Working Through the Flashbacks

After Joshua died, I struggled horribly with flashbacks from the day that he died. 

Every time I closed my eyes, or let my mind rest, I relived that morning. I pictured him blue and lifeless. I felt his body twitching after he had taken his last breath. I heard the sounds of him struggling to breathe, gasping for air. I remembered his eyes, looking up at me for the very last time.

As time has worn on, I have struggled less and less with those flashbacks. They aren't nearly as intense as they used to be, and I've managed to control them when I feel them coming on.

However, there are triggers that set me on edge. Sounds or sights that bring me to the edge of a full blown flashback that I have to work through.

Having Luke has been such a blessing to me. He has brought so much healing to my broken heart. He has not replaced Joshua, but has brought healing to some of the most damaged parts of my heart and soul. His new life has brought life and joy to our family in ways that we never expected.

But, I'm not going to lie, it's been a struggle.

The questions of why life wasn't like this for Joshua always seem to be at the back of my mind. I wonder what life would have been like if Joshua had lived. The struggle of "unfairness" is something that I have to continuously give to God.

One of the biggest obstacles that I face with Luke is constant fear and worry.

I think all new parents are always slightly on edge about their babies. They wake up out of a dead sleep to check to see if the baby is still breathing- especially if the baby has slept longer than usual (I remember doing this with both Caleb and Hannah when they were tiny babies). I think all new parents have some small amount of worry about their baby's health.

My fear with Luke is heightened, to say the least. It is something that I battle every day- determined not to let my fear from past experiences rule my life.

I wake in the middle of the night and have to check on Luke (even though he is in the crib that is literally right next to our bed.) I have to listen to his breathing, check his color, and touch his face to make sure he is warm. I have to feel his heart beating inside him before I can finally relax and go back to sleep.

I am on heightened alert when he is fussing in his swing- always checking to make sure his color is pink and that his breathing isn't labored.

When he chokes after a feeding, or works on spitting up, his noises just about send me into a full blown flashback. The sounds that he makes are identical to the sounds that Joshua made the first time that he coded and I found him blue in his crib.

We have had Luke checked over multiple times by his pediatrician and cardiologist. He is, by their standards, 100% healthy. We have absolutely no reason to worry that he will die. But I can't help but worry. I find myself wondering if I should call his doctor about this symptom or that symptom, when my logic tells me that there is nothing wrong. That's when I have to take a moment and remind myself that Luke is ok.

The triggers are there, and they are real. It is a constant battle within myself to not let that fear control me. It's something that I am working on every single day- just resting in the fact that he does not have the health issues that his brother had. I refuse to let my fear and worry rule my life. I will not let it snuff out the joy that I have found in Luke's precious little life.

Strength To Do The Next Thing

I'm going to be 100% honest.

I feel like I'm falling apart.

(I know. These past few posts have been extremely uplifting right?! ha!)

But I'm being honest.

I feel like at any second, my brain and my heart are going to explode and all of my marbles are going to come spilling forth.

I'm exhausted. Spiritually, physically, emotionally. Exhausted.

Last night, I found myself the most tired I have been in a long time. All I wanted to do was sit on the couch and veg.

But there was a sink full of dishes that needed to be done. 2 small children that needed to be put to bed. A load of laundry that HAD to make it into the dryer- but couldn't until the load in the dryer was taken out. There were toys that needed to be picked up, food that needed to be put away, AND medicine that needed to be taken. (not to mention that Shane was working until 10:30pm, so I was on my own.)

As I sat on the couch, I lost it. The tears came and I thought to myself, "I can hardly make it through tonight, how in the HELL am I going to make it through this week?!"

I let the tears come for a total of 5 minutes. As I sat and cried, feeling completely overwhelmed, I formed a mental list of what needed to be done and put them in order of importance. I told myself that I would simply do the next thing and get through that. Then once that was done, I would worry about the next, and the next, and the next. Literally one thing at a time.

As I dried my tears, I pulled myself off the couch and put the kids to bed. That was the most important task on my list. I felt like it took every last ounce of energy out of me, but I did it. I came back down and I regrouped. I cried a few more tears and decided that laundry was next. (see?! I told you! I'm losing it....I've gone completely crazy....)

Once again, I pulled myself off the couch, all the while asking God for the strength that I needed to keep going. I finished that task and repeated the whole couch, cry, pray, do the next thing, process all over again until everything was done.

