Growing at Home

We have been at home for more than a week now! (This was one of my personal goals -- to be away from the hospital for at least a week this time.) Lynnea had a doctor's visit on Friday with her regular pediatrician, and today she went to the U of M for an echo cardiogram and check-up with one of her cardiologists. She is growing nicely -- she now weighs 8lbs. 5oz. Her echo cardiogram looked good -- her heart function is still good; the only concern was that the bands that were placed on her pulmonary artery are beginning to tighten a bit, but this was expected to happen as she grows. I don't know if this means that they will have to go in and loosen them before the next stage surgery, or if they will just monitor it closely and leave them alone until she is big enough for the next stage. We should know more next Monday when she goes in for her next visit at the U of M (she goes weekly now for echo cardiograms and visits with cardiologists).

A Smile for Chirstmas

"Today in the city of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you : you will find the baby wrapped in cloths and lying in a manger." Luke 2:11-12

This year we didn't put up our Christmas tree, or any of our other decorations. We didn't send any Christmas cards. We didn't buy any presents. We didn't bake any cookies. Without all of those things, I have had more time to reflect on what Christmas is all about. It's about a baby; a miraculous baby, who grew up to save all of us. It's so easy to forget that in the middle of trying to shop for the perfect gifts, trying to get all of the baking done, etc. Not having the opportunity to do those things this year forced me to focus on the real reason that we have so much to celebrate.

For me, it's about my baby too this year -- what a gift she has been, even though the past two months have been so difficult for all of us. I am amazed at how much she has changed out lives in such a short time, and how much we have been willing to sacrifice for her sake. For Christmas this year, I received one of the best gifts ever -- smiles from both of my little girls. We are thankful that we were able to be together as a family, away from the hospital. That's more than enough to celebrate.

At Home Again!

Lynnea was discharged from the hospital (again) yesterday afternoon. She had a pretty good night here with us, other than her not wanting to go to sleep until 1am, everything was great. It's good to be home, and hopefully this time we will be here for more than just a few days. Tomorrow we will work on transitioning Ashlyn back home with us -- we felt that it would be best to take a day or so to get Lynnea settled in before bringing Ashlyn home (plus there's always that fear that we will have to take Lynnea right back to the hospital, and we try to keep Ashlyn's life as stable as possible). So, we should be a "real family" again for Christmas.

Back in 5A

Lynnea was moved out of the ICU this morning, back into "our" room on the 5A wing (they were nice enough to save it for us, so that we wouldn't have to move all of our belongings). She was awake and alert for quite a while today, and the surgeons gave her the OK to start eating again. She has been doing well with her feedings -- we've started out slowly with small amounts, but she has almost worked her way back up to the volume that the doctors want her to eat in the long run. So far, she's been taking all of her food orally, so we haven't actually had to use her G-tube yet. (Go figure -- we had to put the G-tube in because she wouldn't eat enough orally, and now she wants to eat!) She has not thrown up at all since we started feeding her again, which is very good news. If things continue to go well, I am guessing that we could be home in a few days, but we haven't gotten any official word from the doctors yet on when they will send us home.

Recovering Nicely

Lynnea's surgery went well today, and now she is resting peacefully in the ICU. She will be staying in the ICU overnight, just for observation, and then she will be moved back to the floor tomorrow morning. We are very thankful that there were no complications, and hope that her recovery continues to go smoothly.

Putting in the G-tube

Nothing much has changed with Lynnea in the past few days. The surgery to place her G-tube and fix her esophagus will tentatively be on Wednesday morning at 9:30 am. I will let everyone know if anything changes before then.

Ashlyn's Accomplishment

Not much new news on Lynnea today: it looks like she might have the surgery to place the G-tube and fix her esophagus on Tuesday or Wednesday, but they're still not sure; in an ideal situation, recovery takes 3-5 days after the procedure, so there is still a small chance that we would be able to make it home by Christmas.

