Busting out of the NICU

Tuesday (11/25/14) was another uneventful day. We spent the moms in part of the day holding Jay and trying to nurse.

At some point, we got word that he might be getting moved out of the NICU to a different nursery. I, of course, was ecstatic because I figured that was just one step closer to being home. Later that afternoon, we found out for sure that he was getting moved to the Special Care Nursery.

Around 4:00 we packed up all of his things and the nurse wheeled his bed doe the hall to the new nursery. Jamie and I had gotten so used to the procedures and “way of life” in the NICU that it was sort of a adjustment to be in a new place with him. I was so used to having a nursery by his side constantly.
There were 9 babies in the SCN and 3 nurses. The room was much more open and there wasn’t always a nurse right by his side.

I immediately learned that the grass isn’t always greene on the other side and life in the NICU wasn’t so bad. I had been so focused I getting out of the NICU that I wasn’t even aware of how lucky we were to be in there! The nurses in the SCN were just as amazing, but the unknown place made it very nerve wracking to leave him that night. I remember saying “what if he cries and they don’t hear him or if they are busy with another baby?”

I wanted to be back in the NICU in our little corner with his own nurse, and wished I wouldn’t have rushed trying to get out of there.

Life in the special care got better, of course, and we grew used to having a little more freedom with our boy!

Going to bed in his new place in the Special Care Nursery!

One Week Old

Sunday:

Jay was one week old that Sunday. We woke up early and headed to the hospital, for what had become out daily routine. The day was fairly uneventful for Jay…

We spent a lot of the time snuggling and trying to nurse. I began to question my ability to be able to breast feed. Jay was having a hard time latching, and I was beginning to prefer to give him a bottle. He was good at taking the bottle and was taking more and more milk at each feed.

I also began to question my supply of breast milk on Sunday. I was given a chart stating how much milk I should be producing by the end of the first week and I realized I wasn’t making even half of the 15ounces I should have been able to. Because we were running out of pumped milk, we decided to supplement with formula so that Jay could continue to take more at each feed.

One issue that the doctors brought up were platelets. Jays platelet count in his blood would not stay up. They had to give him several transfusions to make the platelet count go back up. His platelets would stay up for about a day, then drop a little bit, then plummet. This happened 2 or 3 times.

Monday:

I called our nurse on Monday morning to check on Jay, when we were on our way to the hospital. She told me that she had to give him another transfusion for the platelets. When I heard this, my heart sank because this was another thing holding us back from going home. Jay was getting better and better at eating but we wouldn’t be able to take him home until he could regulate his platelets on his own.

When we went to rounds on Monday morning, we got some scary news. The doctors were concerned that there was a blood clot somewhere in Jays body, and that that could be the reason for his platelets to keep dropping. I immediately began to freak out, thinking how a blood clot can travel to the brain. They informed us that Jay would be getting and ultrasound later that day to confirm whether or not he had a blood clot.

I was extremely upset after hearing of the possible blood clot. I was crying and could t get myself under control. I literally couldn’t stop crying! The nurse told me that I should go home and get some rest because I was just so physically and emotionally exhausted. I hated to leave Jay, I felt like I should be there with him, all day, every day, but I knew I needed to rest.

During all of this, I met with a lactation consultant to talk about the issues we were having. Jay not wanting to latch and my supply issues. She suggested that I rent a hospital grade pump to take home with me. I had to walk with her to labor and delivery to get the pump. I sat I the waiting room, full of people waiting for new babies, and all I could do was cry. I felt sorry for Jamie and myself and jealous of the happiness that filled the waiting room.

After we got the pump, we headed to my moms. On our way, my sister called and asked us to meet them for lunch, so we did. When we walked into the restaurant Nicholas (only 16 months old) walked straight up to me with his arms out, when I picked him up he gave me the biggest hug around my neck. It was like he knew I needed that hug, and he would t let go. I immediately burst into tears, in the middle of the restaurant. After lunch, we went to my moms to try to get some rest. We ended up sleeping for almost 4 hours. When we finally woke up, we headed back to our boy.

The rest of the afternoon was holding, feeding, and trying to nurse. We also got results back from the ultrasound and there was no blood clot! The doctors seemed stumped as to why his platelets kept dropping so they consulted hematology. They decided that the platelets were a lingering side effect from the cooling blanket and that it should work itself out in the next couple of days. Yet another waiting game…

Before we left for the night, we got to give Jay his first bath. Jamie gladly did the bathing and I recorded videos and took plenty of pictures! It was a happy time, but it didn’t last for long…
When we left, Jay was awake, for the first time, and it absolutely broke my heart (even more) knowing that he was laying there wide awake as we walked away for the night, leaving him alone….

