I remember this moment. I felt the reality of what could happen wash over me. I saw heaven open and knew that in these moments, Jesus was speaking directly to you. I felt dread. Not that Jesus was there. But that Jesus could take you. He could take you to be with your brother and I would be left behind again. Left in a hospital with just your body here with me.
And so I begged.
I begged Jesus to leave you here with me. I asked others to get on their knees and beg with me.
And then I took a picture.
I took this picture to remember that moment. Not because it was pretty. Or anything was ok. To remember the moment I shattered and would need to rebuild again. It didn’t matter if Liam stayed or left. I knew that was the last picture of the woman I had been, and life had to begin again soon after.
This was the last time I really cried in the hospital. I shed some tears when they took him for surgery, but this was the last time I wept and cried out in prayer.
Comfort came within the hour. Thomas came, and with him, Gods peace and promise. From that moment on I was sure that whatever may come, I could face it. I knew we could do it together. We could be whatever God needed us to be through this.
And so we faced it together. The way we faced the death of our first son together.
We held our youngest sons hand as they poked and prodded him. We kissed his face and rubbed his head and put our heartbreak aside to be there for and with him. until the day we were allowed to hold him again.
Liam recovered. And yet we are all still recovering and rediscovering ourselves. We are not the same. And we still aren’t sure what this change looks like.
I decided it was time to write this down. With everything happening I haven’t been able to do an Instagram story like I had wanted, but I do love written word so I am so excited to share this with y’all!
There will be some photos from our birth, so if birth photography isn’t your thing, I’d skip this particular blog post ♥️
On July 29th, 2020, I was 41 weeks and one day pregnant.
As I’ve posted before, I’ve never made it to 40 weeks pregnant before and so it honestly shocked me that I made it to my 41 week appointment! It’s standard at my birth center for the midwives to offer a “cervical massage” at 41 weeks to see if we can move things along, and I chose to go with that. If you know what it feels like to be 41 weeks pregnant, you probably would too! Colleen, my doula, works at the birth center and luckily was able to hang out with me throughout my appointment which was so fun! She has bright pink hair and is one of the coolest people I know, multiple people stopped us to tell us we looked like mermaid sisters, so it was already a pretty great day. From the time I left the birth center I had already started having somewhat regular surges, nothing intense, but enough to know that we could definitely be having a baby soon!
My mom and I stopped at sonic to get the good ice to have at home, and we were back at the house around 1:30pm.
Thomas decided to make burgers for us and my mom and Hannah and Lane, and while they did that I decided to put together a sweatshirt I had been envisioning for awhile, but I had to stop every few minutes and sit down to breathe through a surge. I wasn’t super hungry and I’m honestly not sure if I ate even a bite of a burger because of early labor. I mainly just focused on finishing this sweatshirt.
I was texting Colleen and she suggested I go through the miles circuit to make sure baby was in a perfect position as labor progressed, so I started that around 6:30. If you’ve never done the miles circuit and you are pregnant, I highly suggest you look it up and do it! I think it seriously impacted how quickly everything happened from there on.
I continued to text Colleen and the midwife line throughout the circuit, but around 7:40 I decided it was time for Colleen to head our way, luckily she lives five minutes from us so she was there almost immediately!
At this point I turned on Folklore (duh) and slowly started fading into each surge. I spent some time on my yoga ball while Thomas went between rolling and rubbing my back and holding my hands through each surge, while Colleen used all the clary sage on acupressure points on my right leg. I was able to laugh and joke about Taylor saying the F word for the first time in a song for awhile, but as the surges built, I needed to start swaying and breathing while Thomas held me up.
Around 9:00pm the pressure started to change, and we decided it was time to head to the birth center. Thomas drove me with Colleen close behind. At this point in the car I was speaking multiple affirmations to myself to get through each surge. When we got to the birth center, Colleen suggested I sit on the toilet for three surges to help baby move down further.
The three least liked surges of all time. I was then able to move into the tub and that was probably the best feeling I’ve ever experienced.
