn't sure they would have had any HLHS babies before. She said they have had them before, not many, but have had them. She said there in the NICU was where he would be after delivery and they would start his lines and meds there. She said Matt will be able to go with him. It made me feel good to know Matt can go with him and he'll at least have his daddy close while they hook him up. And Matt will get to visit him with other visitors and I will get to visit him sometimes. It was nice to get a better picture of what will happen and where he will be!



I see my OB doctor and have NST (non stress test) twice a week, in the same appointment. I saw them last Monday. The NST measures baby's heart rate with their movement. Little stinker was moving so much he moved away from the monitor a few times and kept having to be adjusted, but in the end it was all normal. I had blood drawn just to check for preeclampsia and it came back normal.

We saw Dr. Sharma (pediatric cardiologist) last Wednesday. It was just a follow up appointment for him to look his heart over again with ultrasound/echo and make sure everything was the same as last time. Dr. Sharma is really nice and asked how we're coping with everything. Doing the best we can. It took him a long time to look over his heart because Coleman kept moving, flip flopping back and forth. He would find what he was looking for and be about to take a picture, then Coleman would flip over. Dr would say, "Ok well we'll look at this part then". He had to zoom out and back in every time he moved to keep up with what position his heart was in to tell what was what. And to top off all the moving, Coleman got hiccups lol. I smiled because that was the first time I'd been able to feel him have hiccups and I could see them on the monitor, his whole body would jump about every 10seconds. I was excited about it. The doctor wasn't so much lol but he was very patient with everything and never once got frustrated. My little wiggler put him to work! During the echo he had said Coleman's aorta seemed an OK size and that at least they won't have to reconstruct one for him in surgery - a little good news. But after he was finished he said he reconfirmed he has hypoplastic left heart syndrome and it's still a severe thing. He told us again that him or one of his colleagues would be on call and come at delivery to check him and do an echo on him. He answered some questions we had. One main question I asked was if I was going to be able to hold him before they took him. He said I would be able to hold him as long as he's not in distress, as a normal baby. Me and Matt would both be able to hold him. That made me so happy and tear up. I want to get to hold my baby!


Last Friday I had another OB appointment. I was seeing Dr. Cox, first time I'd seen him before. They always measure me and listen to his heart. He said his heart rate was high, about 188, and he asked if he'd been moving a lot because that could be the cause, and I said yeah a little. So he said he would see on the NST. During the NST Coleman's heart rate stayed about 185-202 the whole time, higher than a normal rate. I was praying, "God please don't let anything be wrong with him". The nurse came in and checked my temperature, it was 99.5. She said the doctor was looking over my NST (they can check it from outside the room). I was hoping nothing was wrong. The doctor came in and said his heart rate was still high consistently. He said he called Dr.Allaire to consult him about it and if it could be related to his heart defect in any way. Dr. Allaire said no not likely and asked if I was sick and to check if I had a fever. So that's why he got the nurse to take my temp because I hadn't said anything about feeling bad. I've had a cold off and on since I've been pregnant, I felt ok and figured I was getting over a cold, so I didn't mention anything. He said a fever can cause the baby's heart rate to be high/tachycardia. He gave me Tylenol and said he would keep me on the NST monitor another 20-30mins to see if it helped, if not he said he would send me to this hospital for blood work to check my white blood cell count for an infection, and to be monitored for a couple of hours. I sat and watched the monitor longer and Coleman's heart rate stayed high. Dr. Cox came back in and said he was sending me to this hospital for the blood draw and to be monitored for a little while. He said he honestly thought it was just because of my fever and that I would be fine to leave within a couple of hours, but he just wanted to make sure. I asked how this could affect me or Coleman and he said he wanted to give me the worse case scenario so I wouldn't be wondering what would happen. He said worst case scenario, Coleman's heart rate won't go down and that puts the baby in distress, they would have to deliver. But he said he really didn't think it was going to be a worst case scenario, he really thought it would be fine in a couple of hours and he wrote me a prescription for sinus infection.