Snuggling my boy

Fresh and clean after his first bath

Friday and Saturday

Friday morning came after trying to sleep in the waiting room the night before. I was dreading Friday morning because it would be the first time I had left the hospital since the previous Saturday, and I was leaving my baby behind.

We stuck around for a little while Friday morning to go to rounds with the doctors. There really wasn’t a lot of updates at rounds. We were working on feeding him more so that they could reduce his TPN (the nutrition he was getting through his IV) the more he was able to eat, the more the TPN could be reduced and he would be completely eating on his own. He had to LEARN how to eat: suck, swallow, and breathe all at the same time. Once he could eat on his own, we would be going home…

We left the hospital somewhere between 9 and 10 and went to my moms to shower and try to get some rest. I cried the whole way to the car and the entire drive home! It was the worst feeling ever to be leaving Jay at the hospital.

When we got to my moms I told Jamie I was going to nap for an hour and then I wanted to get back to Jay. I ended up sleeping for over 3 hours!! I was just that exhausted. Jamie even had to wake me up. I showered and we headed back down to the NICU.

The rest of that afternoon was spent practicing the nursing whenever he showed signs of hunger. And lots of holding our sweet baby!

At some point, one of the doctors came by his bed to give us the results of Jay’s MRI. She said that it did show brain damage to the central part of his brain and the spinal cord. She really didn’t seem too concerned about it or act like it was going to be a huge obstacle for us. She said it could cause some delays but most likely he would be ok. Pretty much we would have to wait and see how he developed as he grew. That made us feel a little better.

We stayed at the hospital until after 9pm, and Jamie had to practically drag me out of there. The moment I had to say goodbye to my baby absolutely broke my heart. And again I just sobbed the whole way home.

Kelly was his night nurse again, the same one he had Thursday night, and I felt a little relieved because I knew she would take great care of him. She reassured me that I could call her as many times as I needed to to check on him.

Even though I didn’t have a baby to wake me up throughout the night, I was still having to set my alarm to pump every 2-3 hours. Those pumping sessions were some of the loneliest and saddest times I had to deal with. No one else was awake and I would just sit there and pump and cry the whole time. I would call and check on him every time I woke up.

Saturday, I was up before 7 and we were heading to the hospital before 8 am. I was so ready to get back to my baby! Saturday was A LOT more nursing practice for Jay. And, he wasn’t doing very good with it at all…

I don’t think he successfully latched at all. But, I was still pumping, so there was some milk stored in bottles for him.

Jamie’s mom, stepdad and granny came to visit on Saturday. We were able to let my mom, Jamie’s mom, and Granny hold him that afternoon!

I am in no way trying to talk badly about the nurse we had on Saturday, but our personalities did not mesh well together. I felt like she was very pushy all day with the nursing and wouldn’t listen to me about giving him a bottle. She even sort of scolded me about not talking to him while trying to nurse so he wouldn’t get distracted.

As I have already said, he wasn’t having very good luck latching and nursing. And again, the nurse wouldn’t listen to me about giving him a bottle, so on Saturday evening I asked to speak with an attending.

That was probably the worst conversation that we had the entire time we were in the hospital. She was a doctor that we had not dealt with before and basically told us that Jay was extremely sick and probably wouldn’t be able to learn how to eat, and that he would probably be getting a feeding tube sometime that night or the next day. She said his brain damage was so severe that he had a 50/50 chance at developing Cerebra Palsy. All of this was a complete shock! The other doctor we had been dealing with at rounds seemed much more optimistic with Jay’s condition. I couldn’t believe the things she was saying about my baby, and I could literally feel my heart breaking! It was the worst experience by far. We basically ended the conversation with me saying that I wanted to try a bottle because I didn’t think his problem was the eating, I knew it was the nursing. The doctor basically told me again that he wouldn’t be able to do it, but she allowed us to try….He sucked down a 2 ounce bottle like he was starving! I knew then, that he would be able to learn how to eat.

When we came out of the meeting with the attending, we saw our favorite nurse, Allyson, as his night nurse. It made me feel better to know she was going to be with him all night. I was so incredibly happy to see her face after the disheartening conversation we had just had. After she saw him suck down the bottle, she promised me she would not be giving him a feeding tube. She just made me feel so much better.

