SigEp in Training

Par had a big day today—although when we arrived this morning he had not been put on the conventional ventilator as we had hoped. The ventilator is still just sitting there waiting to be used—but Dr. Kays just hasn’t been in since yesterday and he is the one that will do the switch from oscillator to conventional. This is a little frustrating because the hold up has nothing to do with Par and of course we just want him to take this next step—but we have to remember that God’s timing is what we want and if this is how it is going to be then okay. Hopefully Dr. Kays will be in tomorrow morning and we’ll be surprised when we come tell Par good morning.

So, this morning Par was just hanging out watching his bear dangle above him. We had a good report from the night nurse that Par had good blood gases and sats. He also had his foley catheter removed, so now he is peeing in his diaper like all the other babies! Thankfully he was awake and in a pretty good mood (as anyone who had just had their catheter removed would be!). Rusty and I had brought his music that he had been listening to while in the womb—he really loves music and so we played it for him while we were there and he seemed to enjoy it. When we left to go shopping for some coats (we didn’t bring any—this is Florida, it isn’t supposed to be cold here!) we put on a recording of me reading The Velveteen Rabbit—hopefully it put him right to sleep.



After lunch, we walked in to find Par on his tummy. And as a tribute to his dad and all of Rusty’s Sig Ep fraternity brothers, Par has started “bunny on head night” and continues to remain the coolest kid in the NICU. Aunt Sally arrived just as I finished my afternoon pump and was able to enjoy “Bunny on head night” live and in person. She hasn’t seen Par since a few days after he was born—so I’m glad she is back to spend some more time with him. Sal will be here all week for Thanksgiving break.



I decided to just sit with Par for a few hours between pumps—mom and Sal went back to the hotel a little after Rusty left. The nurse practitioner came over to tell me they were putting Par on 2 different types of antibiotics because of something they saw in his x-ray today—they thought they saw something in his intestine but she said it is probably nothing and they’ll get another x-ray tomorrow morning to confirm—but to be on the safe side, she went ahead and started him on medicine. She indicated that most likely it is a blur from Par moving during the x-ray (anything to get attention!)

Before I left for dinner and shift change, Tina gave me a little knitted baby hat from a woman named Tracy from Memphis, TN. Tracy is also a mother to a CDH baby that was treated by Dr. Kays at Shands. Tracy’s son Jonathan was born in May and passed away at the very end of July—just days after Ella’s birth and days before our initial visit to Shands. Her strength is inspiring to me—she knows of Par and the other baby Jonathan from Tina and Josh. For her to give us such a precious and thoughtful gift—well, words can not express how touched Rusty and I are right now. We pray that God will continue to give her this strength and peace so she may continue to touch other people’s lives with the life of her son Jonathan.



When we went back to tell Par good night he was wearing the hat—it is the first hat he has ever worn and it looks precious—you hardly notice the brain strip on his forehead now, right? He was happy when we saw him, but then we turned on the light to take the picture—so please do not think his crying is a reflection of his thoughts on the hat—we can tell that he loves it very much. Par was in yet another position this time—I guess now that he is stable they try and reposition him as much as possible—we’ve been told that it will be much easier to do this once he is on the conventional ventilator because those tubes are much more flexible. After we turned on the light and he got upset it took a little bit to calm him down—he loves the song Twinkle Twinkle Little Star—he especially likes the second verse of the song—Twinkle Twinkle Little Par—it calms him down every time. We said our nighttime prayer out of a book given to us by the Elizabeth Ministry at our church in Birmingham, The Cathedral of St. Paul—it is such a thoughtful gift and I look forward to using it with Par. After the prayer, we left him sleeping peacefully—hopefully we’ll have a surprise when we visit him tomorrow—but only if the timing is right.

As always, we continue to pray for Ella—it seems that she will be having her surgery for a feeding tube next week. We ask that the Lord will comfort Tina and Josh with this decision and that Ella’s surgery and the days leading up to it will go smoothly. We continue to pray for Jonathan who is still on ECMO—we ask that God will strengthen him and continue to heal him. And we thank God for Tracy and for her strength and for sharing her son with us through the gift of a hat for Par—something we will treasure forever. We know Tracy’s strength and peace can only come from the Lord and we praise Him for His constant love for us.

Thank you for your love for us and our baby—we are so grateful for our friends and family. Much Love--Liz, Rusty & Par the SigEp in training