Last night, I realized that this week is going to be the same way. I can't focus on Monday morning when I drop my baby off at Kindergarten. I can't focus on Tuesday at 4:41pm- the moment that I laid eyes on Joshua for the very first time. I have to worry about the very next thing- praying that God gives me the strength to do it, and deal with those things when they ARE the next thing.

I am resolved to take this week moment by moment. Allowing the tears to come, allowing the strength of My Father to get me through, relying on family and friends to help carry the load. I simply cannot think about tomorrow or the next day. I have to think about now.

And that, my dear friends, is how I am going to get through this week. By asking God only for the strength to get me through the next thing.

Where Am I?

Right now I'm sitting in a hospital bed at a hospital in our town.

Last night, I asked Shane to take me to the ER. I was having some trachycardia (fast heart rate), tingly hands and feet, shortness of breath, and nauseousness (without any sort of strenuous physical activity).

After a battery of tests, the doctors aren't sure what is going on. They thought initially, it was something related to anxiety, but after giving me some medication to help with anxiety- my heart rate was actually accelerating. All tests to look at my heart itself have come back normal- no abnormalities or defects and no heart arrhythmias or murmurs.

After some careful consideration, the doctors decided to admit me for further testing and observation.

I continue to have elevated heart rates- often times going up to about 140-145bpm. I have an ultrasound scheduled for this afternoon to look for blood clots in my legs.

As soon as I know anything, I will update. In the mean time, prayers are much appreciated. 

Don't you wish you had my life?!

Cardiology Visit Updated...again

So...after about 2.5 hours of waiting at the cardiologists office, we finally were able to see the doctor.

Here is what we found out:

Hannah has a very small (2mm) ASD. An ASD is short for Atrial Septal Defect. It is essentially a hole in the wall of the heart that separates the two upper chambers. When we are born we all have an ASD. However they usually close within the first year of life. Since she is 2, almost 3 years old, they want to keep an eye on it. He is hoping that it will just close on its own. However, if it doesn't it should not need any surgical intervention unless it gets larger. I'm positive she will be ok. I'm just thankful we know about it and can keep an eye on it. We scheduled an appointment for a year from now to make sure that it has closed. (Side note: the doctor could hear a small murmur. PLEASE....WHEN YOU TAKE YOUR CHILDREN TO THE DOCTOR ASK THEM IF THEY HEAR A MURMUR. If they do, don't just fluff it off. Make sure your child is OK!!!)


Now to Caleb. He's been continuing to have those crazy breathing/pounding heart episodes. The doctor started him on an inhaler for asthma just a month ago (I'm still not fully convinced that is what is going on...). He wants to be sure that it isn't some sort of arrhythmia or fast heart rate. Caleb is hooked up to a Holter monitor for the next 24 hours. We will have to take him back tomorrow and then hopefully we will have the results of it soon and then decide where to go from there.The ECHO and EKG showed that everything is fine, but it wouldn't have shown if he was having random episodes of arrhythmias.

Surprisingly, I am OK. I'm glad that we know exactly what is going on. I'm glad that I pushed to have both of them checked out. I'm continuing to follow my instincts and they are proving to be right (even if others think I'm a complete basket case!). I'm thankful that the stuff with Hannah's heart is not serious and I'm praying that Caleb's stuff isn't either.

Thank you all so much for checking in and for your words of encouragement and most of all your prayers! I really appreciate it!

Another Diagnosis

Remember this post? I talked about not worrying about a possible health issue that is going on in our immediate family.

I think we are beginning to have some answers.

Caleb has been having some episodes of weird breathing and gasping for air.

At first I ignored them because I would notice them when he was leaning over things- the computer desk, the arm of the couch, the dining room table. I thought maybe the pressure of his body on the hard surface just caused him to gasp for air a bit.

But then I started noticing it while he was just sitting or as he was laying in bed.

One morning he crawled into bed with Shane and me and he was doing the weird gasping thing. Shane and I laid there listening to it and Shane said something along the lines of "That doesn't sound right...maybe we need to get that checked out." I didn't want to admit it, but I agreed.

So I called the doctor and took him in. She wrote orders for a chest X-Ray, but she wanted to wait and see if he had any more episodes. I was hoping that he wouldn't, but over the next few days we noticed that he had quite a few of them.

We took him for the X-ray and after she looked over it, she thinks he has some mild asthma.

