Tuesday, Instead of Wednesday

Yesterday we went in for Lynnea's Pre-op exam, and, due to a change in Dr. St. Louis' schedule, she will be having her surgery on Tuesday, Jan. 27, instead of on Wednesday.

We are enjoying our time at home as a family, even though it is sometimes hard trying to re-establish routines, etc. knowing that this is only a temporary situation. Ashlyn continues to enjoy helping with Lynnea, and is excited that her baby sister is at home with us. She talks about Lynnea going to the hospital to "have her heart fixed" and she is concerned about the "owies" on Lynnea's tummy (she is mainly referring to Lynnea's G-tube). We explained to Ashlyn that Lynnea's G-tube is called a button, and that we give her food through her button. Ashlyn accepted this explanation, but now keeps telling us that Lynnea has a "magic button" like Captain Feathersword on the Wiggles. I've given up trying to correct her on this, but I do have to insist that she doesn't push Lynnea's magic button. So far, she's been good about not touching it.

Temporarily Home from the Hospital

This morning Lynnea was discharged from the hospital because the doctors feel that she is stable enough to stay at home until her next surgery. Her next surgery is scheduled for Wednesday, January 28. At this time, it sounds like they are planning on performing a traditional Norwood procedure. When Lynnea had her first surgery, Corey and I had the choice between letting them perform a Hybrid-Norwood, which is a very new procedure, or a traditional Norwood. The traditional Norwood procedure involves reconstructing her aortic arch. I will give more details (hopefully with pictures) closer to the time of her surgery.

10 Things I Hate About the Hospital

A decision still hasn't been made about when Lynnea will have her next surgery, or what procedure will be done. Since I have had a lot of time sitting around at the hospital with not a whole lot to do in the past week, I decided to come up with a top 10 list of things that I hate about the hospital. So, here you go.

10. A lack of hot water. I understand that not having super hot water in the bathrooms is for my own safety, but I'm getting tired of taking lukewarm showers.

9. The "privacy" curtains in all of the patient rooms. Well, more specifically, the pattern on these curtains is really awful and bothers me a lot. You would have to see the curtains to understand.

8. The lack of privacy. I've given up on even putting up the "Mommy is pumping, please do not disturb sign" on the door when I have to pump because it seems to be an invitation for everyone to desperately need to come into the room.

7. The new monitors. About a week before we were discharged last time, the hospital replaced all of the monitors in the rooms with new ones, and now no one seems to know how to make them work properly (although Corey and I are pretty good at answering any questions about them because we've sat through the in-service on them a couple of times now.)

6. The food. I know, it's hospital food, and I shouldn't have high expectations.

5. The lumpy cot. I admit that the lumpy cot really is a step up from sleeping on the pull-out chairs, but not by much. . . not that it's possible to get a "good" night's sleep anyway. . .

4. 4am vitals. I'm not really sure why it's necessary for the nurses to wake my daughter up at 4am to check her vital signs. . .

3. 6am weighing. I'm even more clueless as to why they think that waking her up again at 6am and getting her naked in order to weigh her is also necessary (although I have to give credit to the few nurses that have been willing to weigh her and check vitals all at the same time). . .

2. 7am blood draws. As if getting up at 4am and 6am weren't enough, the lab techs think it's great to come in and turn all the lights on at 7am while loudly announcing "I need to take some of your baby's blood."

1. The phenomenon that I can only call "hospital time." What I am referring to is the fact that, in the hospital, time seems to function differently than everywhere else on the planet -- for example, when the resident doctor comes by and says that the rest of the cardiology team will be doing rounds "in a half hour or so" you shouldn't expect them for at least an hour and a half (unless of course it's time to pump -- again, just stick a sign on the door and the doctors are sure to arrive within five minutes), or another example would be "we'll have a plan for your daughter by next Monday or Tuesday" . . . well, it's now Thursday, and we still have nothing.

Still No News. . .

Lynnea's viral screen came back negative, which is nice to know. We still don't know what the plan is as far as her next surgery goes. The doctors are still discussing it, and still looking for other opinions on her situation before they make a final recommendation. They are still planning on probably doing something early next week.

In Isolation

Yesterday we were finally moved out of the PICU to a room on 5A (there weren't any beds available on Friday, so we spent an extra night in the PICU). Lynnea was running a low grade fever after her heart catherization, and she has had a cough, so, just as a precaution, they put her in isolation until the results of her viral screen come back, which will take a few days. This is not really a bad thing because it means we get a private room, at least for now. Nothing else has changed since Friday, and we still won't know what the plan for her is until tomorrow or Tuesday. In the mean time, here's a cute picture to enjoy (it's one that I took while we were still at home, but I just hadn't gotten a chance to post it).