But, I was still so sad to say goodnight and goodbye to our boy and leave him laying in his little NICU bed. Crying the whole way home was becoming a repeat activity for me. Here he is all ready for bed on Saturday night.

Thursday 11/20/14

Thursday was the day we had been waiting for… Jay was finally warmed back up and we were hopefully going to start getting some answers on his condition.

I was so excited to go see him not on the cooling blanket. My dad and stepmom were planning on leaving that morning, so they came by the hospital one last time to see him before they left. I went back with my dad and we both saw him without the cooling blanket for the first time. His nurse had him laying on his tummy and he was actually squirming and grunting a little bit. Those little squirms and grunts made me so happy, because up until this point, I hadn’t heard Jay make a single sound. Here is a picture of Jay and my dad after he got warmed up.

After my dad and stepmom left, Jamie and I waited for rounds. When we finally got to rounds, I got some of the best news so far… They were going to let me finally hold my baby!! It was time for me to pump, so the doctors sent me back to my room to pump and get showered then I could come back upstairs and hold Jay. I couldn’t get out of there fast enough to get the pumping over with. And I’m pretty sure I took the worlds fastest shower because I was so ready to finally hold my baby.

We made it back to the NICU and the nurse wanted me to do skin to skin with Jay. She said she would go get a screen to give us some privacy, but at that point I really didn’t care who saw me without a shirt on I just wanted to hold him. I told her I was fine without the screen and discreetly pulled my shirt down. It took several people to help get Jay situated because he still had wires and iv’s all over him. Then they finally gave him to me! It was seriously the best feeling in the world!

The lactation consultant was there and was trying to get him to latch and nurse, but he didn’t like everyone pulling on him and moving him around. We were both getting frustrated and I politely asked for a break. After everyone left us alone, I worked on the latching and he did it right away! He didn’t nurse very long but it still made me feel good that he latched at all.

Next, it was Jamie’s turn to hold him. And I know Jamie was just as happy as I was to finally have Jay in his arms. They seriously looked like twins!

As happy as I was to get to hold Jay, I had a pit in my stomach because Thursday was also the day I was being discharged and I wasn’t ready to leave the hospital without my baby. We decided that we were going to sleep in the Family Quiet Room that night. We moved all of our stuff from my room up to the waiting room and claimed two of the pull out couches to sleep on. My mom, Robby, Tanner, and Lauren brought us some pizza for dinner and stayed with us for a little while in the waiting room.

The whole time we were in there, it seriously felt like I was watching someone else’s life and felt so sorry for the people that were about to spend the night in a waiting room. Then the reality that it was me hit and I broke down crying for about the millionth time.

Jay was having an MRI done sometime overnight to check for any brain damage and I wanted to be there for that. I thought I was going to get to go with the nurse and Jay, which is truly why we stayed, but I didn’t get to go.

His nurse that night was named Kelly and she was so incredibly sweet! She took my cell phone number and anytime, throughout the night, that he woke up and needed to be fed, she would call me so that I could come try to nurse him. He never successfully latched at all but we just kept trying. Kelly also called me when they were leaving for the MRI so that I could walk down the hallway with them and she called me as soon as they were back in the NICU, so that I could come see hime again.

Needless to say, I hardly slept at all that night from going back and forth to the NICU. Friday morning we hung around at Jay’s bedside until rounds, which was fairly early. We had decided that after rounds we were going to take our stuff to my moms, get showers, and try to get some rest. We also decided that we couldn’t stay in the waiting room every night because neither of us got any sleep. There was no way I was going home without my baby, so we planned to stay with my mom until we could bring Jay home.

I knew I was going to feel strange leaving the hospital but I wasn’t prepared for it at all! I had been inside the hospital since the previous Saturday, almost an entire week and I didn’t step outside one time. I cried from the moment we got on the elevator, on the eighth floor, all the way to my moms house on James Island. It was a completely heart broken cry. I hated leaving my baby behind…. He was supposed to be leaving with us.

The First Days in the NICU

As I said in my previous post, Jay was taken to the NICU immediately to start the cooling protocol.  I was so out of it and just plain exhausted that I slept through most of the first afternoon of him being up there. I remember being wheeled from the recovery room to my hospital room with empty arms, and being devastated that I didn’t have my baby with me.  But at the same time, I was just so exhausted all I wanted to do was close my eyes and go to sleep.

