Reason to Celebrate!

Today Josh and I have something big we are celebrating. No, this has nothing to do with our sweet baby but I'm going to take a minute to brag on my husband. This morning I text him good morning, as I do every morning whenever I wake up and he texted me back a number. I thought hummm ok what does that have to do with the morning. He told me it was the grade he had gotten on his engineering licenser exam that he took back in April. He passed!!! I could not be more proud of him. It is a huge accomplishment in his career as an engineer. So today we are celebrating this milestone in his life. I'm not gonna lie this year has not been the easiest year for us. We've had lots of challenges come our way and this is what I call a "God Wink". Just a little wink from God saying "I care". I'm sure I'm not making sense of what I mean by this but when everything seems to be going wrong it's a little good that can carry you through all the hard times. Ok so enough about that! Thank you for letting me take a moment to brag about my husband. As far as our current situation all is still quite. My monitoring (of Holt's heart) twice a day is still beautiful like always. I've had two sonograms and an echo since I've last posted and the reports are good. Holt is stable. Friday, Josh and I were given a tour of the NICU. After the tour I have a peace of mind knowing that our little boy will have the best of care while he is in there. He will have a private room with a nurse that sits outside his door. The monitors he will be hooked up to are monitored by the nurse outside his door, a different station that is monitored by a nurse 24/7 and there are 2 neonatologist and 1 nurse practicioner that are alway on the floor. After the tour I feel like I can exhaule a little more knowing that he will always be watched. It is a lot less intimidating after seeing it. Don't get me wrong it's still very scary for me to think of all my little baby will have to go through once he is born, but knowing what to expect helps me rest easy. Once it gets closer to his discharge we will be moved to a different NICU where we will teach him how to function on his own. We have been told that he will have a feeding tube in his nose. When he is first born his heart functing will take all his enengy and he will be helped with all the other functions of living. Basically this means once his heart is stable enough to let him go home we will have to teach him how to do basic functions on living, like eating. From the NICU we will be moved across the hall to a different NICU where he will begin to learn basic functioning skills before we will be discharged to go home. The night before we go home we will be moved to a room where Josh and I will be left alone with Holt to make sure we feel comfortable with everything before we can go home. Once we pass that test we will be able to go home. I know that is a LONG ways away but it's nice to know what to expect. Especially since we won't know exactly what road we are taking until after he is born and his heart can be further assessed. As for this week, I am being taken on a tour of the cardiac-surgical NICU/recovery room this afternoon. Though it is not 100% certain if surgery is needed or not they still want me to see the area so I will know what to expect. I have been warned because it is very very overwhelming with all the monitors, tubes and other things that the babies are hooked up to. We have also been told that if surgery is the path we have to take it is an open heart surgery, and his chest will have to be cracked open. Most of the time the chest is left open for a while to ensure they don't have to do anything else before closing him back up. This is something that I don't know anyone could every be prepared for. We meet with the cardiothoracic surgeon next week and I know after that meeting we will have a better understanding of what to expect if surgery is the road we have to take. Tomorrow I have another echo and then Friday is another monotoring sonogram. Please continue to pray that his heart continues to stay the same and that no fluid will build up around the heart. Dr. Thomas (cardiologist) said that the moment they see fluid around his heart they have to deliever him. As of today there is zero fluid around his heart. Thank you for your continued prayers and encouragement!

Rejoicing!

