3 Months Old

Lynnea is 3 months old today. Her lungs are still not as clear as the doctors would like, so respiratory therapists are suctioning her out freaquently, and "gently" thumping on her chest to loosen up any mucus that is in her lungs, which she hates. It is so hard to watch them do this, knowing that it hurts her when they do (because of the breathing tube, you can't hear her cry, but her eyes fill with tears, and she curls up her fingers and toes, and her blood pressure goes up). They giver her extra pain medication before they do this, but it still hurts. I just keep trying to tell myself that they have to do this to make her better. The good news is that, when they aren't doing mean things to her like suctioning, the amount of pain medication that she needs to stay comfortable is decreasing, and she is remembering to do some breathing on her own. Hopefully within the next day or so they will be able to remove the breathing tube. She is also doing well tolerating her feedings -- she is currently getting 13 cc's per hour through her G-tube, and at 11pm they will increase it to 15 cc's per hour. She has been keeping her blood pressure within the acceptable range on her own today without the use of medication. Her nurse earlier today said that within the next day or so she might be stable enough for me to try holding her -- personally, I don't know if I even want to attempt this until after they remove her chest tubes, but we'll see.

Concerned about Saturations

Throughout most of the day, Lynnea was doing very well. This evening, however, her blood-oxygen saturation levels dropped down into the 50's (right now her doctors want her levels to be between 65-75%) and the doctors can't figure out why. They did two echo cardiograms to check to make sure that her shunt was not clogged. Both echos looked good, so the doctors think that the problem probably has something to do with her lungs. They didn't give any specific problems that they are concerned about, but they did do chest x-rays to see what's going on. They increased the amount of oxygen that she is on, and said that they will "play around with her ventilator" for awhile hoping that it helps. Her saturation levels began to go back up on their own, but the doctors are still trying to figure out what made them drop in the first place. Hopefully it's nothing serious.

On a completely random note, nurse Brenna completely made my day by taking out the trash in the family lounge. Here's the story behind that. . . Corey and I wandered over to 5A to use the computers in the family resource center and we ran into some of our favorite nurses who all wanted to know how Lynnea is doing, and when they can expect her back on their unit, etc. Well, we got to talking and we complained to Brenna that the worst part about sleeping in the family lounge is that by the middle of the night, the trash is really stinky. She said, "well, why don't you just move the trash?" So, we told her that there isn't really a good place to put it, and that we didn't feel right just moving stuff around like that. So, she replied, "well then, I'll move it -- I'm a nurse, what are they going to do, fire me?" She followed us out to the family lounge, moved the trash bins to the other side of the kitchen area, and while she was at it, decided to just put new trash bags in and take the old trash to the dumpster. Way to go Brenna!

All Closed Up

Dr. St. Louis did another wash out this morning on Lynnea and everything looked good. He closed up her chest, and is very happy about the results of her surgery. The breathing tube and chest tubes will remain in for a few more days. They are continuing to decrease the amount of oxygen she is getting, and so far she has been doing great with that.

Another Update

Lynnea has remained stable all day. Dr. St. Louis still seems pretty confident that he will be able to close her up tomorrow. They began feeding her through her G-tube this afternoon. They are giving her 5 cc's of breast milk per hour right now and she seems to be tolerating it well. She has been waking up a little bit occasionally now, but now this is a good thing -- she wakes up enough to move all of her limbs a little bit, and then they give her more pain medication just to make sure she stays comfortable. The fact that she is able to move is a good indicator that her brain is still working well (this is a big concern after depriving it of oxygen during the surgery, and giving her so many different drugs that could potentially cause some brain damage). We are praying that things continue to go well for her.

