I’m getting so excited to meet you

Hi Baby Little,

I just wanted to write you a quick note to tell you how excited I am to meet you! The doctors are saying that you are sick and that daddy and I may not get to be with you long, but I have hope that everything is going to be OK and we will get to spend all our time together. We already love you so much!

You are such a little wiggle worm at night, I love feeling you dance around in my belly while I’m laying in bed. I bet you are going to be a very active kid just like your daddy. Its also funny how you react to music, I can always tell when you like a song we play on the radio because you’ll start kicking and dancing even more! From what I can tell, you already have good taste.

We have a place all set up just for you! I think you are going to love the color of your new room! Daddy and I spent all day painting together just for you. And there are some pretty cool animal stickers on the walls, my favorite is a giraffe. I can’t wait to bring you home and rock you in the rocking chair grandma gave us and have you sleep in your new crib.

Only a couple more weeks now before we get to see your beautiful face, no more than 4 weeks for sure! I feel unprepared for what is going to come, but I’m hopeful and excited and know that no matter what meeting you will be the best moment in my life.

I love you so much Baby Little!

Love,
Mommy

So many ups and downs

Today we finally met with a neurosurgeon. We had been told it would take weeks to get in touch with him because he is so busy, but thankfully my specialist made a phone call and he agreed to meet with us over his lunch hour today.

I was a nervous wreck. I already wasn’t feeling well when I woke up, we had painted yesterday and my whole body ached. We left 45 minutes early to get to the appointment so I had time to fill out some paper work, and we ended up getting lost. The combination of not feeling well and being stressed about the appointment and then being late caused me to have a break down. I just sat in the car crying helplessly while my poor husband had to figure out directions. Thankfully we found the building and I was right on time.

We had a few problems, like our ultrasound pictures not being sent from my other doctors office, so I’m hesitant to get too excited about what I have to share. When we met with the neurosurgeon he was very optimistic. VERY. He said that he hasn’t seen to many bleeding episodes that don’t have any other anomalies associated with them. He was also very pleased with the fact that the bleed is well outside the ventricles and not affecting them. He believes that as long as nothing traumatic happens during birth, that our son has a very good chance of not only surviving, but living a normal life. He many not even need a shunt placed, because he has seen many cases where the blood clots and clears up on its own. At most, all he has suggested at this time is to have him called as soon as I give birth so he can come and do an MRI and see what there is to see.

Like I said, he didn’t have our ultrasound pictures (Just our case file that he had read through and the information that my specialist had given him). I am hesitant to believe that it could all be that simple, so many other doctors have told me other wise. But at the same time it is hard not to be excited by some good news!

I have decided to continue with this pregnancy as normal and start preparing for a healthy baby. We set up the nursery and I am getting all of his little clothes washed. I know that the worst could still happen, but I want to be ready for him all the same. I know God has a plan for his life, and I truly hope that involves us being blessed with his presence. I will continue to pray and hope for the best. Our little boy is a fighter.

Calm Before the Storm

Today is Wednesday.

Today is the last day of “normalcy” I believe I will have in a very long time. Tomorrow my husband and I are meeting with several doctors to discuss the outcome of my sons newly discovered complications.

I am trying to be strong today, I want to enjoy every second that I am able to hold on to hope and think that something many still be able to save my son. I know I’ve been told not to get my hopes up about anything; but its difficult when my baby boy is seemingly unaware and happy in my belly. I’ll admit that I have spent the last few days crying and laying in bed, but have made a special effort today to try to be happy.

My husband and I spent the morning snuggling and talking in bed, his hand on my belly feeling our son squirm and kick. We had a nice lunch together and spent the morning just being lazy together. After lunch we went to see a movie. The theater was basically empty, but it was nice to sit and be distracted for a few hours, we saw the second Star Trek movie and I really enjoyed it. I believe our son did to because he was moving and kicking the whole time. He has always loved a good production, any time we go somewhere with loud music he gets excited and lets mommy know he can hear it. 

Now we are at home, but soon we will venture out to the grocery store. I want to stock up on easy food to make because I know after tomorrow I won’t feel like doing anything. My husband has been completely amazing through all of this. So patient and loving, always ready to come and hold me and wipe away any tears that unintentionally escape. He has always been more optimistic than I have, and I can tell he has really high hopes that everything will work out. My only prayer for him is that he can handle the bad news if and when it is given.  
Today is Wednesday, and I am going to sit here and hold my son tight in my belly and pretend everything is going to be OK. Even if its just for one more day. 

