A Week Spent in the CICU

The night Anthony and I spent in the sleep pods (on Friday, April 5th) was probably the longest night of our lives. We were exhausted, emotionally drained, and left wondering how Josiah would do during the night. According to Anthony, the sleep pod we ended up getting that night was much bigger than the one that he and his sister stayed in the night Josiah was born. This pod had a twin bed as well as a pull out chair. To add a little humor to the story, I will tell you that Anthony and I both slept on the twin bed…hah! What a sight. For one, the bed had almost zero support. When Anthony and I both got in we immediately rolled to the middle (or should I say the 1 inch that separated us). I’m sure it would have been a sight to see, and it did kind of give us a little laugh for a split second. Anyhow, we spent the entire night hoping and praying we did not hear either of our phones ring. Any family that has had a child spend any time in the CI, knows how anxious you get any time your phone rings and it's from a “404-785-….” number. A phone call usually does not mean good news. Thankfully we did not receive any calls that night.
The next morning, I called to check on Josiah and to see if rounds had started. Since it was Saturday, rounds didn’t get started until later, so Anthony and I headed down to the cafeteria to grab some breakfast. As soon as we were allowed back, Anthony and I went to go visit our little man.

Mr. Josiah with his monkey

Looking back at our stay in the CICU when Josiah was first born, I have to say it was actually a little easier to see him intubated, sedated, etc. I’ll tell you why…the first time we were there, I didn’t really “know” Josiah. I didn’t know what he really liked or didn’t like, the way he liked to be held in order to calm him down, or how to bounce him when he had gas…I didn’t know any of those little things. This time, I knew every one and couldn’t do any of them in order to comfort him. He was much more active and liked to grab things, and therefore he had to have little wrist restraints put on so he didn’t try to yank out his breathing tube. Talk about heart wrenching…Thankfully he was kept pretty sleepy and as long as I was beside his bed then I could take them off.

Josiah ended up being intubated for a total of about 3 days. It wasn’t until the 8th, that Josiah was extubated. I remember mom and I leaving for lunch that Monday (Josiah had been awake a good bit of the time and was HATING the breathing tube) and coming back to Breanna (his nurse) and Susie (his respiratory therapist) standing next to each other and smiling like they were up to something. It took me a couple of seconds until I realized that Susie had pulled his tube! What a great feeling =) Not only did I know Josiah had to be feeling much better, but it also meant I could hold my little guy!

Before getting extubated..

 

…and after!

Over the next several days there was much discussion as to why the doctors thought Josiah’s heart had started to “pooped-out” on him and what the road ahead might look like. There was talk about potentially going to the cath lab to rule out a possible reason for decreased heart function, talk about potentially needing and being listed on the heart transplant list, the possibility of performing the Glenn early, and talk about possibly going home if Josiah could bounce back in order to grow a little bigger. Although, for the time being all we could really do was play a the waiting game to see how Josiah would do.

Unfortunately I was not as good about keeping up with what happened every single day like I was during out first stay, but I did take pictures and I do know that we ended up staying in the CICU for a week. After being unexpectedly admitted into the CICU on April 5th, Josiah was moved to the Stepdown Unit on April 14th. Most of the time this move means you are a step closer to being able to go home, and of course that’s what we were thinking…boy how things change…

Best feeling ever! And, this is the day we switched to a Nuk paci

Josiah loves his daddy!!

This picture makes me smile every time

“Many are the plans in a person’s heart,
but it is the Lord’s purpose that prevails.”~Proverbs 19:21

It’s Been a While…Like 5 Months!

I’m sure most of you we're probably thinking we fell off the face of the earth…but we didn’t =) It has however, been a heck of a few (several) months. I had to go back and see what the last thing I even wrote was about. If you thought those 24 days at Egleston were a journey, hold on to your seats as I attempt to catch you all up with what’s been going on with our family since the beginning of April…

I should probably start with a post about what happened after Josiah’s Norwood surgery, as I said it would require a separate post. However, I have all of that written down and I can go back and write about it a little later. Instead I’m going to make this post to try and explain why it’s taken me almost 5 months to update the blog.

Rewind all the way back to the end of March. The weather was still cold out and Josiah had just turned 2 months old. Things at home were going pretty well. Josiah was taking half of an ounce of milk by bottle about 4 times a day and LOVED it. We had about 1-2 doctors appointments a week, and were just enjoying life at home (minus being hooked up to an IV stand with a feeding pump 24/7….little did I know how much I would miss that IV stand with ONLY the feeding pump on it).

Our little heart warrior

On March 28th, Josiah had his 2 month old check-up with his first set of vaccines. I’ll never forget both the doctor and the nurse asking if I came prepared for him to get shots. I had to laugh and say to them, that if I can handle seeing my child’s chest open and literally see his heart beating, then I think I can handle watching him get shots =). After a great check-up we headed home to get ready to enjoy the weekend. Not that we had much to look forward to (except getting to spend time as a family) because we didn’t take Josiah anywhere once we got home from the hospital. With it being flu season and cold outside, we did not want to risk him getting sick.

Starting some time over the weekend I noticed Josiah only wanted to take a little over half of his bottle. I found it kind of strange seeing as how he loved his bottle, so I mentioned it to his home nurse when she came to check on him Monday morning. She said she figured he probably just wasn’t very hungry (since he was on feeds 24 hours a day). It made sense so I figured I would just keep trying and mention it to Dr. Vidilefsky at our appointment the next day.

The rest of the day Josiah continued to only want about half of his bottle. So, on Tuesday I mentioned it to Dr. V and he believed that Josiah was probably not as hungry either (plus it’s a lot of work for heart babies to suck, swallow, and breath). Josiah’s appointment went well and the only thing we decided to do was try to slowly begin to move Josiah on to a bolus feeding schedule (where he would eat for a while and then be able to take a break, eat for a while and then take a break, etc.) We began this feeding schedule on Wednesday and Josiah did wonderful!! Throughout the day Josiah would eat for 2 hours and then take an hour break and then he would be back on continuous feeds throughout the night. Thursday morning around 6:30 am Anthony came out to the living room to tell me Josiah had puked all over him. This didn’t really surprise me since Josiah did have some reflux issues and was pretty volume sensitive (and he had just gotten his 6am meds). The rest of the day was fine without any spitting up so we continued with our new eating schedule.

