Dear Nolan

Tonight, mommy and daddy went on a date. We left you will Lolli and Pop and there’s no doubt they did a wonderful job. I know that date nights are good but I felt selfish for leaving you.

We were away from you for a little over 3 hours. That’s 3 hours of cuddles I missed!

People keep saying I’m “spoiling” you by holding you so much but I don’t see it that way. There was an entire week when you were in the hospital that I didn’t get to hold you at all. Plus, I wasn’t able to hold you after you were born because you thought sats of 67% were okay. Then, when we were in the NICU, I was only able to hold you while your sheets were changed. It was a very awkward hold! I was first able to REALLY hold/cuddle you on February 1st. That was 19 days after you were born! So, I don’t look at it as spoiling you. I look at it as making up for time I wasn’t able to hold you!

Coming up, you’ll have to be in the hospital again and there will be a couple days I won’t get to hold you. So, I’m making up for that time, too. 😉
Fortunately, this next time you should recover faster!

I was thinking about the day we brought you home tonight. I was so excited. It was one of the best days ever. When they finally discharged us you were already in the car seat. Waiting for dad to get the car felt like forever!

Having you home has been the greatest because I can hold you whenever I want, which means you basically get held 24/7.
So, I may be spoiling you, but you deserve it!

I love you, Baby Bear!

Momma

Prayer Brings Peace

Last night, I was rocking Nolan to sleep. I usually use that time to pray. The majority of the time my prayer time ends in tears. And ends with me feeling sad and angry. But not last night.

Last night I realized that HLHS may still really stink but overall I’m truly thankful! I know, you wouldn’t think so by my last post. But I am. I started thinking about everything we’ve been through and realized all the GOOD that’s come from it.

I’m not in control. I never have been. But I sure like to think I am. And through this, God has shown me just how much I’m NOT in control, but how much He is!
He’s taught us that we can plan all we want but His plan is what matters. And sometimes that plan is hard to accept but it truly is better than anything I could do. I don’t understand His plan. And I probably never will, but there is one in place.

I’m thankful we have a beautiful baby boy.
I’m thankful that he’s doing incredibly well.
I’m thankful for the sweetest smiles Nolan gives.
I’m thankful for the laughs I get when people wonder why he’s blue. He’s not cold, I promise. 😉
I’m thankful for the love and support we’ve been shown through this.
I’m thankful for the nurses and doctors who take care of Nolan.
I’m thankful for the new families we’ve met who GET IT!
I’m thankful for God’s plan.

I would love to know what the future holds because sometimes the future can be scary. But I’m trying to take it one day at a time. To love and cherish every moment I have with Nolan.

Now, if God’s plan could just include Nolan sleeping WITHOUT being held within the next couple of weeks. 😉

Can I Be Honest?

CHDs suck!
HLHS sucks!

I’m pretty sure everyone can agree that anything “wrong” with a child sucks! And this whole situation has really been testing me and my faith. I’m sure that’s part of the purpose, but you know what? I think that’s absolute CRAP! Why does my faith have to be tested using my child?

One of the things people like to say is “It’s God’s plan.” Well excuse me, but SCREW God’s plan. I know that’s awful to say, but it’s really what I feel the majority of the time, and I’m being honest here. What exactly does anyone gain through this?

Shortly after Nolan was born someone was reading me the verse in Psalms that says we are “fearfully and wonderfully made”. Oh yeah? What’s so wonderful about a child having HALF A FUNCTIONING HEART! One of the main organs that’s responsible for keeping us alive, and God designed it to not even work correctly.  As a result, my BABY has to have open heart surgery. I saw my son’s heart beating inside his chest. (Yeah, it was cool, but it’s not something anyone should have to see.) He had a stroke sometime within his first 23 days of life. These just aren’t “normal” things.

Right before Nolan was born I BEGGED God to fix Nolan’s heart. To make it “whole”. And it didn’t happen. And deep down I knew it wouldn’t. But I also thought that if I had faith maybe He would. And when Nolan’s left side was still too small I was mad. I felt like God just didn’t care and didn’t answer my prayer.

Sometimes I sit here and I tell God that I think He was wrong. God is perfect, but this isn’t.

My child dying because his heart just couldn’t take it anymore is a very REAL fear of mine.

What’s the purpose?