I ate something really quick because I hadn't ate lunch yet and then went on to the hospital and met my mom there. I got into a gown and all hooked up to their monitors and we waited. They came and drew my blood. They said I had an irritable uterus, it was contracting about every 5 minutes, but not a constant time and not anything I could feel. We talked to the nurse I had for a long time, she was really nice. I told her about his heart defect and she told me a story of a little girl she knows with something similar and how she was doing really good. I asked her if they put all the babies born there on pulse ox monitors (monitors heart rate and oxygen level), and she said no she didn't think so.
 I had read CHD/HLHS moms getting petitions signed and passed to make hospitals do this because it can show that a baby has a heart defect. A lot of heart defects aren't caught until after birth and sometimes that's too late. A simple, painless test could save a baby's life, and most hospitals don't do it.
Anyway, we waited a little while and the nurse came back and said I was good to go home. Coleman's heart rate had came back down to normal and was doing good and what it was supposed to be doing. She also said my blood test was normal. So, his heart rate was up because I had a fever. I needed to take the antibiotics Dr. Cox had wrote for a sinus infection, take Tylenol for fever, drink plenty of fluids, and rest.
This baby's not coming out yet!

Matt didn't get to come to the hospital while I was being monitored because he was at work and I didn't want him to have to leave. We need him to have as many hours saved as possible. He called and text many times while I was there though! He's nervous for anything happening to me or Coleman. He has been very good at checking on me and making sure I feel ok and not doing too much. He doesn't want me doing anything! I'm so blessed to have him. Such a great caring loving husband. He really keeps me together through everything too!

I followed up with Dr. Cox today. I am now 34 weeks. He was glad everything was ok like he thought. He measured my belly and asked when the last time anyone had measured him was. I told him Dr. Allaire did last and I laughed and said he feels big! He said yeah he kinda does. He looked it up and said his last measurements were good and average so he wanted to check my fluids to be sure they were ok too.
So I had a quick ultrasound to check my fluids. The tech was measuring everything and had it where you could only see the back of his head. She said he has hair. I said, "He has hair?!". She said yep and went back and showed me what she said was hair after she said my fluids were good. I laughed and was so happy. I've always hoped he would have hair. I told Matt a couple days ago looking at the back of his head with his hair stick out under his cap that I hope he was hair like his is full and curly in back. Coleman may not have a lot of hair, but at least he has some! My NST was good too, and for once I had to try to make him move enough during it. The doctor said everything, fluid and NST was good. He said, "I bet it's great for you to hear anything is normal!". I said, "Yeah it's true, we barely hear anything is normal anymore.". That was probably my happiest ultrasound because I was so genuinely happy and it was such a good surprise to have after everything else going on.

So we had some scares, but some small happy news too. It was good to get some questions answered and have a couple of things to smile about, like holding him and him having hair. The little things make me so happy. I still struggle of course with my feelings and about certain things. Things make me sad and frustrated. Things that people take for granted and I feel that they should appreciate what they're given. But I try to think their situation is different than mine and their worries are their own.
 But I won't get into all that right now. I will be happy about the baby that we're blessed to have :) and no matter what happens we will always be blessed that we have Coleman. He's touched our lives and so many others already.
Praying our little heart warrior will get to grow up as a miracle and touch many lives!

My emotional roller coaster...letting out my insides

My emotional roller coaster...letting out my insides
I'm trying to let go of some of what I'm feeling. A lot of emotions will be shown here.

