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...**
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| 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)!
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| 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!
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| 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."
who daily bears our burdens."
~Psalm 68:19
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