At this point I felt the most in control, and started speaking directly to our baby. When checked, I was only 7cm and baby was at -1. Somewhat discouraging to hear but I did my best to block it out and focus on the fact that baby would be here soon either way.
I want to say that labor is hard, it affects every single part of who you are, it’s an unmaking of you, so that you can come out the other side ready for a totally new life. You are not just birthing a baby, you are creating a mother. Here in my fourth labor, I finally feel like I’ve met the mom I could be, and I hope to bring her out of this experience and into my daily life.
I spoke to Liam throughout pregnancy, and so speaking to him throughout labor felt more sincere and real than trying to encourage myself. Because he’s a part of this too, he was transforming right there with me throughout this whole experience.
As wave after wave came, I told him to come to me. I wish I could tell you timing, but at this point I had absolutely no sense of what time was. So sometime after 10:00pm, my water broke. For me, the time between that and Liam being born was mere minutes. The pressure completely changed and my body was going to push. I made some joke about the ring of Fire, and everyone told me to slow down. When I felt his head out, I put my hand down and touched him for the first time on the outside. When I pushed again, he was out, and I was able to catch him myself and pull him to my chest.
Breath.
He was here.
He was perfect.
He was magic.
I was helped to the bed in the room, and soon after laying down I pushed the placenta out as well. After inspecting it, Heather, our midwife, put it in a bag and we kept it attached to Liam for over an hour. I had one small tear, and after making sure my bleeding was minimal, we were left alone to bond.
Liam didn’t have even one hiccup that wasn’t normal. He was absolutely perfect from the moment he was born to the moment we left the birth center and beyond
I’m still in awe of this experience, and I truly believe that this birth prepared me to speak up, and become the advocate this baby needed to find his heart defect, and get him where he needed to be in time for the surgeons to save his life.
I’ll forever be thankful for this incredible team. For my doula, and for the amazing midwives and nurses that made this a safe and incredible birth.
But really, I can’t even speak to how amazing Thomas was. He went above and beyond with everything that I asked of him. He was with me every step of the way and made sure I was taken care of always. I love him even more today and I’m so thankful he’s the man I chose to do this life with.
This is an experience that has forever changed me and strengthened me, I am forever new.
All photography done by the incredible Colleen Harvey Photography
We got home last Monday afternoon after 11 full days being inpatient. It’s been amazing being home but also adjusting has been hard. Going from having every breath monitored to having to totally trust myself and what we can see on the surface is a scary transition.
But Liam is doing incredibly well! We have his post op appointment back at Children’s in Aurora on Monday, and from there if everything looks good, we will be seeing a new cardiologist here in Colorado Springs from here on out.
I’m currently just writing down questions as they come to me, and I realize I’m still processing everything very slowly. This has been such a whirlwind.
Liam will be one month old tomorrow, and he has spent almost half of that short life in a hospital. It’s a reality I never wanted to know.
But I’m so thankful to be home! So thankful he’s healing from surgery, and from here on out we’ll take everything one step at a time ♥️
Liam had his breathing tube taken out last night! We fortified his bottle feeds but he’s also nursing about four times a day, and this morning he has gained weight!
Right now they are 50/50 on sending us home tomorrow or Monday. It’s all up to him and how he gains over today! I have high hopes but I’m trying to prepare for a Monday or later release because that’s still very possible.
Today, Thomas and Roni rough the kids up to Aurora so I could see them. I was super nervous because honestly there’s no wrong way to react to your mom just disappearing for over a week. I knew that they had the right and it was ok for them to be stand offish. W
hen I walked outside, Chantry immediately ran up to me and gave me the biggest longest hug. Of course I cried. She understands too much of what is going on, but I’m thankful she also understands how much I love her and how much I miss her when I’m gone.
Jack smiles but he really just wasn’t sure what to do. I asked if he wanted to sit with me, and he said no. But when we got up to walk around he immediately wanted to hold my hand. That moved to asking me to pick him up, and then he gave me a kiss they both stayed pretty close for the whole visit and pretty quickly got back to our normal selves.
Thomas was able to spend some time with Liam, and learn how to bottle feed him which I’m so thankful for. He needed some dad time.