I’m angry! I’m angry at God because I feel like this is wrong. I don’t feel like this is just wrong for me, but any parent faced with a child who has a serious, life-threatening condition.

I still trust in God. I still believe in Him. I believe in His goodness. I believe He loves Nolan. But I also believe He was wrong. And I feel bad for feeling this way.

I just… don’t understand.

I know that sin entering the world had a lot to do with the “bad things”. But why babies? Why children?

 

Why?

The Necessary Norwood

 

Nolan was born on January 13, 2016. On January 18, he had his first surgery of the three-stage procedure that will help his heart function a little better. No mother should have to watch her 5 day old wheeled off into surgery.

Johnny and I woke up semi-early and got to the hospital by 8:30 on the 18th. We actually made it in time for rounds that morning! Dr. Tam was there and told us that he’d be taken around 1 and surgery would start around 3. After rounds we met some of the doctors that would be taking care of Nolan in the CICU. Then Dr. Tam’s nurse practitioner came in so we could sign some consent forms. We had to agree to the surgery and sign acknowledging that he will be given blood. Then the anesthesiologist came in so we could sign her consent forms. She also walked us through what would happen before surgery started. I made the mistake of asking her how common it was for babies to have bad reactions to anesthesia. She then went into this long talk of how, basically, he was more likely to die from the surgery itself than have a bad reaction to anesthesia… I didn’t want to cry in front of all the doctors so I tried to hold it together. Trust me, the thought of my child not coming out alive from surgery crossed my mind.

After all of that my mom and friend hung out with me and Johnny for a little while. We decided to go grab lunch around 11:30 so that we could be back in time to hold Nolan one last time before he was taken to surgery. We got back around 12:30 and the nurses were there to take him. We did not get a chance to hold him. 😦 The nurses got everything ready and then had to wait for me while I cried! Johnny, my mom, and my friend gave me a hug and prayed for Nolan and the surgery. Then we all walked with Nolan to the doors right outside the OR. We told Nolan goodbye and gave him some kisses and he was gone. Cue some more tears. My mom tried to tell me that it would be okay and the God has a plan. For the first time I said out loud, “What if God’s plans aren’t my plans?” It’s something I had thought a lot about. God may have a plan, but what if it’s not what I want.

After I had some time to calm down we walked back to the NICU to get all of our stuff and go wait in the surgery waiting room. That’s where we’d get phone calls to update us on how the surgery was going. They would call when they started and then every hour after that. We didn’t have to wait in the waiting room, but I think it was just easier to be there.

While we were waiting for the phone call to let us know surgery had started another large family came in the waiting room. (Now, we were already breaking the rules because you’re only supposed to have 4 guests plus parents in the waiting room. But we had a lot of people there to support us and Nolan, so those rules are just going to have to get over it!) They were waiting for their child to get out of his surgery. We started talking to them and found out that their little boy was having his Glenn. He doesn’t have HLHS. He has issues with the right side of his heart but the surgeries are the same. After their little boy was wheeled out the parents came in to talk to Johnny and I. They let us know the truth about what we were going into. They showed us pictures of their little boy so we could be prepared for what Nolan would look like. They were so kind! (If you want to follow their little boys journey you can find their Facebook page here. Or you can go to their blog here.)

At 4:06 we finally got the call that Nolan’s surgery had started. We hung out in the waiting room, played games, and just tried to take our minds off of what was going on. Then every hour we’d all get quiet and wait for the phone call to tell us everything was going smoothly. Anytime they were a minute late calling us I thought something went wrong, but then the phone would ring. At 5:06 he went on bypass. At 6:06 everything was still going good. At 7:06 they started rewarming the blood to take him off bypass. At 8:06 they were starting to “close”. At 8:56 we were all sitting in the room waiting for the call to let us know they were bringing him out. Then Johnny and I recognized one of the nurses and realized that Nolan was right outside of the waiting room. We jumped up to go see him. He looked so much better than we thought he would. We were able to give him a kiss and he was off to the CICU. Dr. Tam came out to let us know that everything went well and then he told us to wait in the CI waiting room and they’d let us know when we could go back to see him.

We waited for another hour and a half before we were able to go back to his room. When we went back to his room the nurse gave us some information and the number to call to check on him. It was extremely hard to see him. He was still sedated, had a breathing tube in, and his chest was open. When we walked out of the CI I started crying again. I just wanted him to be okay. I didn’t want any of this to be happening. One nice thing: the family we met in the waiting room was in the room across from ours.