My sister brought us some food because at this point it was 4:00 on Sunday afternoon and I hadn’t eaten since 12:00 on Saturday for lunch.  When she showed up with food, I didn’t want anything, and I remember people telling me I had to eat.  I choked down a few bites of food through tears and pushed the tray away and went to sleep.  I didn’t care who was in the room or what they were doing, all I wanted to do was go to sleep because at least then I couldn’t feel the heartbreak.

I would wake up every so often and look around at who was in the room with us and then roll back over and go to sleep. Jamie’s mom and stepdad drove from Florence that afternoon to come see us and see Jay.  My sister and brother were there and my mom and stepdad.  My mom stayed with us in the hospital room that night.

Jamie went back and forth to the NICU all night long to check on Jay.  My mom woke me up around midnight and told me I should go up there because Jay needed to hear my voice.  I just didn’t have the strength, mentally or physically, to go up there yet.  I went back to sleep and kept waking up every so often and just remembering how horrible the situation was.  The nurse told me she would be back around 6 to help me get out of bed and get dressed.  I was up and waiting on her around 5:30 and I was finally ready to go see my baby.

They all insisted on me sitting in a wheel chair, because I had just gone through major surgery.  I appeased them and let Jamie push me up to the NICU.  On our way up, he tried to prepare me on what to expect when I saw Jay.  Nothing could have prepared me how it felt to finally see my baby and also to see him the way he was in that tiny little plastic box.

It was completely heartbreaking and I immediately began to cry.  I vaguely remember his night nurse giving Jamie an update.  I just stood there and sobbed.  I couldn’t believe that was my poor baby laying there.   I honestly didn’t know what to think.  I just felt so sorry for him and I felt so scared of not knowing anything about his condition.  We didn’t stay there very long because the nurses were about to change shifts, so we went back down to my room.

The reality of everything started to hit and I knew we would be getting bombarded with phone calls and texts from friends and family because no one really knew what had happened.  Jamie and I decided it would be best to just post a quick update on facebook asking for our privacy because of the complications.

The nurse invited us to come to rounds with the doctors to get updates on Jay’s condition. She gave us a notebook to keep track of what the doctors said and to write down any questions.  That first time in rounds was very overwhelming.  There was so much medical talk and I felt like I was writing down every single thing they said to ask them what it meant.  That day we learned that Jay’s condition was called Hypoxic Ischemic Encephalopathy or HIE.  That mean’s a lack of blood flow and oxygen to the brain.  We were basically told that we wouldn’t have any answers until he was warmed up at the end of the 72 hours period. For the next few days there really wasn’t going to be much change in his condition.

As I said before, he was on the cooling blanket to basically induce hypothermia so that his brain would be getting most of the oxygen and blood flow.  He was on morphine to keep him sedated and not in pain so he didn’t do anything but lay very still.  He was getting all of his nutrition through his IV. He also had an IV in his belly button so that the nurses could easily draw blood to keep testing his levels.

After rounds, I met with a lactation consultant to get me started pumping.  It went well, but when you start out pumping instead of nursing you truly produce nothing.  By the end of the first day I was getting maybe one drop of colostrum.  I would literally scoop up the one, tiny drop in a syringe and send it upstairs to the NICU.  The nurse let me put a few of those drops on Jay’s lips, but because he was so sedated he didn’t have much of a reaction.  I was pumping every 4 hours and hoping to get more each time.

Throughout the day, we had some visitors: My mom, sister, brother, stepdad, and Jamie’s dad.  We didn’t want a lot of visitors and had decided we only wanted family going back to see Jay.  Every time I would walk back to see him, I would just start crying.  I tried so hard not to cry standing at his crib, but I couldn’t help it.

That night, after everyone left Jamie and I both just broke down crying in my hospital room.  I remember asking Jamie if Jay was going to die.  The question had been on my mind all day long and I was too afraid to ask it because I wasn’t sure I wanted to know the answer. Jamie said he didn’t think so, and that made me feel a little better.  We went upstairs to see Jay one last time and then went to sleep.

The following two days, Tuesday and Wednesday, were filled with the same thing.  We would visit Jay in the NICU, I would pump, and we went to rounds with the doctors.  Again, they didn’t really have many updates because he was still on the cooling blankets.

Every Time I wanted to see my baby, I had to ring a bell, get buzzed in, only after identified myself as “Baby Hulon’s Mom”, and scrub my hands before I could go to his crib. No mother should ever have to go through that!! It honestly made me want to cry every. Single. Time.