Anyway, I thought I should take a moment to recognize a big moment in Ashlyn's life. The other day she decided, completely on her own, to go potty on the toilet. She was at my parents' house (where she has been staying through all of this), and my mom was getting her ready for her bath. She was undressed, and she climbed up on the toilet (and almost fell in), and went potty. Since then, she has been saying "potty chair" and wanting to use it occasionally. I was really impressed with her, but at the same time, this is just another moment that Corey and I have missed out on because we're in the hospital with Lynnea. Hopefully we will all be home soon so that I can give Ashlyn the potty party that she deserves, and maybe we will have a fully toilet trained daughter.

A Moment with Will Smith

Nothing has changed with Lynnea's condition today. We still don't have a date/time for surgery. But. . . while Lynnea and I were sitting around in her hospital room today, Will Smith showed up and spent some time hanging out in the playroom on this unit, so Lynnea and I decided to go and meet him. That was pretty cool. I guess he's in town this weekend promoting Hancock and he decided to stop by the hospital. It's things like this that make sitting here day after day waiting for Lynnea to be well enough to come home bearable. We have a couple of other pictures with him, but this is the only one that was taken on my camera. He also signed a copy of Men In Black for us, which is very cool. Too bad Corey had to work today, so he wasn't able to meet him.

More Surgery

While evaluating Lynnea for the placement of a G-tube, they discovered that she has some pretty significant reflux issues, which are probably contributing to her eating issues. They are planning on doing a procedure to try to correct the problem sometime next week -- hopefully at the same time that they place her G-tube, but I don't know for sure. We don't have a definite date/time for surgery yet, probably because Lynnea still has a nasty cough, and the doctors need her to be as healthy as possible before surgery.

The Next Step

Lynnea continues to eat less than she should. Her doctors are concerned that she is not gaining enough weight, and told us to seriously consider letting them put in a G-tube. This is a feeding tube that goes directly into her stomach. It would be placed surgically, and would stay in at least until her next heart surgery. The advantage to having one placed is that we could take her home with us, but there are a number of risks also associated with it. We have until sometime next week to make a final decision on whether or not we will have one placed. They continue to try to tweak her cocktail of medications, hoping that maybe that will help with her feedings, but if that doesn't work, we don't have many options other than a G-tube. We really hope it doesn't come to that.

Wardrobe Malfunction

Lynnea is still in the hospital, she is still not eating as much as the doctors would like, and now it sounds like she is probably getting a cold. So, it looks like we'll be here for at least a few more days.

Since I don't have much news as far as her health is concerned, I figured I would share her latest wardrobe malfunction with everyone. See, as far as newborn babies are concerned, clothing is a mysterious and troublesome thing that parents insist on putting on them. During her first week at home with us after she was born, Lynnea had what I would have to call a serious wardrobe malfunction. She was laying in her crib and began to fuss, so I went to see what was wrong. I found her laying there with one hand pulled completely out of the sleeve of her sleeper and it was sticking out of the neck hole hitting her in the face. OK, so I thought at the time that it would be difficult for her to top that wardrobe malfunction, but last night she managed to do so. I woke up in the middle of the night because she was screaming, so I rushed over to her crib to see what was wrong. It was dark, and I was only half awake, so at first when I looked in the crib and couldn't see Lynnea's head, I assumed that she had unwrapped herself from her blanket and pulled a blanket over her head. Upon closer inspection, I realized that she wasn't wrapped in a blanket at all. She was wearing one of those handy sleep sacks that are one-size-fits-most, similar to the one she's wearing in the picture. The mattress of her crib was at an incline to decrease her spitting up. She had managed to pull both her her hands out of her sleeves, and then she had slid down into her sack and had gotten completely lost in it. I quickly unzipped her outfit and helped untangle her from it, and she went back to sleep like nothing was wrong.

Still No IV :-)

Lynnea continues to keep herself hydrated without needing an IV, which is the good news, but she is still spitting up some of her feedings, and the doctors still don't know why she doesn't want to eat on her own. She still has her feeding tube in -- she's needed to have it placed a few times now because she keeps pulling it out (those little fingers of hers just can't resist tugging on that thing in her nose) so, the nurses have decided that she has to keep mittens on her hands at all times to prevent her from pulling it out again. Fortunately, she's pretty tolerant of her mittens, and they have the added benefit of keeping her hands nice and warm.

