The NICU Conspiracy | Giftie Etcetera: The NICU Conspiracy

Sunday, September 28, 2008

The NICU Conspiracy

I'm never a blog slacker, so I apologize for the spotty blogging. Mostly, I apologize to myself. I NEED blogging, especially when I am otherwise weepy and hormonal and need to talk but don't have time to because I'm stressed. Put simply, I need you people out there on the interweb. And if any of you are close friends, I'm up for company. Just call first, to make sure it's a good time. And, well, if my husband and I sheepishly disappear into the bedroom to sleep and you don't hear from us for an hour, well, that's the risk you assume when you visit! LOL.

Monday through Friday were torture in the NICU. First, I was achy from recovering from the c-section with 15 hours of labor and 2 hours of pushing and from walking back and forth to the NICU, which was about a five minute walk from my hospital room. Second, things started to go from "a mild infection and fast breathing" to looking serious and grim.

By Tuesday, I got a call from the neonatalogist. Loki reportedly had a spell of apnea. Apnea, as I knew all too well, is when the heartrate drops and breathing stops for 20 seconds or more. It's pretty scary. It is associated with SIDS. He was put on a five day watch for another episode to see if he needed treatment. His lungs still had fluid and they couldn't tell if he had pneumonia. He was spitting up all feeds and put on IV due to a bad bowel x-ray two days in a row. He had a positive screen for Group B Strep, despite the antibiotics I took during delivery and despite a relatively safe (in terms of contracting Group B) c-section delivery. He was jaundiced and his bili levels were rising.

By Wednesday, though, things were turning around a bit. No more apnea episodes occurred (and, usually, if they occur, they do so in the first 2-3 days of life). The lungs still showed some fluid, but only normal amounts for a c-section and no pneumonia. Lochlan's breathing slowed a bit, so he was allowed to start breatfeeding after three (breastmilk) bottles. He did not spit up a bit of the breastmilk, so the bowel was considered okay and just a scare. The Group B culture came back negative. Yippee. Clearly, he had some sort of infection, but nothing as serious as Group B. His jaundice improved and he was removed from the bili lights. The doctor said he was coming home on Friday.

I wanted to blog. I wanted to shout to the world. From seriously ill - so ill that we had limited visitors and could barely hold him - to going home! I got started on breastfeeding. His latch is excellent. He required a nipple shield (no surprise there), but ate well. His jaundice started up again, just a little, but the doctor said to keep breastfeeding exclusively and not to worry...that's normal with breastfed babies. He could (and still can) bounce back and forth between bottle (with breastmilk - I have a freezer full) and breast with no problem at all. And he was coming home!

Wednesday night went bad, though. We had gone home midday to rest. I wanted to breastfeed in the morning and at night. Had I felt better, I would have tried to stay at the hospital 24/7. But my feet are swelling, I'm getting headaches, and my blood pressure is rising (still, but it started on Wednesday-ish). The doctors put me on meds and are watching me closely. Also, though I'm recovering from the c-section well, I'm definitely suffering. Honestly, the pain level is less than my small tear last time, but I do not feel good overall. I'm weak and lethargic. So we did morning breastfeeding (8 a.m. and 11 a.m.) and evenings (usually 5 p.m. and 8 p.m.) instead of all day long.

We were home with mother in law wednesday afternoon, napping, when the air conditioner stopped working! OMG! So we called the repair people. They would try really hard to come out that night, but Alan had to stay at home and meet them. Sunny said we could crash there. MIL was leaving in the morning anyway (since the baby was coming home), so she would leave Wednesday night instead. She would drive me to the hospital and Sunny would meet me there, while Alan and Ander waited on the A/C repair person.