On Tuesday, my dad and stepmom got in and stayed with us in the hospital room for a while.  We also decided we would let some of our closest friends come visit us in the room, but told them we weren’t ready to let them see Jay.  It was nice to have my best friends laying in the hospital bed with me, but still so sad at the same time.  I kept thinking they should be coming to see and hold Jay for the first time.

At this point I was starting to dread leaving the hospital because I knew I would be leaving without my baby.  I spoke with a case worker and she worked something out with our insurance to where we were able to stay for one more day.  So, Thursday would be the day that I was being discharged from my room. I didn’t want Thursday to come!

On Wednesday afternoon, they started warming Jay back up.  It took over 12 hours to warm him up completely because they would raise his temperature a fraction of a degree every hour.  My mom stayed with us on Wednesday night, because that was a critical point for us.  Jay had been hooked up to EEG probes the whole time, to monitor for any seizure activity.  But, the doctors told us that one critical part of the warming process was that he could possibly start to have seizures. I was completely terrified the entire time he was getting warmed up.  I didn’t want him to have any seizures.  Jamie and I went to check on Jay every hour through Wednesday night and into Thursday morning.  We finally got some good news, Jay had no seizures, he was warmed back up, and we felt a little bit of relief!

Our Birth Story

Here’s our birth story, it’s long…

I had my 37 week appointment on Friday November 14. When we got there my blood pressure was high (around 135/85) my midwife said I was probably anxious and we would check it again before I left. We were also getting a growth scan that day to see how big he was. When she started the ultrasound, his resting heart rate was 94. I thought that was odd but tried to ignore it. As she started jostling him, his heart rate went up to the 130’s. Before we left they checked my BP again and it was higher (138/51). I was worried because my midwife had previously told me the point to worry about preeclampsia was 140/90. She said that my BP was fine and to just have my school nurse check it on Monday and call to let her know what it was.

I had a bad feeling in the pit of my stomach when we left and I just couldn’t seem to shake it. That night I bought a blood pressure cuff to monitor it at home over the weekend. All night and the next day it was consistently high (170’s/100’s). I wasn’t sure if it was accurate so I had my mom meet me at her office and check it manually, and it was still high. I finally called the on call doctor around 4:00 Saturday afternoon. When he called me back he said to come in immediately, so we headed to labor and delivery.

When we got to the hospital my blood pressure was 178/110. They hooked me up to the NST monitor and drew blood to check for PreE. I didn’t have PreE but he said since I was term he wanted to induce me because of my BP. It was around 6:30 when I got admitted and put in my room.

My cervix was not ready for Pitocin at all so they started another drug called Cytotec, which is supposed to soften the cervix. It is a small pill that is placed near the cervix, then you wait 4 hours and check to see if it is softened at all. We did 3 rounds of the Cytotec throughout Saturday night, which means I really didn’t get any sleep. Around 5 am Sunday morning the nurse came in with a cup of juice and told me to drink it to wake the baby up. She said he hadn’t moved in quite a while and his heart rate had no variability in it. It was at 150 but a straight line with no fluctuation. The juice didn’t do anything so she called a doctor. The doctor can in and looked at the monitors and wanted to do an ultrasound test on him to see if he was capable of handling the labor process. He did not pass the test and still wasn’t responsive. She had her hand touching and tickling the top of his head and he wasn’t responding to it at all.

At this point, around 6 am, they called for a c-section. I called my mom to let her know what was going on so she could come to the hospital. As soon as they called for the c-section his heart rate started having some variability to it and he was moving a little bit, and they decided to hold off and see what he did. At this time, my cervix still hadn’t dilated so they wanted to try something called a foley bulb, which is basically a deflated balloon put inside my cervix then slowly inflate it to manually dilate me. I asked for my epidural before we did that because it sounded super painful.

All along, they called for and changed their minds about the c-section 2 more times. I got my epidural and was about to get the foley bulb by one of the resident doctors, when the head attending came in to see what was going on. He looked at the chart of the baby’s heart rate and tried tickling his head again and no response. He said he wanted to get the baby out immediately and called for an emergency c-section. I was on the operating table within 5 minutes. They had no idea something major was wrong, just that he wasn’t handling the labor process.

When they cut me open the first thing they said was “that placenta needs to go to pathology” and as soon as I heard that I knew something was wrong. All of the doctors got very quiet and didn’t say much else about the baby. When they finally pulled him out someone said he had his cord around his neck and then said get ready you will see him very fast. They threw his head over the curtain and quickly took him to the stabilization room across the hall.