Friday morning was a different story. I woke up to Josiah not just puking, but projectile vomiting, completely emptying his stomach. There was no going back to sleep after that so we got all cleaned up and started our day. Around 9:30am I had Josiah in his bouncy seat (that I had just put together the night before). He loved it and enjoyed looking at the toys hanging from it. About 10 minutes later Josiah had another big vomit. Now, before we were discharged from Egleston, we went through a specific one-on-one shunt teaching discharge class. I am SO thankful for this class as we learned when it was important to call if certain things happened. Throwing up twice in 24 hours was one of those times to call. I picked up the phone and called Dr. V. After talking to him, he thought it would be a good idea to take Josiah down to the emergency room at Egleston in order to get a stomach ultrasound done to rule out any stomach issues. By this time my parents had made it to the house (just like they did every day during the week to help). So, I hopped in the shower, got ready and we were in the car about 30 minutes later. We got about 10 minutes down the road and Josiah began to puke again. By this time it was starting to concern me as he didn’t really have much left to throw up and it’s not a good thing for shunt babies to become dehydrated. I called Dr. V’s office back and asked if he thought we should stop off at Gwinnett Medical since we were almost to the exit. Since they would end up taking Josiah down to Egleston anyway, Dr. V said to try and make it to Egleston, but if his color changed or if we felt worried, then to pull over and call 911. We made it safely to Egleston, but not without one or two more times of puking, well by this point dry heaving/throwing up stomach bile.

Taken about 10 minutes before he threw up for a second time the morning of April 5th

Once we made it into the emergency room, I checked in Josiah and told them he was a cardiac shunt patient. We were told that if we ever had to come back to the ER with Josiah that he would be taken back almost immediately because he had a shunt, and boy were they right. I don’t even think we sat down for 30 seconds when they called us back to take us to a room. After getting to room 18, it took about another 10 minutes and we were greeted by 2 of the doctors from the CICU, Dr. Chinani and George. After taking a listen to Josiah and noticing that he looked like he was breathing a little harder than normal they said that they were going to admit him to the CSU and probably get an echo done to see how his heart and shunt looked. Another 30 minutes went by until we were taken to a room in the Cardiac Stepdown and by that time they had started Josiah on some Pedialyte.

Going back to a room in the CSU brought back a rush of memories from the 2 days we spent there before we were sent home after Josiah’s Norwood operation. It was the first place I had spent the night by myself with my baby, the place where I learned to become Josiah’s “nurse”, and where I almost had a nervous breakdown because of how many things I had to remember. It was nice to be greeted by a familiar face as well. I ended up going back about twice throughout the day to talk to this specific nurse to just “let it all out”. I am beyond thankful for this lady (I hope she knows who she is if she is reading this…you might remember putting our Medela bottles and meds in the fridge only to find out later someone had thrown them away. No worries though, Josiah refuses to take a bottle now anyway, lol love you friend!).

Waiting on our echo in the CSU

By this time, Josiah was half naked, in his diaper (the way he prefers to be actually) and they had hooked him up to the heart monitor and pulse ox. You could definitely tell he wasn’t feeling too great. A short time later a lady came by with an echo machine and began to take some pictures and video of Josiah’s heart. Before she was finished George came by to take a look at the echo himself (if my memory is correct I believe Chinani might have come back to take a look at the echo as well). I was not prepared to hear what he had to say after the echo was finished. George began to explain to me that Josiah’s heart function looked to have significantly decreased and that they were pretty worried about him. Even more worried because the echo didn’t show a specific reason as to why it had decreased so much.

He went on to tell me they were going to admit Josiah to the Cardiac Intensive Care unit in order to keep an eye in him and to more than likely put in a central line to start him on some milrinone. What??? I thought we were just coming in for an ultrasound of his stomach..not get readmitted to the CICU. Josiah seemed perfectly fine this morning besides throwing up, although by now he did seem a little puny. A million questions began to flood my mind and George was patient enough to listen and answer each one. I wish I could remember everything he told me in those few moments, but all I can remember was it took all that I had to hold back my tears. Actually I don’t think I was successful at that, I’m pretty sure one of the nurses handed me a box of tissues. After George left, I immediately called Anthony to let him know what was going on. For all he knew, I was probably calling him to let him know we were on our way home. As soon as he answered I burst into tears…again I can’t recall what exactly was mentioned over the phone, all I know is that I told him Josiah wasn’t doing very well, he was being admitted to the CICU, and he should probably try and come down as soon as he could.

Rather than pushing Josiah in a crib back to the CICU, I carried him and placed him in the crib in bed space 2114. He didn’t last too long until he started crying again, so I picked him up. I remember looking over and seeing one of our second mommies aka Breanna coming to see us. She asked what in the world we were doing back and I wish I could have told her we were only visiting. I explained what little I knew and let her hold him for a bit. A few minutes later Dr. Wolfe came up with Dr. Hurst and said that they were going to try and get central access on Josiah and that I would have to leave while they did this. By this time Josiah was not a happy camper and was pretty much screaming/crying. I laid him down in the crib and they proceeded to give him a shot of Ketamine in his leg in order to calm him down and slightly sedate him. I remember his crying going from a scream to more of a soft whine, and when I looked back over they had taped him down to a little board thing in order to keep him from moving, that was when I knew I needed to go…Before I left, I asked when they thought I would be able to come back to see him. The nurse told me to call in about 30-45 minutes to check and make sure I was ok to head back.

I headed back to the waiting room that is shared by both the CICU and the NICU to find my parents. We waited and Anthony arrived about 30 minutes later. I ended up calling back to the CICU to see how things were going and if we would be ok to come back and see Josiah. The secretary transferred me to our nurse and I immediately knew  something wasn’t right when she answered the phone. She began by saying “well, things didn’t go as we planned….”. She went on to tell me that while they were trying to put in a central line, Josiah’s breathing and heart rate began to drop. He ended up coding, doing compressions on him for about 45 seconds and they ended up having to intubate him…WHAT!?!? I think I was in too much shock to hear the rest. I asked when we could come see him and she told me that we should be alright to come back in about 15 minutes. And that’s exactly what we did. For 15 minutes we sat in the waiting room waiting anxiously until we could go back to see our boy, not too many words were spoken.

