New Beginnings

I have decided I am not very good at this blog thing. I have been thinking about blogging for a few days now and every time I think about it I am never around a computer. I had a few minutes this evening so I wanted to update everyone.  This week has been such a great week! Last Thursday we were told that if the echo done on Saturday looked good then we would be going home on Monday. Sunday afternoon the NICU doctor came in and told us that Holt's blood pressure is too low (due to the medications we are going home on) and they need another week to tweak his medications. I'm not going to lie I was very disappointed to say the least. Don't get me wrong, I am so glad we are getting such good care that they will take the time to adjust the medication and give us extra time to work on feeding, but I am beyond ready to live in Tyler again. So here were are, still in Dallas. Holt is doing wonderful. I love sitting in the NICU and holding him. We have been working on feeding and Holt is such a champ. He is doing great with the bottle feedings. We are having to add 8 calories and fat to every bottle for him to gain weight. They have removed the feeding tube from his nose because he is feeding every time with the bottle.

As far as what is next for us, well the cardiologist came in today and said that if the echo looks good tomorrow the we can go home to Tyler on Friday! Oh, how I pray the echo is stable so we can go home! If it is then Josh and I will "room in" at the hospital tomorrow night and spend the night together with Holt to make sure we are comfortable with the medications and feedings before we head home. Once we are in Tyler we will see our pediatrician on Monday and come back to Dallas on Wednesday for a follow up with the cardiologists and then we will be seen weekly in Tyler there after that.

So the new question is what does the future hold? The doctors have said they can not be more pleased with how well Holt is doing. I can't help but be amazed with the mercy God has shown on our family. He has answered our prayers and has done "more then we can ask or imagine".  The Norwood procedure is off the table for us. His left ventricle is going to recover and has recovered for that matter. We were told that the heart cath was only a temporary fix, but temporary could be 4 months or it could be 5-10 years. Holt will have to have more intervention at some point in his life but our prayer is that we can wait until he's much older. The procedure now that they are talking to us about is called the Ross procedure. They haven't gone into much details about it but just wanted to put the name in our brains. From what I understand it's basically where they replace the aortic valve with a pulmonary valve and use a mechanical valve as a replacement for the pulmonary valve. And surprisingly it's a much simpler surgery. Of course we will be given more information when it's time for the procedure. I am just so thankful that we are able to take him home and get him as old as we possibly can before the surgery. 
We will have weekly follow ups to the cardiologist for a long time, then they will lengthen our leash to 2 weeks and someday a long time from now I was told that one of the cardiologist will get brave enough to let us go for one month before coming back for a follow up. I told them I am ok with coming weekly! So between them and our pediatrician it sounds like we will be in the doctors offices a lot! But I don't even mind because we will be home!

I feel like this chapter in our journey is closing and another one is beginning. It has been a long time coming and I know it will take sometime to process all that has really happened. I feel like the last couple of weeks I have been on autopilot. Just doing what we can to make it through. I am so ready to be in my own home and get into a routine, to find our new normal.

Today on my way to the hospital I thought what a sweet day it is going to be when Holt plays his first sport. It brought a tear to my eye thinking about how faithful God has been through this whole process and how far we've come. I now understand more " I can do all things through Christ who strengthens me" I know that it is nothing but the strength of God that has gotten us through all of this.

 I feel like I am so scatterbrained these days and I'm sure it's reflects in my writing. My brain hurts. I am so overwhelmed by the love and support we have received during the 12 weeks we have been in the hospital. I know we owe so many people "thank yous".  I've tried to keep up with my thank you notes but I've decided I am not superwomen and I am learning I can only do so much with my time during the day. Please know that Josh and I are so very grateful for the encouragement, love and support that was poured on us. We have truly seen Jesus in so many ways. He has provided in ways I can't even begin to list. Thank you for being Jesus to us!

