November 8, 2023

David is a week old! Today has been an emotionally taxing day. Looking back on it though, we did make progress in the right direction, but it just doesn’t feel like we did. We knew we would hit some stumbling blocks along this journey, but I don’t think we were quite ready for them after having all positives up to now. 

We started this morning with the great news that David’s feeds had been increased again. They were then stopped in anticipation of getting his breathing tube out. He was alert when I arrived in the morning and looked great. We also had learned that he had some more pressure trials with his ventilator and all had gone great! 

We got word that his PICC line would be placed this morning as well. I was not allowed to stay in the room while that was placed, so I tried to go for a walk. I need to remember that I’m still recovering and need to take it a little easy and not to overdo it. I thought they said I could come back in a half hour, but his room was still crowded after 30 minutes and then again an hour later (although it could have been the morning rounds at that point). The PICC was successful, although since David is on a blood thinner due to the clots in his leg, it did leak a lot of blood everywhere and needed an extra dressing to try to stop that bleeding. When I left for the day, the umbilical line was still being used and was planned on being used until that evening when his lines would switch over to the PICC line. 

After the PICC line was placed, his NG feeding tube was replaced with an NJ feeding tube. The NG tube brings food to his stomach. The NJ tube goes down a little bit further and brings the food to his intestine. This was needed because when he is extubated, then he’ll be on CPAP which will push some air into his lungs and tummy making his tummy a little uncomfortable – especially if there is food in it. The solution is to send the food past the stomach directly to the intestine. 

Once that NJ tube was placed (and the NG tube was ultimately removed since the NJ tube wouldn’t fit in his other nostril), it was time to be extubated. This did not quite go as smoothly as we hoped. Initially, David decided it would be nap time, and would forget to breathe in his state of relaxation. So, he got a drug to stimulate him and counteract any sedation he still had so that he would be alert and remember to breathe. Things seemed to be going ok, or so we thought, as long as he remembered to breathe. 

However, the doctors and nurses were monitoring his stats, and thought think his lungs were being flooded with blood and thus, blood was not being sent to the rest of his body. To remedy, they wanted to start a fast-acting blood pressure medication . We immediately felt the urgency of the situation as there are at least half a dozen doctors in the room watching his stats and urgently awaiting that medication from the pharmacy. In case that medication does not work, they need to get ready to re-intubate him as well. The drug from the pharmacy couldn’t come fast enough, and yet it took forever. There were several calls back to the pharmacy asking where it was and being told it was already dispatched to his room, and then waiting waiting and more waiting for it to arrive. There were several comments about “we need it now! What’s taking so long?” and when the charge nurse finally saw the person with it, she intercepted it and brought it right to his bedside since she wanted the process expedited. We just felt so helpless in this situation. Adam had to leave while we were waiting for those drugs to pick up Eli and Anna since they do much better if a parent picks them up versus anyone else, and he really would have preferred to stay until David was in a better state. 

Once the blood pressure drug is hooked up to his umbilical port, it should work quickly, but his blood pressure seems unchanged. They kept upping the dosage and double checking that the line is the first one in and there are no kinks. The dosage was upped 8 times before we saw the effects that were desired for a duration of time. To stop his apnea, drugs he had been on since birth to keep him comfortable with his breathing tube were stopped, so David was very agitated. Since we can’t just pick him up and cuddle him, I have found that they way to comfort David is to let him hold my fingers with his two hands, with one hand resting on his head. We tried so hard to keep him calm and comfortable while waiting for his numbers to stabilize. This waiting took way longer than anyone thought, but it was a reassuring sign as the number of doctors in the room slowly kept dwindling. 

After David stabilized a little bit, he had an EKG reading because it was noticed his outputs kept switching between two different patterns that the doctors wanted documented. It doesn’t sound like it will be a major issue at this point, as long as he’s able to handle it. 

He also had his dressings redone from the PICC line in the morning. He was remarkably calm during that procedure. He held my fingers while I held his nuk and covered his eyes from the lights. I thought he might fall right to sleep after everything he had been through, but instead, every time I would free my fingers thinking I was being sneaky, he would start crying again until he had fingers to hold.

Adam is feeling terrible for not being with David, and I’m feeling terrible because I haven’t seen Eli and Anna all day. They get ready for school while I leave to see David, and then I was lucky to make it home for bedtime stories. David keeps crying every time I try to leave making my departure from him all that much harder. I know he’s in good hands when I leave, but the nurses have other things they need to do and can’t just let him hold their fingers all night long. That’s something only a parent could provide him. It took several hours from when he was extubated until I was able to go home, and it was an absolutely exhausting day.