First Month

Fredy and I spent the next couple of hours processing what just happened while they monitored me. He had to pack up all of the stuff I had already unpacked for my long stay so that we could move to a postpartum room. We had never decided on a name, we just knew that Antonio would either be his first name or middle name, as that is Fredy's, his dad's and his maternal grandpa's middle name. Because we didn't have a first name that we both liked, we decided that we would use Antonio. We threw around some middle names, but nothing stuck. Fredy suggested that he didn't need a middle name, and that had never occurred to me. We decided that he simply didn't give us enough time for two names, we'd just stick with the one!

 Around 6:30AM we were finally allowed to go meet him after being transferred to the post partum unit. When we got to the NICU his oxygen saturation level was only 65-78% (should be above 92%) even with 100% oxygen being delivered through the ventilator, and they had an IV medication helping him keep his blood pressure up. We were so scared, and I had to go back to my room to be a patient myself after only a few minutes. That's how the rest of the day went, go see him-be scared-go back to my room. That afternoon they decided to try nitric oxide to treat the pulmonary hypertension that they found on an echocardiogram. If it was going to work they would know within minutes. If not, then there weren't many options other than to wait and see. I was too afraid to know, so we went to go try to sleep and shower for the first time in 36 hours. Fredy was still in his work clothes and boots from the morning before.

 6 hours old

When we came back later that evening we thankfully saw that the medicine had indeed worked, his oxygen saturation was 98%, he had a chance. In the days following he blew the doctors and nurses away. They were able to take the nitric oxide off on day 3 and he was doing well, all things considered. We even got to hold him that afternoon, that was the best moment of our lives. We were also able to start participating in his "cares" every 3 hours. {We help change his diaper, take his temperature,  switch the sites of his monitors to protect his skin, and use milk to do his oral care. Those times have gotten me through the day each day, getting to actually care for him.}

1 day old

3 days old

 There was talk of attempting to take him off the ventilator when he was 5 days old, but the night before he started to decline. His "honeymoon stage," as they call it, had worn off. He was tolerating his "feeds," breast milk put down his feeding tube. And his blood pressures were looking better, but his lungs weren't cooperating. The next 10 days were spent attempting to wean his oxygen and pressure settings down on the ventilator. He would have one good day and then 2 bad days. It was so frustrating, especially after having our hopes so high in the beginning. When he wasn't improving greatly they decided to start a 10 day course of steroids to help him a long. He responded well, so they planned to take him off the vent on the 12th, but that was a Saturday and we've learned that not much actually gets accomplished on the weekends. So finally on day 15 they decided to attempt. We were so excited, we might actually get to hear him cry. We were told over and over that there was a chance they'd have to put the breathing tube right back in, and a large chance that he'd be put back on at some point. And he would definitely need to be placed on what is basically a CPAP mask immediately. So they took the tube out and put the mask over his nose. No cries came out, which was sad. I think that the combination of pressure from the mask and his little vocal cords not being up to par yet kept him from making any sound.

5 days old

9 days old, you can see his little floppy right ear here

14 days old

The next 36 hours we watched him struggle much more than he had on the vent. The pressures needed to hold his little lungs open unfortunately caused his face to become very puffy. (pics not included, it's too sad 😢) He didn't even look like the same baby and he was extremely uncomfortable. I was so glad his lungs were getting a break from the vent, that was really important in his long term prognosis. But it tore us apart. When they would feed him the pressures from the mask would cause his belly to fill with air and press up on his lungs, causing him to spit up and drop his oxygen. It was miserable, so when they told us they were going to put the tube back in on the evening of the 16th we were mostly relieved. 

17 days old (finally has both eyes open!)