This morning I had my echo of the week and a visit from the cardiologist. I am happy to say the report was good. I was told that the echo looks exactly like the echo last week and that Holt is stable. This is a great report! Thank you for all your prayers. I truly believe the hand of the Lord is holding this little boys heart. I was also given an update from the surgical board where our case was presented. Dr. Laird (cardiologist) said that everyone was in agreement that once he is born to do a balloon catheterization to get the valve open and then asses the heart to see what damage there is in the left ventricle. She explained that if there is irreversible damage then they can reroute the heart to make it a one ventricle heart (only the right one). It is a series of three surgeries and the quality of life is very high. It was a procedure first done 20 years ago and from what I understand those patients have enjoyed a long healthy life. We all know how far medicine has come in the last 20 years. It's comforting to know it's not a new procedure. Valve replacement is also still on the table. If they can't keep the valve open with just a ballon cath. then replacing the valve would be the next step. They can use a donor or animal valve. Qualitly of life with the valve replacement is good and he would be able to enjoy normal activity. Either way he will have life long follow ups with a cardiologist. So please join me in continuing to praying that his left ventricle would have no to minimal damage and would be able to function on it's own. I know that only the Lord knows what road we have to travel down and that he is in control. Thank you for your prayers! We are rejoicing today for such a good report and are taking this one day at a time!

One Day at a Time

I know it's been a couple of days since I've written something so I thought I would take adnvantage of the quite morning this morning. Since my last post nothing major has changed. I was suppose to have met with the cardio. surgon on Thursday and his office called and changed it to Friday and then it was changed again to Monday (yesterday). Yesterday came and went and still have not met with him. So maybe today. Of course I will update with how that appointment went when I know how it went. haha! I am still being monitored twice daily for contractions and Holt's heartbeat. I have had multiple doctors tell me his heartbeat looks beautiful on the monitoring strips and that I have a very cooperative baby. It's music to a momma's ears, let's just hope he stays cooperative when he gets older. I had a wonderful weekend with Josh here. He came over on Friday afternoon and stayed until Sunday evening. It was very nice for us to be alone and process the events of the past week. I think all week I had been in "survival mode", showing my "tough face". It's a lot on a gal to have multiple echo's and sonograms and then see what seemed to be 1000 doctors and have to come up with questions all at one time. So when Josh came and no doctors were in and out it all sank in. I am so blessed to have such a wonderful husband who will listen to me jump off the deep end and then look at me and say "Lauren, It's all going to be ok. We'll get through this." He knows exactly what to say to make me feel safe and bring me back to reality. Through all this I am learning why we were instructed "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." (Matthew 6:34) Amen! Daily, different scriptures pop into my head that help me deal with the day. If you don't believe that the word of God is active and relevant for today then you and I need to have a little chat. Lately I have felt like it was written yesterday to help me get through all my today's! I know that's the Lord just walking with me through all of this. A person could go crazy in a situation like this thinking about tomorrow and I'm already pretty crazy enough. So that has been my big lesson of the week. Take it one day at a time. Deal with today as it comes and tomorrow will take care of itself. It's so comforting to know that we serve a God who will take care of our tomorrow's. We just have to get through today. As for this week, I'm here in the hospital by myself. My family had to go back to work, which I completely understand. I had my monotoring sonogram early this morning. Holt still looks great. My instructions from Dr. Weiss was to stay out of trouble, and I told him I'd give it my best shot. Ha! It's nice to have doctors joke with you. It makes me realize the severity of the situation has deflated for now. Sometime this week I am going to be taken on a tour of the NICU, Cardio NICU, and surgical cardio NICU (yes, the surgeon I am suppose to meet with has his very own unit for his surgical patients). So that will be interesting to see all three of those places. And of course my weekly sonograms and echos. To my knowledge I do not have any doctors coming by- execpt for the cardiothoraic surgeon. So I am looking forward to a nice relaxful week! Sometime soon I am going to post pictures of my room and a picture of my sweet boy's sonogram, so you can see who you've been praying for. I just haven't figured out how to get pictures on this thing. But I've got nothing but time for a while, so I'm sure I can figure something out. I cannot say thank you enough for your continued prayers and encouragement for our family! We are truly blessed!