So before finding out about Coleman's heart defect, I was super scared to become a mom. I was scared for the huge change that was coming. Scared of taking care of a little person that depends on me. I was even scared I may not have enough love to give. I told Matt all the time, "I'm scared". I was scared I wouldn't be a good mom, maybe I wasn't cut out for it. I wanted a baby, I was just scared.
All of those emotions feel silly now. Since we found out about Coleman's heart, it all changed. I have felt a huge need to take care of my baby. To love him and protect him and fight for his life. Matt and I are his chance at life. (One option doctors will give parents with HLHS babies is to terminate, the baby won't live without the surgery. How could someone do that?) I feel like it's my place to kind of 'give him a voice'. Matt and I both are going to fight to keep our baby. Matt says, "I'm going to fight to keep my boy." and it always makes me smile. I feel like I love Coleman so much more now. I'm still scared of the change that's coming. But I'm the most scared for my son's life before we even really get to know him. I'm scared he may not make it. I'm sad that he has to go through what he does. He's just so little.
I feel sad that Coleman comes into the world and gets prodded, cut open, ribs cracked, insides open, the pain he will be in recovering. It all breaks my heart. A baby should be comforted after being born and shown the world is a good place to be. My baby gets somewhat tortured and has to fight to live. I know he won't remember surgery when he's older, but that doesn't stop me from being sad about it now. I know he has to have the surgery to live, but I wish he didn't have to. It's not fair.
It's not fair I don't get to take my baby home from the hospital like most people do. I may not get to hold my baby when he's born. He won't be in the same room with me after delivery. He has to be hooked up to lines and medicine right from birth so his heart won't fail right away. He has to go through so much between surgery and recovery. I have to watch him endure all of this. I have to be ok with all of this and give permission to cut my baby open and crack his ribs open that he just formed in my womb. I won't get to hold him for what will seem like an eternity to me. I will be scared to hold him when I am able to because he will look so fragile and gone through so much already. I won't get to feed him. We don't get to take him home and complain about all the gross newborn diapers we have to change. The little things. It's not fair.

It's not fair. There's so many people around us having babies, all perfectly healthy. And I wouldn't wish this on anyone. But it's not fair. We never thought our baby would be going through all of this. We were shocked to find out about it. You think things like this won't happen to you. But it happened to us. And I'm put in the position again of asking God, "Why? Have I not been through enough?" And then I wonder why God would give anyone a baby like this. One that won't live unless the baby has surgery. What if the surgery didn't exist? Does God want us to keep this baby? These are things that come into my head. Obviously God has a plan for Coleman. We're praying God has a plan for him and that he gets to grow up and have a life. I feel guilty questioning these things knowing it's God's plan. God picked us to be Coleman's parents. He knows we can do this. We can handle this and we'll get through it. It's not going to be easy. It's going to be a long road and it's going to be really hard sometimes, but I think God knows we can do this. God doesn't give you things you can't handle. Again, it's not fair, but it could be worse. We are still blessed to have what we have. We just want and pray to keep our little boy. Something that some people have told me, "God only gives special babies to special people."

I follow and read some stories on HLHS babies and families. It helps me know what to expect and not be surprised. It helps me to be prepared for everything to come. I don't look things up online anymore because I would come across sad and scary things. But I still follow these families and babies. Sometimes one will come up that the baby doesn't make it. (I don't go looking for these things, so please don't lecture me.) After reading things like that I feel so sad. I feel so sad for the family and the baby. I always think these families were probably just as hopeful and prayed as much as we are. It becomes real that it can happen to us. I get so down. I'm on the verge of tears all day. Imagining losing my baby, it's an awful and sad thing. People always tell me, "You can't think like that. You have to be positive.". Well I think I do a pretty good job at being positive the majority of the time, but I just can't be ALL the time. I just can't do it. People tell me I'm a strong person, and that makes me feel good. But I can't be strong all the time. I'm scared for my baby's life. I want to keep him. As I said in another post, I think it would be wrong not be upset about it. It's frustrating at the same time because no one understands what I'm feeling. People tell me to calm down and be strong, but I know they just don't know how I feel. If they were in my position they would be scared and crying too. I have connected with a couple of mom's who have gone through this or are going through this and it's nice to talk to someone who understands. Someone I can vent to and they don't just tell me "it'll be ok" like most people do. It's just not ok. It's not ok my baby has to fight to live. He gets taken away from me at birth and cut open. He has to be in pain and recover from the surgery. And even after the surgery, he still may not make it.

