The other shoe dropped. I’m just hoping now that it’s finished stomping.
I’ve never allowed myself to consider losing Gabriel. First, he has never been that sick. He had about a week-long scare that ended with a diagnosis of pneumonia and then there was a scare that I could have lost him in-utero, but death still wasn’t a possible reality. Second, I never wanted to get to that point emotionally unless I was faced with it because I doubted I could bring myself back from that state. I’m not sure that I’m ready to write about this or even know what to write. Last night I was trying to block it all out.
Gabriel took a downward trend 24 hours after surgery…and he went south quickly. He went from a traditional ventilator to a high frequency ventilator with significantly high settings, he received a platelet transfusion, his pH level dropped, he was put on two antibiotics, he was put on a high dose of blood pressure medication to raise his BP, he received 75 mL of saline just to add volume to his blood to raise his BP, and he still wasn’t peeing. His entire body was shiny because of the swelling. He couldn’t move his arms or legs and his head was just as swollen, the fluid billowing his skin out around where his head laid on the gel pad. There was no separation between his head and abdomen, he looked like an extremely swollen barrel. He had an arterial line in one hand, an IV in his other hand, an IV in his foot, and a PICC line in his other foot. At one point he had an IV in his scalp, but it had to be taken out because the vein blew while he was receiving an infusion of sodium bicarbonate (to bring up his pH level) and it chemically burned his forehead. I’m praying that I don’t have nightmares from seeing him like that.
The PH level in Gabriel’s body dropped down to 6.92 (normal is 7.35-7.45 and death occurs at 6.7). The sodium bicarbonate is a “resuscitation med”, which he received three times. He was the sickest baby in the NICU.
The surgeon came to look at him because his doctor said that he looked worse than anticipated and he could possibly have a leak where his stomach was connected to his intestines. He needed a non-invasive study done in the OR to determine if he was indeed leaking…but he was too unstable to leave his room. He had blood taken for a blood culture to determine if he had an infection, but those take at least 48 hours for the results.
Yesterday early in the afternoon I thought I was losing him. I went there, I had to…it was staring me in the face. The doctors and nurses were doing everything they could for him. If he had gotten worse, they didn’t have much leeway. Now I know what it’s like to be so upset, grieved, and scared that you are literally on the verge of throwing up. There truly are no words for that and I can’t try to think of any.
I knew he was starting to take a turn south the night before. Instead of being able to sleep, I tried to pray. I’ve been having a hard time praying lately. I think I’ve masked this hesitancy recently in calling it “peace” or maybe confused it with denial. I think I realized that it’s doubt. I’d been struggling with feeling like my prayers didn’t make a difference because God already has everything orchestrated, whether I pray for something to happen or not. Since our stay in the NICU began, I’ve found that the best way for me to pray is in praying for God’s perfect will to be done. Whether He should choose to heal, prolong healing, or not to heal, I firmly believe these are possible outcomes straight from God, whichever He chooses. That night that Gabriel started downward, I found it especially hard to approach His throne in prayer. I was pleading with Him, starting to make deals, even yelling and being condescending, almost threatening. I just could not believe for one second that God would take away my precious Gabriel! So, I called on others to do the praying for me…and I took care of the being angry part. The one thing I was able to pray for was a large diaper. Gabriel has his diaper changed every four hours. His biggest diaper has been 55 grams, but they are usually 20-30 grams. I prayed for a 100 gram diaper. Yesterday late afternoon Gabriel was showing signs that he was stabilizing. The first sign he showed was a diaper. A large diaper. A 101 gram large diaper. I know that was God’s way of showing me that He is still in control…and to get me to stop yelling at Him.
Gabriel is not on a downward trend today. He is on a very slow-moving upward trend, veerrryyy slow, but it’s upward. He still isn’t stable, on lots of medication, and relying completely on the high frequency vent to breath for him. Despite his instability, he was transported down to the OR to check for a leakage, and there is not one. The next test we are waiting on is the blood culture, but he’s already on two general antibiotics and a third very strong antibiotic. He still looks like he is in so much pain from the swelling, but he is being kept on pain meds and being sedated.