Home Sweet Home

I have made it through my first week! I can't believe it's been one whole week. It feels like it's been a month since we first recieved our life changing news. Yesterday was a very busy day. It started with my lovely check in before 8:00, (and yes this happens every morning) by the nurse. I guess it's my early preparation for life with a baby, no more sleeping in for now. Next came another echocardiogram and we met another cardiologist who looked at the echo and confirmed what all the other cardiologists have been saying. The good news is that there hasn't been much change from Monday's echo. Everytime we meet with a cardiologist they reexplain what the diagnosis means, starting with the general function of the heart and then proceeds to talk about the aortic ventricle. I really appreciate that each time they come to talk with us they take the time to explain, give me time to process and ask quesitons. Almost everyday this week they have come to talk to me and answer every question I have. I feel very confident in the care Holt is already receiving. Our case was discussed at fetus board and I was told if there was any new information then the Nurse Practitioner would come back and let me know. So no news is good news. In between all of this I was placed on the heart monitors once in the morning and once at night. All this activity is enough to make a girl tired! I don't mind the revolving door becuase it makes the day go by faster. This morning I had my monitoring sonogram. We are still stable! There is zero fluid around his heart or lungs and the rest of his body is growing. Thank you Jesus! Before I left the sono, Dr. Weiss told me to get comfortable because they fully expect me to carry to full term or very close. That is sweet music to my heart. Today has been such a relaxing day. I went for a long walk outside which was so good for me. It's nice to be outside and get some sunshine and when I got back my sweet husband came here for the weekend. It was so great to see him again. It has been an adjustment going from seeing each other everyday to seeing each other on the weekends. I don't know if I will ever get use to that! He brought me some more clothes and other things to make my room feel like "home". I have done a few things to put my touch on the room. I will try and post pictures tomorrow to give you a peek into my world for the next 8ish weeks. Monday I am going to meet with a cardiothoracic surgeon and hopefully we will have a better understanding of the game plan if you will for Holt once he is born. Also on Monday our case will be discussed at the general surgery board. I will give an update on that after I know more. Thank you for your continued prayers and encouragement. I know the road from here is only going to get rockier before it smooths out. Please pray for rest for me and Josh. This week has been very emotionally and physically tough on us and we both need rest. We know God is our sustainer and giver of all good rest.... so tonight we hold tight to that promise. Thank you again for your prayers!

Exhale.

Today has been a pretty quiet day. There is not a lot to update. Holt's heart still sounds beautiful on the monitor and the visits with the cardiologist are more positive. Which is nice because I feel like it can exhale a little more every time he comes to visit. We still have a very serious condition but have been hearing words like "very common" and "treatable" or "we see this all the time."  I'd take "treatable" over "rarely see" or "very uncommon" any day of the week.
Now that they have more information and have "gotten to know" Holt they feel like we can put the breaks on and switch gears from maybe delievering anyday to keep him inside of me as long as we can.

Thank you for your prayers. I truly believe that our status change is because God has shown mercy on our family and is answering prayers.

We still don't have a treatment plan but I'm pretty confident that we will know more by the end of the week. I have come to understand that one of reasons why they are not saying exactly what they are wanting to do is because they won't know the extent of the damage (if any) that this has done on the left ventricle until after he is born. If there is extensive damage then that takes us on a whole different treatment plan. But for now were are just focusing on what we know about the AS. Dr. Verma (one of the cardiologist) told us today that tomorrow our case will be presented at "fetal board" which is meeting where all the cardio docs, OB, neonatal docs, surgeons and a couple of other doctors (the list they told us of all the doctors was about a mile long) will meet and discuss the best options for Holt.
I must say I feel so confident in the care that we are getting here. I have never been in a place where every person that walks in the door is so friendly and caring. We have enjoyed our stay (as much as you possibly can in a hospital). I am taking advantage of this time I have here, because I know that before long I will not have an oppertunity to take a nap whenever I want or have my floor swept or bed made whenever I ask.... so I am soaking up the "pampering".
My husband Josh left on Monday night to go back to work, and I will say that has been a very hard thing for me. He is going to try and come up on the weekends but it doesn't make it any easier. My wonderful sister-in-law came up on Monday night and has been keeping me company for the next couple of days. I am blessed to have her here. It's nice to have another ear to listen to all the information and ask questions while I process.  My family has been so wonderful, they are all taking shifts to be up here with me. It's nice to have company.