I feel so much more connected to Coleman now and love feeling him wiggle inside. He feels stronger everyday and that makes me happy. He will be strong and needs to be strong. I look at and rub my belly saying "I love you Coleman and we'll fight for you"
I'm just a new mommy loving and protecting and worrying for her baby. How can I be so positive and strong all the time? I'm naturally worried and scared for my baby. We love him so much already.

These are just a few of the things that go through my head that break me down and I cry about. I will make another post letting go of even more emotions another day.

There's not very many things people can tell me to make me feel better. I think people don't know what to say to me most of the time. That's ok. I understand. Just telling me you'll pray for me and Matt and Coleman is the best thing. I love the love and support we get. And I really appreciate the prayers. So please pray for us. It's the best thing anyone could do.

doctor appointments, test results, ultrasounds, and of course feelings since finding out about Coleman's heart

After seeing Dr. Sharma a lot of our questions had been answered. But hearing, "your baby has the most severe heart defect he could have" we were still very scared. It's taken me a while to process everything that is going on. I'm still processing it. I'm still emotional sometimes. I pray God takes care of our baby. But I still cry. That's our baby's life I'm afraid for. It would be wrong not to be upset about it.
After more people found out about Coleman's heart we got a huge outpour of love and prayers and support. People would tell us they're praying for us and we're on their church's prayer list. So many people have told us that and I can't even tell you how touching that is to know that so many people, people we don't even know, are praying for us and our baby. It has been heartwarming to know so many people care about us. And I think people telling me they care and are praying is the best thing anyone can do for me or tell me right now. We are blessed with a huge support system and I want to thank anyone who is praying for us! We appreciate for than you know and it means so much to us!

So continuing to appointments...
We really haven't had many appointments since then. But that same week of finding out we did already have a 4D ultrasound scheduled for Saturday. We went, our families and all, and that little stinker had his arm in his face the whole time! Sleeping like his daddy. I say he was just tired of being looked at after his last 3 ultrasounds that week. Little disappointed, but we scheduled a redo for 2 weeks away.  I have to be honest and say what I was really feeling that day. We left and Matt was excited because for a very split second we caught a small glimpse of his face and Matt thought he looked just like him. Matt asked what I thought and I started crying. I said I feel like maybe God doesn't want me to see him that maybe he doesn't want me to see him and get more attatched to him if something happens to him. Matt calmed me down and said that's not true. Matt has been the strong one through this being a great rock for me and the best shoulder to cry on. Don't get that wrong, he is just as upset as I am, but he does great at calming me down. I've told him many times it's ok for him to be upset too. And he does get upset. But I'm the more emotional one. He tried his best that day to make it a good day and to try to make me smile as much as he could. And a hug is a great thing.