I feel like I should be rejoicing. At our appointment with her, she was concerned that he could have possibly been having some episodes of SVT ( basically episodes of dangerously fast heart rates). I was worried that some sort of CHD was beginning to make itself present. But that was not the case and I should be so SO thankful for it.

But instead of sitting here feeling relief, I'm sitting here crying. I should be thankful it's just asthma and not a heart defect or anything else. At least it's manageable. (I guess I was really hoping to be told that I was crazy and totally overreacting....)

I watched my brother struggle with asthma his entire life. Although his case was severe, and Caleb's does not seem to be, I still see a life long struggle of keeping his breathing under control.

Our family received the most devastating diagnosis of our entire lives with Joshua. We watched him struggle and go through things that no human being should ever have to go through. So why in the world is this mild diagnosis of asthma causing me so much grief?!

I guess it reminds me that no matter what diagnosis a child receives, whether it be asthma, a heart defect, cancer, or a bad case of the flu, it sucks....because its your child. None of us want to see our child struggle or get sick. Yes, some are worse than others, and some are more life threatening than others, but any diagnosis SUCKS.

I'm going to stop whining now, put on my big girl panties, and figure out our plan of action to make sure that Caleb is well.

Thanks for listening reading my pointless pity party....I'm better now.

This may be hard to read....

This post is deeply DEEPLY personal. It is raw, and will probably be hard for some to read.

I want to share with you my memories from the morning that Joshua died. The details from that morning are what haunt me at night. I am seeking counseling for PTSD, but it is good for me to get it out....to talk about it...to share it with others....if it doesn't make sense, I'm sorry. I'm not going to reread it or edit it.

Wed. Oct. 6, 2010

My dad was coming to spend the day with me. I was tired of sitting around the hospital by myself, and had decided that I could really use some company. My dad graciously accepted to come down and spend the day with me.

He called me at around 7:40am to tell me he was on his way. He also woke me up. You see, I had stayed late at the hospital the night before, and I had planned on sleeping in that morning. After my dad woke me up, I decided to quickly get out of bed, shower, and get over to the hospital to spend some quality time with my little man before my dad showed up.

I got to the hospital around 8:15. When I walked past the window to Joshua's room, I saw that he was kicking his feet, most likely crying. I entered his room and sure enough, he was crying. I quickly put my bags down, and went to his crib. I picked him up and said "Good Morning my sweet baby!!! How are you today? I've missed you." I gently kissed his head, and he immediately calmed down. I rocked him in my arms for a few minutes as I continued to snuggle him.

After being there for about 5 mintues or so, his O2 alarms started going off. They were in the low 60's (which for an HLHS baby a O2 sat that low is not completely uncommon.) I watched it and didn't panic, because it usually popped back up to the low 70's fairly quickly. After a few minutes of it being low, i finally started to worry. Joshua was calm, and I didn't want to put him down. After another minute, the nurse came in and decided to turn up his oxygen. He was up at 90%. We watched him for a few minutes, and his sats kept going lower and lower.

He was still calm, and was not blue. We messed with the pulse ox some (it was known to not pick up very well, and it was not corelating very well with the heart rate- so we thought maybe it was a bit of a malfunction). By the time we were done adjusting his pulse ox, his sats were in the 40's. That is when his heart rate started dropping. It quickly went from a healthy 148 bpm to 110, 105, 100, 90......

The nurse saw that and immediatly yelled out Joshua's door for help. The doctor was in immediatly and I layed him on his bed. By that time, his breathing was labored, and he was extremely dusky in color and he was looking up at me with those beautiful eyes that were screaming at me "Mommy help me...help me!!!" I frantically tried to get the mobile off of his crib to allow the doctor full view of Joshua while she was working on him. She immediately started chest compressions and told me to leave the room.

I stumbled out of the room and made it only about 2 feet out of the door before I fell to my knees and started begging God for mercy. Somehow I knew that this was it. Joshua's sweet life was coming to an end.

The nurses called for the crash cart and a ventilator. People rushed passed me as I kneeled on the floor praying crying out to God. Finally a nurse came and got me and took me to the quiet room. She sat and talked to me for  a minute, quickly explained everything that was going on, and promised that she would come back and keep me updated. She told me that they had already given Joshua 1 shot of epinephrin (totally butchered that spelling.) and that his heart was beating with the help of chest compressions. She told me to call Shane and that she would be right back.