MIL almost crashed her car! She had forgotten her purse and realized about two minutes from our house. She turned around to look for it - while driving! I saw she was about to crash and said, very calmly and clearly, "Mrs. Rose, look at the road. Mrs. Rose, look at the road NOW." She finally did and pulled into our lane right before we would have crashed. Then she insisted that I look in the back seat for her purse. I explained that, with the c-section, I couldn't twist around. she insisted. I said no. Finally, she pulled aside to look for her purse. I suggested that she just take the two minute ride back to my house and look for it there, but she refused because she didn't want Alan to know she forgot it! WTH? Isn't he going to know, anyway? In the rush of the changed plans, anyone could have forgotten their purses. And, was she really going to ride three hours to home without a purse? Up until this point, she had been easy enough to deal with. But from this point forward, she also took so long eating supper that I almost didn't get to feed the baby and she refused to wear a mask, despite a head cold. I insisted she wash her hands and wear a mask. She refused, because then the NICU nurses "might not let me hold the baby." Um, I informed her that without a mask, I would not let her hold the baby. She has a cold, the baby is newborn and has an infection, and the baby's own daddy was wearing a mask because of the cold.

Finally, Mrs. Rose left and Sunny came to sit with me while I fed the baby. Alan called. The A/C was fixed. (Shout out to RiverCity A/C - lifesavers who went above and beyond because of our NICU baby!) But, despite a record of wonderful, wonderful, wonderful nurses, our NICU nurse that night was terrible. She was a busy-body, wouldn't allow me alone to bath or change Loki (um, it's my son and EVEN NICU PROTOCOL requires that I care for him to the extent I can), didn't look in on the babies whose parents weren't there (HUGE RED FLAG), and was very condescending. I mentioned to Sunny, Alan (later when he joined us to visit Lochlan) and Doris (the next day, when she generously spent the day with Ander in the waiting area so he could be near Mommy and Daddy) how bad she was. Finally, frustrated and ready for Loki to come home, we returned to our house.

On Thursday morning, I asked to the new nurse who came on shift at 6:30 a.m. for the routine report from the night before. "All went well. The night nurse didn't mention any problems." Great. We were still scheduled for release at 2 p.m. on Friday. Since it was our last full day in the NICU, I decided to vary my routine and stay all day, practicing breastfeeding. At 2 p.m., Doris and I were sitting next to Loki, while Alan checked the lost and found for our camera cord. The nurse practitioner came in, sat down, and looked very serious.

She claimed that Loki had apnea, again. At 5 days post-birth, that is a MUCH more serious situation than at 2-3 days. He was going to have to stay at least 5-10 more days and probably have some caffeine treatment and go home on a monitor. Also, his jaundice was back and climbing and he might go back on a bili light.

Red flags went up for me. Then horrible night nurse had noted apnea, but they still had to call her for details. She didn't note how long the heartrate dropped or what it dropped to and she didn't note the length of the halt in breathing or whether she had to revive or the circumstances. The nurse practitioner promised to ask for details when the nurse returned for the night shift.

Hello? She didn't chart sufficently and they were going to wait several more hours?!? My kid might stay another week and they weren't sure what happened? My kid might have been not breathing, but they didn't know?

So I threw a (calm but effective) fit. I insisted they call they nurse immediately. I insisted that NO DECISIONS BE MADE until they spoke to the nurse and consulted with me. (The NICU doctors tend to just decide things without the parents. I would not find this acceptable.)

Three minutes later, we overheard the nurse practioner talking to the neonatalogist.

THERE HAD NOT BEEN AN EPISODE OF APNEA. In fact, the neonatalogist stumbled along, apologizing to Alan and I, the first episode was not apnea, either, and I should not have been told that by the other nurse practitioner! They were just watching. Lochlan had normal heart rate decels. Mild, NORMAL decels while being changed or all babies do!

I was relieved, but livid. The doctor had the nurse reprimanded, pulled off the next shift, banned from being around Ander, and retrained in charting. I was assigned two EXCELLENT nurses, including a friend of mine from my mom's group.

We are still struggling with jaundice, and on Friday and Saturday, were facing a possible return to the NICU. That risk is related to breastfeeding, much reduced at this point, and merits a whole separate post.

As you can imagine, I am now a paranoid, emotional mess. With cankles. But at least my baby is sleeping peacefully. Well, peacefully as long as one of us holds him.



The Horns Blog said...

you poor thing having to go through all this. at least loki is home where he should be. i hope all gets better soon for you and your famil

Krumpledwhiskers said...

So glad to read an update from you guys. What a nightmare nurse and I hate to say nightmare MIL. YIKES! Thank goodness you'll be in your own home where you can call all the shots now. Home at last!