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Each day, he would look a little less swollen. We would see less and less drainage in his chest tube which is a great sign! By Thursday they were ready to close his chest. Thinking about it now it seems like so long ago, but it was only a week ago! When they closed his chest they shut down the unit so we couldn’t go in until he was closed. I was sitting in the waiting room and Johnny had just left to go to work. Dr. Lanier came out, sat beside me, and told me that Nolan did not handle chest closure well. He said that they might have to open him back up again. He then realized Johnny wasn’t with me and when I told him Johnny had just left for work he felt really bad. I, of course, started crying and called Johnny to let him know. I told him not to leave work and I’d keep him updated. I called my mom and asked her to come up there with me. Then, the mother of the little boy Rhett came out, gave me a hug, and told me to come sit with her and her husband. They had been talking to a family whose little girl was closed and then had to be reopened. (I wish no family had to go through this, but I’m thankful for the families who understand. We are apart of a special, crappy club!)

Shortly after my mom got to the hospital we were allowed back into the unit. I washed my hands quickly and came back to Nolan’s room. When we came in he seemed to be doing okay. I didn’t want to get my hopes up too high that they wouldn’t have to reopen but I felt fairly optimistic. We are now calling that episode his first temper tantrum! Ever since that day he’s done pretty good.

On Friday I came in and he had a couple less IVs and NO CATHETER! Dr. Davis told us that she felt pretty optimistic that he could have his breathing tube out Sunday. When we came in Saturday morning they told us that his chest tube, tummy tube, and hip IVs, AND breathing tube were coming out! It was so nice seeing him with less stuff on him. We were also able to kiss him better because there wasn’t a huge tube in our way. They also started feeding him 3 ml and hour through a feeding tube. On Sunday he was up to 5 ml an hour. On Monday they bumped him up to 8 ml. Tuesday they were ready to start bottle feeding so speech therapy came to work with him. Thursday he got his wound vac off so we were able to see his awesome scar. He also got his ART line out which left him with only one IV!

He’s still on oxygen but we’re slowly weaning him off of that. He has his PICC line in but we’re hoping that will be removed in the next couple of days. He’s taking more and more of his bottle each feed. He’s making a ton of progress! The doctors are pretty impressed with him. He’s had quite a few steps forward lately. It seemed like he was taking one step forward, two steps back. It’s been nice not to have many steps back lately. The feeding is frustrating because sometimes he’ll do really well and then he’ll decide he’s only going to take 7 ml.

This is a rough process. There are going to be good days and bad days. I hope for more good than bad! I wish none of this were happening and there are many times I wonder why God thought we could handle this. The other day, though, I briefly felt a sense of normalcy. For a second, I was sitting next to Nolan’s bed and thought all parents have to sit next to their child in the hospital hooked up to billions of lines and wires. Then I remembered that wasn’t the case. It’s not normal for everyone, but it is our normal. And as much as I HATE it and wish it were not the case, I know that God has a plan (hopefully somewhat similar to mine) and that with God’s help we can handle this. He will be there for us on our good days and He will be there on the bad days. He is in control and we have to hope and trust in that.

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This Kid Has Plans of His Own

WARNING: If you are uncomfortable with what happens during birth then you may not want to read any further. I’m not sparing any details. 

 

Ever since we found out about Nolan’s heart we had been planning on inducing around 39 weeks. On January 4, the induction date was officially scheduled for January 18. It was nice having a plan since nothing else had really been going according to plan. I had put off packing my hospital bag for so long because I didn’t really need to pack until the 17th of January. My mom and dad told me I should have stuff packed just in case, so I did, but I really didn’t think I’d need to worry about it. 