When it was time to go, I explained to Chantry that I had to go back up and take care of Liam. I pointed out which building I would be in. And I told her we would all be together so soon. She was sad, but told me it was ok, as long as dad came back home with her. I promised that he would.
Jack was pretty upset to see me go, and of course I cried again.
Leaving your children for your other child will never be easy. I pray constantly that we will never have to experience this again. Praying the hospitals open back up to families, because this is actual torture.
So please pray that Liam gains weight, that the doctors feel safe sending him home, and we all get to be together again tomorrow. I am so ready to be home.
Yesterday was mostly uneventful after multiple days of testing and running around the hospital. BUT speech did come and evaluate us for breastfeeding, and think it’s an option! At this point, he gets tired very easily nursing and taking a bottle. He’s usually eating about half of his feed via bottle or breast, and then getting the rest through his feeding tube. Unfortunately he lost weight today, almost two ounces over the last 24 hours. So now we wait for rounds and see what the next step is.
Overall, he’s doing incredibly well for a baby that had heart surgery just five days ago, but it’s frustrating when things just don’t go to plan, especially when that currently means added days in the hospital.
I just want to take him home. But I have to remember that we all need to be sure that he won’t have to be readmitted because we just didn’t do everything he needed.
I miss Chantry and Jack. I miss Thomas. I want to put this chapter behind us and move forward, even though I’m unsure of what forward really means.
Most likely the plan will be to fortify the milk he’s getting through his feeding tube and through his bottles and hopefully they’ll still let me breastfeed him some to keep the habit up.
He needs to gain weight. And when he does begin to gain, that will mean going home. So please be praying that:
1. His body continues to get the rest and nutrition it needs to heal.
2. That he would begin to gain weight with fortified milk, and we can get his tube out.
3. That I can keep my spirits up and not let small setbacks ruin a beautiful day I get to hold my son.
He is here, and we’re all working towards him thriving.
Every time I hold you, I’m praying you don’t hurt from it. You nuzzle in, looking for the main comfort I always provided. But now? Now it’s dangerous.
So we enter into a new world. One where too soon that nuzzling for milk won’t exist anymore. I’m not ready to give it up. I am aching to not give it up. Because I know the comfort it would bring us both. But we will find a new way, me and you. We will be stronger for this, I know it.
I’m mourning the ease of our life, while also rejoicing in the fact that this hard means you’re coming home with me.
No empty arms, no small boxes full of ashes. I get to pick you up and carry you out of here.
I will accept the hard, the loss of that idea of an “easy baby” because that doesn’t mean anything. Easy isn’t necessary. Having you home with your siblings, dad, and me is.
I will take you to a thousand appointments, I will pump every two hours for the next two years. I will do whatever it takes to give you everything you need to thrive. Because you are worth gold, lionheart.
You are stronger than you should have to be at this age, I’m so sorry I couldn’t protect you from this hard new and strange world.
How ever strange it sounds, I’m so thankful we had time. I’m overwhelmed by how perfect your birth was, how easy it was to have you home for a little bit. I think God knew how hard it would be for me to have another high risk pregnancy, surrounded by doctors poking, talks of surgery, and loss of the normalcy and beauty I found at the birth center. I think he knew how badly I needed to have you naturally and magically, so that I could face this with new perspective, that I could learn to speak for me and more importantly, for you.
God knew what he was doing when he gave me you, and now we will face this together. This family will be stronger and brighter because of you, lionheart. We all have so much to learn from you.
I love you more than I could ever say. Let’s go home soon.
They did Liam’s post-op echo this morning and found that his aortic valve is bicuspid, not tricuspid like a normal heart. This is genetic, and Thomas and I and the kids will all need to have echos to check our hearts. For most people, this isn’t that big of a deal. Even if one of us or the other kid’s have it, it won’t really have a huge impact on our lives other than the knowledge that our hearts are a bit different. For Liam, it will be something we watch closely over the years to come. I’ll probably post more about this diagnosis for him later. It’s a lot to take in and I want to talk to whoever becomes our regular cardiologist before I share more.