Remaining Stable

We checked on Lynnea a few times through the night. She remains in stable condition. At 3am, they were having a difficult time keeping her completely sedated -- she kept trying to wake up and look around. The nurses assured us that she wasn't feeling anything, but they continued to adjust her medications so that she would continue to sleep like she should. Since then, this hasn't been a problem. At 6am, they were giving her a little bit more blood because she had lost a little bit more, but nothing unexpected. They were also a little concerned at the time that they were beginning to see some clots in her chest tube and they were worried that her blood was clotting too much and might clog the B-T shunt that had been placed, so they gave her some blood thinners. Since then, this seems to be fine. They are beginning to ween her off from some of the drugs that she is on, and are beginning to cut back on the use of the ventilator a little bit. At this point, the plan is to watch her closely today, and if she remains stable, they will probably do another wash out tomorrow, and if everything looks good, hopefully they will be able to close her up at that time. I have been in to peek at her a few times, but, even with a blanket covering everything but her head, I have a hard time looking at her right now. Please continue to pray that she continues to remain stable, and recovers the way that she should.

A Bedtime Update

Lynnea was finally moved up to the PICU around 7pm -- they were in the process of finishing up with her in the OR when she started bleeding again, so they kept her there for an extra hour or so to keep an eye on things. Her bleeding has slowed down to a reasonable amount -- she's loosing 10-15 cc's per hour now, as opposed to last night when she was loosing 100-200 cc's per hour. She's been pretty stable since they moved her out of the OR, so I think I'm comfortable enough with the situation to try to get some sleep. Hopefully I won't have to update this again before morning. :-)

Out of the OR

Dr. St. Louis decided to go ahead and do the repairs and restructuring on Lynnea's heart today. He talked to us about an hour ago telling us that he was finished working on her, and that they will be moving her up to the PICU sometime soon (she's not here yet). He said that everything went well, but, just like last night, she will be watched very closely, and they will continue to give her blood for as needed. We won't really know how things turned out until after some of the drugs they used during the surgery wear off, and until she stabilizes again. During this surgery, they had to place her on the heart-lung machine again, and her heart was completely stopped for about 20 minutes. Even though all of the news today so far has been good, we will, of course, continue to worry until she is stable. Please continue to pray for Lynnea as she struggles through this time.

Into the OR

We were just told that they will be taking Lynnea back to the OR in a few minutes. The stitches that Dr. St. Louis put in during the night to stop the bleeding were effective, but he doesn't like where he had to put them. He will need to replace them and do some more repair work on her aorta, specifically the area where her PDA used to be. He's not sure whether or not he is going to take the stitches out and continue to restructure her aorta right now, or whether he wants to wait a day to let her continue to gain some strength before he attempts anything else because for the moment she is stable. The concern that he has about waiting for another day is that the pressure in the right side of her heart (her good side) is higher than he would like, and he is afraid that if he waits, it may cause more damage to her heart. As always, I will continue to update this as we learn more, and as decisions are made.

After the Wash

Dr. St. Louis completed the wash that he was doing on Lynnea to see where the bleeding was coming from. He put a stitch in that will hopefully help control the bleeding. In the morning he wants to bring her back into the OR just to get a better look at what's going on -- he says that he just can't get a great look at things up here in her room. We will keep everyone updated when we know more.

2:30 AM Wake-up Call

Good morning all. What? You were not woke up by a nurse saying the doctor had to talk to you? This is Corey, by the way. The nurse came and woke us up after about 2.5 hours of sleep saying Dr. St. Louis wanted to talk to us. He said he wanted to do a wash out. Which from the very brief explanation is basically what it sounds like, he wants to clean up the area and see if he can tell where it is bleeding and put a stitch in. Her bleeding hasn't got any better. They have had to giver her blood non-stop to keep her blood pressure up. I am posting this here because they told me to go wait in the waiting room while they did this. Tina is in the lactation room doing her thing. While doctor St. Louis didn't have us sign a consent form and told another doctor it wasn't needed, a third doctor still filled one out and told me that basically normal operating problems could happen with doing this. More bleeding, chance of infection, and what not. Doctor St. Louis' bed side manner is still as impeccable as it has always been, telling us "Do as I do and wake up." If anything goes wrong Tina or I will be back to write about it. Otherwise everything is doing okay. Thanks to everyone who is praying for Lynnea.