Back in the Hospital

Due to the fact that Lynnea is not eating enough to keep herself hydrated, she is now back in the hospital. They placed a feeding tube again. . . unfortunately, after they fed her through it the first time, she threw up pretty much everything they had given her. For now they are keeping it in, and I think will continue to attempt to feed her through it, but if she continues to throw up, they will probably have to place an IV in order to get her the fluids she needs. I am still hoping that it won't come to that, but I am afraid that it will probably be necessary. At this time, the doctors still have no idea why she decided not to keep eating in the first place.

At Home with Lynnea

We love having Lynnea at home with us, but unfortunately, she is not eating very well, and she is losing weight. She has a doctor's appointment this afternoon, so we'll see what he has to say about it. She also goes to the U of M on Friday for a echocardiogram and a check-up with her cardiologist. Hopefully they will have suggestions on getting her to eat more without bringing her back to the hospital to have a feeding tube placed again.

Thanksgiving at the Hospital

These are pictures of Lynnea's first Thanksgiving, which she spent with me and my family at the hospital (Corey had to work all day, so he was unable to celebrate it with us). We have all had a lot to be thankful for in the past few weeks, especially Lynnea's progress.
Now Lynnea is at home with us; the doctors decided that she could come home even though she was not eating quite as much as they would like her to. It is so good to have her home, and to be able to hold her without any IVs, or wires for any monitors. She will need to go to the hospital weekly to meet with her cardiologist, and we will have home health care nurses visit a few times each week for the next month. Due to Lynnea's susceptibility to illness, and the dangers that becoming ill can cause for her, we will not be bringing her anywhere other than to her doctors appointments for a while. Her cardiologist recommends that we do not bring her to church, or take her shopping, she cannot go to daycare, she can't be around other children, she won't be able to come to any Christmas family gatherings. . . etc. Basically, if anyone wants to see her, they can visit us at home as long as they are healthy and have had a flu shot (and are willing to wash their hands and use Purell, of course). Her cardiologist recommends pretty much quarantining her until after her next surgery. I will do my best to post pictures of her on here frequently (though this is not as much fun as taking her places to show her off).

Vikings Thanksgiving

Lynnea will not be home for Thanksgiving. . . we still don't really know when she will get to come home. The doctors have not put her feeding tube back in, but if she fails to meet daily eating goals that they have for her, they will end up putting it back in. Hopefully it won't come to that. In order to come home, she needs to meet the eating goals that they set for her three days in a row, (they are setting two goals for her each day -- a hydration goal, and a growth goal -- if she eats enough to meet her hydration goals, then they don't have to put the feeding tube back in for now, but in order to come home she has to meet the growth goal consistently) and it looks like it could take at least a few more days before she will be strong enough to meet these demands.

This afternoon there was a special Thanksgiving dinner for patients and family members hosted by Steve Hutchinson of the Vikings. Ashlyn and I ate while Corey was busy meeting with doctors and other people involved in Lynnea's care. Ashlyn thought the best part were the fresh strawberries that she got for dessert (they had a chocolate fountain and a variety of things to dip in chocolate, but I conveniently neglected to show Ashlyn this, so she ate her strawberries plain). Ashlyn also thought it was pretty cool to look at herself in the balloons that were in the hallway on the way to the cafeteria, and she was very excited about the Vikings teddy bear that she received. While Ashlyn and I were busy eating up in the cafeteria, Lynnea was busy having her picture taken with one of the Vikings players and having and getting autographs. . . I have no idea which player(s) she may have met because I haven't seen the pictures yet.

Making Progress

This afternoon Lynnea's feeding tube was removed because the doctors want to see how well she will eat on her own (this picture was taken earlier in the day, before she got her tube out). She had two really good feedings this evening -- almost the full amount that she should be taking. If she keeps this up, she may be able to come home sometime soon. We are very hopeful that she may even be home for Thanksgiving, but the doctors haven't given any sort of concrete timeline yet.