I called Shane and told him what was going on.I called my mom. I texted facebook and blogger to get people praying. I did the only things that I could do- spread the word so that prayers could be going up. As I talked to Shane, I told him that I felt like we were going to have to choose when enough was enough. He told me I was wrong, but I knew. I knew this was the end. (Thankfully, we never had to make that choice, Joshua made it for us.)

The nurse came back in and told me they were still working on him. They were still doing chest compressions, and that things weren't looking good. He was hooked up to the vent. They had given him another 6 shots of epinephrin and they had just a tiny pulse. I will never forget the look on that nurse's face. I will never forget the next words that came out of her mouth. She said "Jill, you need to come in and hold your baby."

She led me out of the room and back to Joshua's room. The room was packed with more people than I could count and it looked like a war zone. There were syringes all over the place, machines, wires, boxes, tubes, wrappers everywhere. They pulled up my recliner next to his bed and gently lifted Joshua's limp blue body into my arms as I sat down. I held him, told him I loved him, and prayed for him. I asked Jesus to heal my sweet baby in His arms. They turned off the machines, the vent, the monitors and Joshua was gone at 8:58am.

My precious baby that I had loved and fought for. He was gone. I sat in stunned silence- knowing that I would never see his beautiful eyes look up at me again. I asked the nurses to take the vent out of his mouth and to disconnect the tubes and wires. I asked for them to take all of the equipment out of his room. It was just me and him for a few brief seconds.

I knew I had to call Shane. By that time, he was already on his way down. I will never forget our brief conversation. I told him that Joshua was gone. Shane cried out, pleading with God. "NO!!! NO!!! NO!!!!" I told him that I was holding him and that I would hold him until he got there. I told him that I loved him and to please drive safely. The pain was unbearable. If I could carry the pain for him, I would have in a second. Seeing him go through it, and dealing with the pain of Joshua's loss was enough to almost kill me.

By the time I hung up with Shane the chaplain had come in. She asked if I wanted to be alone, and I told her I didn't. The nurses asked if they could call anyone for me and I gave them a few people to call. I sat with my baby, lifeless in my arms, and told him how good God is no matter what. I said it over and over and over. "God is still good sweet Joshua, God is still good." I prayed, I cried, I worshipped, I rocked my sweet baby.

I know this is probably hard for you to read. It's something that I relive every night before I fall asleep. I can't get the images of him dying out of my head. The images and thoughts and feelings are enough to make phsyically sick.

Writing is so deeply personal and theraputic for me, and the fact that I am able to write about it speaks volumes about my healing. Thank you for sharing this burden with me and for praying us through this.

I was warned...

I was warned that this road is long and hard. I was warned about the rollercoaster we were about to get on. I was warned about the CHD dance- one step forward, two steps back.

Nothing prepares you for it until you are in the midst of it.

I'm struggling tonight. Really struggling. I'm watching Joshua struggle to breathe. I'm watching his heartrate sky rocket. I'm watching his sats sit at 100%. He just had a second surgery 2 days ago that was supposed to correct that. I'm struggling with how this is fair. Why my baby? Why any baby?

My friend Kim's son had his cath today. The cath went well, but now her baby is struggling to get his sats out of the 60's. Why?! Why does this happen?

We moved back to the NICU today. Joshua was supposed to be better. He's been doing so well, and all of a sudden. BAM. He's back to the same old same old.

I wish I could take this from him. I hate watching him suffer. If I could give him my heart, I would. But I'm helpless. There is nothing I can do, but sit and watch.

I'm not sure how much more of this I can take. I'm not sure how much more of this Joshua can take.

I don't think I even have words to accurately describe how frustrated, worried, and angry I am about all of this. I just want my sweet boy to be well. I'm tired of watching him suffer.

I was warned, but had no idea what this was going to be like.

Good Morning Mama!

It is a good morning when you walk into the room and see that he's been extubated!

It's also a good morning when you see that your nurse is your favorite nurse!

However, he's still satting in the 90's. The surgery yesterday was supposed to lower that.

The doctor is going to get him off the Milrinone and hopefully that will lower his sats.

I'm praising God for His goodness and provision, but begging Him to get those sats lowered.

 I really don't want to keep cutting my baby open.

downhill slope

Joshua has been satting right at 100% almost all evening.

