Wanting Normalcy

I've found myself struggling again lately.

The grief of losing both Joshua and my dad sneaks up on me and knocks me out. I spend what seems like most mornings a weepy mess, thinking about the things that I want to tell my dad and wondering what life would be like with Joshua around.

I also find myself wondering if I will EVER feel normal again.

Going out in public is still a struggle for me. I've started taking anti anxiety medication to help with it, but it's still extremely hard for me. For some reason, I just feel awkward, anxious, and on edge at the thought of going to big public events. Even going to church is a huge stress on me, and unless Shane isn't working, I don't typically go by myself with the kids. The thought of going by myself with 3 small children overwhelms me.

I grieve what life used to be like for me- carefree and ignorant. My faith was easy because I thought I had it all figured out. I guess, looking back, I feel like I was cocky and didn't even know it. I thought I had it all together.

These days, I just feel like I don't know which way is up. I'm exhausted all the time, unsure of when the grief will hit. Thinking about living with this grief for the rest of my life simply exhausts me.

I know that the season of life that we are in is exhausting in itself. 3 small children, the youngest being 4 months old- I'm still up every 2 or 3 hours at night nursing. That is enough to exhaust anyone. Throw in the grief and I'm not sure how I function some days.

But most of all, I just want my old life back. I want to be able to answer the question "How many children do you have?" with out wondering how I should answer without making the other person feel completely awkward. (I have 4 children- 3 of which are living? I have 3 living children? I have 4 children?) I want to go out in public and not feel like I stick out like a sore thumb. I feel like I should be wearing a large sign on my head that says I have a dead baby and a dead father. I want to be able to go out in public and not have to worry about what will trigger the tears.

As I continue with counseling, I'm working on finding myself again. I'm working on conquering my fears of big social events. I'm working on bettering myself- not only for myself, but for my husband and children as well.

God did not create me to live in a world of fear and anxiety. He did not create me to live in a world of sadness and insecurity. I'm not sure where all of this came from, but I know that it's here and I don't like it.

I guess I just continue to wait and pray for some sense of normalcy to arrive again.

So Many Things...

My lack of blogging has been due to the fact that my life feels extremely out of control lately. I've been wanting to blog, but quite honestly, I'm not sure what to type anymore.

There is a lot going on in my life right now. Some good. Some bad. Some just there and not really important, but adds weight to the burden that I carry day in and day out.

I've thought a lot about what I want to share with you and what I don't want to share with you. This time around, the grief is a lot more private. Or maybe I simply don't have anything new or insightful to say. Either way, the words aren't there. The overwhelming feelings of sadness are very  much present, but the words, both typed and spoken, won't come.

I've thought about sharing with you the feelings of abandonment that my dad's death has brought to my life. He's gone and, with that, his absence has brought a sense of aloneness. My mom has had to make some tough decisions about what to do next, which have selfishly, added to the feelings of abandonment. Whether or not they are valid feelings is a whole other argument that I'm not willing to hash out on my blog or even with spoken words. It's all part of the grief, and one things I learned with my struggles with grief is that the grieving process is so very selfish. I hate that.

I've also thought about sharing with you a little bit about my new purchase. My laptop bit the dust a few weeks ago, and Shane and I have been talking about what we wanted to replace it with. I am pleased, and somewhat embarrassed to announce that we have officially become the proud owners of a brand spanking new MacBook Pro. Yes...that's right...a Mac. We have officially crossed over to the dark side...or I guess more appropriately, the white side....that is shaped like a fruit...Yikes.

I've thought about sharing how I'm doing with my weight loss. Thankfully, that is one area of my life that I have complete control over and I'm taking full advantage! Last week I lost 4.2 pounds and I'm down a total of 12.6 pounds. I'm hoping that at this week's weigh in I will be in the 230's- almost 20 pounds lighter than when I started a month and a half ago! Slowly but surely, this weight will come off! I can't wait!!!