Losing hope

There are no words to describe the sadness I feel today. I can’t help but see the irony in my last post being so happy, and now having to sit down and write this.

I am 31 weeks pregnant and had and ultrasound yesterday afternoon. My husband and I went in thinking that things would be about the same and that we would leave feeling excited and confident that our son was going to be alright.

The ultrasound tech came in and spent a lot of time taking images of his head, I couldn’t help but notice things seemed to be different. The tech’s once smiling face turned very serious and she started asking me questions about baby’s movement and if things had seemed normal to me. After a few more minutes of this, she went to get the Doctor.

 He came in with a very serious face, which is unusual for him. Normally he is a very outgoing and funny guy. I could tell that he was about to give us some bad news. And it was bad. It turns out that Baby Little had another bleeding episode. It has caused so much blood to pool up around his brain that his head is now measuring 40 weeks while the rest of him is only 31 weeks. It is also causing the ventricles to be pressed in a manner that is likely causing a lot of damage. They still have no answer as to why this is happening; the rest of him looks healthy. The doctor said that I need to prepare myself for the worst, and that these changes increase the risk of our son losing his life significantly. The Doctor went on to tell me that he may pass at any time and I might not feel him move anymore; he said I should be watching for that and prepared to come in if that happens.

We don’t know how long I will be able to carry him, or how much longer he will survive. I can’t even explain how fearful I am that I will be waiting for him to kick me… and be left waiting. I love my little boy so much. He is so handsome and perfect. I don’t understand why this is happening and how God could let this happen. I’m trying to savor ever moment I still have with my son, and not to give up hope. Sadly, I’ve never been a very optimistic person. It’s very hard to cherish every moment and kick when you are praying it won’t be the last one you get.

All I can do is hope for the best and wonder how I’m going to make it through these next few weeks.

Good News!

Today was the best appointment I’ve had so far in my pregnancy.

I’m not exaggerating. Everything about this appointment was wonderful and I am beyond thankful. I was scheduled to meet with my high risk doctor and have an ultrasound. My mother in law came along for this appointment, because I was afraid to go alone after my last one.

We arrived at the hospital where I was taken right in to have my ultrasound (I kind you not, we didn’t wait more than 5 minutes. A miracle in a hospital.). The tech who preformed the initial ultrasound was so kind, she talked us through everything and even gave us a sneak peek of a 3D ultrasound. My baby boy was very cooperative and even flashed us a few smiles. It was so amazing to see his little face, he resembles my husband in so many ways.

After that, the doctor came in and reviewed his findings on the ultrasound. He was very short and to the point, but in this case that was OK. There was no huge change, but they confirmed there is no new bleeding. He also said that a blood clot that has started to form is slowing getting bigger (which is a good thing). The bleeding is still only located outside the brain, and hasn’t seemed to affect brain development.

Our baby boy is also big! He weights 2lbs 12oz at 27 weeks. So the doctors believe that, because he is doing so well in-utero, they will let me carry him full term! (unless something alarming shows up on my next ultrasound)

I am so thankful that this appointment went well. God has been gracious to us and our son! I know that there are still many unknowns and that after he is born there could be complications, but for now I have many things to be thankful for. I will go to bed tonight thinking about our precious son and his cute little face.

Praising God today!

Getting through the hard days

Friday was a hard day.

 I had my weekly doctor’s appointment that afternoon.

     It was just a “regular” check-up, and for the first time I felt comfortable going alone. I figured they would just take my blood pressure, measure my belly and then send me on my way. This appointment was with another doctor whom I’d never met before (this unfortunately seems to be a new trend), but after talking with him a few minutes I determined that he was personable and made me feel comfortable. He did take my blood pressure and measurements, asked me a few questions about my healthy history, and made a few jokes. I was feeling pretty good and was about ready to leave. At the end of my appointment he asked me if I had any unanswered questions.

     Of course I was bursting with questions I desperately want to know the answers too. So many things about my son have been left up for debate; no one has been able to tell me more about the brain hemorrhaging and why it happened.  I should have known that hearing any answers would make me become emotional, but my curiosity got the better of me.