How Mr. Josiah looked when we got to go back and see him

We spent a little while with Josiah once we were allowed back, but unfortunately it was almost time for shift change and we couldn’t stay for too awful long. The doctors and nurse explained that they were pretty worried about Josiah. His nurse suggested that we stay close by that night (of course we weren’t going anywhere). After kissing Josiah, we once again headed back to the waiting room. We reserved a pod room for that night and Anthony and I both went back to try and gather ourselves and make sense as to what had just gone on the past few hours. I hadn’t pumped for almost 7 hours and somehow brought myself to do so through the tears that didn’t seem to go away. About 30 minutes later there was a knock at our door. Anthony opened it and there was George. We invited him in and he took a “seat” on the little night stand table. He began by saying how much bigger...and I use that term loosely…our room was than the room they get to sleep in while they are on call. I appreciated him trying to lighten the mood and mustered up a little laugh. We had always enjoyed talking to George the first time we were at Egleston, but that night I think it’s safe to say he became my favorite fellow in the CICU. He had just gotten off and wanted to stop by to check on us, see how we were doing, and to answer any questions we might have. Did I mention he had just spent 30 min. in the waiting room talking to my parents about everything that was going on? I could go on and on about how soft spoken, kind, and patient that man is, but you’d probably get tired of that.

Anthony and I went to visit Josiah one more time before we tried to get some sleep that night. Of course they were keeping him pretty well drugged up and he just slept the whole time. We ended up making our way back to our sleeping pod and talked a bit about what this whole day had consisted of. Never in a million years would I have thought this was going to happen to Josiah. Not after he had done SOO incredibly well from the time he was born and all the way through the placing of his stent and his Norwood operation. But it had happened. His heart function had severely decreased, and we were left wondering whether or not he would make it through the night.

Little did I know what kind of a roller coaster ride we were in for…

24 Days at Egleston

To recap: Josiah was born with a severe heart defect called hypoplastic left heart syndrome his left ventricle never fully developed) as well as a restrictive atrial septum. He will have a total of 3 open heart surgeries in order to reroute how blood flows to and from his heart (essentially the right side of his heart will do all of the work). Unfortunately these surgeries do not cure him, but they will allow his heart to function in a new way.

I was pretty sure once Josiah arrived I wouldn't have much time to keep the blog updated, and I was right! The little stinker keeps me busy, but that's perfectly alright =) I wanted to be able to keep up with different things that went on throughtout Josiah's hospital journey so I ended up jotting importants things down everyday in bullet form (because I knew there would be no way I would be able to remember specific things from 24 days worth of being at Egleston). I had made a binder for Josiah before he was born. I had planned on (and now do) keep all of his medical information in it and it goes with us EVERYWHERE. It has become my lifesaver and has kept us organized. However, before we came home I used it as my little journal and that's where I kept all of my daily updates. Rather than posting 24 different posts about each day, I've decided to include all 24 days in this post in kind of a diary format. So here it goes...you might want to grab a snack, this might take a while!

January 23-
Josiah Truitt Barfield made is debut at 6:14 pm weighing 7 lbs. 6 oz. and was 20 1/2 in. long. He was transported via ambulance to Egleston somewhere around 7:00pm.



On his way to Egleston!

January 24-
Josiah had a cath procedure done to place a stent in his heart in order to open up the PFO to allow blood to flow between his left and right atrium. The stent will hopefully improve the blood flow and allow his lungs to improve.

The day after his stent was placed

January 25-
Josiah had his best chest x-ray since we've been here! He is still on the ventilator but they are beginning to turn it down (started at 22 (breaths the machine was taking for him) and was down to 14 when we left). They started Josiah on a good bit of meds:
-Lasix (a diuretic to make help him pee to get the fluid off of his lungs)
-Dopamine (to raise his blood pressure)
-Milrinone (to help the squeeze of his heart)
-Pain meds
Anthony and I both got to change Josiah's diaper for the first time! And, I got the pleasure of being peed on =)


Daddy and Josiah

January 26-
Josiah is still on the vent but they started C-pap trials (where they turn off the vent and let Josiah breath on his own). He was still too groggy for them to feel comfortable extubating him, but he did well.

One of our favorite nurses made this sign for Josiah!
You can also see the first of 3 strings of beads
Josiah received while he was at Egleston!

January 27-
Josiah was EXTUBATED today!! Finally no more breathing tube until surgery! We finally got to hear some squeaks and tiny little cries. We also began working with him on taking a pacifier so he can keep up his sucking reflex. He wasn't too sure about having it in his mouth at the beginning of the day but was doing much better by evening with it!

Look at that round little face!

January 28-
They put Josiah under the bili lights at the end of the day yesterday because his bilirubin levels were somewhat high. His count had gone down slightly from 14.7 to 14.1 so they are keeping them on him again today. He's been a little fussy (probably because he's beginning to realize he's hungry and having those stinkin lights on him 24/7 doesn't help either). Josiah's night nurse got the evening round doctors to write and order for me to hold him!! First time I've been able to hold my baby!!!

Should have brought our own shades for thhe day!

Best feeling to finally be able to hold him!

January 29-
They were able to take him off of the bili lights finally! He is still on the same meds (milrinone, prostaglandins, lasix, and heparin). He had a VERY good day and daddy even got to hold him! We both changed diapers as well =) Starting to suck on his paci great (he likes to hold it in by himself).

My two guys! Love this picture!!

January 30-
***HAPPY 1 WEEK OLD, JOSIAH!***
He had another good night, surgery is scheduled for tomorrow morning!

"May the God of hope fill you with all joy and peace as you trust in him,

so that you may overflow with hope by the power of the Holy Spirit"

~Romans 15:13

Resting up before our big day tomorrow!

January 31-

Surgery day! This requires a separate blog post!