I was worried and crying and strapped down to an operating table. I kept asking the nurse if my baby was okay and she kept saying “I can’t tell you that right now”. The doctor told me that the umbilical cord had a clot in one of the arteries and showed me a piece of it. It looked like a candy cane, one of the arteries were red and the other was completely white because of the clot. He explained that the baby hadn’t been getting enough oxygen from the cord.

Meanwhile, in the stabilization room, Jay received 2 minutes of chest compressions and was intubated and put on the ventilator, all while Jamie stood there and watched them. When they pulled him out he had no pulse and no respiratory efforts. He not only suffered a lack of oxygen in utero he also went a few minutes without oxygen when they were working on him. They brought him to the recovery room in a clear plastic box and told me they were taking him to the NICU to start a cooling protocol immediately, to try to stop any further brain damage from occurring.

There were so many doctors talking to me and explaining what happened but I was so out of it I just kept saying “I can’t keep my eyes open”. I was exhausted and don’t remember much about the rest of the day. Jamie was the one who went to the NICU with him and was completely aware of how serious the situation was. He has told me that he was afraid I would never get to meet Jay that day.  He went back and forth all night between being with me in my hospital room and being with Jay in the NICU.  And I know he was completely terrified.

The next morning I was finally able to get up and go upstairs to the NICU to see him. He was so pitiful with the cooling blanket on him and hooked up to so many wires. He had a pic line (a longer IV) in the side of his head and one in his arm. He had an IV in his hand and in his belly button and he had EEG probes glued all over his head to monitor for seizure activity. The cooling blankets basically induce hypothermia to where the rest of the body shuts down and all of the blood and oxygen can go to his brain to stop any further brain damage. He was on the cooling blankets for 3 days. They started it on Sunday and he was off of them by Thursday morning. While he was on them, he was also getting morphine to keep him sedated and still, so all he did was lay there. He never opened his eyes, didn’t move at all, and didn’t make any noise.

I finally got to hold him on Thursday morning and it was the best feeling in the whole world! Once he was warm, he had an MRI to look for brain damage. He does have some damage to the central part of his brain and the brain stem. This could effect his motor development. There is a spectrum of how it could effect him the best being nothing at all and the worst being he could develop cerebral palsy. We won’t know until we see whether or not he is reaching developmental milestones.

Once he was warm, he had to learn how to eat, because previously he had been getting all of his nutrition through his IV. I was trying to nurse him but he didn’t have the patience to try to learn how to do that with wires hooked up all over him. So I decided to pump and bottle feed and supplement with formula when needed (I wasn’t making enough milk).

He took the bottles like a champ and caught on to feeding very quickly. We thought we were going to be able to go home but he still had one more issue. His platelets in his blood wouldn’t stabilize. Platelets are what cause your blood to clot. He had to receive several transfusions to increase his platelet supply. His platelet count would stay up for 1 day, then drop off slightly the next, then plummit on the third day. This happened several times and we started to think it wasn’t ever going to stay up.

When I was discharged There was no way I could go home without my baby, so we stayed at my moms house, which was way closer to the hospital. We would wake up around 7 go to the hospital and spend all day there and leave around 9 and go to my moms and sleep. I lost it every time we left the hospital and would cry the whole way home. It is so heartbreaking to leave the hospital without your baby. I hated that he would be waking up on his first holiday alone in a hospital bed.

When we came in on Thanksgiving day the first thing his nurse told us was that his platelets had gone up on their own!! We were so happy and couldn’t wait to hear what the doctors had to say. When we met with them, they told us we could go home! I was so happy! So that puts us to now, he has been evaluated by a physical therapist and she said he looks developmentally normal for his age right now and he needs no therapy intervention. We have a NICU follow up appointment when he turn 3 months on Feb 19, hopefully we will continue to get good news, and his brain will heal itself and he won’t have any issues from this. That is our prayer, but whatever happens with him we will accept it and give him everything he needs to be successful. God chose us to be his mommy and daddy for a reason. And we are just so thankful that we get to call him ours!

Random Thoughts

I wasn’t prepared for how the holidays were going to hit me, until they were here. I have been feeling pretty ok with everything lately, and then the week of Thanksgiving came, and I found myself feeling sad.  Once we had made the decision to try for a baby after the wedding, all of our talk involved me being pregnant during the holidays this year.  The fact that they are here and I am not pregnant it a harsh reality to face! And the fact that I was pregnant and that it was taken away from me, makes the feeling even worse.  Almost like, here is a little taste of how happy and exciting a pregnancy can be, but that’s all you get- a taste.