I've thought a lot about writing about Luke, Hannah, and Caleb. They are all growing and changing and learning at remarkable rates. My baby will be 4 months old in a few weeks and is extremely close to rolling over. Hannah will be turning 4 in a few months and amazes me with her witty-ness and humor. And my oldest will be in 1st grade soon- he scored his first basket in Upwards basketball a few weeks ago and has discovered the world of BeyBlades (I'm warning you...don't get your kids hooked....trust me on this one). Time is flying and I'm trying to soak it all in. However, with their growth comes a lingering sadness and constant wonder of what Joshua would be like today. Surely he would be walking and starting to talk at this point. He would be 18 months now. I can't even begin to think about it.

I've also thought about sharing with you the very personal decision to seek professional counseling and also changing my decision about medication. Anxiety has set in and at times, I am fully convinced that one, a couple, or all of my children are dying. So much as a cough or cry have me fully convinced that I need to drop what I'm doing and rush them to the ER. The anxiety is affecting my daily life and I'm finding that I cannot function. I have never been against medication, but wanted to work through all of this without it. However, I'm realizing that it's time to reconsider that. I need to take the edge off so I can become well again. I'm slipping deeper and deeper into a place that I don't want to live and I recognize that it's only going to get worse.

I've thought about writing a post that tells you that there is quite possibly another move in our future. We are looking at homes in the big city just East of us where Shane works. My mom is moving and there is nothing tying us to our current location anymore. It would be nice to be close to my friend Molly and her family (who just so happen to be our kid's best friends), as well as be just minutes away from shopping and Shane's work. Growing up in the Chicago area, we just aren't adjusting well to living in a sleepy little town with only one stop light, a library the size of my bathroom, and a grocery store that charges an arm and a leg for everything.

And finally, I've thought about sharing with you my newest adventure of becoming a professional cutter. My friend, Molly, creates absolutely beautiful baby dolls. She has asked me to come on board with her and help her cut, sew, and keep her company while she works on getting her business off the ground. The kids and I been spending many days at her house helping her create her masterpieces. I'm surprised at how attached I'm becoming to those dolls. I guess after all the hard work, they slowly become a part of you and it's hard to let them go.

By the way, do you remember the post when I shared that she created a Joshua CHD doll that was up for auction? That doll sold for $500 with all the proceeds going towards CHD research. I have no words to describe how beautiful that entire auction process was to me. The winner of the doll has a touching story to tell about Congenital Heart Defects that I will have to share in another blog post.

In all, things have been good, but they have also been kinda crummy. I miss Joshua. I miss my dad. Things are changing and I'm trying my best to adjust. We are praying for God's will to be revealed and trusting Him with our pain. I continue to take one day at a time and try not to beat myself up when I simply can't find the motivation to post here.

Medication- No Thanks.

(this post is not meant to take the place of medical care. It is simply my experience and my choices as I've journeyed through grief. I don't think there is a right or wrong answer to medication- this is simply a post about my journey and my choices.)

As I'm sure you already know, our struggle with Joshua began over a year ago. It started with a hemorrhage while I was pregnant with him. We were waiting for him to die while still inside.

Then came the heart diagnosis. We began grieving all over again and once again began preparing for the worst but hoping for the best.

Then he was born and we lived a 51 day sprint trying to get him well enough to come home. All the while we struggled financially and our family was separated by 150 miles while Shane worked and took care of Caleb and Hannah .

I lived at the NICU for those 51 days, watching babies everywhere fighting for their lives. We watched our child's heart beating inside his chest for 5 days, I found him blue and almost lifeless the first time he crashed. I felt deep down inside (although I didn't consciously know what for) that something was not right and instinctively fought to be closer to him the last week he was alive. (I became an evil crazy mother who would not leave the poor social worker and nurses alone and probably made their lives hell that week.)

All through those struggles, I consciously chose to do it without any sort of medication for depression or anxiety.

Now hear me out, I'm not against medication- not at all. I was open to it if I truly felt like I needed it. But during that time, and into the present, I have not felt like I have needed it.

Every doctors appointment that I went to, every interaction with doctors, my parents, and even close friends of mine really encouraged me to get on some sort of medication for anxiety and depression. All I had to say was "I need it" and it was at my disposal.