     My first question was if he could compare the fetal MRI to my last ultrasound and tell me if there was any difference (which is what was supposed to happen at my previous appointment, but I will stop being bitter about that). He was able to look up the images and let me know that nothing had significantly changed, and that I should just be thankful that it didn’t look worse.
     I then went on to ask if there was anything else abnormal that I should be concerned about. I wasn’t expecting his answer to be so blunt. I was told that my sons head is measuring 2 weeks larger than the rest of his body, which is probably caused by the bleeding. He went on to inform me that they wouldn’t be able to tell me anything about what his life will look like until after he is born, but that there is a high chance he will have extensive brain damage. While I always knew in the back of my head that this was a possibility, I had been spending so much time trying to remain positive.  
     I left my appointment in tears. I was overwhelmed by the fear and uncertainty I felt. Questions like “why is this happening to me and my child” and “what am I supposed to do now” kept racing through my head. I felt myself slipping down into despair.

     There where many days in between that awful ride home, and the realization that I am about to share with you. I don’t want anyone to think that I immediately sought out God’s council and was filled with peace; I am sinful and remained in my own hopelessness for quite some time before being dragged out of the pit by those who love me.
   
      It was a roller coaster ride of emotion that ended with me in the arms of my Father. He helped me realize that I was spending too much time focusing on the negative things I am hearing about my son’s health instead of being thankful for all of the things that are going right. It was also brought to my attention once again, that doctors are amazingly helpful tools for healing but only God can truly heal those in need. God loves my son more than I can even imagine loving him (which is a lot!) and for me to think that God would leave my son in this condition without cause or plan, is ridiculous. I know there will be many hard days ahead. I’m sure I will feel despair. Thankfully, I also know that God is carrying me though this process and has surrounded me with amazing people who will help me through it.

We will get through these hard days together.     

Fetal MRI

     Yesterday had to be one of the most frustrating and disappointing days I’ve had yet. I was scheduled to have my fetal MRI and I was really looking forward to getting some answers on what is going on with my sweet little man. The events of the day are as follows:
My mom picked up me at 8:45 and drove me over to pick up my mother in law. I don’t know what I would do without these two amazing ladies who are always willing to go with me to my appointments when Grant can’t make it! I am SO thankful for them.
We headed to the hospital for my appointment that was at 9:30. We arrived on time and I was whisked away by several ladies to where I would have the MRI. They had me lay down on the table and strapped my in.
     Side note: If you haven’t had an MRI done, it is not for the claustrophobic! They gave me ear plugs for the noise but I declined the blind fold, thinking I would be better off without it. Next time I will take the blind fold. There is nothing more terrifying that being strapped down to a table and put in a tube so small your nose can brush against the top, all while extremely loud noises pierce your ear drums. It would have been nice to not see anything.
     The whole process only took about 30 minutes and after I was done they told me they would sending the information to my doctor right away so he would have time to review it before my appointment with him at 1.

     My family and I decided to head back home for a few hours instead of waiting at the hospital. It was nice to catch up over lunch and talk about life and fears and pray. Around 12:30 we made our drive back to the hospital and I check in for my appointment at 1. We were in the waiting room for a very long time, and I was starting to wonder if I had somehow gotten overlooked. Many people had already come and gone. Finally someone came and brought me back to the consultation room.
     It turns out that my doctor was called in for an emergency C-section and wasn’t able to meet with me.  They did however have his partner working today and I was to meet with her instead. Right away I knew this wasn’t going to go well. She came in and asked several questions trying to figure out why I was being seen today. It was evident from the beginning that she had no clue what was going on with my situation. She proceeded to tell us that results from the MRI came back confirming there were no genetic problems but that there was bleeding around his brain…. which we already knew.
I asked her if she could tell if the bleeding had gotten worse and if they were able to determine what caused it; after looking over several papers she told me that she didn’t have that information at this time.

     Needless to say I left that appointment feeling very defeated and angry. I was really hoping to get some answers and instead I left feeling like I knew even less than when I went in. I am ashamed to admit that the whole ride home I battled anger towards that doctor and her lack of knowledge and sympathy to my situation. I know that she was probably very busy and that she wasn’t my usual doctor, but it felt like such a waste to meet with her. I am still upset today just thinking about it, and I realize that I need to bring it to God and let go of my pent up anger and fear. Easier said than done….