Tomorrow is going to be another "busy" day for us. In the morning I have another echocardiogram and monitoring sonogram and then in the afternoon the cardiologists will be coming by to talk about what was discussed in the meeting and lastly at 4 o'clock the cardiothoracic surgeon is coming by for a consult.
So.... please pray for
1. wisdom for the doctors as they discuss our treatment options
2. the echo and sonograms would continue to be stable and there would be zero fluid build up around his heart or lungs so he doesn't have to be delieved early
3. for understanding as they give us the treatment options
4. pray that there is no damage to Holt's left ventricle
and lastly pray for Josh and myself as I have to relay the information to him and the decisions we have to make with such far distance between us.

Last night before I fell asleep my sister sent me a recording of my brother in law singing this song.
Though he doesn't know it he sang it over Holt last night (I held my phone to my stomach and we listened)

You hold my every moment
You calm my raging sea
You walk with me through fire
and heal all my disease
I trust in You
I trust in You

I believe You're my healer
I believe You are all I need
I believe You're my portion
I believe You're more than enough for me
Jesus, You're all I need.

It still brings a tear to my eye because it is so true.  Jesus is our healer, He is all we need and He is more then enough for me.

What a blessing it is going to be to be able to teach my sweet boy this.
Thank you for your prayers!

We have somewhat of an answer!!

Holt has been diagnosed with critical aortic valve stenosis.

This, the most serious type of AS, is usually present at birth. Basically it means that his aortic valve is so narrowed that the heart cannot pump enough blood to nourish the body, so immediate intervention is needed. The good news is this is very treatable. The bad news is we have a long road a head of us.
We still don't have a definitive treatment plan, and we don't know what the next step is going to be.

I am to be monitored twice a day to check his heartbeat and make sure I'm not having contractions. I will have monitoring sonograms by a cardiologist on Mondays and Fridays, and a maternal fetal medicine perinatologist will monitor me on Tuesdays and Thursdays. There are different things they are checking for to make sure his heart is not under any stress. If they see any signs of stress on him, then we will start talking about delivering early. But his heartbeat is strong and sounds beautiful, and there is no fluid around his heart or lungs. So, now we play the waiting game.

I cannot say thank you enough to all of you who have texted or called to encourage us. We have felt the prayers over our family. Thank you, thank you, thank you!! We are truly blessed and have seen, first hand, the body of Christ in action.

I believe that God is hearing our prayers and that this is just a page in this little boy's story. I have been praying that God would use our son in a mighty way and I truly see that the Lord is answering this prayer. I know we have a long road ahead of us, and Holt has a big fight ahead. Please continue to pray that I will stay pregnant as long as I can so he can continue growing. We serve a mighty God who is still in the business of healing and answering prayers. I am so blessed to be able to watch the Lord move in our son's life.

He's got big plans for Holt Ludlow Littlefield.

We're just one phone call from our knees...

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. (James 1:2-4 )

What a fitting verse for our situation. I never in a million years would have ever dreamed that I would be spending the last days (hopefully months) of my pregnancy in a hospital. But here we are. The Lord gave me this verse this past weekend, to comfort me in one of the darkest moments. This whole experience has been a reminder to me of how important it is to memorize scripture.

Around 2:30 Saturday morning I woke up and started processing the events of the day. A wave of terror struck me and my mind went a million places. All I could do was desperately cry out to the Lord to save my son. Scripture instantly started flooding my mind and then I felt the peace that surpasses all understanding calm my spirit. At this point, the future for our little blessing was so unclear, and the only answer we had was, "You're not going anywhere."

So, after calming down, I knew that this is what the Lord was calling me to do... consider this trial PURE JOY... no matter the outcome. I'm giving it my best shot. I also knew that this would be the title to the blog I was planning to start to give updates. My heart for this blog and this whole situation has been, and will always be, that God gets the glory. Because without Him I am nothing!
I'm going to start at the beginning, to help me process the chain of events as they happened from the start until now. I will do my best to try to update as much as I can.