After Joshua died, things got really dark. I literally laid on the couch for the month of October. The pain was so great that I couldn't function. My darkest days came when I started having flashbacks. I believe I suffered, and still do, from a mild form of PTSD (post traumatic stress disorder) from the trauma of Joshua's situation. But the flashbacks were the worst. (there are still triggers that I have to stay away from- that's a topic for a whole other post)

When I experienced flashbacks, I was literally back in the NICU the morning Joshua died. (warning- clicking on that link takes you to a post that may be difficult for some to read) During a flashback, I had no idea that Joshua was going to die. It was just a normal day for me. And then it would come. The monitors, the panic, his tiny last breath. I relived it all.

I experienced his death 3 times- not including the actual time he died. I relived that experience 3 times without knowing it was going to happen.

The flashbacks were enough to make me seriously consider medication, but I chose, once again, to say no and try to work it out on my own.

Let me explain my decision to not take medication. I want to be very clear that I don't have a problem with medication and I do believe that sometimes it is necessary to continue living a normal life. Depression runs in our family, and I have seen family members quality of life greatly improved because of anti depression and anxiety medication. I believe that the decision to take medication is a personal one to be made between the individual and their doctor.

I chose not to take medication because I felt strongly that I needed to allow myself to feel whatever feelings came along with the grief. I didn't want to numb or take the edge off of my feelings- no matter how dark they became (as long as I was not putting myself or my children or husband at physical risk).

My biggest fear was that I wouldn't allow myself to feel what I needed to feel and I wouldn't deal with those feelings in a healthy way. I felt that if I took the edge off of those feelings, that they were eventually going to come and when they did, it would be worse than if I had just dealt with it to begin with. I also felt that I had enough perspective on my feelings that I could truly tell if and when I started going to a dark place that I just couldn't get myself out of.

Taking this journey without medication has been one of the most difficult processes that I have ever experienced. I've had to convince myself and others that my experiences and emotions are normal for what I have been through and have yet to deal with. I've had many moments when I have felt like I've completely lost my dang mind, and it's been in those moments that God has reached down and brought comfort and healing in ways that only He can. Going through this experience without any sort of medication has forced me to turn to God in ways that I never have had to do before.


There are still days that I feel like I've completely lost my mind. There are still days that I have to convince myself that what I'm experiencing is normal and healthy. Yet there are other days that I am so thankful that I have said "No Thanks" to medication.

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?!

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.

Fierce and Fiesty Mama Bear

Satan sure does know how to discourage me and get to me in my weakest moments. He knows how to use those tiny slivers of doubt and fear to really make me question myself and my abilities.

It's been a rough few days of trying to be an advocate for Joshua. Part of that was with finding a place to stay so I can be close by, the other part of it was fighting with doctors and nurses to make it known that something was not right with my little man and he needed attention.

I have reached a point where I wonder if I am exaggerating my worries about Joshua or if they are really valid. I've been second guessing myself and not wanting to become one of "those" mothers that is never happy with her child's care. (I'm completely satisfied with our care here, I just try to keep on top of it!) I sometimes wonder if I have become too close to his care and am trying to demand things that are not necessarily what is really needed.


For example, I came in this morning and noticed that Joshua's sats were all over the place, his heart rate was elevated, and he was breathing hard. I immediately started flashing back to last Monday morning when he crashed. My mind went to the worst place possible.

After I watched the monitors for a few minutes and things were not calming down, I talked to the doctor about my concerns. He came and checked Joshua out and said that he didn't think it was anything cardiac related. He left the room and I still was not satisfied with that answer and could tell something was off for Joshua. 

So, I expressed my concerns to the nurse who then went and talked to the doctor, who then came back in again. Once again, the doctor said, he thought maybe it was a bit of withdrawl and would give him a dose of morphine. I felt better about that.

After the morphine was given, he was still breathing heavy and his heart rate was still up. I asked if they could call cardiology just for my own peace of mind. The doctor said cardiology would be in later today and they would stop by. By this time, I started second guessing myself and my pushy-ness. I started wondering if I was making a mountain out of a mole hill.

Thankfully, the cardiologist stopped in first thing after he got here. He took one listen to Joshua and listened to my concerns and agreed that something was not right. FINALLY, I started feeling like less of a pshycho and was glad that he agreed with me. He ordered a chest x-ray and blood gasses. He validated my feelings and told me that he appreciates a mother who is a bit more on the cautious side and that I am doing a good job.