This time he was put on a different type of ventilator (conventional), it was still a step in the right direction. He did really well for the next 2 days, but then on the 20th I noticed that something was wrong. He was needing more oxygen, he was pale, and not his normal feisty self when we would do his cares. I mentioned it to the nurse, but because she had never had him before I think she wrote it off. I spoke with the night nurse about my concerns and she said she would bring it up to the doctors. At 3:00AM the doctor called us and said that they had decided to work him up since he still wasn't improving and they had found that he had an infection. He was septic, the infection had made it into his blood stream. The next day he just continued to decline, needing more oxygen and higher pressure settings on the vent. Midday they switched him back to his "jet" vent that he started out on and by that evening he was back on the nitric oxide. The infection, which we found out started as a UTI, had basically reversed the progress he had made in his lungs because of the inflammation. He had to get a PICC line for the second time, this time for antibiotics. That was a very hard day. Thankfully he responded to the antibiotics and nitric well so he was able to kind of stabilize. And the doctors continued to remind us that the most important weapon he has is that he is still growing. The next week flew by it seemed, the progress was so slow that it felt like all one long day. It was very apparent that he would need a second course of steroids to renew his lungs. They were kind of just slowly making vent adjustments to try to help him while waiting for his antibiotic course to finish so that they could start the steroids on the 28th.

got his color back, feeling better 😀

22 days old

26 days old

So that brings us to this week. They were able to start the steroids on the 28th, and he has began to show small signs of improvement. Less oxygen requirement and they've been able to slowly lower his pressure settings the past few days. They make adjustments based off of blood gases, they're mostly looking to see if he has the correct amount of CO2 in his body. The problem is, when he gets upset (which is a lot because he's constantly uncomfortable understandingly) his CO2 shoots up. That creates an inaccurate picture if they don't wait for him to relax after he's been upset. So lately I've been trying to stand there with my hands on him to calm him down before they draw the blood and it seems to be helping. He's more swollen this week, that can happen when they're on the vent for a long time. Last night he reportedly had a "bad night" that resulted in increased vent settings, but after talking with the staff and neonatologist we decided that was more user error than him actually declining so they undid those changes. Extremely frustrating. I'm very thankful for the doctors and staff that listen when I tell them that I don't feel right about something. We're praying that his little lungs would respond to these steroids quickly, as we're on day 4 of 10 now. Weeks where we're expecting great progress are stressful, any kind of setback feels much more detrimental. 

our favorite resident left us with this scripture on his last day

It has been extremely difficult to be his mom and not his nurse. Especially on the days where it feels like they could be more attentive to him. They tell us that he will have bad days and good days, and I believe that to an extent. And Adult ICU patients are VERY different than neonates, especially extremely premature ones. Neonates are very flexible and resilient. Their vitals drift and sway constantly. They have "events" that in the adult world would end in chest compressions, but they somehow come out of it. It's very hard to watch through my adult nurse lens without panicking, especially when it's my baby. So I'm trying to keep in mind that his lungs aren't done developing, every step back doesn't mean that we have to stay there. I constantly worry about the long term effects from this on every system of his tiny body. There is constant stimulation from the ventilator, alarms, and loud voices. But we have no choice but to take it one moment at a time and just wait and see if he grows out of most of these problems he's having. I've been trying my best to just enjoy him, though it's really hard when there's hardly a moment where there isn't something isn't to be worried about. Just holding him is extremely stressful, he needs suctioned often and any little movement of his head can cause the vent to not work as well causing his oxygen to go down. I write to him in a journal to feel like we're communicating and to process things. I hope someday he'll read it and learn something. Some things to be thankful and celebrate: his little floppy ear is looking better (we don't really know much about it, but it's looking more normal),  his neck control is insane (he can lift his head up and turn from side to side while laying on his tummy, this is bad because he could pull out his tube, but really amazing!), and he's 3lb 1oz today!

Fredy and I were staying at a hotel discounted through the hospital for the first couple of weeks after I was discharged, but we've since gotten into the Ronald McDonald House. It's a free room that allows families of patients to stay as along as the patient is in the hospital. It's very close to the hospital, which has been nice. We can walk back and forth and do laundry there. Going to our house just didn't feel right the one night we tried, especially with how inconsistent his status can be. I don't want him to be alone if something were to happen. We have had tons of support, it's honestly been unbelievable. We're so thankful for it. (we had quite a few packages show up with no name attached, so thank you to everyone who sent us anything!) Fredy went back to work after the first few days, he's downtown on a project at Eli Lilly so it's not far at all thank goodness. Because I hired on under PRN status at Putnam County Hospital, I was able to step away as soon as I went on bedrest. Most days we're okay. Some days we feel like there's no hope and no end in sight. We're thankful for each other, our faith, our families and friends. And especially for Tonito's sweet little face that continues to make it all worth it.