This cartoon is pretty accurate: blog cartoon

We were very eager to get to the NICU today. Tobie was really missing the babies. When we arrived, Paige’s isolet was open and she was surrounded by a team of nurses. She was just having one of her mood swings where she d-satted. According to the nurse practitioner she was doing spectacular until that very moment. She quickly stabilized and the nurse practitioner and Neonatologist pulled us aside to talk. They wanted to do a spinal tap on Paige to rule out meningitis.

Paige had responded very well to the antibiotics they had given her for the Group B Strep, so they were now worried that she might have had a more serious problem. The deal with babies is they can’t rely totally on blood cultures because they can only draw a little blood at a time and there is a good chance they might miss the bacteria all together. So doing a spinal tap is the only way to be 100% sure she has or or doesn’t have a bad case of Step. What choice do we have? If they don’t do it, it affects treatment. Every decision we make has a pro or con. So we chose to do it.

Paige did pretty good with it, all things considered. It’s a pretty traumatic procedure if you ask me. They have to hold her upright and stick this big needle into her back. She didn’t look happy. We were just overly concerned because the last time we did this procedure was on Kaylee who had a very bad reaction to it and the next day she had the brain bleeds. Now the procedure wasn’t the direct cause of those bleeds, but it makes you wonder. Anyways, we just got the first results back from the spinal tap and it looks good. They’ll have the final results in a few days, but she should be fine.

In other news, I got reprimanded for turning some alarms off. Sometimes the nurses are so busy the alarms just keep on ringing and ringing so I thought I would help out. Ooops, that’s a no no. They haven’t banned me yet from the NICU, but it’s a matter of time before I piss the wrong person off! To make amends, we bought a rocker/glider to donate to the NICU. Today was probably the worst day for noise in the NICU yet. There are a few too many full term babies in there. So much crying combined with alarms going off, our babies did not like it one bit. They kept dropping their sats from all the noise and Tobie could only hold Cole less than an hour because he was getting pissed at all the ruckus. We didn’t hold Paige today because she was pretty wiped from the spinal tap.

We are family!

Eric has been after me for a while to post on the website, but he’s been doing such a thorough and amazing job, I’ve left it up to him. Also with all the emotional stuff we’ve suffered through, I can’t put into words our feelings as well as he’s been able to. I will say that the last two months have by far been the worst and simultaneously most blessed two months of my life. We’ve been blessed with three beautiful children (two now) and I’ve never felt closer to Eric. Not to mention the friends and family who have been there when we’ve needed them. I wish things were different and our Kaufman family didn’t have to be in this experience and that’s the part of this story that makes it the worst two months of my life. But today was a wonderful day so I don’t want to visit that dark place right now.

After a night of not sleeping and being sick to my stomach over our little boy, I drove like mad to the hospital this morning and broke down for the hundredth time to our supercool neonatologist (he laughs and cries right along with us). Luckily as Eric already posted, the results of Cole’s headscan were okay. I could finally breathe. To make the day even better– I was able to hold both Paige and Cole for two hours each today. So Paige was first. We had a great time snuggling together until we hit the 2 hr mark, then she starting fussing. Turns out the reason for her fussiness was that she pooped unbelievable amounts and was leaking through her diaper. Somehow she managed to not poop on me which was really lucky because her poop was not only really stinky but was really gross looking. We managed to clean her up only to have her soil her diaper again like 20 minutes later. What great bowels!! It’s really great to have her poop that much because it means she’s digesting her food well. Remind me in six months when she’s home and still pooping like crazy how great it is! Next up for the Kangaroo cuddle was Cole. He was hilarious. The nurses placed him on my chest about breast level and he crawled all the way up my body until his head was under my throat. The nurses moved him and again he crawled his way up under my throat so I figured that he either really likes that spot or he was trying to get me to stop humming to him (I know better than to try singing to him, I thought humming would be more bearable).

So Paige’s labs didn’t show any signs of infection and I have a theory behind her being up and down on her oxygen saturation’s last night. I think she had Mommy withdrawal since I was able to hold her for an hour yesterday. Once she knows that I will hold her every day hopefully she will be more stable as we get into our routine.

If I don’t post for a while again…thanks to all for your prayers and thoughts. Love, Tobie

Tobie was able to hold both babies today. Of course not at the same time. Paige did super well with it. You can really tell when the babies love it because their O2 level peaks when they are on Tobie’s chest. You just have to be prepared to sit there for a while because you can’t move when you are holding the babies. The transition from the bed to her chest is pretty traumatic for the baby. Cole’s face is pretty funny looking when he is on her chest. He looks like he is in so much agony. He frowns, he sticks out his tongue, he squirms a little. He settles down and enjoys it though.

I don’t know what it is about Paige, but they cannot get that freaking PVCC line in (that’s the central line that provides most of her nutrition). They poked Paige again trying to get the line in correctly. That makes 6 times. This is a big procedure. Typically they would leave this line in for up to 30 days before replacing. She has had it put in 6 times in 2 weeks. Poor girl. So we’ve decided not to put it in. We are going to up her feedings 1 cc every 12 hours (for those of use who do not work in a hospital, 1 ounce is ~ 30 cc). She currently is at 6 cc a feeding. She gets fed every 3 hours. She just hasn’t been gaining any weight. She has barely gained 2 ounces since being born. So far she is tolerating the feedings, so that’s a good sign. As long as they can keep upping the cc, they will not have to put the PVCC line back in. I think they will not be concerned anymore about it until she is up to 12 cc a feeding. Okay, everyone at once, fingers crossed.

Cole does have his PVCC in, so that’s good. They are going to try to up his feedings as well so he can eventually get his central line removed. The neurosurgeon came by and for some reason measured Cole’s head. She didn’t like how big it has gotten. The average head growth is about 1/2 cm per week. His has grown about 1 cm. There a lot of reasons why it could have gotten bigger, most of them benign, but obviously we are extremely worried it’s something bad. I’m just hoping he takes after his father with the big head. We are getting an ultrasound tomorrow to have a look see. I don’t think we can take anymore bad news this week. Fingers crossed again.