February 1-

Today was a good day. He also had a good night once they got the bleeding and his blood pressure under control (around 2:00am). He is peeing good and his chest tubes are still draining a little bit. They increased his sedation and pain medication so he would sleep and not be so fidgety. He doesn't look nearly as swollen as I was thinking he would (nurses said they tend to get more swollen and it peaks at around 12 hours after surgery). His chest x-ray looked a little hazy/wet, but they said that is to be expected after major surgery. We will be out of the critical 24 hours after surgery period around 7:00pm tonight.

*We've chosen not to post any pictures of Josiah right after his surgery. It was hard for us to see, so we can only imagine what it would be like for you all to look at. I will tell you that he did come back with his chest open (as do the majority of babies when they have the Norwood), was very swollen, and had 3 big chest tube, a small chest tube, pacing wires, 2 heart lines, a catheter, breathing tube, and arterial line in his leg, as well as all of the other IVs he was hooked up to before surgery. So, it was quite a lot to take in.

February 2-

Had a good night and he is doing well for only being 2 days out from surgery. His chets x-ray looked a little more hazy but they said it could be the exposure of the x-ray. Dr. Kogon (the other heart surgeon) came by today and said Josiah looks good enough to have his chest closed!! He plans to do this tomorrow himself since Dr. Kanter is out of town.

Swelling almost all gone after only 2 days!

February 3-

Dr. Kogon closed Josiah's chest this morning!! Apparently it took a good bit of sedation and pain meds to knock him out to close so he slept basically all day. He looks like a little old man, poor thing! They've made him pee just about everything out...pretty sure he doesn't have much left to pee! They started him back on TPN and lipids for his nutrition (this is what he was on before surgery as well). They may start to wean him off of the vent tonight if he starts waking up.

My poor little man...looks exhausted!

February 4-

Had a good night last night. They took out his 3 big chest tubes this morning!! They also took him completely off of the fentanyl and sedation med. They are continuing to wean him off of the vent, so far we've gone from: 24, 22, 18, 15, 12... he is still on 2 diuretics and other meds.

4 days out from surgery

February 5-

Josiah did well with the 2 C-pap trials they did last night. This morning they removed: his last small chest tube, catheter, and his breathing tube!! I got to change his diaper today. They also brought a mobile to hang over his bed for him to look at (he enjoys watching it). He's been very alert today!

No more breathing tube!

February 6-

Today was a BUSY day! I took the 3 classes that were mandatory to take before they will discharge Josiah. They were: a discharge class, CPR, and a carseat class). I was in class from 10-2 and barely had time to have lunch! Josiah was awake pretty much all day and a little irritated (not a good thing since he barely slept yesterday or last night). He wouldn't really take his paci, it would make him gag. They started his feeds today through his NJ tube (start out at 10mLs per hour and increase every 6 hours until he reaches his goal of 18mLs per hour). They started him on a very small dose of ativan just in case he is having some withdrawal from the fentanyl. It seemed to help as he fell asleep within 30 minutes. I went home for the first time since Josiah's surgery (about a week).

Happy boy!

February 7-

Much better night with sleeping! The night nurse swaddled him and he seemed to really like it. They removed one of his heart lines at noon and that means I get to hold him, finally! He is up to 15 mLs on his feeds and should be at full feeds by 6:00 tonight! Apparently, it's not necessarily the recovery from the heart surgery that keeps you in the CICU, it's the feeding! The speech therapist also came by and worked with him on his paci. We were not there when she came but he's starting to do better with it again!

What a great feeling...I'm sure it was mutual!

February 8-
This morning we came in and noticed he had been moved to a crib!! He had a decent night last night minus the fact that he had a be vomit. They stopped his feeds and pushed them back to 10mLs again. They also switched his reflux medication from zantac to prevacid. We met with the speech therapist and we got to try feeding him a bottle. He took a total of about 5 sucks! he did alright, but he did gag a couple of times. They also took out the arterial line in his leg and they are still weaning down the oxygen he is getting from the nasal cannula.

Big boy crib!

February 9-
Josiah had a pretty calm night. He must have gotten a bath as well, because I could smell baby lotion on him =) He did throw up again this morning. They discovered his NJ tube was a little tangled so they took it out and put another one back down. He is back up to 15 mLs again! He has been a little fussy today, but we are thinking he might have thrown up his ativan. We got to put clothes on him for the first time!! He actually had on a 6 month old side snap shirt on when we came in. The nurse said Dr. Kanter had come by that morning and made a comment about how skinny his legs were and told her to cover them up, hah! Good thing I still had his diaper bag in the car (the one I had packed when I was induced). I had packed a couple longsleeve sidesnap onesies. We put his dinosaur one on him!
***This is the night we got called to come back up to Egleston, and it was our one big set back of this journey. I think it might require a separate blog post as well...***

First time having clothes on!

February 10-
Today was pretty uneventful. They kept the breathing tube and small chest tube in him for today. They just wanted him to rest after what went on last night. Josiah pretty much slept all day, but we did get to change a diaper!

Resting up

February 11-
Josiah had a good night and did well on the C-pap trials they started. He was extubated and they took out his chest tube and IV in his right leg! His chest X-ray looked good and his echocardiogram showed the fluid had left his left side/lung had gone away. They stopped his milrinone at 5:30pm and also restarted his feeds!..one step closer to the stepdown unit!!

Resting some more..

February 12-
Josiah had the same night nurse that got the order for me to hold him for the first time (she always gets him cute matching blankets). His chest x-ray looked a little wet so they started him back on diuril (diuretic). They took out the arterial line in his leg (only thing left in him is his NJ tube and his subclavian central line. He is back in a big boy crib and I also got to hold him =) He should be back up to full feeds by 11pm!

Hey Momma!

February 13-
Another good night! We were moved back to pod 3 (where we originally started). I like this pod much better, as it is so much quieter! Josiah did well with his continuous full feeds last night. They pulled his NJ tube back into his stomach so now he has an NG tube! They also switched his heparin over to aspirin and his lasix is now being given through his NG tube. He also got his subclavian line out and an IV put into his right arm...this means if all goes well we get to go to the STEPDOWN UNIT tomorrow!!

Can you tell he's excited to move to the floor!?

