We almost got kicked out of the hospital...

by our nurse. Not because we were misbehaving but because we saw Judie at 11:00 last night, 6:30 this morning, and again tonight. She informed us that she was going to kick us out if we didn't go home and rest. So we left at 9:30. Wonderful nurse #2, Dava (another one of our primaries): Emma came back from surgery on a temporary ventilator and went to NICU 1 because of that. Dava requested that she be immediately be moved back to NICU 2, even though her supervisor was questioning whether Dava would be willing to care for a post-op baby in addition to two others. Dava INSISTED that she take care of Emma. Wonderful nurse #3, Dawn (our PRIMARY primary): Dawn called today to check on Emma because she couldn't wait until tomorrow to see her. She had been thinking about and praying for Emma all day and wanted every last detail about today. She already had a mental to-do list of things to take care of and check on for Emma tomorrow. We went through a lot of bad nursing experiences, but oh, how God has blessed us with some great ones, too.

So let me back up to this morning. I woke up at 5:00 am, and the first thing that popped into my head was, God, please comfort our daughter - make her happy, comfortable, and not hungry. Emma's last feeding was at 11:30 last night, so we were certain she'd start screaming during the early morning hours and not stop until she went under for her shunt surgery. When we got to the hospital at 6:30, we received immediate proof that God answers prayers - our daughter (who has a PERFECT internal clock set to tell her to scream for food every four hours, on the dot) was having a pretty decent morning and continued in her relatively good mood until we got her on the transport bed to go to the OR. At that point, she was in a great mood because she was happy to be moving and seeing a change of scenery as we navigated the halls. I had a hard time keeping it together on the way down to the OR and back up again. Once we got back to her room, I had a little breakdown with Russell. I just needed to get it out of my system. A couple hours later, Dr. Troup came to see us and give us good news about her surgery.

Dr. Troup had a pretty big audience in the waiting room - we have some incredible family and friends who waited with us this morning. Emma's shunt went in just fine, and then he cleaned up her back wound a little. I now understand what it means to clean it up, but if you had shown me before and after pictures of this wound 3 months ago, I would have thought it was worse now. There was a bunch of...stuff, for lack of a better word, that had to come out. The dressing technique and medicine being used was slowly doing that, but Dr. Troup got impatient and just physically cut it all out himself today. Fine by us. Now, the bottom of her wound is a REALLY deep hole, but the tissue in there is supposedly healthy tissue. The wound nurse is coming tomorrow to take a look at it, too. The top of her wound still looks pretty great, and we could see a great improvement from yesterday to today.

I asked Dr. Troup some questions and didn't get any very specific answers. He speaks in generalities...but I already knew this. For example, I asked, "When will we see a visible difference in the size of her head?" His answer was, "I don't want the fluid in her head to completely shrink down so that there's space in between the plates in her head. I really want her to grow into her head." Ok, so I get that...still not an answer to the "when" part of my question. We asked when she'd be lying on her side, her tummy, her back, etc...still no great answers. The nurses aren't even sure, either. Dava DID find some notes that said Emma could be on her back, but this won't be for really long periods of time (only 30 minutes at a time, I would guess) because the wound is still so delicate. This is something I'd like to get the wound care nurse's input on as well. One thing we do know for sure is that Emma has to stay flat, no matter what body surface she's lying on...ears, shoulders, and hips have to stay level for 2 weeks.

2 weeks...that leads me to my next point. When we got back into Emma's room after her surgery, Dava informed me that Dr. Troup ordered me and Russell to do the dressing changes. Let's get one thing straight right now: we are NOT going back to the hospital for the 4 am dressing change. We'll gladly do the 4 pm dressing change. This is significant because Dr. Troup wants us to go home soon! Russell changed the dressing today:



Side notes about this picture: (1) Emma's hair is not naturally red/orange - that's Betadine still in it; (2) the incision on her tummy is from the shunt surgery. Sorry if it grosses anybody out. Emma won't be in the hospital for 2 more weeks, but she might be going home this weekend or early next week. But this is still a wait and see situation.

Russell and I have different feelings about today's surgery. Russell feels positive, upbeat, and accomplished. I feel more anxious and scared than I did before because now we have more things to be concerned about, to monitor, and to be careful with. Plus, I thought changing a diaper on her tummy was hard - that's NOTHING compared to changing it on her side. What. A. Nightmare. I know this is a depressing and pessimistic attitude to have, but caring for Emma just got harder and more complicated. You just can't argue with that. We now have to be on the lookout for shunt AND wound complications. At home, outside of the relatively sterile (and visitor-limited) environment of the hospital. I, of course, will be praying for God to change my attitude, as I offer these feelings to Him...but it would REALLY make me happy for my attitude to change because caring for Emma gets easier with the blessing of quick and easy healing!

Emma was so happy on her side today and tonight that we didn't even get her up for her nightly weigh-in. She weighed 10 pounds, 2 ounces last night...we're not concerned about her gaining weight, so missing one weigh-in isn't hurting anybody. In fact, there was a chance that it could take a full day before she could start eating after her surgery, depending on how her digestive system was responding. One day? Make that 2 hours. She ate a full bottle 2 hours after her surgery. That's my little piggy! Here's a picture of her right after she got back from surgery - happy as can be and loving life on her side. It's hard to tell that she's actually happy because her eyes are HUGE at the thrill of a different perspective and being able to move an arm freely.



What a day, what a day. These next few days are going to be big ones as well - lots of position changes that we've been waiting on for 6 weeks, her PICC line has to come out before the antibiotics are done (long story), a new perspective on wound care, waiting to see if she's less fussy with a decrease in pressure on her brain. Stay tuned...