I can't wait for the day when we have the conversation with Holt about his heart. I can't wait to tell him how God healed his heart. I can't wait to tell him about all the love we received while we were in the hospital and how many people prayed for him. I can't wait to tell him that God has such big plans for his life.

I will update when I can about our transition home and how we are adjusting to our new normal. Please pray for us as we do make our way home. It comes with mixed emotions. I think taking him home is going to be another test of our trust in the Lord. We won't have any monitors telling us his heart is still beating. We just have to trust that his heart is still beating without hearing it. I've gotten so use to a machine. It's going to be an adjustment for sure to not have a monitor around.

Thank you for your prayers, I know the Lord has answered our prayer and I will forever be thankful for the miracle he has preformed.

To God be the glory for great things he has done!

1 Week

I cannot believe it's been a week since our sweet boy was born. Let me tell you it's been a week! It has felt like it's been a month! Since my last post we have had some great news! I'm going to go day by day because there has been so much happen I don't want to forget anything (sorry this part is more for my benefit so I can have it documented).

Friday was an emotionally tough day. I got to leave the hospital and I can say that I was excited about that but I was not ready to leave Holt. You know as a new parent it's hard to leave your new baby after 4 days. Let's just say I cried a lot! We left the hospital around noon and went to Target to get my pain medication and some blankets and mittens for Holt to have while in the NICU. Then we went to the house where I will be staying for the rest of the time that I am here. We are so blessed to have such wonderful family friends that have opened their home to us while we are here in Dallas. After getting settled in we of course went straight back up to the hospital. Holt is doing great! I got to change his diaper and take his temperature. I'm sure the nurse thought I was crazy because I got so excited about changing a diaper. Of course when you go from no contact with your baby to changing a diaper you will take any chance you can get. All day Friday they were slowly taking Holt off the pain medication to allow him to wake up so they could take him off the breathing machine. It took a little longer then they expected because he was just as happy as could be sleeping. (something he gets from me of course, I love sleep! )  Thursday they closed his PDA and he did great! They watched him closely on Friday and they were very please with how he was responding and the function of his heart.

Saturday we came into a great surprise. Holt was breathing on his own! He has a nasal cannula to help him breath until he gets the hang of breathing. Saturday  Holt learned how to suck on a pacifier. He loves the pacifier. We are teaching him how to suck on the paci while he his being feed. We are feeding right now through the feeding tub in his nose. Once his breathing slows down to normal then we will start bottle feeding until I can hold him then the next step will be breast feeding. He also opened his eyes on Saturday for a few seconds. He has such wonderful blue eyes!

Sunday I got to place my arms under Holt's head and legs. It was the closest I have been to holding him and I was in heaven! I haven't been able to hold him because of all the lines he has in him but the sweet nurse took pity on me and let me semi-hold him! Oh what a wonderful day it will be when I can finally hold that sweet baby in my arms! But for now I am just over joyed when he holds my finger.

Today has been a wonderful day! My sister in law came in town to help drive me around and help while I still recover from my c-section. This morning when we walked in Holt's room he was wrapped in a blanket and sucking on his pacifier. It was the sweetest cuties thing I'd ever seen!! And of course the first thing we did was grab the camera and take a million pictures. Holt today was very awake and alert. It was so fun to watch him lay there looking around the room.

I mean how could you not stare at that face all the time?  It is so fun to watch him discover the world around him. While we were there this morning the cardiologist came in and we had such a great report! He said they could not be more pleased with how good Holt is doing. He went on to say that they feel like it's highly likely that the cath. procedure will be enough for a while to get Holt older before he will need other intervention. He said more intervention is inevitable but when we will just have to watch. It could be a 4 months or it could be 5 or 10 years old. Of course that will only come with time. He also said that his left vent. is pumping better. We were told a percentage today and I cannot tell you exactly what it is for but I'm going to share it because it's wonderful. I think it has to do with pumping. When we were first seen the left vent function was at 3% today it's at 18%! A normal heart his size is between 22-46%.... if that's not a miracle I'm not sure what is! I can't help but see the Lord every time I look at Holt's sweet face. He is our little miracle. We still have a couple more weeks here in the hospital but everyday that we are there gets better then the day before.