January 10 I had noticed a decrease in Nolan’s movement, but it didn’t really worry me so I didn’t think too much about it.
January 11 I had my last prenatal appointment. I was glad because Johnny was going to be working nights so he was able to go to this appointment. Before the appointment I started getting this weird feeling. I told Johnny that Nolan hadn’t moved much since Sunday afternoon. He hardly moved at night which was when he was most active. Because of the weird feeling I decided to just pack up my last minute items for the hospital. If nothing was wrong then I could always unpack them but I was being cautious…something wasn’t right. We went to the appointment and my NST was looking good. Nolan’s heart was responding well and he was moving more than he had been. I still had a feeling that something was off, though. When we went in for the ultrasound Johnny said Nolan hardly had any room to move around because he noticed a decrease in fluid around Nolan. When the doctor measured my fluid she even said it was really low. Then she said she was going to recommend delivery…. so instead of having a week to prepare we had 3.5 hours. I thought I had a whole week to clean and prepare the house so I was a little stressed. But I was also scared. At 7 o’clock that night I was being induced.

We went home and Johnny quickly packed his bag. I cleaned the dishes because if I couldn’t come home to a clean house at least I’d have an empty sink. We called family and let them know and I think it stressed all of them out. I didn’t think I’d really be able to eat dinner because I was so nervous but I actually ended up not being able to STOP eating. We got to the hospital and were ready to check in. They didn’t have any of the orders because something got confused between day shift and night shift. It didn’t take long to sort out and we were given a room. After two hours of sitting in the room and answering questions I finally got the Cervadil. I wasn’t dilated at all so I was hoping this would get me to a 3… wishful thinking. I had minor cramping but was able to sleep through it. I slept until 5 am and waited until it was time to take the Cervadil out. When they took the Cervadil out they checked me again and I was still at a 1.

After I got the Cervadil out I was allowed to take a shower but I couldn’t eat. I could only have “clear liquids” so I had orange jello and chicken broth. Once I had the pitocin I could only have ice chips. The pitocin was turned up every 20 minutes. I was expecting to be in some crazy pain but it never really happened. I had some contractions but nothing was really regular and they were pretty manageable. I was able to take naps and I was talking and laughing. It was easy! I had heard such horror stories about pitocin but I have no idea what they were talking about. I didn’t have a hard time at all.

Around 6 pm the doctor came in to check me again. I wasn’t hoping for much because I had been having such easy contractions. Sure enough I was still a 1. I became incredibly discouraged. I told Johnny that my body was not ready for this and it wasn’t supposed to happen like this. I was never going to progress and I was going to end up having a c-section. In fact, I considered asking if they would just do a c-section so I didn’t have to deal with the disappointment of NEVER progressing. I had no problem with effacement but I just wouldn’t dilate. Since I wasn’t dilating the doctor had to put in a Foley balloon. (Apparently you shouldn’t Google this!) It’s a catheter that they fill up with saline on the inside of the uterus and the outside. It’s supposed to help you dilate. I was really nervous about this so I looked up what it felt like online. Most people just said you feel some pressure but nothing worse than having your cervix checked. There definitely was some pressure!! As soon as they filled both sides up I immediately started having more intense contractions. They still weren’t very regular which was, again, very disappointing. The nurse told me it was okay and it was normal. We were starting from scratch so it was going to take a while.

My mood was completely changed with this balloon. I didn’t really want to laugh or talk. I wanted to lay down and cry. It hurt a lot and it wasn’t even doing anything. The nurse said when you get to 5 cm the balloon would fall out. Every time I got out of bed I waited for it to fall so I would know that there was some progression. It never did! The nurse gave me some laughing gas but all it did was make the back of my throat hurt. Then she gave me some demerol so that I could sleep. At about 2 am the nurse came in and turned my pitocin drip off. My doctor wanted to give my uterus some rest and it allowed me to get a little more sleep. At 4 am my pitocin was turned back on and I was able to get a couple little naps in.

At 6 am the doctor came back in to take the balloon out. It’s only supposed to stay in for about 12 hours and we had reached that 12 hours. I felt such a relief when the balloon was taken out. My contractions slowed down and I felt okay again. Since the balloon didn’t fall out on its own I knew I hadn’t made it to a 5. I figured that, at best, I was 3 cm dilated. Then the doctor checked me and told me I had dilated all the way to a 6! I was so relieved. I had finally progressed and would be having my baby at some point that day. The doctor broke my water. It was the weirdest feeling ever. First there’s nothing and then you feel a warm liquid almost like you peed yourself. Pretty soon after my water broke I started having AWFUL contractions. I felt so bad for the nurse. She was trying to adjust my monitor and keep it in a place that she could monitor Nolan’s heartbeat but I couldn’t stay in one position. I wanted to be on my hands and knees one moment and the next I wanted to be on my side. I tried so many different ways to ease the pain during contractions. I remember feeling like I wanted to rip my face off!

