Wednesday, August 25, 2010

Morning News and Pictures

I knew I was due for a disappointing phone call. Natalie is OK with her oxygenation but she did not tolerate the power wean. Her CO2 was up and they had to return her to previous settings. Blah.

She is being moved from Lasix to more gentle diuretics. This was attempted a week ago and there were some bumps along the way. She needed a few extra doses of Lasix while the new drugs were building up in her system. Someone obviously has a short memory because here she is with hazy lungs on the X-ray again. Gee, I can't believe she didn't tolerate it better this time. There are also small areas of collapse, but those should reopen with changing her position. The nurse thinks she would benefit from being in a bouncy seat and sitting more upright.

They have not rounded on her yet today so no decisions have been made regarding the Lasix.

Yesterday she had her first vaccinations. I was not there because I had no idea they were doing them so soon. It broke my heart. For Natalie a few shots really is not a new experience for her, I mean the child has had cut downs and a lumbar puncture. Her foot is stuck at least once a day. I imagine in her book vaccines are small potatoes. For me it is one more thing I am not there to comfort her through. One more piece of normalcy lost. Then again, it is just vaccinations and there are many more important things going on right now. If I let myself get caught up in all the differences between parenting a healthy child and parenting a very sick one I will be too depressed to get on with things.

There is a rumor that Natalie is being presented at the fellows conference today. I knew her case was going to be presented but thought it was next month. I debated asking if we could attend but decided against it. I already know what has happened and I do not want to sit in a room while my baby is discussed in a purely clinical manner. I wish our favorite neonatalogists were going to be in town for it. This is supposed to be a meeting of the minds and some of the greatest minds will be missing.

There is another family meeting tonight. The future has a lot of unanswered questions and we are trying to fill in some blanks on where we go from here. Most of our conversations with the doctors have been going in circles. "If we do this, then this will happen, but we need this before we can do that, but if she needs whatever should it happen now or later, etc." I would write it all out here but want to spare you the frustration and will wait until some actual decisions are made.

NOW on to the good stuff.

Natalie can wear clothes again! Everything has to have snaps since we can't fit clothing over her head and the leads need opening to come out of. She also has to wear light fabrics since she overheats quickly. With that in mind Annie and I went shopping for baby sister. The nurses told me not to go crazy and she can always wear hospital shirts. Uh huh. I have been waiting and waiting to shop for my little girl. As it turns out, we ran into a NICU nurse at Carters. She was there with her mother and sister. They got into the spirit and when they found things that would work for Natters they would hold it up for me to come find. Let's just say Natalie will not be naked anytime soon.

Showing off her new jammies....she wore them less than 10 minutes before getting the pants dirty. I'll be discrete and not say how it happened.....

(Yes, Natalie's eyes are crossed in this picture. That has been happening a lot and we do not yet know the significance.)

One of her primary nurses also suggested that we bring in a Boppy. She can't have one in her current crib, but she is on the top of the waiting list for a full sized one (then she can have a mobile and crib toys!!!). The Boppy is used for positioning and letting her stay more upright. We do have one from when Annie was a baby, but it has been in our attic for a few years and I wanted one that was absolutely clean. Last night we went Boppy hunting (goodness, I am not out to endorse that company, it just happens to be what the NICU asked for) and Annie picked a cute one for her sister. She also brought hers out of storage and has been sleeping with it.

I love being able to buy things for Natalie. Any little bit of normal parenting is such a thrill for us. When I was pregnant with Annie a friend sent a Boppy as a gift. It was the very first baby item we had in our house and I kept walking by to stare at it. A baby was coming! Now I look at Natter's Boppy and think of how proud I will feel carrying it into the NICU. Natty needing normal baby gear. I have such gratitude for the little things. Even Steve gets caught up. He is normally the voice of reason in these matters but last night he encouraged me to spend a ridiculous amount of money on muslin blankets for her. They allow swaddling without overheating, so there is my justification.

I also get to hunt down some toys for her now. She still has her loyal giraffe Sophie (one nurse is obsessive about always keeping it the corner by Nat's face. She thinks it brings good luck and who can dispute her? Sophie is Natalie's little mascot.). Other than that her crib is pretty bare. Natalie has never been awake enough to notice and her bed had to be kept clear for medical reasons. Off the oscillator she can wake up and they can lighten up.

The NICU does not allow plush toys because of health concerns but I am determined to find cute all plastic toys. Based on Natalie's new favorite plaything I don't think she will mind.

Nat is constantly reaching for her ET tube. Did I tell you about the day her nurse was working with the other baby and the father happened to be looking over at Nat? He asked if Natalie was allowed to pull on her tube and the nurse said "NO!" and ran over just in time. I think part of Natalie's ET tube obsession is that she has a sense it is annoying her and wants it out. The other side is that she is a baby and all babies bring their hands to their mouths. When she is content and reaching for her tube I think it is just her normal exploration but still too dangerous to be allowed.

Whatever her intention, we have to discourage her from touching the tube. Sometimes the tube itself is covered and sometimes her arm is weighted down slightly with one of those positional frogs.

A few days ago Natters would not settle down and kept trying to hold her ET tube. Her nurse had a genius idea and make a loop from a length of plastic tubing. Natalie immediately relaxed, held tight to her tubing a fell soundly asleep. Nurses keep throwing it away on the poor baby so the next one will have to be labeled in some way.

She loves that thing. I may skip Toys R Us and head to a medical supply company.

That nurse who created the tubing toy also gave Natalie a milk treat. She put a little milk in a syringe (no needle obviously) and put a few drops on her tongue. It is not enough to worry about swallowing but it gives her a taste. Natalie was very interested. The nurse then put a few drops on her lip and when Natalie would stick her tongue out her eyebrow would shoot up in surprise. The idea is to give her some pleasant associations with her mouth since so far her life has taught her that nothing good comes from having your mouth touched.

My goal for the day is to focus on Anneliese and relax about the morning setbacks. I need to do a better job of managing the stress and anxiety of our life so that Annie has more time with her "normal" mommy. Right now she is wearing my nursing cover and pretending to be a waitress. That is a fine way to spend the morning.

Hoping to have a plan to update you with tonight!


  1. I'm excited for Natalie to wear clothes! What a great thing. She looks mighty cute in her green sleeper with the daisies. Daisies are one of my favorite flowers - they are a happy flower! I hope you and Annie had a great day together. I loved playing waitress when I was little!

  2. Suggestions. I made square,circle,heart,triangle, etc. out of that huge flat foam that has bright colors, put magnets on the back with foam glue and some had streamers that hung off it. We put them on the arms of the isolet because it was magnetic. There were always very bright things up there to look at then. Also tasty chapstick make sure its a good kind, I get mine from here because it's natural and they really truely taste good when licked by your tongue. The stuff is real food grade oil so I wasn't afried to have it on my babies lips. You can get a free sample which of course will last you forever with tiny lips. Also I brought my laptop and when my guy could sit up with the boppy prop he could watch the Eistien babies on DVD. I can't tell you how advanced he is because of the stimulation he got but that he could have missed out on had we not had those videos to connect him to a real world that is out there. I am so sorry for the scare I remmeber mine and I was standing there but it was his trach that plugged and I had to put a new one in while they bagged, talk about hands on training in the stress moment. I was a bawling mess afterward and had to go call the hubby who was hours away just so I could recompose myself. Tears heal and let you make it through the crazy stuff that your dealing with your going to be ok you can handle this and hug that Dad he feels so helpless in these times it's their nature to fix things and thats is something they can't fix which has got to drive them crazy.