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.
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| On his way to Egleston! |
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.
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| The day after his stent was placed |
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 =)
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| Daddy and Josiah |
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.
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| 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! |
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!
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| Look at that round little face! |
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!!!
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| Should have brought our own shades for thhe day! |
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| Best feeling to finally be able to hold him! |
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).
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| My two guys! Love this picture!! |
***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
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| 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.
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| 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.
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| 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.
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| 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!
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| 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).
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| 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! |
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.
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| Big boy crib! |
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...***
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| First time having clothes on! |
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!
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| Resting up |
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!!
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| Resting some more.. |
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!
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| Hey Momma! |
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!!
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| 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 =)
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| One of the pictures I used for Anthony's Valentine's Day gift (it was one of his favorites)! |
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).
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| Catching some Zzzs (no more oxygen either)! |
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).
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| This picture still makes me laugh!..Doing his carseat test! |
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| 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!!
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