The cardiologist told us that if it gets bad enough, they will do the shunt surgery tomorrow instead of Monday. According to the Neo- 100% all evening is probably bad enough to do the surgery tomorrow.

Please pray that Joshua remains stable enough throughout tonight and tomorrow to not have to do emergency surgery tomorrow. (If today were a weekday, they would have done the surgery right away....that's how unstable he is.)

With it being a Sunday, they don't have the regular staff available and the regular equipment that they would need. It would be a bit more risky to have to do it on the whim, on a Sunday.

I have never in my life proclaimed scripture out loud over someone until this week. I have never in my life asked for the Holy Spirit to fill me and to just let His Spirit wash over me like I have this week. I have never completely surrendered something so precious to me until Joshua came. I am once again committing him to the Hands of Jesus. I don't do it because I'm strong. I do it because I have no choice.

Truthfully, I'm terrified that my baby will not come back to me and that my days with him are extremely limited. I'm soaking in every yawn, every snuggle, every diaper change. I'm loving on, praying over, and singing to my child like I never have before. I want him to know how loved he is, not only by me, but by our Heavenly Father. I want him to go into surgery knowing that he is loved beyond measure, so in case he doesn't come out of it at least he knew that he means the world to me. My heart breaks each time I hold him and watch him struggle to breath, each time his lips turn blue, and with every roll of his eyes.

To end this post, I want to share the lyrics of a song that I sing to Joshua every day:

Healer by Hillsong

"You hold my every moment
You calm my raging seas
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

Nothing is impossible for You
Nothing is impossible for You
Nothing is impossible for You


You hold my world in Your hands"

Jesus- You hold my world in Your hands. You hold my precious baby's future in Your hands. I trust in You because You, Lord, are more than enough for me. You are Joshua's Healer. You are good no matter what. I'm clinging to You- Trusting in You, Believing in You, and Loving You. Jesus, You hold my world- my sweet Joshua- in Your hands. I beg you spare his life, but if you chose not to, I trust that You have a plan. I believe that you are more than enough to sustain me and give me Hope. But, God, I beg you for a miracle, I beg you to heal my Joshie, I beg you to give him life here on earth. I love you Lord. Amen

Surgery Monday

We've talked to the cardiologist and the cardiac surgeon today.

We have decided that Joshua is simply not stable enough to make him wait another 2 or 3 weeks for the Glenn.

So, Monday morning Joshua is going to have either a shunt revision or they will clip the shunt.

I am praying that the surgeon will just be able to clip the shunt rather than have to do a shunt revision. The best way to describe a clipping of a shunt is this. Imagine a garden hose that is turned on. Now imagine stepping on that hose. The water still comes in at the same rate, but the water goes out of the hose at a much slower rate. If they clip the shunt, they pretty much are "stepping on the hose." It is a much more minor surgery than having a shunt revision. Bypass usually is not necessary. They will have to open his chest again, but it will not be left open again. In general it is a much easier procedure.

If they have to do a shunt revision, they will have to put him on the bypass machine. It is a much more serious procedure that will require completely taking the current shunt out and replacing it with a brand new one. Either way, they will have to open his chest completely again, but the clipping is less risky than the revision.

We will be transfered back to the PICU at Peyton Manning Children's Hospital tomorrow sometime. I'm hoping to meet with the surgeon one more time to get some of my questions answered.

Please be praying. I'm terrified of losing my baby. I'm clinging to my faith right now more than ever. Sweet Joshua is struggling to breathe and stay comfortable. There is nothing more miserable than for a mama to watch her baby suffer and be completely helpless.

I will update as we know more.

Joshua is struggling

I woke up at 4 to pump. I had a nagging feeling that Joshua was struggling. Against everything that I felt, I convinced myself that I was just stressed out about the kids and Shane being here and that I needed to go back to sleep. I should have called.

Joshua has been breathing extremely hard and fast again. He's dusky, not eating well, his blood gases showed that he's acidotic again, and his O2 sats are extremely high....like at 100%. (for anyone else, that is good, for him it's extremely dangerous.) His stomach risidual is also discolored.

They have stopped feedings, started milrinone (blood pressure medication) again, and now we just have to wait.

He looks dusky to me. He's not acting normal.

I'm waiting for the cardiologist to come see us. Trying not to flash back to monday morning. I'm trying to proclaim God's promises out loud over Joshua.