February 14-

Today we get to move to the STEPDOWN UNIT!!! What a Valentine's Day present =) His nurse removed his pacing wires this morning (the last things to go before getting moved). We were transfered at 2:00pm and the only things Josiah had were the IV they put in his right arm (just in case they were to need it) and his oxygen (still on 30% through a slow flow nasal cannula). Once we were there I met with lots of doctors and nurses! They also hooked him up to a pulse ox and a heart monitor (but at least this one is portable). I'm thrilled we are close to going home, but I'm not so sure I'm a big fan of the stepdown unit, only because you don't have a nurse with you 24/7 (since they're preparing you to go home) and it's almost too quiet!
Anthony came up to visit tonight! He was dressed up and brought me a gift for Valentine's Day! Josiah and I also made daddy a gift while we were waiting to get moved to the floor. I had gone and printed out 2 pictures of Josiah (one of Anthony holding him and another of just Josiah) and bought a frame to put one of them in. Once I got to the hospital, a child life specialist asked if I'd like to decorate a frame for the other picture. I did, and that's what killed the time while we waited to be moved =)

One of the pictures I used for Anthony's Valentine's Day gift
(it was one of his favorites)!

February 15 and 16-
I actually just noticed I don't have anything written down for these 2 days! That should give you can idea of just how CRAZY those 2 days really were! So I'll try to do this from memory...
15th-
I know this day was full of learning how to do different things! I learned how to draw up his meds with a syringe and how to push them through his NG tube. I also had to watch a video about the NG tube, how to take care of it and how to insert it. Then came the actual test! I first practiced on a baby doll and then I had to put a new one down Josiah! Definitely not something I'd like to do everyday, it certainly wasn't fun for either of us, but I got it down on my first try! His pump for his feeds was also delivered and we went over how to work it. Walgreens came and delivered his meds, and Anthony and I had to sit through a private "1 on 1" shunt teaching class. A nurse came to our room and pretty much taught us all about Josiah's shunt and everything to look for in case it were to get clogged and what to do about it. That took about an hour and our heads were spinning afterwards (SO MUCH INFO...are they sure we're qualified to take this little guy home?!!). Speech came by again to see how he would take a bottle (still gagged a little, so for now he is only allowed to have a paci dipped in breastmilk to practice). Next we met with the physical therapist. She showed us a couple of different exercises we could do with Josiah. She showed us how he would do his "tummy time" on my chest and also an exercise on how to strengthen his core muscles. Josiah was getting a sponge bath right before she showed up, and was not liking it I might add! So, before she left she mentioned how she would recommend giving him a bath. Let me say, I will never give a newborn a bath any other way! Josiah has not once cried during bath time since we've been home, he actually loves it! We strip him down, swaddle him in a blanket and I get in the bathtub with him. Then, you just take out each body part one at a time, wash it, and then wrap it back up. Anthony is in charge of using a cup and pouring water over the blanket to keep him warm =). I'm sure there might be a few other things we went over and people we saw (I'm pretty sure Dr. Kogon and some staff came by as well as a cardiologist).

Catching some Zzzs (no more oxygen either)!

16th-

Today we got to GO HOME!! However, we didn't actually leave the hospital until about 4:00pm. He had his carseat test this morning and did great (he had to sit in it for at least an hour without his oxygen levels dropping)! We talked with a nurtition specialist and she taught me how to fortify my breast milk to make it 24 calories by adding some formula. Josiah also had his hearing test done and one last echocardiogram (actually that might have been done yesterday, not sure). My aunt and uncle were driving back to Ohio from Florida and had gotten to my parents house yesterday. Since we don't get to see them too often, we invited them to come by the hospital with my parents to see Josiah. It was great seeing them and I know they enjoyed getting to meet our little man. Right before they left we wanted to get a picture (since we were also about to be dismissed) Josiah decided to spit up a ton...which pushed things back a little bit. After that was all situated, we started the process of getting packed up! We had the same 2 day nurses for the two days we were in the stepdown and they were great! I remember right before we left the head nurse came in and talked to me and told me how great of a job I was going to do once I got home, and that is where I lost it! I think the past two days finally sunk in and I realized we were actually GOING HOME! Talk about an emotional, crazy, hectic, but exciting time! The craziness of this roller coaster had finally come to a hault (at least for our hospital journey).

This picture still makes me laugh!..Doing his carseat test!

All ready to go home!

I appologize for such a long post, but this was the best way i could think of to document our 24 days at Egleston! Anthony and I both want to say thank you from the bottom of our hearts for all the many prayers that were sent up on Josiah's behalf! We ask that you continue to pray for our little guy as his journey is far from over!!

A Day in the CICU

We spent about 22 days in the Cardiac Intensive Care Unit (CICU). No one that I personally know (except for a few people I've "met" who's children also have HLHS) truly know what a day in the CICU is like. So, I figured why not write a post about what an average day consisted of! Hopefully this will help you get an understanding of how LONG but at the same time how SHORT the days were for both Anthony and I, and why we asked that people just continued to pray for us rather than come and visit.

After I was discharged and came to Egleston to be with Anthony and Josiah, I cannot tell you how many nurses insisted that I go home to get a good nights sleep. This may seem completely crazy to some. Anthony even had one lady tell him "over her dead body" would she leave her child. Wanting to be with your child 24/7, especially when they are in the CICU, is understandable. But, until you are actually in the situation do you fully understand that that is not realistic. There is no place for you to sleep, most of the time your baby is sleeping, and it can just get overwhelming being there ALL the time (you have to take a break). As hard as it was to leave Josiah, Anthony and I decided to make the 45 minute ride back to our house to get a good nights sleep. I am definitely glad we did. Nothing better to help get you back on your feet then to sleep in your own bed! **Egleston does have what they call "pods" that you can register for each morning to sleep in. Anthony and his sister slept in one the first night and lets just say...they are not the greatest...**

The day after Josiah was born and
after he had had his stent put in

Every morning I would call the CICU and ask to be transferred to whoever Josiah's nurse was for the day. I would usually call between 8-9 am to see how his night went and how he was doing that morning. You can call at anytime day or night, but they will also call you ANY time if anything were to happen. I knew everything was going ok if I hadn't heard from them, so I never called during the middle of the night. We were blessed to have about the same 3 nurses who rotated while Josiah was there during the day who were FABULOUS!! (We also had some wonderful night nurses as well) They were always so great to let me know if he had had a good night, how his morning had been so far, what medications he was still on, etc. Sometimes they were able to tell me a little more as to what the "plan" or goals were for that day, but usually I called before the doctors had done their rounds, so we would find that out once we had gotten to Egleston.