My next appointment was my regular Ob visit. I saw Dr. Lake. That was the first time I'd seen him before. There are 6 doctors in the group and usually see a different one each time. He seemed genuinely concerned. He said I would see Dr. Allaire again and made that appointment for me. He said at my next appointment, 2 weeks, I would start coming in twice a week for non stress test (monitor the baby's heart rate and contractions), plus my regular appointment with the doctor, plus ultrasounds. I asked about my 1 hour glucose test results because I hadn't heard anything and wanted to be sure no news was good news. He looked at it and said the last Dr. I saw had passed me on it, but it was 1 point on the border and he would rather I just do the 3 hour just to be sure. I was fine with that. Anything for Coleman.
He said I needed to take the 3 hour glucose test that week so I came in the next day for it. Fasting after midnight. I hadn't ate or drunk anything. For the 3 hour glucose test you come in and they draw your fasting blood. Then you drink the super sugary drink and wait an hour for them to draw your blood again. Then wait another hour and draw again and then again for a total of 4 blood draws. It wasn't that bad. I drunk the drink in about a minute and was ok until the last hour. The lady had trouble finding a vein the time before so I'd already been poked a couple extra times. The last hour I went in for the blood draw and was happy I would get to go home after this one. It took a while for her to find a vein this time and she put a needle in both hands and arms before finding a spot. I got really hot and sweaty and she asked if I was ok. I said I'm just really hot. Finally she was finished and I could go. I felt so dizzy and light headed walking to the car and a little disorriented looking at my phone. But I just wanted to get outside where it was cool and eat the food I had brought with me. I sat in my car for about 10minutes and just sat and ate. I went through a drive thru for food and went home. I told my mom I'm pretty sure God drove me home because I just wanted to close my eyes. I was glad that was over!
The next day I missed a call from the Dr. office. I thought "crap I bet they're calling to say I failed my glucose test". I called them back and they said they were calling to tell me I passed! I passed! I said "Oh thank goodness! I thought you were calling with bad news!" She said my last blood draw was low (surprise suprise) and that I needed to try not to ever be empty. This was great news to me and I was excited about it the rest of the day!
We hadn't heard back from the genetics test they did at Dr. Allaire's office yet. Dr. Lake tried to call and get them, but they weren't in office. He said call them until they answer. I left them a message and it was a couple of days until they called me back. The lady said she "called to tell me the genetics test came back normal" Thank God! "and it's a boy" lol we already knew that, but I had such happy tears in my eyes! We didn't think he would have any genetic defect, but it was so great to confirm it. One little less thing not to worry about. I text Matt and told him right away.

The next day, a Satuday, was our redo for 4D ultrasound. I was nervous about whether we would be able to see him or not this time. Our familes came with us again. And my heart smiled as we saw...

 

Our next appointment was just yesterday with Dr. Allaire. Matt's birthday, and lucky or not for him he was on call the night before and worked all night so he had the day off. We were both pretty tired because I don't really sleep when he's gone. But we went shopping for him all day and had our appointment with Dr. Allaire. It was pretty short appointment and it was only to look at Coleman's growth. They looked him over and said he's growing good! Measured him weighing about 4lbs 6oz. Big boy! Dr. Allaire scheduled us an appointment to see the neonatal doctors at the hospital I will deliver at and we go meet them and see the NICU Friday.

Next appointments coming up are the non stress test starting next week. Along with regular Ob appointment.
The next week we go back to see Dr. Sharma and he will look his heart over again. I have a list of questions to ask him for the next time we see him that I add to pretty often. So that will be a good appointment.
And sometime we will be going to the children's hospital to meet the surgeon and tour there.

Also coming up are my baby showers! One this weekend and my mom having a drop in shower next weekend. I'm pretty excited and excited to see everyone :)

I have felt very overwhelemed, especially after my last Ob visit when he told me all these appointments and things I had to do. I've had to stop and cry a few times feeling overwhelmed. But I'm handling it better now that I've caught up on a few things and Matt is trying to help me not to worry about any of it. I'm thankful for a great husband! He will be a wonderful daddy.

I want to type more about my emotions and things I've been feeling, but I will make a seperate post about it.

Thank you to anyone who is reading this. It makes me feel good to know people are reading and people are praying. And it helps raise awareness for congenital heart defects (CHD)! I'll have to make a post sometime just about CHD.

Thank y'all!

the heart sinking news and what comes with it

We had our 20 week ultrasound/anatomy scan. This is where they look at every part of the baby. But most people get excited for this ultrasound because they find out the gender and get to see lots of baby. Our moms came with us and we got to see our little man for a while and we were all so happy to see. Our moms took lots of pictures where their phones. The only thing the technician said was that the way he was positioned, on his belly, she couldn't see his heart good enough. We didn't think anything of it.