Eating

On Wednesday the doctors decided to place a feeding tube down Lynnea's nose to make sure she's getting enough food because she is not getting enough from her bottle. She still has the tube and she continues to only eat about half of what they want her to from a bottle. Everything else seems to be healing nicely, and at this point the only thing that is really preventing her from coming home with us is her eating. The problem appears to be that she gets too tired to finish her bottle, so she falls asleep and looses interest in eating. Because there is no way to predict when she will start to eat the amounts that she needs, there is no talk of any sort of discharge date at this point. She has been in the hospital for two weeks now, and we are all anxious to get home and get back to some sort of routine. I miss being at home with my two girls. I miss Ashlyn a lot, and I'm sure she misses being at home with Mommy and Daddy as well, even though today when she came to visit us at the hospital, she refused to give me hugs and kisses.

Out of the ICU

This morning Lynnea was moved out of the ICU into a regular room. She seems to be doing very well. Right now the biggest thing left for her to do before she will be able to come home is consistently eat on her own. She is still struggling a little with coordinating her sucking and swallowing, so she gets tired and frustrated when she eats, and only eats a little bit at a time. But with some more practice, she should be able to handle it in the long run.

Feeding Lynnea

Lynnea continues to do very well. She is only on Tylenol now for pain (I think they still have orders to give Morphine as needed, but she hasn't needed any since Saturday). On Saturday, they began feeding her Pedialyte, and then yesterday switched over to breast milk. She has been doing OK with that. Yesterday they let me feed her two of her bottles. It is a lot of work for her to eat; she retained her sucking reflex (when they put babies on IV nutrition for any extended amount of time, there is always a chance that they will simply forget how to eat on their own), but she has a hard time coordinating her sucking and her swallowing, but she's getting better at it, and in time she will probably be OK. Hopefully, once she gets better at eating off from a bottle, she will be willing to go back to nursing, but there is a chance that we will always have to bottle feed her.

Lynnea's Heart

OK, so here is a more detailed description of Lynnea's condition. The first picture is a picture of Lynnea's heart. I apologize for not having a "normal" heart picture up here for a reference, but I couldn't find a good pic of a prenatal heart, which is the closest thing to what her heart is like. There are lots of things that are anatomically wrong with Lynnea's heart. First, her left ventricle (LV on illustration) is very small, and not very useful. Second, she has a condition called Mitral Atresia, which means that her Mitral valve didn't form properly, so instead of having a valve, she has a solid wall (this is marked in orange on the drawing). This means that it is impossible for blood to flow from her left atrium (LA on illustration) down to her left ventricle (the top chamber and the bottom chamber of the left side of her heart).

Next, her Aorta (blue in the illustration), which normally serves to send oxygenated blood to the entire body, is very narrow, so very little blood is able to be pumped through it.

Finally, Lynnea also has an "extra" hole between her right ventricle and her left ventricle (marked as the yellow area on the illustration).

In addition to these deformities, Lynnea still has, and even more importantly, still uses some of her prenatal heart "parts" for lack of a better word. Normally, before babies are born, they have a hole between their right atrium and their left atrium, called a PFO (marked in red on the illustration). They also have an extra duct called a PDA (marked in green on the illustration) that connects the Pulmonary artery (purple on the illustration) to the Aorta (blue on the illustration). These things exist because, before babies are born, their blood doesn't need to flow to their lungs for oxygenation because babies don't actually breathe before they are born. Sometime after birth, these parts close up because babies don't need them anymore. Unfortunately, in Lynnea's case, these things made it possible for her to compensate for all of the defects that her heart has.

Before the surgery that Lynnea had on Thursday, the doctors were giving her a drug to keep her PDA open. The second illustration shows what Lynnea had done during her surgery. First, she had a stent placed in her PDA (green on illustration) to permanently keep it open. Second, she had bands placed around parts of her pulmonary artery to help regulate the blood flow through there because too much blood was flowing to her lungs at one time (Purple on illustration). Finally, they pushed a tiny balloon through her PFO to help temporarily keep it open (red on illustration). Ideally, this will keep the PFO open until her second surgery when they hope to make it a permanent opening. If it begins to close before her second surgery, they will have to go in again with a balloon to keep it open longer. This means we will most likely have to make weekly visits here at the hospital so that they can check it to make sure it's not closing.