I know that the news we heard today is only because of the grace of God and the mercy he has shown on our sweet boy. So thank you for standing with me and Josh in prayer for our little guy. I can't wait for the day when he is old enough for me to share with him what God has done for him and the miracle he already has been. Don't worry I already tell him that every time I see him but someday he will understand. As for what is next, we are just watching. Everyday they take away a different medication and Holt is doing great.

As for now please continue to pray for Holt's heart to continue getting better and better. Also for Josh and myself. It was very hard for him to leave and go back to work today. He has been so wonderful! My emotions are all over the place and he has been so understanding and my rock during this time. At any given moment I can burst into tears and he just sweetly takes my hand and lets me know that it's all ok. He even stayed in Dallas last night and got up early today to drive back to Tyler. I am blessed beyond belief to have him as my husband. I could not have asked for a better one! He will be back on Thursday night but it is not easy having him be so far away. I know we are going to be stronger from this experience and someday we will be able to live as a family under one roof someday but it's just not easy while you're in the middle of it.

Thank you for your prayers and encouragement. They are so needed!



Cautiously Optimistic

It has been a whirlwind of a week so far! Our emotions have been up and down and sometimes feel like we are on a merry-go-round! I wanted to give an update since it's been a couple of days. First I wanted to say thank you! For all the facebook messages, comments, and texts. I wish I could respond to everyone but I just don't have the brain power yet but know that I appreciate the support and encouragement.

Yesterday was definitely an up and down day emotionally. Tuesday night was a tough night for Holt. The cath. procedure went great and bless his little heart he is a fighter. We were told he started "shunting" through the PDA vessile (the vessile he was born with that they have been keeping open with medication).  We are hopeful that after the PDA closes this problem will resolve.  There is still talk about when we are going to close the PDA, the are not wanting to rush the process and want to allow his heart to heal from the cath. procedure.

Dr. Day (cardiologist) came yesterday afternoon and gave us an update. He said he is very pleased with the progress we've made. We talked about the first time he saw us the left vent. muscle was not moving at all and now it's moving. After the cath. the pressures in the vent. went from really high to almost normal! That's a small victory that we are rejoicing about. We also talked about 3 different roads we can go down, but won't know for a couple more days. Right now they are just watching him very closely. He did say that we are over the hurdle of "emergency surgery", though the Norwood procedure is still on the table we don't have an emergent need for it anymore. He said that he is cautiously optimistic about Holt.

Josh and I went down for a little while this morning and got another good report. They did an echo this morning and he was taken off the medicine that was keeping the PDA open. Around 3 this afternoon they are going to do another echo to see how he is doing. So far all his stats on the monitors look good and he seems to be tolerating it well. After the echo this afternoon they are going to talk about taking him on the respirator. He is having some pulmonary hypertension, which we have been told is a normal reaction to all that he is going through. They are giving him medication to help control that and the worse case senerio is we will have to be on the medication when we go home.

Last night they started feeding him with breast milk. He is tolerating it very well and this morning they increased the amount they are giving him. He was not urinating so on Tuesday night they placed a cath. in to help him urinate. This morning they have taken it out and he was placed on Lasix to help him start to urinate and also he is having fluid retention and this will help keep that low.

We don't have the report from the echo performed this morning but the cardio NP stopped by while we were in the NICU and she said she doesn't know much about the results but Dr. Laird has said it was good, but will come explain in detail to us this afternoon. 

Right now Josh and I are in my room resting, I am having a good day today. We got a good nights sleep last night and have been resting a lot today. They are planning on discharging me tomorrow sometime. Which I am excited about but know it's going to be an adjustment to live outside a hospital. I'm sure I'll figure out how!