I had made the decision that I wanted to give birth naturally. I wanted to prove to myself (and my mom) that I could do it. I have a low threshold for pain but I wanted to be able to say I gave birth naturally. There were a couple times the nurses would ask if there was ANYTHING they could get me. I won’t lie, I was tempted to ask for an epidural but I was too stubborn to actually do it. I was going to give birth naturally!!

At 7 am, it was shift change. The new nurse came in and was WONDERFUL! She started rubbing my back and showing Johnny where he could put pressure. She was very encouraging and kept reminding me to breathe through the contractions when I would hold my breath. She found a way to adjust my monitor so that they could monitor Nolan’s heart beat and allow me to be in a position that was somewhat comfortable, then she left the room. Shortly after she left the room, around 7:30, I got up out of the bed. This was the ONLY time Johnny was NOT calm. I started spinning around trying to get out of my wires but just ended up tangling myself more. Johnny wanted me to sit down because he was worried I’d pull my IV out. I told him I couldn’t sit down and that I needed to go to the bathroom. Then I realized I really needed to push. He called the nurse and told me to wait until she got there. I don’t know what he was thinking. There was no way I was waiting so she would just get there when she got there. The nurse came in, looked at me, and called the doctor. The doctor got there and told me to wait a second because she needed to get dressed. HA! I continued to try and push on my own. The doctor and nurse got me all set up and my mom got there just in time.

I pushed for about 30 minutes. It took me a couple times to figure out how to push effectively. I had to take a deep breath and then hold my breath for 10 seconds while I pushed. I wasn’t getting deep enough breaths so it was hard to hold for 10 seconds. In between contractions I tried to relax. My mom said I would get so relaxed she thought I was going to fall asleep. Everyone kept telling me they could see his head and I just had to push a couple more times. At one point I felt a pinch and shortly after I heard the sound… I had to have an episiotomy. I realized that the pinch I felt was the lidocaine shot. Pretty soon after that I realized the doctor was holding Nolan! Johnny cut his umbilical cord and the nurses took him to check him out. My placenta was delivered about 2 minutes later. I asked if I could see it but I guess the doctor forgot because I never saw it.

While the nurses were making sure Nolan was okay I was getting stitched up. Unfortunately I was able to feel the stitches being put in. It wasn’t too bad. The worst part about that was the tugging. I was told that Nolan’s pulse ox was 65 so I wouldn’t be able to hold him. They brought him over so I could at least see him before they took him to the NICU.

Nolan Robert Stephens was born January 13, 2016. He was 19.5 inches long and weighed about 6 lbs. 9 oz. 

A couple people asked me about the pain I felt and I can honestly say I don’t remember it. I remember that I WAS in pain. I remember that it was pretty intense and like I said, I wanted to rip my face off. But I don’t remember exactly what it felt like.
Right now I’m feeling like my stitches are the worst pain ever. But as far as birth, I really think you don’t remember for a reason. The pain isn’t what’s important. After you see your baby nothing matters and any pain you may have felt doesn’t even register anymore. I’m so glad I got to do it and I’m so glad I’m a mommy to the sweetest, cutest, most perfect little boy ever!

 

 

12 DAYS TO GO?!

I suppose I’ll do one more update before Nolan gets here.

I’ve still been going to the OB weekly and I really hate it. I find myself dreading Mondays because I hate going to doctors appointments. I LOVE seeing Nolan and hearing his heart, but weekly visits just remind me that everything is not as normal as it should be.

A couple weeks ago Johnny and I were at the appointment and I was hooked up to the monitor. I was expecting Nolan to move a lot because normally he did. This day he decided he didn’t want to move and he also wanted to give everyone a little scare with his heart. He wasn’t responding the way the doctor liked and so I had to stay on the monitor longer than normal. I also had to be “buzzed” and apparently that made his heart respond the way they wanted.

Since then everything’s been looking good. We haven’t had any more issues with movement or heart rate. He’s taking plenty of practice breaths. He’s also found my ribs… Lucky me! His head is no longer measuring 3 weeks ahead so I assume that means the rest of his body caught up. We’re guesstimating a 7.5 pound baby with a normal head. 😉 Apparently he looks like me but I don’t know how you tell that from an ultrasound picture.