It was at that point that I realized Satan had snuck in. He is trying to break me down at every angle and make me second guess myself and my instincts. He knows that I don't want to be known as the mom who raises hell for every little thing, and he knows what to do to make me feel that way. I don't ever intend to piss people off, to annoy them to no end, or to hurt feelings, I'm simply a concerned mother who would do ANYTHING to ensure that my medically fragile and unstable child is alright. I know Joshua better than anyone else, and I will fight for what he needs- whether that means a place for me to stay that is close by, pushing for medicine, or fighting for tests to be done to rule things out. I don't want to be "that" mom, but sometimes I have to be.

I'm praying for God to protect my mind- to not allow satan to have that stronghold on me. I'm praying for God to continue to guide me as I nagivate this brand new medical world in which I have no prior experience in. I pray for the wisdom to know what is a true concern and what is not. I'm praying for peace and rest for my weary soul. And I'm praying for all of Joshua's caretakers to understand that I don't push just to be a pain, rather than to understand that I am just a fierce and fiesty mama bear trying to protect her young.

Surgery Update

Joshua's surgery was (so far) a success.

He was in surgery for just over an hour (i think...i didn't really pay close attention to the time....)

The doctor was able to just clip the shunt rather than have to do a complete revision. That is great news because he did not have to go on the bypass machine.

The surgeon is fairly sure that this is exactly what he needed and that the shunt is the correct size now.

Currently, he is still intubated (on the ventilator). He is using 70% oxygen to help him breathe. We are waiting for him to start breathing on his own over what the vent is doing, then they will talk about extubating him. Right now he is in a bit of pain- we can tell by the high blood pressures and lower O2 sats. His sats have been in the mid 70's (right where doctor wants them) but when he's in pain and needs more pain meds his sats drop to the low 60's. He is off the Fentynal drip for pain and strictly on morphine which seems to be keeping him comfortable.

In all, we are just now waiting to see what the next 24 critical hours bring. He's doing great right now, but as we have learned quickly, what is good one minute turns bad the next. If everything continues to go smoothly, Shane will go home tomorrow night and hopefully we will be back at the NICU sometime later this week.

(We will still have to come back in another 2 to 4 months to have the 2nd stage surgery. We still have an extremely long road ahead of us for the next few years.)

Once again, thank you so much for all of your prayers. I was truly at peace this morning and I know it was because of the prayers of everyone lifting us up.

I'll keep you updated as we know more.

Our snuggle bug this afternoon recovering from surgery.

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.

Seizure Stuff

Joshua's MRI thankfully came back normal. I am praising God that there is no brain damage. I feel like I can actually breathe knowing that my little man is ok.

But, we still have the mystery of why "little Joshy," as his night nurse calls him, had the seizures.

He had 3 last night. 1 at about 8:15pm, one at 9:00pm, and another at 1:00am. The first 2 only last 1-2 minutes. The 3rd lasted for 45 minutes. (I had been told by the morning nurse that it was an hour and a half, but from the night nurse who was there last night told me that it was only 45 minutes.) They gave him a huge bolus dose of a high powered anti convulsion medication to stop him from seizing.

That dose has lasted almost 12 hours. Thankfully today he has not had any seizures (due to the drugs still being in his system). The drugs that they gave him last night have made Mr. Joshua sleep all. day. long. He literally slept from 8am to 5:30pm without moving a muscle. I didn't hold him much during the day because I didn't want to wake him. I figured his little body has gone through so much over the past few days, I just wanted him to rest. So I watched him, prayed for him, and waited for him to wake up. (I will be honest in the fact that I also had quite a few break downs in between.)

The neurologist came in and talked with me today. He is going to start little Joshy (that name has kinda stuck with me) on anti seizure medication. He thinks the seizures could have been caused by his body trying to readjust and recooperate from the crash on Monday, OR he could have a seizure disorder. Either way, he put him on the anti seizure medication for 6 months. Once Joshy is 6 months old, we will try to take him off of the medication and see how he does.

I'm so thankful that there is no brain damage. I'm praising God for his provision in Joshua's life. I'm praising Him for the peace that He brought to me this afternoon. I'm praising him for the medical staff that is here caring for him and doing such an amazing job of keeping him safe.