Liam then had his post-op chest X-ray, which led to his central line being taken out, because he officially needs nothing intravenously. he is wire free besides things that are keeping track of his vitals, and then his feeding tube that is down his nose still.
Finally, his swallow study. It was super interesting to watch and be a part of! The conclusion is he CAN eat by mouth via a preemie flow bottle! This is a huge step in the right direction and I’m so thankful we most likely will not be going home with a feeding tube! Tomorrow they will come talk to us a bit more about what to expect, but he’s currently taking most of his breastmilk via bottle! So so thankful for this!
The speech therapists want to try really hard to get him back to breast. So we might try a couple of things tomorrow to see if that’s possible. I’m so glad they want to try, and I’m also praying that it’s possible. Breastfeeding is so clearly not everything. But it has helped me to bond with both Chantry and Jack and it’s something I love providing for my babies. To have that be ripped away has honestly been hard for me. Especially when he was so easy to feed before surgery. the thought of pumping and bottle feeding for the next 6 months to a year is daunting. I honestly don’t know how to wrap my brain around it.
Tomorrow, we will have rounds, see the speech therapists, and hopefully get an idea on it we’ll go home this week or not! Lots to think about, lots to prepare.
Prayer requests
1. That Liam will continue to improve overall.
2. That we’ll both get some sleep tonight
3. That feeding just gets easier from here.
That is about all I have today. Thank y’all again for staying with us through this. There is a long road ahead. But I know God is leading us down it.
Today Liam weaned off of most of his medications that required him to have IVs and all of his lines. So he had all but the central line in his neck removed. He’s now taking a blood pressure medication and pain meds all through his feeding tube that was placed yesterday.
He was then moved to a crib, and after a swallow study was ordered, he was moved from the CICU to the CPCU, this is a huge step towards going home!
He has his swallow study at 3PM on Wednesday, the 19th. I don’t know what the study will show. But it will give speech the best idea on how to move forward with his feeding.
He was incredibly upset and over tired when we got to CPCU. He remained that way until about 12:30AM, at which point he finally fell asleep. He’s currently getting all of his food through his feeding tube.
His vocal chord is pretty damaged according to the ENTs. He also has nodules.
I think we’re all ready to bust out of here. I’ve never felt so helpless as when he’s so upset, and I’m not allowed to do anything but rub his head and talk to him while he so obviously just wants to eat. For comfort if it not just because he’s starving.
Pray for
1. Miraculous healing of his vocal chords.
2. He passes the swallow study and we can get him eating normally soon.
3. That he remains comfortable while we try to get him down off most narcotics.
4. Just that he can rest well over the next couple of days. He needs good rest to heal.
5. Just my patience and my sleep. Being in the hospital knowing I’m the only one who can be here with him is hard. Thomas would be here in a second if I asked, but I know the older kids need him more than I do right now. Everything about this situation is hard.
Thank you all for continuing to pray. I know the Lord is giving us purpose through this, but that does not make it any fun.
This was what Thomas wrote the night before Liam’s surgery. It’s posted on Facebook, but I wanted to give it a permanent place on my blog as well
The night before
Its the silent cries that get me the most. Like he’s screaming underwater. The breathing tube mutes his cries entirely. But I know the face. I have seen him make it only a few times. When his momma is not there, when she has to take care of one of his siblings and he has to chill with dad but wants to eat. Usually, it’s a slow build. It starts with a whimper, then a squirm. Slowly building. You know the one I’m talking about, when a baby goes silent but only because they are about to let lose with all the anger inside their tiny little bodies to let you know they are 100% over this.
Except now, it is silent. Sometimes it almost looks like he is yawning. But then you see it. His eyes come open and you see the look of terror. He seems to be screaming, “daddy can’t you hear me??” This hurts, I don’t like this, I want mom, I want to go home, I want it to be like it was, but he has no words. Not even a sound, no screams of agony. Just silence, writhing in misery and a look of shear bewildered terror overtakes his face.
It tears at your soul.
It makes you sick to your stomach. Never have you had to watch your kid in such discomfort and fear and been powerless to help. We try our best to comfort him. We hold his head, touch his cheek. Do our best to let him know we are here and he is not alone. There are familiar faces not just people in masks with cold gloves and unfamiliar voices.