Last Monday the doctor said his head was “way low” so that was encouraging. We’ve officially scheduled my induction for January 18, but I’m hoping since he’s already “way low” I’ll go into labor on my own. I just REALLY don’t want to be put on pitocin. I have one more appointment on the 11 and depending on how that one goes my doctor might have me come in on the 17th to start on Cervadil.

Sometime last week I realized I was having a couple Braxton-Hicks contractions a day. Then this week I started having more each day. They’re still super irregular and nothing has been painful. They’ve been uncomfortable but manageable. I’ve decided I’m going to walk up and down the stairs to see if that’ll help. 🙂

Our booster campaign closed! We raised enough to almost meet Nolan’s deductible!!! That is going to be a tremendous help. Johnny and I are so, incredibly thankful to everyone who bought a shirt and donated. Nolan has so many people who love and care for him already and we’re so grateful. He’s going to have a good support system and that’s going to be very helpful as he grows up. So THANK YOU!

Not much else is going on. We’re just anxiously awaiting the arrival of our sweet boy and all the changes this is going to mean.

PRAYER:
I know ultimately Nolan’s birth is completely up to God. And the most important thing is that at the end of the day we did what was best for Nolan and he’s okay. However, I really want to go into labor before the 18th. I want to meet this baby boy!! But I’m also very uncomfortable and I would love to not be induced. So if you could just pray that God’s Will will be done in all this and that His Will is that I go into labor in the next week, that would be much appreciated. 😉

For real though, pray for a safe and normal delivery. (By “normal” I mean no emergencies!) There’s going to be a lot of emotions on Nolan’s BIRTHday, so please be praying for Johnny and I as it’s going to be tough. I also don’t know if I’ll update between his birth and first surgery so please keep in mind his first surgery will be within the first week of his life and be praying that goes well.

 

NEXT TIME I BLOG I’M GOING TO HAVE A SWEET, BABY BOY!

32 weeks down, forever to go!

I was hoping the holiday season would make these last few weeks fly by but that’s just not the case. 😦 I feel 32 weekslike this last 7 weeks is going to drag by and mid-January is NEVER going to get here. I’m so anxious to meet this baby!

During the Thanksgiving break I had a fetal echo. Dr. Roten wanted to make sure everything still looked as it should and there weren’t any changes. I found myself praying that I’d go to this appointment and they’d tell me that his heart miraculously developed. I didn’t get news that great, but she did tell me that the hole in his heart is still WIDE open, which is what we want. At one point I saw the screen say something about the tricuspid valve which caused some worry. If there’s a leak there it could mean that he won’t be a good candidate for the three stage surgery and would have to be put on the transplant list. Luckily I just didn’t know what I was looking at and there’s nothing wrong with that particular valve.

Today I had an OB appointment and this week started my weekly visits. I’ll be going once a week for non-stress tests (NST). Today went well. They hooked me up to the monitor and every time I felt him move I pressed a button. He moved 54 times in 15 minutes. It was actually probably more than that because sometimes he would move right after I hit the button and I didn’t want to hit it again. I was listening to his heart beat and it got really fast (about 160 bpm) then it suddenly slowed down. I thought something was wrong but the doctor told me everything was fine and his heart rate looked good. As of now, he’s handling pregnancy well! We also checked his growth today. His head is HUGE! It’s measuring about 3 weeks further along than what I actually am. Johnny joked and said his head would be born and then 3 weeks later the rest of him would be born. The doctor is guessing his weight to be somewhere around 4.17 pounds which is right on track. I’m confident we’ll have a good birth weight and the majority of it will probably be his head. 😉 He’s also taking a few practice breaths and his movement looks good. I had to get blood drawn to check my iron and apparently in the state of Texas it’s required you get screened for syphilis. I’m hoping my arm doesn’t bruise as bad this time.

Maybe the weekly visits to the OB will make the rest of the pregnancy go by quickly… One can only hope.

I don’t have an induction date set yet because the doctors still need to discuss some things, but it’s looking like it’ll be January 18 or 19. I’m still really hoping I go into labor before so I don’t have to be induced!

 

Don’t forget, we’re doing the booster campaign to raise money for the hospital bills. You can buy the shirts from HERE. The campaign ends December 22 so make sure to get your shirt before then.