Anthony and I would then get ready for the day and then start making our way up to the hospital around 10-10:30 am. The doctors performs rounds twice a day (morning and night). You cannot go back to see your child until the doctors are finished so there was no sense in going up any earlier. The morning rounds were usually finished by around 10-10:30. Evening shift change usually started around 6:45 pm and so we would have to leave and then evening rounds began shortly after, ending around 8:30pm. So if you look at it, we really only got to spend between 11:30am-6:45pm with Josiah everyday. Sure we could have stayed and waited for evening rounds to be finished and then go back to visit Josiah, and we did that once. But, by the time 8:30 rolls around you are exhausted! We then still had the 45 min drive back home (go to sleep and then turn around and do it all over again)!

Daddy with Josiah the night they arrived at Egleston

If you are a breastfeeding mother then you are allowed 3 free meals a day (up to $6 for every meal). We never made it for breakfast, but I would always stop and get something for lunch and dinner (even if I only got someting to drink and/or some snacks...no sense in wasting that $6). Before heading up the the CICU, I would stop and fix myself a salad, sometimes I would eat it and other times I would store it in the fridge in the family center for later. Then we would head back to the CICU to see our little man. You definitely get to know the people at the front desk because you would have to ring the "door bell" before they would let you in everytime. Once they buzzed us in we would have to wash our hands before we could go to the bedside. The nurse would then give us an update as to what the doctors had discussed in their morning rounds for Josiah. These plans varried depending on how Josiah was doing. For example: if Josiah was still intubated, then they might slowly start to wean him off of it that day to work towards extubating him. Josiah was on many different medications and so they might start to wean him off of a particular one as well. They would also let us know how his chest X-ray looked.

I learned SO much from the nurses while visiting Josiah everyday. It was so fascinating to me what each medication was and what it did, as well as all the machines and pumps he was hooked up to, what every little alarm and beep meant when it went off. One good peace of advice I got from one of the nurses was "if you hear an alarm but you don't see one of us yelling for help, then just ignore it"...hahah...so true, because the alarms on the machines went off all the time!

Mommy and Josiah working on
sucking our pacifier!

Josiah was intubated 3 different times. The first right after he was born, after his surgery, and again after we had our little scare (I'll explain more about that in another post). During the days he was intubated, Josiah was usually just sleepy, since they were giving him meds to keep him pain free. So we would usually sit at his bedside and hold his hand, rub his head, kiss his feet/fingers, and just talk to him. We also asked for a CD player and we were able to play the CD I made for him before he was born. Once they started to wean Josiah off of the vent then they would also take him off of his sedation medications so he would be awake and alert to be able to breath on his own. Once he was more stable we were able to be a little more involved (ie: hold him and change his diaper). The hardest part about having your baby intubated is that they can't make any noise. It was so sad to see that Josiah was crying but not be able to actually hear him cry! When he was extubated we were able to hear his cries a little more but they were completely hoarse and very soft the first couple of days. He had such a pitiful little cry!

After spending about an hour with Josiah, it would usually be time for me to go and pump. There were two different lactation rooms I would go to, one in the CICU and one in the family area close to where the NICU is. Next on the list would be to grab something to eat and then go back to see Josiah again...and that was pretty much the cycle of our daily routine. See Josiah, pump/eat, see Josiah. And, believe it or not the day would be exhausting and would FLY by! Sometimes our parents would come and visit and they would go back to visit Josiah when we would go grab a bite to eat or I would be pumping. Many people asked about coming to visit, which we really appreciated. But, to be completely honest it was better to not have visitors. When Josiah first arrived we had to give the CICU 4 other peoples names that we wanted to be allowed to visit him. These were the only other people that were allowed to come back and see him (and there was no changing the list). This rule was in effect because of flu/rsv season, which I am all for (no sense in risking getting any babies sick). Therefore, if visitors were to come Anthony and I felt obligated to go and sit with them in the waiting area which would in turn take away from the time we got to spend with Josiah. We barely felt like we were able to spend a whole lot of time with him anyway (between taking small breaks, pumping, and eating). We truly did appreciate everyone's willingness to want to come and support us. Not visiting and just supporting a family by staying at home and praying for them is something you don't quite understand until you are in that situation (I know I certainly didn't realize how crazy a day was in here until we were living it).

As you can see, our days were pretty hectic. For Christmas, one of my gifts from my parents was red, white, and blue yarn. Mom thought it would be a neat idea for me to start crocheting Josiah's blanket to help keep me busy at the hospital. It was a great idea, but neither of us knew how little time you actually have to just sit around. Now we know!

Hopefully this gives you a little snapshot as to how life with Josiah was for the first 22-23 days. Never a dull moment to say the least!!

^"Praise be to the Lord, to God our Savior,
who daily bears our burdens."

~Psalm 68:19

Josiah's Big Arrival

**Warning...this is LONG!**

As I am writing this, Josiah is snoozing away in my arms and it makes me feel SO beyond blessed to have this little miracle finally home with us!! It's crazy to think the following events I'm about to write about took place about 5 weeks ago..where does the time go??

The day had finally come. The day Dr. Pohl had schedulded me come to the hospital to be induced (January 22nd at 7: 30 pm). I honestly wasn't a big fan of being induced at first. It was the strangest feeling walking into the hospital, completely fine without any contractions...but I didn't really have a choice and it ended up being alright when it was all said and done. We pretty much had everything ready to go. We had our overnight bags packed and Josiah's diaper bag packed (just in case we were able to go home). My parents came over to keep me company and to help make the day go by faster. We also took a quick last minute trip to Sams to  pick up a few things I knew we would need once we got home from the hospital (whenever that would be). Once Anthony got home, I took a shower and he vacuumed the house. 6:30 rolled around and I called to see if the hospital had a room available for me. They gave me the green light and we had about 30 minutes before we had to make our way to the hospital.

