It's a Marathon, Not a Sprint!

Anyone who has had a significant NICU experience will tell you it's a marathon and not a sprint. Setbacks are expected, there will be ups and downs etc etc. I have been feeling pretty blessed that our journey has seemed so straight forward -  with each obstacle expected and then goal met and we moved on. My girls are clearly sprinters I thought. I tend to be slightly on the competitive side (ok a lot), and I have found myself wondering things like, "What's the fastest a 27 weeker has ever made it out of the hospital? Maybe my girls will be the record for the fastest NICU stay." The past 5 days have been a big reality check and reminder that it just doesn't go like that with preemies.

Last Thursday Millie started having some episodes of bradycardia (low heart rate) and apnea (low oxygen) spells. She seemed lethargic and was not feeding well. The MD ordered labs and it showed inflammation and possible infection. She said it might just be from the vaccinations that she got, but they needed to do a septic work up just in case. This meant that Millie got a lumbar puncture and urine culture, and they started antibiotics until those labs came back (which take 48 hours). This sounds over the top, but you have to take infection pretty seriously in the NICU. Babies can get infections which can lead to significant illness, disability and mortality. Her labs did not end up showing any infection, so after 48 hours her antibiotics were stopped. Unfortunately she has continued to be puny and need some help breathing, and she is back to getting a bottle every other feeding (they had increased her to bottles at every feed). We don't really know the cause - whether it was the vaccinations or her just getting worn out or reflux when eating - lots of possibilities. I talked to the neonatologist today, and she reminded me that this is the usual course for preemies. She said that we got a taste of how good they could do which makes this setback hard, but if they were able to do it before (be off oxygen and take their feeds well) then they can do it again. She also said that after a setback it takes awhile for preemies to get back to where they were - it's never an instant bounce back. We're still 3 1/2 weeks from their due date.

Ruby seemed to sail through the weekend. She finally made it to an open crib (current weight today is 4 lbs 7 ounces) and take all her feedings by bottle. They even took her feeding tube out! She was on course to come home this week, then she had a spell yesterday where she dropped her heart rate and oxygen. This means an automatic 5 more days assuming she has no more spells. They call this "spell count down." Since yesterday she has had a hard time keeping her oxygen up when eating. She seems to need to burp, but can't burp then holds her breath and stops breathing well. Today she kept dropping down into the 30's (normal is 90-100%) and turning blue. It was terrible. I was feeding her, and I felt so helpless. The nurse kept coming over and giving her oxygen through a mask. We would get her up and start feeding again, and it would happen again. The same thing has been happening with Millie, but since she has a nasal cannula the nurse just turned up her oxygen while I fed her. After the bad feeding with Ruby this morning, the nurse asked for an order to put her on oxygen while she feeds. Their nurse called me tonight to tell me that her next feeding went much better. So....definitely not coming home this week. That is fine with me. I don't want them coming home until they are stable. I was sweating and having terrible anxiety during both girls feedings this morning. It's just so crazy how different this week is from last week when they were downing their bottles without any problems and not on oxygen. Of course, they were not taking every feed by bottle, so maybe it has worn them out and they need some catch up time. Millie's weight today was 4 lbs 15 ounces!

Jake got new braces and shoes last week. His PT decided to change up the type of foot brace he has because he has been turning his foot out. He has not been as steady in his new braces, because he has to get used to a different feel in them. Starting last night it went from instability to actual limping. It continued this morning so we switched him back to his old braces. I went to school and his teacher and I watched him walk in his new braces, his old braces and barefoot and the limp persisted. I took him to the MD this afternoon. He does not seem to be in any pain, so we decided to give it a few days. Jake has broken his foot twice in the past so I am nervous about this, but both times he fell and I don't know of any specific fall this time. We're going to keep him in his old braces for a few days and see if it gets better.

Tomorrow I am taking Jake to the Children's Hospital at 2 to start his 24 hour EEG. This is where they put leads all over his head to measure brain waves and look for seizures. They will also have a video camera on him, so that if there is an event then they can see what he was doing at the time. He will be able to get out of bed, but not leave the room. Jake is very sensitive about having his head touched, so I am really dreading it. It's going to be very difficult to keep him entertained and keep him from pulling all the leads off. I also just realized that I will have to pump multiple times while we're there. Hope they don't get that on the video camera. Please pray that it will not be as bad as I am expecting it to be. Thanks, Elizabeth