Please continue to pray for Johnny and I. Right now we’re doing great and we’re confident in the outcomes. However, I know the closer we get to the birth the harder it’s going to be.

Thanks!!

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27 Week “Bumpdate”

Okay, I just really wanted to use the word bumpdate. 🙂 baby got bump

Anyway, we only have 12 more weeks to go since I’m not allowed to go past 39 weeks. We had an OB appointment today to measure baby and do my glucose test.

I was really nervous about the glucose test because I was under the impression the drink would taste AWFUL. I started feeling super nauseous this morning and I was worried I’d throw up after drinking the stuff and then I would have to do it all over. Luckily I didn’t get sick and the drink wasn’t as bad as I was expecting it up to be. I chose the orange flavor and it tasted like flat orange soda. I drank it so fast that I gave myself a brain freeze, though.

Then we got to go back and see Nolan! We really want/need Nolan to have a good, healthy birth weight. He is ABOVE AVERAGE! He’s measuring about 2.7 pounds and he’s growing fast! He’s measuring in the 70th percentile! 🙂 Before we knew everything going on with him I wanted him to be on the smaller side but now, I want a big, healthy (other than the problems we already know about) baby!!!

Nolan’s heart rate is right where it should be: 127 bpm. He’s been moving a ton, especially when I have to pee. My fluid is looking good and we’re not concerned with preterm labor. Whoo! The greatest news we heard all day though? Nolan’s valves look great, so that’s something to celebrate. We don’t quite know what that means as far as the HLHS goes, but anytime a doctor tells us something in his heart looks good we will REJOICE! We didn’t spend too much time on his heart because we have monthly fetal echos to do that.

I’ve also been thinking a lot about my birth plan and there’s been a lot that has changed in it. I talked to the doctor about a planned c-section but she said she doesn’t like doing them unless medically indicated. She wants me to try and go into labor on my own and give birth naturally. She said with some heart babies they will schedule c-sections so that all the doctors they need can already be there. So it was very encouraging to hear that she’s not as concerned about him. His defect is serious but manageable as far as the birth process goes!!

Johnny and I ask that you continue to pray for us and Nolan. We want him to continue to grow and be healthy! We also are hoping I will go into labor naturally and as close to 39 weeks as possible. Inducing can sometimes cause babies to go into distress and we certainly don’t want that. And please be praying about finances. We’ve decided the best thing for us is for me NOT to go back to work after Christmas, so we’re going to have to learn to adjust with only one income for a while.

We appreciate all the support from our friends and family. Thank you for praying and thank you for being so encouraging!!!

Now, here’s a picture of our adorable little alien sucking his thumb. 🙂

27 week sono

Today, I’m Angry

Johnny and I have recently had a lot of people tell us how lucky Nolan is going to be to have us as his parents. I can’t tell you how good that has made us feel. We’ve been very fortunate with the love and support we’ve had from our friends and family lately. In fact, this whole process has been fairly easy to deal with. But today… Today is hard. Today I feel like screaming. Today sucks. Today I do not understand. Today, I’m pissed!

I know that God has a plan in all of this, but I’d really like to know what that plan is. Right now, it seems like nothing good can come out of this. I’m mad that every day someone has a healthy baby. I’m mad that people who don’t even want kids can have healthy babies. And here we are… Two people who found out our baby boy has a heart defect… A very serious, severe heart defect. It doesn’t seem fair. It’s not fair.

1 in 100 babies will have some kind of heart defect. Why does our baby have to be that 1? Why are we the ones with “what ifs” running through our minds? Why do other people get to plan on bringing their baby home shortly after birth and we’re preparing for MONTHS in a hospital? Why are we the ones preparing for YEARS of surgeries? What did we do wrong?

I want to yell. I want to hit things and throw things. I want to scream at God because it’s not fair! I want to cry until there’s no more tears to cry and then cry some more. I want to be mad at doctors because they don’t know how to FIX this!

I just want Nolan to be okay. I want him to live a long, successful life. I want none of this to be happening, but if it must I want him to pull through okay.