I will update more later.

Today

Today.....where to start???

How about at yesterday....yesterday we were planning on going home in about a week. Yesterday we were planning on getting a g-tube today. Yesterday we were able to hold sweet Joshua. Yesterday he would make eye contact and was on his last wean of methadone.

Today....

Today he crashed. His heart rate went down to 32. Today I held a blue, unresponsive baby in my arms and panicked. Today any hope of coming home in the next week was taken from me. Today I watched my baby be poked 18 times in hopes of finding a vein that was strong enough for an IV. Today my baby was put back on heavy duty drugs to keep him from pulling the vent out of his mouth.

I am no longer going to say that I am ok. I'm not. I'm grieving all of the progress we've made, and the hopes of going home to my family again. I'm beyond stressed about how we are going to pay for another month or two of kids in full time childcare when I'm not working. I'm feeling helpless, hopeless, and depressed. I feel like I don't have an ounce of energy left in me to take things even minute by minute. I feel like I'm a walking zombie- every ounce of energy, sanity, and hope sucked from me. I've got nothing left to even think.

We are looking at at least another months stay here. We are looking at another withdrawl time. We are looking at the possiblity of another open heart surgery in the next few weeks. We are literally looking at our baby, laying lifeless and hooked up to the very machines that have given me anxiety over the past few weeks of being here. I have another picture of my child etched in my mind that is surely going to haunt my dreams- this time was 10x's worse than the last.

There is so much that I want/need to tell you about today, but just don't have the energy to type out. Just know that things were so bad, that we were told on 2 seperate occasions that by 2 seperate doctors that they have no idea how our child is still alive.

Right now we are going to try to extubate him tomorrow. We will see how he does. We will have blood tests back over the next 24 to 48 hours to see if there is any kind of infection. If there is no infection, the doctors have NO IDEA what caused him to crash and to do so as quickly as he did.

The surgeon and cariologist came to talk to us. They are concerned that Joshua's O2 sats have been too high. After things become more stable, we will look at the possiblity of a shunt revision (he has the largest size shunt in his heart, and they are thinking he needs a size smaller- which they initially tried in the OR but weren't satisfied with the smaller one.) Another option is the possibility of doing the 2nd stage surgery, the Glenn, when he's 2 or 2 1/2 months old instead of at 6 months old. IF we are going to be here another month or two I could at least be ok if I knew that we didn't have to come back in February for his 2nd surgery.

Tonight, I'm numb. I'm exhausted, frustrated, and grieving. I'm on the verge of tears constantly, and I'm crying out to God.

I'm also so so so thankful for your prayers. I know for a fact that is why Joshua is still alive. Jesus has been holding him. Thank you for rallying around us and loving us and supporting us. I am drawing on your words of encouragement, prayers, and messages for my strength.

I will update tomorrow as soon as I can.

A not so good day....

Today was not a good day for Joshua.

I got to the hospital at about 10:00am and Joshua's lips were purple. As soon as the nurse saw me, she ran into the room and explained that at about 9:45 Joshua crashed.

His O2 sats were at 40, his heart rate went from 210 to about 85 in a matter of 2 minutes. Alarms went off but were ignored until the emergency alarm on the nurses phone went off.  Needless to say I was extremely shaken up. Especially after I had walked in to see him purple.

Then, I found out that the reason he crashed was because he was left alone in the room while the nurse went to take care of another baby. She was feeding the other baby and apparently Joshua started to cry. He didn't calm himself down, and because we are in the back corner in a private room instead of the pods, no one heard him. The poor child screamed until he about killed himself. Once I found that out, I was beyond shaken, I was pissed.

It was not the nurse's fault. It's not like she was sitting around on her butt playing solitare while my kid screamed. It's not like she chose to ignore him. She was doing her job. She was taking care of another one of her babies. But it's still not acceptable. I hate the fact that these poor nurses have to take care of 3 critically ill babies at a time. How on earth are they supposed to provide quality care when they are stretched so thin?

I talked to the nurse and she talked to the charge nurse. I was told that we will either be moved out of our private room into the pods (to ensure that other nurses will hear him cry) or we will be assigned to a nurse with just 2 babies. So far, neither has happened.

I'm not sure what I think. I'm pissed that my kid crashed because no one was watching him. I'm pissed that these nurses have to take care of 3 sick babies at a time. I'm pissed that I wasn't here this morning to prevent it.  I'm more determined than ever to get us the heck out of here as quickly as possible.