      I am just hoping that my next appointment will shed some more light on what’s happening (and that I will get to meet with MY doctor and not someone else who doesn’t know what’s going on).

I will keep you posted,

Kayla

Our Story, Part 2

     We met with the specialist on a Friday morning. My mom and my mother in law accompanied me to this appointment because Grant had midterms and couldn’t get away. I checked in and was immediately taken to have an ultrasound done. The tech was much more talkative this time; she was very sweet and reassuring. She let us know what she was seeing and explained why she was taking so many different stills for the doctor to look at. This ultrasound took about 20 minutes; I’ll admit that I couldn’t hold back the tears when I saw my baby boy on the screen. He was wiggling about and just seemed so perfect to me, I couldn’t imagine what was wrong. When the tech was done she had me stay on the table and wait for the specialist to come in.
     As soon as the doctor walked into the room, I felt a bit better. He was an older gentleman who had actually stopped in the room before my ultrasound started just to say hi (not knowing that I was his next patient). He was very talkative and made a few jokes trying to get me to smile. He said that he had taken a few minutes to look at the pictures the tech had taken and wanted to walk me through them.

     He showed me the back of my baby’s head and said there seemed to be some unexplained bleeding that is pooling around his brain. He was quick to reassure me that he found no evidence of any genetic problems and that everything else about my son looked perfectly healthy. He said that they couldn’t determine from an ultrasound why the bleeding occurred, if it was getting worse, and if it could resolve over time. He suggested that I come back to have a fetal MRI done to see if we could get anymore answers. He also said that he hasn’t seen anything like this before, most bleeding is caused by either a genetic problem or trauma. None of which have taken place.

     This is all the information we have at the moment. I’m going to be posting on this blog to keep track of our journey. I know there will be many ups and downs, but my God is great and will be with us all along the way.     

Our Story, Part 1

 

This picture was taken a few days before we knew anything was wrong. So happy and pregnant!

 

     March started just like the last few weeks and months. I was about 20 weeks pregnant and everything seemed to be going well. I had a relatively easy first trimester, I did not suffer from sever morning sickness but did struggle with constant headaches and exhaustion. Over all everything just felt right. Grant and I found out we were having a baby boy at 16 weeks and couldn’t have been more excited (we secretly had been hoping to have a boy first). I was getting bigger every day and more anxious than ever to meet our baby.
I had decided from the beginning that I wanted to have a natural birth and as minimal care as possible during this pregnancy. I ended up seeking care through a midwife with whom I met once a month to check general growth and talk about any concerns I had. It was around this time in March that my midwife suggested we have an anatomy scan done just to make sure that our baby boy was developing properly just as a precaution. Of course I had no real concerns, everything seemed to be moving along fine in my opinion; but we agreed to have it done.

My appointment was set up at a local hospital because my midwife did not do them herself. I had to go alone on the day of the ultrasound because Grant was very busy with school; I remember driving to the appointment so excited to see out little guy but wishing Grant could share the experience with me.
I checked in at the front desk and waited anxiously to be seen by the ultrasound tech. I hate being in hospitals, growing up they always felt so cold and unfriendly. I wanted this to be over as quickly as possible.  Eventually, I was lead back to a small dark room and told to lie down on the table. The tech was very quite throughout the process, though she would point out certain things that were supposed to be important to me, like arms and legs. I couldn’t explain why, but after the first 20 minutes I started to get a feeling that something was wrong. The tech was taking an awfully long time and was taking a lot of pictures around my baby boys head. When she was finally done, she told me to wait in the room while she showed the pictures to the doctor who was working that day. I knew then that something had to be wrong; my appointment was supposed to be quick and easy and now she was checking with the doctor before she would let me leave!

She finally came back in the room, after what seemed like an eternity, and told me I was free to go and I should be hearing from my midwife shortly. I asked a few questions but she told me she wasn’t at liberty to answer any of them and that I should just wait to talk to my midwife. I left the hospital completely anxious and imagining all sorts of terrible things.
I didn’t hear from my midwife until the next morning, I had my phone glued to my hand for the last couple hours and answered as soon as I saw her number. She told me in a comforting way that my ultrasound had shown some abnormalities around our sons head and neck and that she wanted me to see a specialist to make sure that everything was OK  She told me that she made an appointment for me the following day. I started crying when I heard that I would have to go a whole day before I could get any answers, the process already seemed to be taking so long!

To be continued…