Thank you for your prayers and encouragement. We are by no means anywhere close to out of the woods but it's a good day!

The Results

The doctor came up a few minutes ago and let us know that the heart cath went tremendously well. He said that Holt's heart is already beginning to look less stressed and enlarged. He was very optimistic that the procedure seems to have had a successful result. It looks like the left ventricle is beginning to pump a little. Holt will remain anesthetized and on a ventilator today, but they will soon be moving him from the cath lab back to NICU. God is so good!

The Procedure

This is the day the Lord has made, let us rejoice and be glad in it! We are rejoicing in the Lord because Holt remained stable through the night! He is a fighter, though he is not fairing quite as well today as he did yesterday.

Right now, Holt is being prepped for his heart cath procedure. The process should take anywhere from 1 1/2 to 3 hours. Honestly, this procedure is quite risky. There are a multitude of risk factors involved, some as bad as you can possibly imagine.

In the procedure, a tiny balloon will be inserted into Holt's aortic valve, which is currently not opening sufficiently. The best scenario is that when the valve is opened, the left ventricle will begin pumping correctly, resulting in a normal 4 chamber heart. The doctor was quick to say that we will NOT be able to immediately tell whether or not the cath worked. Instead, we will probably see Holt get sicker from the stress of the procedure before he gets better. Then, in a few days, we'll know whether the cath was successful or if Holt will need a greater intervention (surgery).

If the procedure is 100% successful, Holt will likely be in the hospital around 2 weeks.

Please pray that the cath is successful and without negative side effects.

Lauren has been up walking, but the effects of her epidural haven't yet worn off. She continues to feel quite sleepy.

Please pray for a speedy recovery for her body.

Josh is a trooper. He is quietly attending to all of his family's needs. What a blessing that is to watch!

Keep praying!

A few pictures...

Holt Ludlow Littlefield is HERE!

Holt Ludlow Littlefield

6 pounds, 14 ounces

19 inches

2:01pm (ish)

Mama and Baby are doing fine right now. No immediate emergency. Further testing/monitoring is underway. I'll let you know the results of the testing. Keep those prayers coming. 

It's happening!

They just wheeled Lauren to the OR. They will continue to prep her for the next little bit, so it will still be a while before Holt is here.

Delivery Day!

Good Morning, Family, Friends, and Prayer Warriors!

The day for Holt's arrival has finally come! I'll be updating you on today's events. Lauren and Josh are doing great! They are anxiously waiting to meet their sweet baby. Right now, the c-section is scheduled for 1:00pm. We've heard it's a busy day in labor and delivery, so we are hoping for no delays. Please just continue to pray for this precious family. We are trusting in God's perfect timing and healing hands.

Thank you for surrounding them in prayer!

Lindsey (Lauren's sister-in-law)

Well my friends, the Lord has been faithful again. We have made it to the end of the week, which is 38 weeks of pregnancy. All of my doctors are so pleased that we are at this point. The scans last week were great. Both Echo's look the same as the one done the week before. Friday I had my final sonogram on Friday and Dr. Weiss said that the fluid around his heart that we were concerned about is gone! Thank you Jesus! Holt is a very active kiddo weighing in at 7 pounds 3 ounces and has long legs, which he loves to stretch out on my side and under my rib cage. Oh the joys of running out of room!
This weekend  comes with some bitter/ sweet feelings. Last night we started packing up my room. I never thought I would be so emotional about the thought of being able to leave the hospital but I feel like this place has become my home for the last 8 weeks. Everyday I've had to say good bye to a nurse and some of the doctors that have taken such great care of me. I knew this was only a temporary thing but the wonderful staff here made my stay as enjoyable as possible and I'll just say it. I'm gonna miss this place when we're gone. I'm sure you're thinking that's just crazy talk, but it's weird, 8 weeks is a long time to be anywhere and I finally got a routine down and I feel like it's changing all over again. I know we'll find another route when we get stable in the NICU. But change is just hard. It was hard to adjust to being here, it'll be hard to adjust to the NICU and I know it'll be another adjustment once we get to go to our real home in Tyler.