Joshua is doing better tonight. It took him almost 3 hours for his respiratory rate to finally reach a normal level. That means he burned way more precious calories than he should have just by trying to calm himself down. Not good.

Tomorrow is Joshua's G-tube surgery. He stops feeds at 3am this morning. They will work on getting an IV in him at 6am. Please be praying. After a day like today my nerves are on edge and throwing the surgery on top of it, I'm extremely anxious. I just want it all done and over with.

I'll update tomorrow after the G-tube is placed. Pray for Joshua to continue fighting.

Nightmares

I've been trying to ignore it.

I've been trying to push it to the back of my mind.

But I can't.

This picture, taken right before Joshua crashed the day they closed his chest, haunts my dreams.

Literally.

This picture doesn't even do him justice. He looked 100x's worse in real life.

This was taken, literally, seconds before he crashed.

I didn't know he was crashing, I just knew he looked awful.

Then the alarms started going off.

60's....breathe baby...

50's....come on baby, breathe....

40's....God, please have mercy....PLEASE!!!!

Instantly there were 15 people in the room, the chaplan being called, panic.

I wake up in a cold sweat in the middle of the night.

Almost every night.

I can't get that picture out of my head.

All Things Joshua

Here is an update on all things Joshua!

• He got his chest drain removed today. The only thing he is hooked up to is his heart monitors, pulse ox monitor, and the NG tube (nose feeding tube.) Praise God!!!! :o)
• His O2 Sats have stayed in the mid 80's which is great!
• His heartrate has stayed in the mid 150's- also great!
• He has nursed exceptionally well without pooping out. So excited to be able to nurse- totally was not expecting to be able to!
• He is wearing his first outfit today!
• He tracks and squacks at his mobile and gets mad when he loses sight of the blue swirly one.
• When he's not doped up on methadone, he is seriously the sweetest baby on the face of the earth.
• When he is doped up on the methadone the kid sleeps for 6 hours at a time without moving a muscle.
• He is receiving continuous feeds throughout the day of my milk and a couple feedings are fortified with extra calories. (I'm not sure about the specifics, sorry Kim W.) :o)
• I'm pretty sure he loves his mama but can't wait for some daddy time this weekend!! :o)
• Overall he is doing great!!!!

Love/Hate

Love:


That I have a childhood friend who is gracious enough to let me stay at her place for the duration of our stay in the NICU.

That the only thing Joshua is hooked up to is the NG tube (nose feeding tube), the chest drainage tube, and his heart monitors. The nasal cannula is gone! The drainage tube will be coming out soon so then it will just be the feeding tube and heart monitors!

That I can pick Joshua up anytime I want, and I can provide all of the normal care for him- diaper changes, taking his temperature, comforting him when he cries, etc.

That I have so much milk stored already that they ran out of room to store it at the NICU and I have to store it in my friend’s freezer. (Thank you Elisse for letting me keep it in your freezer…you really are a saint!)

That Shane texted me last night with a Hannah quote: “Dad, my hair is wet. Don’t worry, God will bix (fix) it!”

That I am able to text Shane throughout the day with updates and pictures- keeping him involved with the “care” of Joshua.

That we are in our own private room at the NICU and not out on the main floor in the “pods.” Lot’s more privacy!

That when my baby isn’t high on the methadone, he is alert and bright eyed! Such a sweetie!!!

That God has given me so much comfort through His promises. Whenever worry or fear sneaks up on me, the Holy Spirit has been faithful in reminding me that “I will not take this from you, but it will be manageable.”

Hate:

That Joshua is still on the methadone and has some major moments of being stoned out of his mind.

Being away from Shane, Caleb, and Hannah- missing hearing those funny quotes directly from them

That I have to wear a gown and gloves in Joshua’s NICU room until the MRSA test comes back (standard test for all babies coming from the PICU back to NICU)

Having to leave Joshua in the hands of complete strangers at night.

That Joshua’s “suite buddy” is a screamer.

The way that Joshua turns colors- pale/white to blue to purple to pink

The way that my face has broken out from all of the scratching I’ve done because the hospital makes my face itch.

Missing home….I’ve never been away from home for this long and thinking about it makes me homesick



Continuing to focus on the Loves and not the Hates. Joshua is doing well. That is all that matters. Continue to pray for Joshua’s recovery and that he learns to eat quickly and without problems!