I find myself thinking about pregnancy milestones all. the. time.  It is so hard not to think about them! Right now, I would’ve been 20 weeks pregnant.  I know that Jamie and I would be so full of anticipation on finding out the gender of our baby.  When we first found out we were pregnant, Jamie wanted to find out the gender and I was on the fence.  Now, with everything that has happened, I know for sure I will definitely want to know the gender.  We were planning on having a small gender reveal party for family and close friends.  Those party plans have sadly been postponed.

I know several people who had the same due date as me, or at least very close to mine, and it is so hard to see their “bump” pictures on Facebook. It just reminds me of the “bump” that I should have right now. I constantly wonder what I would be looking like right now with a pregnant belly. 

We can officially start trying again!! When we first lost the baby, all I wanted was to start trying again.  My doctor advised us to wait for two normal cycles.  I was anxious and did not want to wait.  Of course, I followed her advice and waited the two months.  Now that we can start trying, I have lots of different feelings.  I want to try, but I am also scared.  I am scared that I might have another miscarriage. I am scared that I might not get pregnant as quickly as I did the first time.  And I am scared because I am not sure if having a baby is the right choice for Jamie and myself at this time.  Because of all of these worries, we have decided to not actively try to get pregnant at least for a few more months.  I am actually ok with this decision, and I feel like it will give Jamie and myself time to get our emotions more in check.

People are always asking me how school is going this year.  I give everyone the same answer “My class is so good this year!”. I am so incredibly thankful for the group of kids that I have.  They are honestly the best class I have ever taught.  When I first went back to school, after my miscarriage, I did not want to be there at all! For the first several weeks, I came, I taught, and I went home.  I felt like me heart wasn’t in it, like it always has been before.  Over the last month, I have noticed that I have become passionate about what I do again.  And, I think a lot of that has to do with my class.  I love teaching those kids! And I am glad I can finally say that I feel happy more than I feel sad.  I told Jamie the other night, how thankful I was for my class.  I don’t know how I would’ve been able to handle my miscarriage and a challenging class. My kids at school have made my transition back to work so much easier!

Time Goes On

Today has been 8 weeks since we found out the most horrible news. I can’t believe it has already been that long! I should be keeping track of how many weeks I am, instead, I am counting how many weeks it has been since I lost my sweet Angel Baby. 

It is crazy that it has been 8 weeks and I can still remember all of the days events so clearly.  When I think about it, I am flooded with such raw emotions, which reminds me that my heart is still so broken.  I feel like I can relive every second of that doctors appointment in my head with such clarity.  My whole world was turned upside down, and I honestly never thought I would feel “normal” or “happy” again.  I didn’t think I was going to be able to move on.

The funny thing with time, is that is does help.  Although I can remember everything so vividly, I can also look back on the situation and see myself healing.  I dreaded going back to work after my loss.  And those first few days, I didn’t want to do anything at all, because I felt like whatever I was doing was taking my mind off of my baby.  It was almost as if I was worried that if I wasn’t thinking about my baby, that I would forget about her.  Now, after 8 weeks, I see that getting back into my routine has really helped me a lot.  I learned that although I do things that takes my mind off of this horrible situation, I will NEVER forget my sweet baby.  My heart is healing slowly and I am so thankful. I know that time is the only thing that is going to make me feel better about this whole thing.

As time keeps moving on, I am looking forward to the future, in hopes that soon I will be holding a baby in my arms.  I am so ready to start trying again.  We were told to wait for two months and then we can start trying again.  I feel like once we are able to try, I feel so much better about all of this.  It is just that I want a baby so badly, and I feel like all of this time waiting, is just time wasted.  I know my body went through a lot, and that it needs time to heal.  I just hope and pray that the next baby will stick!

Genetic Counselor

Two days after my follow up appointment, I got a call from the genetic counselor.  We set up an appointment for the following week.  Of course I had been googling everything I could on translocations, trying my hardest to prepare myself for whatever the genetic counselor was going to tell us.  I found some crazy information! But, I also read about several women who have a translocation and everything was fine. So I was hopeful for our appointment.

The day of our appointment finally came.  We both left work early and headed to MUSC Women’s Center.  We met with our genetic counselor along with a medical student.  We sat in her office (finally not an examination room!) and she just started talking to us.  She asked all about our family history and if anyone in our families had any abnormalities or birth defects.  