The last we heard from the surgeons is that she will probably have the second surgery in five or six months. It will be a much more intrusive procedure, and it will be necessary for her to be on a heart/lung machine for it (this first procedure was open heart, but did not include complete pulmonary and cardiac arrest). It will include some reconstruction of her aorta, as well as re-routing the blood flow from the upper half of her body, sending the unoxygenated blood directly to the lungs for oxygenation, rather than sending it to the heart. In the long run (after the final surgery is completed when she is two or three years old) all of her unoxygenated blood will travel to her lungs, so that her heart is only responsible for pumping oxygenated blood to the rest of her body. In a way, this first surgery only provided some temporary solutions to help Lynnea make it to her second surgery. And, even after all three procedures are completed, the doctors pointed out that the right side of any heart is technically not designed to do all of the pumping of oxygenated blood to the body, and over time will wear out, making a heart transplant necessary for Lynnea sometime in the future.

Another Update

Lynnea seems to be doing very well after her surgery. They were able to remove her chest tube earlier today, and not long ago the removed her breathing tube. Both surgeons involved in her procedure said that everything is working the way it is supposed to for now.

A lot of people have asked for a few more details about Lynnea's condition and the procedures that are needed to correct the problems that she has. Hopefully tomorrow sometime I will be able to get some illustrations up here so that I can explain everything (it's really hard to explain without pictures).

Update on Lynnea

Lynnea's surgery started later than originally planned. About a half hour ago, one of the surgeons informed us that the procedure went well, and now we are just waiting for them to finish closing things up, and then she will be moved back up to the PICU where we will be able to see her. I will update again later with more details.

Surgery Tomorrow

Corey and I were given two options for procedures that they could perform on Lynnea tomorrow. I had hoped to get pictures up here to help explain both of them, but I don't have the time to do that right now. We chose the Hybrid Procedure, which is a very new procedure, but overall seems a little less risky than the Norwood Procedure the doctors offered as another option, and the recovery time should be shorter. The Hybrid Procedure has only been done three times at this hospital, but all three were successful, and all three children have gone on to have the second surgery that will also be required for Lynnea. Lynnea will have surgery tomorrow (Thursday) morning at 10am. The surgeon expects to be finished around 3pm.

Lynnea's sugery

Tina asked me (Megan) to update to let everyone know that the tentative surgery date is tomorrow (11-12-08) they are still deciding for sure which surgery today. Both would be open heart surgery adding a stint one would do more reparative at this point as well but has a lot longer recovering period the other is consider a hybrid which is a newer surgery and has a lot less of a recovering time. They are meeting with the surgeons this morning again to make the final decision and to set the surgery time.
Please continue to keep all of them in your prayers. Tina should be updating herself a little later on today to let you know more.

Moving Lynnea

Yesterday at 4pm they removed Lynnea's breathing tube, and she has been doing an OK job of breathing on her own ever since. Tomorrow morning at 11:30am they will move her from the NICU over to the Pediatric ICU on the East Bank. This is where she will have her surgery; we still don't know when exactly she will have her surgery -- hopefully they will be able to tell us tomorrow. Corey and I were able to hold her today, which was much easier than it was on Saturday when she still had the tube in. She cried this evening when they were moving her from her bed into my arms, which, on one hand was difficult for me because I didn't like the idea that it might hurt her to be moved, but at the same time, it was good to hear her cry because I haven't heard her cry since they sedated her in the ER on Friday night.

Getting Stronger

We talked to a cardiologist this morning, and she thinks that they might be able to perform the first surgery in a few days. Lynnea is getting stronger, and all of her organs seem to be functioning pretty well right now. They will continue to monitor her closely, and they are hoping to remove her breathing tube soon. This will make it easier for Corey and me to hold her. For the surgery, she will be moved to the Pediatric ICU on the East Bank (right now we're still in the NICU on the West Bank). This cardiologist made it sound like the second surgery may take place sooner than we had initially been told -- she says it might happen around 3 months, rather than 6-9 months. We will continue to keep everyone updated with what is going on.

Holding Lynnea

Today they let me hold Lynnea for the first time since we brought her in to the ER yesterday. Well, they sort of let me hold her; they put a pillow on my lap and laid Lynnea on it with my arm under her head -- similar to the way that we let Ashlyn "hold" Lynnea. I wanted so badly to cuddle her, but with all of the tubes and wires, and the breathing tube that she still has in, this wasn't an option. The doctors weren't able to tell us anything new today; she's stable, and she's getting stronger, but we still haven't heard anything about when they might be able to perform the first surgery that she needs. I believe we will get to talk to a surgeon on Monday, so they won't be doing anything before then. Please, continue to keep us in your thoughts and prayers.