I'm going to bed tonight with hope for my sweet boy!

Seizures and plan of care

Joshua started having seizures tonight. The first one they let slide, but when he had a 2nd one, the nurse and doctors became very concerned.

From what I've been told there could be 3 possible causes to his seizures.

1. Meningitis- they did a spinal tap. Results will be back tonight. I'm highly doubting it will be meningitis.

2. Withdrawl- since he was on some major doses of heavy duty drugs yesteday and into this morning to keep him from pulling the vent out of his mouth, there is a small possibility that he could just be going through withdrawl. they gave him a breakthrough dose of morphine and another dose of methedone. So far, since he was given both, he has not had another seizure. I'm earnestly praying that this is the cause of the seizures.

3. Brain damage- there is a chance that when Joshua crashed on Monday, that his brain was deprived of oxygen. They are going to schedule an MRI first thing in the morning to check for brain damage. Hopefully we will have those results back by the end of the day tomorrow. Of course, brain damage is permenant.

I haven't had time to udpate also about our newest plan of care for Joshua. His surgeon is NOT at all happy with his O2 sats being as high as they are. For right now, they are not going to allow Joshua to have any PO feeds (feeds by mouth). They are going to "fatten him up" and get him ready for the Glenn (the 2nd stage surgery that was supposed to happen in February). They want to do the Glenn in the next 2-3 weeks. They are going to put him on breastmilk fortified with a formula that is already pre-digested so he doesn't even have to use calories to digest his food. We need him to grow as much as possible in the next few weeks. The G-tube has been cancelled until after his next open heart surgery.

I am literally hanging on by a thread at this point. I feel like every last ounce of sanity has been sucked out of me and I'm going crazy. I'm so exhausted that I feel like I'm living in some sort of crazy dream and that I'm going to wake up soon and it's going to be Monday morning and Joshua is going to go in for his G-tube and that we will be home in a week.

I've become paranoid of every cry, every movement, every twitch. I panic at every alarm that goes off, and every doctor that walks in the room. I'm in an ugly place mentally, emotionally, and physically. I don't know how to pray other than begging for the Holy Spirit to intercede on my behalf. I pray over and cry over Joshua every time I hold him.

Right now, I'm going to try to get some sleep. I'm sure it won't be long before another nightmare comes and interrupts my slumber and I awake to panic.

I will update as I know more. I truly appreciate your prayers. You are carrying my burden and I truly believe that is how I am still somewhat functioning and how Joshua is still here with us. Thank you.

Joshua Update Again!

Dr. B, our neonatologist, just came in. We have a new game plan! (I was teasing him that he secretly is hiding from me because I keep harassing him! ha!)

The results came back from the upper GI that Joshua had this morning. Everything looks perfectly normal except he has some reflux, which is to be expected. The reflux has caused him some inflamation so they are going to start him on some reflux medication. Hopefully that will help with some of the wretched puking.

He also talked to cardiology and they cleared Joshua for a G-tube. Now we are just waiting to be scheduled. Dr. B is working on getting us scheduled as we speak. I am anticipating that we will get the g-tube sometime later this week (like Friday-ish) or early to middle of next week. We will hopefully be going home sometime the week of the 27th. (assuming there are no major complications with the g-tube surgery and recovery.)

In other news, Joshua and I were asked to do a photoshoot tomorrow morning for St. Vincent's website. (although I'm not even sure for what webpage!!!) I'm not sure of the details except for the fact that I have to be here by 7:30am and I have to wear solid colors. I guess that means I have to actually get up and take some time doing my hair and picking out what I will wear. They probably have gotten tired of looking at me looking like a hot mess all the time and thought that this would actually make me do something with myself for once! haha!

And finally, I just 2 short days, my precious baby boy will be 1 month old. Amazing huh?!

Watch Out For Mama Bear!

So Mama Bear has arrived. I'm not playing around anymore. I'm tired of waiting, I'm tired of being passive. I'm ready to go home.

Joshua has been tiring out and puking after every feeding. He's been consistent in the fact that he drinks about a half a bottle and then falls asleep. His little body just can't handle more than that. Then the puking starts.