Friday May 11- This was a day that I thought was just like every other Friday. I woke up a little later then normal because my appointment with my OB wasn't until 9:30.. I got ready for the day and headed out on my way. While driving to my appointment, I was going though my list of things I needed to accomplish during the weekend. I had invited my parents to the sonogram with me so they could see our little guy. Of course they were thrilled to come, and I am so glad they were there!

We got checked in and were called back to the room to start the sonogram. It was going perfectly (or so I thought) at first, and then I noticed that the sonographer kept going back to look at his heart. Then came the words that started the next chain of events. "I need to let Dr. Carl come take a look at something." And, out of the room she went. About 3 seconds later they both entered the room. After what seemed like an eternity of them looking at the screen, my doctor turned to me and said "We see an abnormality in your babies heart. I'm going to call a cardiologist in the Laird group in Dallas and get you an appointment to check this out next week, come over to my office when you're finished here and we'll get everything set up."

We finished up the sonogram, and then I sent my parents on their merry way back to work. I told them I would update them when I knew more. Then, I was taken back to the exam room for what I thought was going to be another normal check up. Dr. Carl walked in the room and sat down. The first words our of her mouth were that this was divine intervention that I had this sonogram. A sonogram at 30 weeks pregnant is not normal standard of care.

At my previous check up I asked for this sono because I just felt like I needed to see my baby again (even I thought I was crazy for asking, but I asked anyway). I completely agree with her that it was prompting from a very caring God, who has our very best interests at heart. She proceeded to tell me that what she saw could be nothing or it could be very serious. She had spoken with Dr. Verma, a pediatric cardiologist in Dallas, and they wanted me to immediately go to Sulphur Springs for an echocardiogram. Within seconds, I had all my records, the sonogram report, and directions, and I was out the door.

At this point my head was spinning. I wasn't really sure what was going on, so I called my husband, Josh, and all that I could muster our of my mouth was, "There is something wrong with our baby's heart".

He, in his very sweet way, calmed me down, and I explained what was going on. He said he would meet me at home, and we would head to Sulphur Springs. I am so grateful for such wonderful parents who dropped everything and came with us.

The drive to Sulphur Springs was pretty uneventful, just a lot of questions spinning in my head. We arrived at the facility. I started to realize the situation was serious when, as soon as I walked in the doctor's office, they asked, "Are you Mrs. Littlefield? We've been expecting you. "

Josh and I were taken back into an exam room where Dr. Day was waiting for us. He got set up and started the echo. When he was finished he sat back with a very serious look on his face said, "I don't want to sugarcoat this. You have a very sick baby and he has a 50 % survival rate." Then he started to explain. The left ventricle of his heart was enlarged. They gave us the diagnosis of cardiomyopathy (which is a big word for enlarged heart). Of course, after that, everything became a blur.

We were told to go straight to Medical City in Dallas and check into the labor and delivery unit. Dr. Day started naming off all these doctors that would come see us and all the tests that would be performed. Before we left, he went out and sat down with my parents and us in the waiting area and explained to my parents what was going on. He answered as many questions as he could. He was wonderful to allow us as much time as we needed to process this information. Just before he sent us on our way, he looked me straight in the eyes and said, "This is not your fault. You did nothing to create this, nothing you ate or didn't eat. You didn't walk, or not walk enough. This is not your fault."
I will be forever grateful for those words because I needed to hear that I had nothing to do with this.

We drove to Dallas and came straight to Labor and Delivery. By the time I got in the room and all hooked up, I was having contractions 6 minutes apart. So on top of everything else, they had to stop my contractions. We saw 2 doctors that night and they kept saying the same thing, "We need more information before we can tell what's going on."

Saturday consisted of more sonograms and meeting more doctors. The diagnosis did not change and we were told that we would have an echo on Monday and meet with more doctors. I feel like there are about 20 doctors that have been consulted on this case, and the only piece of definitive information they could give me was that I am not going home until I deliver. As long as we stay stable, and there is no change in Holt's health or mine, our orders were to get comfortable. I was transferred from labor and delivery to an antepartum room, which will hopefully be my home for many weeks.