Small Miracles

I'm sitting here with tears in my eyes and a peace that consumes me.

Today has been a day of small miracles. One on top of another.

The ventilator is finally out. After 3 hours of constant gagging, crying, high heart rates and low O2, the vent finally came out. Joshua has done great since having it out. He's been sucking on a pacifier, and is wrapped like a little burrito.

He is now also on only one medication- a blood pressure medication. He was sedated for a while because his gagging was too much and we couldn't get him to calm down, but that has since worn off and he's had hours of good sleep and hours of being awake and happy (as long as he is swaddled and has a paci..).

I also got to hold my baby boy for the first time in over a week. Our nurse was a total advocate for me and Joshua today and made sure that the tube came out and really pushed the doctors to let me hold him. The only way he was able to be calmed down was when I held him. He was fussy all day long, but since I've held him he has been pretty calm since.

And finally, Caleb and Hannah are here. I have missed my other 2 children so much my heart ached. But now they are here and we get to spend the entire weekend together as a family.

Tonight my heart is full and I'm thanking God for His small miracles today.

Mommy-ing has begun.

Poor Joshua has had a rough morning. The poor child hates to be messed with, so anything from changing his diaper to taking his temp is traumatic. He cries (only the silent kind because of the vent) and turns purple when he gets messed with. His blood pressure goes sky high as well as his heart rate. After a while his O2 stats drop and then we really gotta get him to calm down....not an easy task when he's still so connected to so many tubes.

They have taken him off the sedation to get him ready for the removal of his ventilator. Because of that, he is uncomfortable and grouchy. He also now has a NG tube (feeding tube through the nose) down his throat in addition to the breathing tube. He is gagging constantly and is ticked off at anyone who tries to calm him down.

The nurse and I have tried all morning to get him to calm down. Right now he is swaddled, looking like a little baby burrito, and it seems to be helping. I just wish they would take that dang breathing tube out of him. (I know that is what is causing him to be so uncomfortable....) I also wish I was able to do more to comfort him than just hold his hands. (I've not been allowed to hold him since before the surgery.)

It feels good to be mommy-ing him though. The little I can do to help comfort him seems to help somewhat. Holding his hands seems to calm him down so I've been bedside holding his hands all morning.

Pray that his blood gasses come back normal at 1pm so they can start extubating him after that. I really REALLY don't want to have to fight to get that darn tube out of his mouth over the weekend, but if it comes down to it, mama bear will come out and I will fight with them until it happens.

Let the mommy-ing begin!

Another Boring Update (Thankfully!)

We had another day of just waiting around. Joshua's blood pressure is doing great (He's completely off one bp medication). His O2 is great (hanging out right at around 78-81% which is good for a post Norwood HLHS baby.). His heart rate is right around 150 bpm. All perfect!

 He is also being weaned off of his vent. The vent is currently set at 26 (it's hard to explain) but Joshua is breathing at 53. He is doing half of the work himself basically. If his blood gasses come back good (which they have been perfect all day) they will drop the vent down to 20. After he gets below 20 they will turn it off and make sure he can breathe on his own, and then the vent can come out! I'm hoping tomorrow this will happen!

He's also been peeing, but not a ton. Just enough to keep the nurses happy, but not enough to make me happy. He's still a bit swollen in the man part area as well as his feet.

He's moving around a lot, awake for long periods of time, and is just sweet as can be.

Continue to pray that he makes improvements throughout the night and tomorrow. We are so proud of our little fighter and amazed at his strength.

Thank you so much for your continued prayers and support. We firmly believe that Joshua would not be doing as well without all of your love.

Holding His Own

Joshua had a great night despite the fever. He is slowly being weaned off of his heart meds, and he's doing well. They are allowing him to be awake more often since his chest is closed, and because of that we get to spend plenty of precious time talking to him and bonding with him (even though we can't hold him.)

He still have a lot of fluid on his chest and torso, so until that comes off, the vent will stay in. He is receiving lasix continuously through an IV to help him get some of that fluid off. His lungs look clear on the x-ray, so as soon as the fluid comes off, the vent comes off.

He also still has a fever, so they are running some cultures to make sure they are treating him properly. If it comes back positive for infection they will give him antibiotics for 48 hours.

This is my sweet boy this morning. Isn't he a doll?!