Finally, she got around to talking about our baby.  She showed us the karyotype that the geneticist had made of our baby.  We were also able to find out the gender, a little girl.  I was supposed to have a sweet baby girl.  I wanted to know the gender, but at the same time it was very hard to hear.  It just made me imagine all of the little girl things I would never get to do with my baby, and all of the sweet little girl clothes that I should have been shopping for.  It made the loss so much more real for both Jamie and myself.  We actually we were supposed to have a daughter.  After we left, Jamie kept saying “Now I want my little girl”. 

Back to our appointment… She discussed what exactly a translocation is, and what could happen if one of us is a carrier.  She said she wanted to have a karyotype done for both of us.  This would tell us if we were carriers of the translocation.  She reassured us that if one of us was a carrier, we could still have the possibility to create a “normal” baby, just that our chances for a miscarriage would be higher than the average person.  

We were sent straight to LabCorp to both have blood work done.  A little humor in our situation… You wouldv’e thought Jamie was about to have major surgery with the way he was acting in the car.  He was wining and saying what if they take too much blood and I get weak afterwards.  He went first and the lady had to use the smallest needle she had to draw his blood.  It took him several hours to get over the traumatic experience of having his blood drawn.  By this point,, I was so used to being poked with needles, that it didn’t even phase me.  Now we just had to wait for the results, we were told it would be about two weeks.

One week later, our genetic counselor called me with the results! Both of us had normal karyotypes!! No translocations here!! Finally, I felt like we were getting some good news after everything we have gone through! She said the miscarriage was a “freak accident” and we were allowed to start trying again.  

My doctor told me at our follow up that I needed to wait for two cycles to start trying again, so now that’s where we are.  We are waiting to be done with two cycles and then we will be back to trying for Baby H. I am nervous to try again, because I know the pain of losing a baby (and I never want to experience that again!!), but I am also excited because a baby is what I want more than anything!

Follow Up

After my D&C, I found that going to work and trying to get back to my everyday routines helped keep my mind off of my loss.  I would go through the day and be ok, and once I was home with my thoughts that’s when my tears would come.

The first Tuesday after finding out about our loss was extremely hard.  I just stared at the clock thinking things like “this exact time last week, I was on my way home getting ready for our appointment”, “This time last week I was in the waiting room”, or “This time last week, I had already been given the horrible news”. As hard as I tried, I couldn’t keep my mind off of it.  I did not want every Tuesday to be like this.  I am glad to say that it has gotten better.  There are still some times on Tuesday’s when I think about being at that doctors office.

Two weeks after the surgery, I had a follow up appointment.  My doctor wanted to make sure everything was healing properly.  For two weeks, I looked forward to this appointment, but I’m not really sure why.  I was anxious to find out if there would be answers from the pathologist about what caused the miscarriage.  I was hoping for some sort of good news, I wasn’t really sure what that could have been, but certainly there had to be good news somewhere through all of this.  

I had knots in my stomach on the way to the appointment.  I hadn’t prepared myself to feel all of those emotions again.  As soon as I sat down in the waiting room, I began to cry.  All of the sadness and devastation hit me hard! I was finally called back, and I was glad to be out of the waiting room.  We were put in the same examination room that we had been in before.  I was so distraught with everything, that I didn’t notice at first.  Jamie was actually the one to notice and say something.  It was hard to sit on the same table and wait, not knowing what my doctor was going to come in and say this time.

She finally came in, checked me and told me everything was healing just the right way.  Then she started talking about the baby and the pathology results.  She said that there had been a genetic abnormality with the baby’s chromosomes.  It is called a chromosomal translocation.  Basically, a piece of the number 2 chromosome broke off and reattached to number 9, and a piece of number 9 broke off and reattached to number 2.  At first, I was glad to hear all of this because we had an answer for the miscarriage until she continued talking…

She went on to say that this translocation was uncommon and something that she is not specialized in.  She said there is a possibility that Jamie or myself could be a carrier for this same abnormality, and she wanted to send us to a genetic counselor for further testing.  Dr. R said that if one of us was a carrier that our chances for future miscarriages would be higher than a normal persons.

 I just couldn’t believe it! Getting pregnant for us was easy. I never imagined we would lose a baby, and possibly have genetic problems where this could continue to happen.  I felt like my heart kept getting ripped out, every time we went to the doctor’s office. I was wanting to get some sort of peace of mind by having an answer.  Now, I just had more worry and concern.

We were sent home to wait for a call from the genetic counselor…