Once we arrived I checked in at the front desk and we waited about 20 minutes before we were taken back to a room. Our Sunday school teacher was out of town that week and hated he would not be able to be there to come visit and pray for us. His sweet wife Sheryl decided to fill in for him. The labor and delivery room was pretty nice and spacious. But, it was crazy to think that this was the room I would be delivering Josiah in...I'm not sure why, it just was? Anyhow, we got settled in and I changed in to the very attractive hospital gown...Sheryl stayed and visited with us for about and hour and then prayed for us and left. So thankful for that family!

Let me just say, my experience at Gwinnett Medical was fabulous. I couldn't have asked for nicer nurses the entire stay. Dana, my night nurse came in and asked several questions and then said it was time to get this show on the road. She inserted the Cervidil and there was no turning back. Shortly after, another nurse came in and started my IV. I was also hooked up to the monitoring devices and learned that I wouldn't be allowed to get up and walk the halls or anything because of new restrictions/guidelines from the cervidil...being hooked up to monitors 24/7 until pushing started was no fun!

Anthony and I spent the next hour or so talking, watching some tv, and I filled out a little bit of Josiah's baby book. Dr. Pohl prescribed me an Ambien to help me sleep that night. I didn't want to take it at first, but I'm glad I finally did as I started to have a few contractions. The Ambien totally helped me have a good nights sleep.

7:30 am rolled around and my morning nurse Lynne walked in. She introduced herself, took out the cervidil and said I was allowed to take a quick shower if I wanted to before Dr. Pohl came to break my water. I could definitely feel some contractions going on so a shower sounded like a great idea. Anything to get out of that bed! Anthony helped me to the bathroom and I got ready to take my shower. Now, I would consider myself a pretty modest person. However, during the experience of childbirth, modesty pretty much goes flying right out the window! Here I was standing totally naked getting ready to get in the shower and in walks Lynne (I can't remember why now). Oh geez...it's more embarassing remembering it now than it was when it actually happened.

After my shower, I got back in bed and enjoyed some apple juice and strawberry jello (which did nothing for being hungry, oh well) and about 30 minutes later Dr. Pohl came in to break my water. He showed me what he would be using to do it and I remember telling him it looked like a ginormous crochet hook! The whole process took a few seconds and I instantly felt like I had involuntarily peed myself, haha! Anthony watched and told me later it was so weird!

Now, let me mentioned to those who didn't know, my original plan was to try to have Josiah without an epidural (although I wasn't opposed to getting one if I couldn't stand it). We read books and prepared as much as possible, but the whole being induced thing completely threw me off! I planned on walking around if I felt like it (no go because of the Cervidil). I also didn't want anyone except for Anthony in the room so it would be quiet and I could concentrate, again, that didn't happen. About an hour after my water broke I started having some insane contractions. I remember my mom walking out of the bathroom during one of my contractions and she was being really loud. I remember being extremely irritated and told her (not so politely) to be quite (I actually told her to "shut up"...give me a break, I was in crazy pain!). Finally everyone left. Another reason I wasn't able to completely relax was because I was hooked up to all those stinkin monitors.

This must have been during a bad contraction because
 I have ZERO recollection of this photo ever being taken

After about 2 1/2 hours of crazy contractions, I told Anthony I wanted that epidural! It took about 30 minutes before the anesthesiologist came in. It really wasn't as bad as I thought it might be, and let me tell you, the BEST thing ever!! I actually took 2 naps the rest of the afternoon..it was heaven! Funny thing, I remember asking Anthony how big the needle was while I was getting the epidural. Being the intelligent man that he is, he replied "oh it's not bad at all"...later he told me the thing was huge!

Feeling much better!

Now, I know I've mentioned how phenomenal our cardiologist Dr. V is, but let me tell you...that man called 3 times to check on me and to see if Josiah had arrived yet. The NICU team also called down about 4-5 times during the afternoon to see if it was time for me to start pushing as well. Apparently they had been preparing for like a week for Josiah's big arrival. One of the nurses that day even told us we were like "celebrities" everyone had been waiting for Josiah's delivery date...lol! I had no idea! **We had our first cardiologist appointment yesterday and one of the nurses said she over heard one of the doctors say after my delivery that it was like they were "delivering the royal baby"...haha!**

5:30 pm rolled around and Dr. Pohl came in to check me. He said I was fully dialated and gave me the go ahead to push! Lynne explained to me how and when I should push and we were on our way. Now, I've heard from some people that because of their epidural, they couldn't feel the peak of their contraction (the best time to push). My epidural was great and I only "upped" it once right before pushing. I could feel the pressure and the peak of every contraction and when it was time for me to push.  The first 30 minutes of pushing were draining! They had put a mirror at the foot of the bed and I would look after everytime I pushed and think "oh my gosh this is going to take forever"! At about 6:00,  Dr. Pohl came in and got all "suited" up. The NICU team made their way in as well. Every time I tell people about delivering Josiah, I tell them it was like we were having a party in the room!! If I had to take a guess, I'd say there were about 9-10 people in the room, including anthony and myself, during the last 15 minutes of pushing. It took another couple of rounds of pushing and then Mr. Josiah made his big arrival at 6:14 pm!! I'll never forget seeing his head come out and telling Anthony "look he's almost here!". The feeling of first seeing Josiah is something that is unexplainable. Nothing but pure love and joy of finally having him here, but then anxiousness as to how he was doing "health wise". I specifically remember only hearing him let out 2 cries. Dr. Pohl immediatly started the whole sucking out his mouth, etc. but no more cries came. A lady from the NICU yelled out "1 minute 8 seconds Dr. Pohl". A few more "suctions" and Dr. Pohl handed Josiah over to the NICU team. At that moment I lost it. I'm sure it was a mixture of hormones, emotions, and not knowing how my baby was doing. They had him in a NICU bed next to mine and 3-4 nurses were surrounding him all working on getting him stablized.