Please Keep Baby Lynnea in Your Prayers

I am writing this post from the NICU at the U of M. Lynnea is very sick. It turns out that she has some heart problems -- the left side of her heart didn't develop properly, and so the right side has been doing most of the work. The doctors believe that the problems can be corrected with three surgeries that will take place over the next few years. The first surgery would be performed as soon as she regains her strength, the second one would happen sometime when she is between 6-9 months, and the final one would take place when she is 2-3 years old. Needless to say, this is a very scary time for us, as we worry about our beautiful new baby girl. Please keep Lynnea in your prayers. Thank you.

Lynnea Hope Callison

On Friday, October 31, 2008, at 4:07am, Lynnea Hope Callison was born. She was 19 1/2 inches long, and weighed 7 lbs. 10oz. We made it to the hospital at 3:15am, and Lynnea was born less than an hour later, which was kind of nice compared to the long labor that I went through with Ashlyn. Ashlyn likes her baby sister, though we are already seeing jealousy rear its ugly head at times. We are all working on making the adjustment from being a family of three to a family of four.

Do You Want "Dip-Dip" With That?

I'm not sure exactly when this started, but at some point, Ashlyn decided that all food is better with "Dip-Dip" or "Dippy". I think it started with introducing her to ketchup for her french fries, and it has just moved on from there. She asks for some form of dip at most meals (sometimes she forgets at breakfast if she's having cereal, but all other meals, she typically asks), and she doesn't seem to care what kind of "Dippy" she gets -- she'll take anything from ketchup to syrup. She also doesn't care what food she dips into what kind of dip. In the picture, she's dipping her brownie into some cheese sauce. Some of her other wonderful combinations include dipping cantalope in tomato sauce, and green beans in carmel. Yum, yum.

Pat-downs and Pocket Checks

Ever since Ashlyn discovered that pockets are really useful things, Corey and I try to remember to give her random pat-downs and pocket checks to make sure that she's not bringing random stuff with her to bed, or out of the house if we're going anywhere. Unfortunately, sometimes things get missed. On Sunday morning, we had to go to the 8:00am church service because Corey had to work earlier than usual. This meant that there was a hectic rush to get out of the house. Since Ashlyn was wearing a dress, the usual pocket checks didn't apply because she had no pockets. Well, we were sitting in church, and Ashlyn was getting pretty wiggly about half-way through, so Corey took her from me because she was getting hard to hold onto. During the offering, Corey leans over to me and whispers, "Honey, what does she have down her shirt?" I gave him a funny look and said "What are you talking about?" Corey reached down the back of Ashlyn's shirt and pulled out a comb. We both tried really hard not to laugh, but couldn't help it. Corey then whispered, "Hey, I guess you looked away for 5 seconds while you were combing her hair this morning, didn't you?" I was completely dumbfounded at how she had managed to slip the comb down her shirt, and how we had managed to leave the house without noticing this. I guess we'll be more diligent with our pat-downs from now on.

Just the Three of Us

I had planned on starting a family blog sometime after our second child graces us with her (or his, we're not completely sure) presence (the due date is Nov. 12), but I decided to start now instead. Lately I've been having a difficult time imagining what life will be like with Ashlyn and another baby around, so rather than try to imagine what the future holds, I figured it might be a good idea just to enjoy the little threesome that we are right now. (Which means giving Ashlyn all of the attention that an only child deserves, for as long as she gets to hold that position in life.)

Since March 28, 2007, Ashlyn Grace has been the center of our lives. She has grown and changed so much during that time that it is hard to imagine that the little girl that runs around my house now is the same child that I brought home from the hospital a year and a half ago. Now she chatters all the time (I've lost track of how many words she knows -- she gains several everyday), she plays elaborate pretend games, and loves telling us "No" whenever we ask her to do things she doesn't want to do.






Ashlyn - 4 days old







Ashlyn - 4 months old






Ashlyn - 9 months old






Ashlyn - 18 months old