We are stuck here in this in between. Surgery is coming. I tell him I love him, and I would trade places if I could. But it’s got to get worse before it gets better. I tell him this is not the world he will know, the life he will know. This isn’t normal. I reassure him that we know how much this sucks. I know he doesn’t understand the words. But he understands my voice, our voices, my wife and mine.
Who knows what babies think, or comprehend. But I can see what he is feeling. It’s written all over his face and screamed with every fiber of his being.
His spirit is strong. I know he’s a fighter. He’s shown us that much in the last 48 hours. He has improved so much since he was life flighted here. I know he will keep fighting, keep improving. We trust the doctors. We trust the Lord. We trust God to guide their hands and their decision making, on behalf of our baby boy whether they believe God is in control or not.
Hang in there bud, your gonna kick ass at this thing called recovery. Tomorrow is your big day, get some well needed rest.
To all the moms and dads going through this right now or in the past or future. Stay strong for your little one. They will need your courage. It’s going to get worse before it gets better. But eventually it will get better.
Today was a really big day! Liam had his breathing tube removed, and his chest tube, and his PICC line, and his catheter! He’s now left with one central line in his neck, an ART line in his right wrist, an IV in his right hand, and another ART line in his right thigh. the two ART lines are to measure his blood pressures. Before surgery, the blood pressures in his legs were much much lower than his arms. Since he’s come out of surgery, they’ve stayed consistently equal! Dr Mitchell has given permission to take the leg ART line out tomorrow morning.
We were so hoping that Liam wouldn’t sound really hoarse when they pulled out his breathing tube. But unfortunately he did. Obviously some of that is the fact that he had a tube down his throat since Thursday afternoon. But all of our doctors agree he sounds like his vocal chord has some damage. We will have an ENT come by to look at it tomorrow. But today we had speech therapy come by, and they let him breastfeed for just a little bit so they could watch him. They are very impressed with how strong he is, and how quickly he was ready, but they are concerned that he isn’t swallowing everything he’s getting out, and the last thing any of us want is for him to aspirate. Because we want to avoid that, they put a feeding tube through Liam’s nose and down into his stomach to give him breastmilk. hopefully this will just be for tonight, and once the ENT looks at his vocal chord, we’ll have a better understanding of the damage done and we’ll be able to make the best decisions for Liam moving forward.
As of tonight he’s very squeaky. His throat is definitely sore and a little swollen from the tube. He’s also still on blood pressure medication, but they’re trying to switch him from an IV drip to oral meds so he can go home with them. Because his heart was working so hard to pump blood through his coarctation, it’ll take a little while for it to learn how to pump on it’s own at a slower rate.
He’s also on three different pain meds for now. I’m so thankful they’re taking his pain seriously and doing all they can to manage it. It’s heartbreaking when it’s clear he’s struggling.
Sorry this update is a bit scattered. Thomas went back to the springs today to be with the kid’s, see his parents, and hopefully start to get us moved into our new apartment.
Did we mention that we were scheduled to move apartments this last weekend? Yeah. Luckily our apartment complex is incredible, and told us to take care of the family, and they would give us as much time as we needed to move. So so thankful for understanding staff, and for God putting us in a place that we actually like renting from!
Prayer requests for tonight are
1. Liam’s throat would heal quickly and he would stop squeaking as much. It’s heartbreaking to hear him having trouble breathing.
2. That the ENT would find minimal damage to his vocal chords, and he improves on eating enough to move to breast instead of tube feeding.
3. Liam’s pain would be well managed and he stays calm and non stressed.
4. My heart. I’m missing Thomas even though I’m so happy he’s with Chantry and Jack. I feel torn in two being here with Liam where I know I’m most needed, but also knowing that doesn’t mean my other kid’s don’t need me too.
5. That we can start weaning a couple of other meds, and move even closer to a going home date.
That’s all I have. Thank you all so much for your prayers and thoughts and positive vibes. We are feeling them, and we feel so loved.
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