 

Right before leaving for the NICU

The next 15 minutes consisted of Dr. Pohl finishing up working on me and the NICU team working on Josiah. One of the nurses said a couple of times "look, he's looking over at you", but I could barely get a glimpse because of all the nurses surrounding him. Finally, they had finished stabalizing Josiah and they wheeled him over to me so I could at least get a good look at him. He was perfect even with the breathing tube stuck down his throat. I don't think we've gone a day without someone saying how alert he is, and let me say, he was just as alert right after birth. He was looking right at me and I was able to hold his little hand for about a minute. One of the nurses was able to take a couple of pictures with my phone, which I am thankful for! After my "time" with Josiah, they quickly whisked him away to the NICU (to do an echo on his heart) and Anthony followed. There I was by myself with Dr. Pohl and my nurse Lynne. Our parents were able to get a quick glimpse of Josiah as they wheeled passed them on their way to the NICU and then they came in to visit with me. About 30 minutes later Anthony came back to the room to tell me they were about to transport Josiah to Egleston. Our family left so we could have a little time with each other before Anthony went to go be with Josiah. I can't really remember what all we talked about during that time, but I know there were tears. Anthony did tell me Josiah Weighed 7 lbs. 6 oz. and was 20 1/2 inches long! After about 15 minutes we decided it was time for Anthony to go so he could be at Egleston once Josiah got there. We said our goodbyes and he was gone.

Josiah's sweet ride for Egleston

One of the nurses that rode with Josiah to
Egleston took this for me

And that was that..I was alone, well not really alone, of course I had my parents and my in-laws there, but the most important two people in my world were gone. However, for the next 1-2 hours I didn't really have time to lay around and cry, there was too much going on with visitors coming by. I am thankful for that because it kept my mind off of what reality really was. Around 9-9:30ish they finally moved me to a 2nd floor room. We had decided that my mom would spend the night with me so I wouldn't be by myself. We got all settled in and about 30 minutes later dad came back with, you guessed it, my salami sub from Publix!! I can't remember if I ever blogged about that, but I had been craving a salami sub from Publix from the time I was about 5 months pregnant, and I told everyone that that was what I wanted after I delivered Josiah. It was heaven! Anyhow, another sweet friend came by to visit for a little while, and at about 10:30pm she and my dad decided to let myself and mom get some sleep. And that, is when reality really set in. All of the craziness of what had been going on since 6:14 that evening had finally settled down. I actually had time to stop and think about how I was "here" and Anthony and Josiah were "there". That is not normal...and I pray no one ever has to experience that. I felt completely helpless, lonely, and aching to be with my husband and baby. But, I had no choice.

I some how managed to get some sleep that night, but 7:00am came quick. I ordered some breakfast and started eating a little bit until my phone rang. It was Anthony and he had an update. Dr. V (Josiah's cardiologist) had mentioned before Josiah was born that he might possibly have what was called a restricted atrial septum (ASD). That would mean he might need a procedure done before he had his actual surgery. And he did. Anthony had called to tell me that they were about to take Josiah back to the cath lab to put a stent in his heart. Even though we knew there was a possibility of this happening, it still didn't make it easy to swallow that our 1 day old baby was about to go back for a risky procedure. At that moment I think everything finally set in and I lost it, I burst into tears, and Anthony and I both cried on the phone. Mom came over, hugged me, and just started praying. I can't really explain my emotions at that moment. I felt completely helpless and just wanted to be with Anthony. It wasn't fair that he was having to go through all of this without me there. He had mentioned on the phone that the doctor who had read him the consent forms didn't have the best "bedside manners" and told him bluntly everything that could go wrong. I can't imagine having to hear that just one day after our son was born.

I finally gathered myslef together and ate about 1 more bite of my breakfast because frankly I didn't have much of an appetite anymore. At about 9:00 Dr. Pohl came by to see how I was doing. He asked how I felt and told me all the things I needed to avoid and also do once I was discharged. He then told me as long as I took it easy he was going to go ahead and give the "ok" for me to leave. He didn't say it, but I knew he knew I wanted to be with my baby. I was shocked! I honestly didn't think I would be discharged until later that afternoon, but I certainly wasn't complaining! The next 2 hours, I met with the lactation consultant, my nurse, and I also took a shower. I couldn't wait to get out of that hospital and get down to Egleston. At the same time I knew I needed to take it easy and tried not to rush myself. After signing some forms and getting everything packed up, the nurse wheeled me down to my parents car and we were on our way to Egleston at 11:30 am.

We finally made it to Egleston about 40 minutes later and I was greeted by Anthony and my father -in-law with a wheelchair. They informed me that I was not walking around the hospital and so they insisted I let them push me around. Funny thing, the first wheelchair they brought was a child size one...hahah and there was no way my butt was going to fit in that! Thankfully the information desk had one and let us use it. I'll never forget when Anthony finally wheeled me back towards the cardiac ICU we ran into one of the ladies who worked at the front desk, Marcie. She couldn't believe I was already at the hospital and asked if I was sure they didn't just let me out on a pass. I assured her I wasn't, and thought in the back of my mind..I'm not quite sure what the point of a pass would be, lol.

After washing our hands we were allowed to go back and see Josiah. He was in the same bed space as the little girl we had seen when we had come on our tour/consultation back in October. My precious little boy was hooked up to all kinds of IVs, a breathing tube, monitors, and not to mention he was very swollen from the procedure. He looked so helpless, but he was the most beautiful little thing I had ever seen. I was so glad to be there with him and Anthony. We spent the next hour or so just sitting with him, holding his little hands, and talking to his nurse.

First time getting to see my little man when I got to Elgeston

Like I have said all along. I am so glad that we found out about Josiah's condition before he was born. It allowed us to somewhat prepare for what was going to happen, but lets be honest, there is no way to absolutely prepare yourself for what we actually experienced. All of the events, emotions, etc. it is something I pray no one I know ever has to go through. It is such an unnatural way to experience the joy of childbirth. At the same time, that was our experience. God chose us to go through that. It's definitely not something I enjoyed or would ever like to do again. Frankly, it flat out stunk! But, that's our journey, Josiah's journey, and we can never change that. I thank the Lord each day for a little miracle...and that is exaclty what he is as you will come to find out as I continue to fill you in on his story...

First family picture together

"Give thanks to the Lord, for he is good.
His love endures forever"

~Psalm 136:1