Corey

Update on Lynnea

Lynnea's surgery began at 8am and they were finished and moved her up to the PICU at 7:30pm. Needless to say, it was a very long day for all of us. The surgery itself went OK; the stent was more difficult to remove than they had anticipated, but overall things were fine. She was on the heart-lung bypass machine for about 4 hours; her heart was completely arrested for about 60 minutes, and her brain was deprived of oxygen for about 3 minutes. They were able to reconstruct the aorta close to the way that they had planned.

Even though she is no longer in the OR, Dr. St. Louis explained that she is not out of the woods yet. She is still bleeding, so they are continuing to give her blood. Her blood-oxygen levels are a bit lower than they would like right now. She is still surrounded by doctors and nurses, which is never really a good sign. I have not been in to see her yet because I am extremely squeamish, and Corey says that I really don't want to see her looking like this (he's been in to check on her regularly). I will go in as soon as she is stable enough for them to cover up her chest so that I can handle seeing her.

The Norwood Procedure

Here is a description of the procedure that Lynnea will have later this morning (yes, I'm posting this in the middle of the night because I needed to do something while the people from vascular access are putting IV's in Lynnea). The top picture is a picture of what Lynnea had done during her first heart surgery. She had the stent placed in her PDA (green), and bands placed on her pulmonary artery (purple). During the Norwood procedure, her stent will be removed, and the bands will be removed (yes, they are going to completely undo everything that they did in the first surgery). The second picture is a picture of what they will do today. They will be reconstructing her aortic

arch. The red lines on the drawing indicate what this will look like when they are done. Her aorta (blue) is small, and at one point becomes very narrow (the yellow area), so they take her pulmonary artery and combine it with her aorta, so that the aorta is big enough to handle all of the blood flow out from her heart to the rest of her body. Her PDA (green) will no longer exist. A B-T shunt (brown) will be placed between her aorta and what's left of her pulmonary artery in order to provide blood flow to her lungs. In addition to this, the hole that she has between her Right Atrium (RA) and Left Atrium (LA) will be made permanent (this hole is her PFO - orange on the drawing).

Dr. St. Louis (her surgeon) says that he thinks things should go well, but he is a little concerned about the fact that her valve between her Right Atrium and her Right Ventricle has been leaking; he says that sometimes this is an indicator that things may not go as well as he would like. He is also concerned because her Right Ventricle has been working very hard and has become a little bit thick and stiff, which can also lead to problems.

During the surgery, Lynnea will be placed on a heart-lung bypass machine. There will be approximately 4 minutes when she will have to undergo complete circulatory arrest; during this time there will be no blood flow to her brain.

After the surgery, her chest will remain open for at least 2-3 days, or until the swelling goes down enough to close it up. During this time, we won't be able to hold her. If all goes well, she will spent about a week in the PICU, and then a few days in 5A before she will be able to go home. Dr. St. Louis explained that there is about a 10% mortality rate with this procedure (if we had done this procedure on Lynnea as a newborn, the mortality rate would have been 15%), and he says that there is a 3% chance that she could have a stroke.

Keep Lynnea in your prayers today as she goes through this major surgery. Her surgery is scheduled to start around 8:30am. From the time they take Lynnea to begin anesthesia, to the time when we can see her again in the PICU, will probably be between 6-8 hours. The actual procedure itself typically takes 4-5 hours. I will post an update later today, after the surgery is complete.

Extremely Frustrated

At 5pm today we were told by Dr. St. Louis, Lynnea's surgeon, that her surgery would be on Tuesday morning, not on Monday morning like everyone had been telling us all weekend. Apparently, when all of the other cardiologists decided that her surgery should be done on Monday, they forgot to ask Dr. St. Louis if this works for him. Obviously, Corey and I are both extremely frustrated with the complete lack of communication that goes on around here.

In the Hospital Again

This morning Dr. Gruenstein called us and said that he had looked at the results from Lynnea's echocardiogram that she had done on Wednesday, and he didn't like what he saw, so he told us that we needed to come and stay at the hospital until her surgery, which he was going to push up to Monday instead of waiting until Tuesday. So, here we are, back in our room in 5A (yes, the same room we were discharged from less than a week ago) just hanging out here over the weekend so that they can monitor her until her surgery on Monday morning.

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.