Our Blue Baby

Our lives are about to get very busy! On the 21st of September we had an appointment with a maternal-fetal medicine specialist. The midwife wanted us to go get a second look at Nolan’s heart. I went in thinking the doctor was just going to tell us there was a calcification on his heart and most likely it would go away. The worst thing that I thought they could tell us was that he had a hole in his heart which would need to be fixed. I was prepared for these things and I was okay with them. We went in and she looked at his heart and said she didn’t see what the midwife was seeing!! GREAT! Then she said she was concerned with something else… The left side of his heart looked smaller than it should and she was worried Nolan might have Hypoplastic Left Heart Syndrome. She didn’t go into much detail because she wanted to send us to a pediatric cardiologist for a fetal echo just to make sure. So I googled and I didn’t like what I was reading. I cried a lot.

By the time the fetal echo came I was prepared to hear that the MFM was right. Don’t get me wrong, every part of me wanted the cardiologist to tell us that there was nothing wrong. The closer we got to the appointment the more I got my hopes up that everything would be okay. But I was prepared. While we were getting the echo done I knew what the cardiologist was going to say. Sure enough she came in and told us that she agreed, Nolan had HLHS. Then she went into a TON of detail of what this meant.

The left side of Nolan’s heart didn’t develop properly. The mitral valve isn’t pumping and even if it was the left ventricle is so small it wouldn’t matter. The aorta is too small to receive blood so his heart can’t pump blood to his body. While he’s in the womb he’s fine. His heart functions differently in there so he handles pregnancy well. Shortly after he’s born is when he’d begin to have problems. This is when the business begins.

My original birth plan was a water birth in a birthing center. I will now be delivering in a hospital with a doctor and no water! Shortly after Nolan is born (after Johnny and I get to hug and kiss him) he will be taken to the children’s hospital across the street. Within three or four days after birth he will undergo his first open-heart surgery. Before his surgery he’ll be taking prostaglandins to keep his heart functioning as a fetal heart. He could potentially be in the hospital for up to 6 weeks depending on how things go. Then we’ll get to bring him home and at home we’ll be monitoring his weight and pulse ox at home. Around 3 or 4 months he’ll need a second surgery. After that surgery he should only be in the hospital about 2 weeks, at the most. Then, at around 3 years old he will have his third and final “major” surgery. (He could need smaller surgeries in between.)

Back in the 70s and 80s a baby born with this would usually die within the first couple of weeks because their heart didn’t work like it needed to. Luckily, a doctor came up with a procedure that could give these babies a better quality of life and a longer life. I am so thankful this doctor figured it out! There are people living with this defect that are in their 30s and 40s!!!

Now, there is a possibility that later in life Nolan could need a heart transplant. That’s not uncommon with these kids. However, who knows how far medicine will have come by the time Nolan is in his 30s. There’s also a possibility he might have some learning disabilities due to being blue. (CHD babies will often turn blue at least once in their life and this could cause neurological issues.)

Everything else with Nolan is looking good. Doctors aren’t concerned about any more issues. Everything with me looks good and as long as I can go into labor before 39 weeks I won’t have to be induced!!! I don’t want to go into labor too early because we want Nolan to have a good birth weight, so I’m thinking 37-38 weeks sounds good. I REALLY don’t want to be induced.

We have an appointment with the surgeon who will be doing all of Nolan’s surgeries on November 11. I will have to go in for monthly fetal echos to make sure nothing else is going on. I will be seeing my OB every two weeks until the 32nd week, then I’ll be going once a week for non-stress tests. Johnny and I are ready to do whatever we have to for this little boy!

We would appreciate a lot of prayer. We’re both terrified because this is not something we ever expected. Please be praying for continued health for Nolan and I. Pray for peace and strength during this time. We also will have a lot of expenses with all the surgeries and hospital stays so please be praying for help as we try to figure out how to make this work.

We have been very thankful for all the support from family and friends. We’re very fortunate to have the people in our lives that we do who encourage us in these difficult times. We’re also very thankful for all the people who love Nolan so much already.

And lastly, I never really saw what the doctors were looking at when they’d tell us that he was boy. But at my last appointment I saw clear as day… The OB said he was showing off. 🙂

nolan

If you want to know more about HLHS you can go to:

The American Heart Association. or
The Cove Point Foundation.

There’s also a short video series on YouTube from CHOP that explains HLHS. The link will take you to the first video and each video after should automatically play.

And here’s a video explaining each surgery and its purpose.