The other bitter/sweet part to this journey is that we get to finally meet our son, but I know what he is going to have to go through and I have a hard time knowing and knowing there is nothing I can do to make it better. I know it's an early lesson in parenting. I relate very well to music. When I don't have words to express how I feel i can usually find a song that knows exactly what I feel. I have two to share with you. The first is a song from Third Day called " When the Rain Comes"  and it says

It will be alright
No one loves you like I do


I can't stop the rain from falling down on you again
I can't stop the rain, but I will hold you,
I can't stop the rain from falling down on you again
I can't stop the rain, but i will hold you till it goes away

I don't know of a better way to say that to my baby, I can't stop the rain but I can hold him and sit next to him in this storm. I know this is just one of many "storms" in this kiddo's life and isn't that what parents are for? The greatest example we have is our Heavenly Father, he calms the storms, he walked on water and with one word calms our storms.

A good friend of mine shared a song with me by Matt Redman and I feel like it's such a perfect way to end this journey and begin our next journey. It's called "Never Once" and this is the cry and thanksgiving of my heart. It says it in such a perfect way.

Standing on this mountaintop

Looking just how far we've come

Knowing that for every step

You were with us

 

Kneeling on this battle ground

Seeing just how much You've done

Knowing every victory

Is Your power in us

 

Scars and struggles on the way

But with joy our hearts can say

Yes, our hearts can say

 

Never once did we ever walk alone

Never once did You leave us on our own

You are faithful, God, You are faithful

Every step we are breathing in Your grace

Evermore we'll be breathing out Your praise

You are faithful, God, You are faithful

You are faithful, God, You are faithful

 

 

 

Oh how faithful our God is, yesterday, today and forever! That is and will forever be the cry of my heart and oh how sweet is it going to be to tell this story of God's faithfulness to our son someday.

Thank you for your prayers for our family and walking through this journey with us. I know we are far from through this but I know that we are going to be ok because we have never walked alone.

 

I am planning on having someone in my family update my blog as much as possible.

Right now my c-section is scheduled for  1:30 on Monday and from there we are just praying the Lord will sustain and hold Holt's heart to wait until Tuesday to have the heart cath.

We will keep you posted!

 

Thank you for your prayers!

 

D- Day

We have been on an emotional roller coaster to say the least the past couple of days, waiting to see if we were going to meet sweet Holt this week or not. I am happy to say we have one more week. Of course it comes with bitter/sweet feelings. Yes, I am glad that we can wait one more week to allow Holt to get a little bigger, but on the other hand I was hoping that I didn't have another week of waiting. But again I am reminded... It' s just not about me!

So all that to say this afternoon we had an echo and the cardiologist came after reading it. They told us that yes, they see a little bit of fluid build up around the heart but it is not enough to concern them at this time and there has been no change from the echo from last Wednesday.  Which is very good news and they are still pleased with what they are seeing.  What does that mean for this week?  We will be very heavily monitored all week. I have a sonogram tomorrow morning, an Echo again on Thursday and finally a sonogram again on Friday and I will still be hooked on the heart monitor 3 times a day.  If they see significant changes with any of these monitoring then they will put delivery back on the table. 

For now the scheduled c-section date is Monday the 9th. I was told they will put me as top priority that morning over all the other c-sections due to our situation. I do have to say I am relieved to have a set date and this whole "maybe today" out of mind. It will help me rest easy.  

I will update with anything new if it happens, but for now I am enjoying my last week before our lives change yet again. In a good way of course!

Please pray for wisdom for the doctors as they are watching his heart. Pray that we can make it through this week to allow more growth and pray for a peace of mind for me and Josh as we trust these doctors with the guidance they are giving us for the best treatment for our sweet Holt. 


Thank you for your prayers!