Wednesday, April 4, 2012

Avery Reed's first week

This has been hard to write, partially because it was a blur, but mainly because it is painful. The morning after Avery was born, I was still unable to see him. I had to wait a least twelve hours after the surgery to get downstairs. I think it was around lunch time when I finally was wheeled downstairs to be with him.

The sight of my little boy with so many wires and monitors and bubble cpap was just too much. I couldn't keep the tears from leaking from my eyes. I couldn't get my wheelchair up to the "giraffe" bed that he was in, and I couldn't sit comfortably in a chair. I wasn't able to hold him, and just touching his one uncovered hand was not enough. I cried at the blood on his sheets from repeated blood tests. Seeing the bruises coming through from multiple IV sticks broke my heart. I wasn't able to stay but a few minutes when I was ushered back upstairs.

After he had been in the NICU for about 24 hours, he pulled off the cpap. Since he was fighting it so much, they decided to see if he would do okay on just a nasal cannula with a little oxygen. Sure enough, he did just fine with oxygen just slightly more saturated than room air. I finally was able to hold him, and tried to nurse him. He latched on, only to get angry and fuss. We didn't know it then, but somehow his throat had gotten sore, likely from suctioning. I was only allowed to try nursing him for five minutes before they wanted him back in the giraffe bed.

Another day later, he had pulled out his IV. Since he was eating now, the doctor decided to see if he could eat enough without the need for the IV. Until this point, we were satisfied with his care. Unfortunately things went downhill from there. The doctor started his feeds at a reasonable 35 milliliters. Newborns only have marble sized tummies, so small and frequent feeds are needed. I was only allowed to nurse for ten to fifteen minutes, and then he was bottle fed formula. (I wasn't able to get anything from a pump at this point.) Avery did okay until the feedings were ramped up over night.

I came in the next morning to find Avery with a nasal gastric tube. The doctor upped his feeds to 75 mils every three hours, and Avery would vomit after each feeding. It was just too much food for a newborn's tummy. We had hoped to be going home soon, and were told by the nurses that with the way the doctor was acting, we wouldn't be going home anytime soon. My heart sunk. I was due to be discharged the next day, and I was disgusted that the doctor was insisted on force-feeding my baby.

That night, I had a high fever after getting back from the NICU. My OB diagnosed it as a uterine infection, but cultured my port as well to be sure that I didn't have an infection in the line to the port. I would have to stay for at least another 24 hours for IV antibiotics. During this time, Avery was moved to a standard hospital bassinet, with nothing but the NG tube and standard heart and respiration monitor that all babies have during their stay. He was eating fine at this point, had no trouble breathing, and the little bit of jaundice he had did not need to be treated.

Just when the nurses were getting ready to discharge me again, I spiked another high fever. This time I needed at least 24 hours of antibiotics, and more labs were drawn. We didn't realize that it was more serious than a uterine infection at this point, which is pretty serious in itself. Whenever the fever would spike, I'd be in horrendous pain, couldn't stand straight, shook so bad I couldn't even hold a tissue, and it would take hours for the shaking and pain to stop. I was stuck in my room a lot during this period, but I was able to pump some milk for Avery by this point.

We were hoping to have Avery in the room with me the next day, only to find the original crappy doctor was back on duty. This guy was awful. We would sit there for hours waiting for him to finish rounds and talk to us like he was supposed to each day. He never did. If he missed me, he was supposed to go up to my room to talk with me. He never did. We were losing our cool and I felt like punching the doctor by this point. When I did manage to get him to talk to us, he refused to provide any sort of goal, guideline, or idea of when Avery would be released. He also wouldn't give us a reason WHY our son was still in the NICU, when sick babies were being turned away because the NICU was full. I don't think I've ever been that livid at a doctor, or any other person for that matter.

The next morning, we called the NICU to check on Avery. The nurse told us that Avery woke at 7:30 AM hungry, but due to the rigid feeding schedule prescribed by the doctor, she couldn't feed him until 9:00 AM. Again, I was LIVID. When we went downstairs, one of the nurses I hadn't met asked me if I was okay. I told her about how the doctor was being a flake, wouldn't give us any information on why Avery was still there, etc. She told me she'd go talk with the doctor and would be back. She came back to tell me that the crap doctor would be calling our pediatrician for permission to release the baby to the care of the nurses upstairs. Of course, our pediatrician had no clue why the baby was still in the NICU, and discharged the baby from the NICU. (I found out later that I had complained to the NICU charge nurse. It pays to go to the top, I guess.)

It was SO nice to have the baby upstairs with us. He nursed and nursed and nursed, and slept on my chest. You could see him just melt when one of use would hold him without the wires and monitors and cords. Things felt right. We were due to go home the next day...until I spiked another fever that night. This time the doctors were really concerned. Uterine infections are hard to treat, and the doctor was concerned that the infection caused septic pelvic thrombophlebitis. I needed a CT while fasting, more blood work, and medication if the diagnosis was correct. The CT showed pretty clear congestion and swelling around the right side of my uterus and right ovary. I needed another 48 hours of antibiotics, as well as injected blood thinners. I'd be on the antibiotics and blood thinners for another 10 days at home.

I "fired" a nurse for the first time before going home, as well. That rude nurse from the first night was assigned to me again. My heart stopped when I saw her. I told Adam that I didn't want her as my nurse, and we decided to wait for her to finish her assessment before saying anything. Sure enough, she did the same things again. Touching my breasts before and during nursing without asking, pulling up my gown and checking my pad without asking, leaving me uncovered with the curtain open and lights on in the middle of the night, etc. I felt really icky about being touched like that. It took her a full 45 minutes to walk the baby 20 feet to the nursery, weigh him, and bring him back. Mind you, this was at midnight, and because I didn't trust her, Adam had to go with. After she left, Adam went to the nursing station to let them know I would like someone else. The floor supervisor came to talk to me, and had no problem getting me a new nurse. (To be fair, most of the nurses were great. We went through about all of them since we were there for so long. I only found this one nurse to be horrible.)

Fortunately, I started to feel better after a couple doses of blood thinners.  That Monday, Avery was discharged before me. He was allowed to stay with me if another adult was present to help care for him. Tuesday afternoon, I was discharged. We walked out of the hospital, SO grateful to be able to have our own bed, our own shower, our own food.
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