He's on a continuous feed that pumps milk into his tummy for 3 hours at a time. Then it's turned off for an hour, and then he PO feeds (feeds by mouth.) Then the pump is turned back on for 3 hours and the cycle continues. He PO feeds every 4 hours. I'm tired of it.

I want them to get him off of the continuous feed and get him strictly on PO feeds or tube feeds. (If he doesn't take his full 55ml's of milk then we tube feed him the rest.) There really is no reason that he can't be on stricly PO feeds.

So I told my nurse today (in the nicest and most direct way possible) that I just want us to go home. I want to get the G-tube, learn how to feed and give him his meds, and GO HOME! She completely agreed with me. She also agrees that there is no reason for the continuous feeds. She went immediately to talk to the doctor. He is coming in very shortly to talk about a new plan of care.

I'm no longer going to sit here and wait. We need to get more agressive with this feeding stuff or we will be here another 2 months. I'm NOT going to be here that long!

I feel like we have been doing this for long enough that we know what Joshua can and cannot handle. We have a decent enough routine established, and we know what issues we are dealing with.

We have 6 more days of methedone weaning. The surgery schedule for a G-tube and circumcision is about 6 or 7 days out from now. After the G-tube is place, it will be another 7 days or so before we can go home. That already puts us at 2 weeks out. Let's get this ball rolling. Get us on that surgery schedule and one step closer to getting home.

Mama Bear has arrived and we are getting out of here. (Is that fierce and fiesty enough for ya?!)

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!

Not sure what to think...

This weekend has been exhausting, wonderful, and has stretched me thin.

Shane brought the kids out this weekend. This was the first time I have seen them in just over a week. I've missed them to the point that my heart ached, and it was so good to see them run to me and feel their tiny little arms around me- loving me. We got to spend some quality time together before things got a bit rough for Joshua.

Joshua started having some major withdrawl symptoms from the pain medicaitons he was on. He started shaking, sneezing, and crying almost uncontrollably- which then causes his O2 to drop and his heart rate and blood pressure to raise which results in him turning purple. He also developed a low grade fever. My poor baby was miserable.

Then came the hard part. Choosing between children. This has emotionally exhausted me. I felt guilty being at the hospital trying to comfort Joshua, and I felt guilty being away from the hospital while my newborn baby was miserable and alone in his room. I was miserable at the hospital and miserable away from the hospital. It was a no win situation.

Shane and the kids are going home today. I'm trying to spend as much time with them as I can, and I'm trying (REALLY TRYING....) not to feel guilty about it. I know I can't do it all but I don't want any of my babies to suffer because of it.

In other news, Joshua is going back to the NICU tomorrow (basically the step down unit to work on feedings.) He has been getting feedings through the NG tube (nose feeding tube) for almost 24 hours. He's doing great on it and they are going to up his feedings today. He's also not on any medications except for tylenol, baby asprin, and methedone to help with the withdrawl. He's doing great and is such a sweet baby. If only we can get him through this withdrawl stuff.

EDIT:

ok, so I lied! But not on purpose! :o) I didn't realize that Joshua is in fact on other medications. (I knew that was too good to be true!!!) He is on lasix and captopril. The Captopril is for his heart and the lasix is to help keep the fluid off of him and keep him out of heart failure. He will be on both of those two as well as the baby asprin until his next surgery and probably after that as well.

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!

ET Phone Home

Complete with red glowing finger.

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.

Pray for Pee Day!

I am declaring today the official Pray for Pee Day.

Joshua is doing great! He is officially weaned off of one heart med and has been for over 24 hours. His heart rate is great, his blood gas is great, his O2 saturation is great, as well as his heart rate. They have taken out the catheter and will measure his pee by the weight of his diaper. They are starting to wean him off the ventilator but that will be a few days before it is completely off. They have taken the somanetics monitors off of his head and belly that measures the amount of fluid in both places.

The only thing is that the child needs to pee! His little belly, man parts, legs, feet are still so swollen. The vent won't come completely out until the fluid is off. He is on a constant drip of Lasix and they are now adding a second diuretic (I have no idea how to spell half of this stuff, so just pretend like I'm edumacated! ha!) So say a special prayer for my child to pee and pee A LOT!