At my 24 week appointment it was just a short routine appointment. They listened to his heart as always and measured my belly and told me what was going to go on at the next appointment, the glucose test. The doctor also said at my next appointment (28 weeks) I would get another ultrasound because they couldn't see his heart good enough on the anatomy scan. He said not that they could see anything wrong, they just couldn't see it good enough. He gave me the drink for the glucose test so that I could drink it at home and come in for the blood draw and appointment and not have to wait an hour there.
I was really nervous for the glucose test. I'd heard horrible things about it. And I was really scared I wouldn't pass it and I would have to eat certain things. I didn't know what I would eat if I had it. I thought "it'd be my luck I would have gestational diabetes and not get to eat what I want" I was so scared.
Matt went with me to that appointment to help calm my nerves about the test and because we were having another ultrasound. The glucose test wasn't bad at all, super quick and easy. The doctor had already seen me and did his routine. The only thing he said was my hemoglobin was a little low and I needed to take extra iron and he gave me some samples. I reminded him we were suppose to have another ultrasound to look at his heart and he put us in line for that. Me and Matt waited for that and I told Matt to watch my belly. It was twitching around with him moving all over. That's the first time he'd really seen my belly move. They called us in to the ultrasound room and we walked over to go in. I remember the lady at the desk telling the other one she would do the ultrasound "it was only to look at the heart". We went in and she did her thing. We made small talk and me and Matt were just happy to see our baby again. She looked at his heart a while and kept moving the probe all over and said she just couldn't see it all. She did look at it a while though. She finally got done and said she would go tell the doctor. I started getting a little nervous about why she needed to tell the doctor anything. Matt tried to calm me down and said it's ok. The doctor came in and said that they still couldn't see all parts of the heart good enough and that they were going to send us to see Dr. Allaire for an ultrasound and that they have a better machine and can see everything better. That's what they specialize in. Basically a level 2 ultrasound. I started getting a little panicked and asked could something be wrong and what could it be? The doctor said he wasn't sure, but that Dr. Allaire would be able to tell anything. They got us an appointment to be sent over right away. I started crying on the way out of the office. Matt was still calm and trying to calm me down because they hadn't said anything was wrong, but he was still a little bit nervous I could tell. We got Dr. Allaire's office and waited a little while before a lady came and got us and started the ultrasound. She looked at everything in great detail and told us what she was looking at. I had asked her small questions like when she mentioned the cord I asked does the baby get wrapped in the umbilical cord. I was trying to stay calm. Matt was sitting near my feet watching the screen.
  Dr. Allaire came in while she was still scanning. He started looking at the heart right away and about a minute later said that he did see something wrong with the baby's heart. My heart sunk and I looked over at Matt sadness stricken as he walked over to sit by my head and hold my hand. The doctor went on to say that the baby's left ventricle was not developed and that this was a complicated heart defect. He said he would diagnose it as Hypoplastic Left Heart Syndrome (HLHS). He said there were other things like a couple of the valves weren't developed. He was telling us so many things my brain went into override with all the information and emotions. He also told us that these type heart defect can be linked to genetic defects. I looked over at Matt and my heart sunk again even further. (For those that don't know, one of Matt's sisters has Down's syndrome). We had opted out of the genetics test at 12 weeks because we didn't want to worry about it and it wouldn't have changed anything. The doctor was giving us all of the information at once and I was in shock. I was crying. I had a lot going through my head, "Is he going live?" being the main thing. He did tell us that the baby would have to go through surgery after delivery. That there was a 3 stage heart procedure that baby would have to go through. One at birth, one at about 3-6 months, and one at 3 years. He also told us that I could still deliver vaginally, I wouldnt have to schedule an induction as of right now, and that I would be able to deliver at the local hospital still that they would transport him to Egelston, the children's hospital. Information overload! He told us we could get genetic testing done, an amniocentesis or a blood draw. We decided to go ahead and get the blood draw while we were there. We sat it small room on a couch and I cried for a while while we waited. Matt was researching HLHS on his phone and trying to be strong and calm me down at the same time, but he was upset too. I felt like we had been thrown in a whirwind and our world was coming apart. This is when the 'Why us?" feeling began. Dr Allaire set us up an appointment with a pediactric cardiologist, Dr. Sharma, for as soon as he had an opening. He said they would be able to tell us for sure everything that was going on and the positive diagnosis. Dr. Sharma's main office is in a different town, but he would be able to come to his Gainesville office just to see us the next morning.