Unusual and Impressive

The team of cardiologists met today to discuss Lynnea's situation. Her case is "unusual and impressive" (yes, that's exactly what they said about her). They were unable to come to any sort of consensus and are unwilling to make any recommendations at this time. They have e-mailed the cardiologists in Cleveland, OH, asking for their opinions on the situation because that is where the Hybrid-Norwood procedure that Lynnea had originated, so the doctors there have seen more cases than they have here at the U of M (remember, Lynnea is only the 4th child to undergo this procedure here). As of this morning, the doctors in Cleveland were also unable to come to any sort of agreement on what the next step should be. Dr. Gruenstein says that the one thing that everyone is in agreement on is the fact that something needs to be done soon. He says that they will make a recommendation on Monday or Tuesday and we'll go from there. Due to the fact that we live in Zimmerman, and the hospital in Princeton is not equipped to deal with Lynnea if something were to go wrong while we are at home, the cardiologists here felt that it would be best for us to stay at the hospital until the next procedure.

On a lighter note, here are some pictures of Ashlyn taken today. While visiting Lynnea in the PICU, she desperately needed a sticker, which they almost always have available at the nurses' station. I told her that she could have one, but then she began demanding to have two. I told her no, and she began to whine about it. Nurse Tiana (nurse T is what everyone calls her) yelled at me for making Ashlyn cry and told Ashlyn that she could have whichever stickers that she wanted. In the end, Ashlyn ended up with 5 stickers -- she probably would have taken more, but that's all she really had room for on her shirt. Continuing in this spirit of excess, at dinner Ashlyn decided that one straw was not enough, so she helped herself to three. It was pretty funny watching her drink from all three at once.

After the Heart Catherization

Lynnea is recovering nicely after her heart catherization. She will spend the night in the PICU, and will possibly go home tomorrow. Unfortunately, even though performing the heart catherization allowed the cardiologists to see what is wrong, they were unable to fix the problem with this procedure. The stent that Dr. Gruenstein placed in Lynnea's PDA during her first heart surgery is partially blocked; essentially, her PDA is trying to close itself. This is not a good thing -- she needs that ductus to remain open in order for her to survive. In order to correct this problem, she will need to move on and have the second stage open-heart surgery very soon -- sometime within the next two weeks. Her team of cardiologists will discuss the situation in the morning and decide whether she is big enough, and strong enough to handle both the reconstruction of her heart that they need to do, and the re-routing of blood flow from the upper half of her body directly to her lungs at this time, or if perhaps she would be better off if they did the reconstruction now, and waited and did the re-routing of blood flow later in a separate procedure. We should have a better idea of what they are planning on doing after we talk to them sometime tomorrow morning.

Monday Doctor's Visit

Today Lynnea went in to the U of M for her weekly check-up and echo. The news was mixed. The bands that were placed on her pulmonary artery still look good (there was a slight concern last week that they are getting a little tight), but there is some leaking going on with the valve between her right atrium and right ventricle (the top chamber and bottom chamber on the right side, or "good" side, of her heart). This is a symptom of heart failure; Dr. Gruenstein worries that the right side of her heart is working too hard and is not handling the strain very well. There also appeared to possibly be some blockage of the stent that was placed in her PDA. This blockage could be the cause of the extra strain in the right side of her heart. On Thursday we will bring her back to the hospital and Dr. Gruenstein will perform a heart catherization -- he will send a very small camera up through a vein in her groin to look and see if there is anything they can fix to improve her heart function until the second stage surgery. He says that they have seen this problem with one of the other three patients that also had a Hybrid-Norwood procedure, and they were able to easily fix the problem by placing another stent. In the event that they are unable to find the cause of the problem and fix it on Thursday, we will be looking at going ahead and having the second stage surgery performed very soon (much sooner than any of the doctors would really like) and hope that Lynnea is able to handle it.

Twinkle Twinkle Little Star

Ashlyn is adapting to having her baby sister at home. Most of the time she is very nice to Lynnea, and she likes to be very helpful. She likes to do "big favors" for Mommy all the time -- things like giving Lynnea her Nuk, covering Lynnea up with her blanket, and bouncing Lynnea in her bouncy chair. She also likes to sing songs to Lynnea -- here is a video of Ashlyn singing Twinkle Little Star to Lynnea. Lynnea seems to really enjoy Ashlyn's singing -- watch closely for Lynnea's big smile.

Beautiful Girls

My sister Megan enjoys using my daughters as models to practice her photography skills, so all of these pictures are courtesy of her. She typically asks my permission before doing little mini photo shoots with my girls, and always asks for my opinion of the pictures afterwards. These are some of my favorites from her most recent endeavors. She told me that she had taken a few "naked" baby pictures of Lynnea,

and asked me if this was OK. At first I looked at her kind of funny thinking "Of course it's OK -- pictures of babies in nothing but a diaper are almost always super sweet and cute" and then she showed me the pictures, and I understood why she had asked. For just a moment, I had forgotten all about all of Lynnea's scars and markings. When I saw the pictures, I admit that at first I was a little disappointed -- not at Meg's skills as a photographer, but at the thought that Lynnea will never have those super cute "naked" pictures. I confessed these thoughts to Megan and she said that she could always switch the pictures to black and white using Photoshop, and then Lynnea's scars would hardly show at all. This is probably true, but after spending a little more time looking at the pictures, I am able to see all of Lynnea's beauty, even with her scars, and her feeding tube. These are her battle scars; she earned them in a battle for her life. I hope that as she grows older, she can always look back at them with pride. I hope that both of my little girls always know how beautiful they really are.