We left Dr. Allaire's office and I cried more.This huge thing had suddenly been put on us, our baby's life was in danger. We weren't sure what all of this meant. We just knew we wanted to keep him and love him and let him be able to live his life. We were already so attatched to him and now knowing this and having to fight for his life, I'm pretty sure we're attatched to him even more. We were both just in shock and right away scared for our baby. I felt sick. I hadn't ate all day because of fasting for my glucose test. We went to Chickfila and ate. We both barely ate any of our food. We still had to tell our parents. Matt called his mom and told her while she was at work. We went by my mom's house because she was off that day. She instantly started crying and we tried being strong for her telling her he would be ok and about all the surgeries. We went home and talked and I cried and rested. But I couldn't let my mind rest. I called and told my family and texted my friends. I was very emotional. By that night I had already had so many people tell me they were praying for all of us and so many peoples support it was amazing.
The next day we were the first car at Dr. Sharma's office. We waited for them to unlock the door and went in and waited. As soon as Dr. Sharma came in we came back with him. We went in the ultrasound room and Dr. Sharma looked at Coleman's heart for about an hour. He looked at every detail of the heart so he could see exactly what was wrong. It took even longer because Coleman was being a wiggle worm. After he got finished looking we went and sat at a table with him and he explained everything to us. He had 3 print outs of hearts. He showed us a normal heart. He showed us a baby's heart, a baby's heart has holes that stay open until a few hours after birth. And he showed us Coleman's heart. He said Coleman does have Hypoplastic Left Heart Syndrome, the left side of his heart is underdeveloped. He does not have a left ventricle, the main pumping chamber. He said his mitral valve is extremely small. He said he has double outlets, the blood does not circulate like a normal heart and the blood mixes together wrong. He said his aorta is a little small. All these things related to HLHS. He said HLHS is the most severe form heart defect he could have and that it is fatal without surgery. He did say it was a little more mild because his aorta is exteremly small. He explained the surgery to us, but it was complicated so I won't even try to type it. He said at birth him or one of his colleagues would be there and that Coleman would have lines put in him to keep the holes open and meds ran. He said I would still be able to deliver at the hospital here that it wasn't an urgent right away thing because of the lines. They would be able wait until a bed opens at Egelston, within a couple days, to transport. He told us there were 2 or 3 doctors at Egelston that specialize in pediatric cardiology and one would be doing the surgery. He said recovery time varies with each baby so it would depend on him. We asked a few questions and he could tell we had already done some research and seemed more prepared for what he was telling us. He said the pregnancy is high risk now and I would have appointments more often with my Ob to do non stress test, to monitor baby heart rate and contractions, and more ultrasounds there. He also wanted us to follow up with him in about a month so that he could do another ultrasound and make sure everything is the same.  We felt like we had asked all we wanted and he did a good job explaining things. We felt more knowing about what was going on, but of course still scared.

 





 

 

 

After finding all of this out I have been an emotional roller coaster. I've been very down, especially when first finding out. I still break down now and cry. I do believe God has a plan and it's in his hands and to trust him, but of course I'm still scared for my baby. It's only natural. The best thing I can do is take everything one day at a time. We've really appreciated the huge amount of support and prayers we're getting. It feels good to know that many people care and are praying for us. We really need that.

I will update more later about more doctor appointments I've had and my test results and ultrasounds and my emotions and feelings. I wanted to get the main part of the background down tonight before bed. If I left anything out about Coleman's condition or the delivery or whole process that you're curious about, let me know and I'll be happy to answer it. I really don't mind talking about it at it. Yes, I'm emotional, but I love talking about my baby :) and I would love to help raise awareness about CHD and Coleman's condition.