Mom says she has a gladder bladder.

I just got home from Elkhart. Alexis and I drove up to Elkhart on Tuesday evening after her doctor appointments. On Wednesday, Mom had to be at the hospital at 7:30 a.m. for her surgery. They removed the tumor and a couple of "satellite tumors" growing behind it. She's doing great, very little discomfort. She was in the hospital one night and is now back home. She isn't to lift more than 15 lbs in the next 2 weeks. I just hope that as she heals, she doesn't forget and pick up something that could cause things to bleed. I would think it would be soooo easy to just, without even thinking, pick up a heavy bag or a grandkid. How many times today did I almost hand her my diaper bag to carry? Not that it's 15 lbs, but there's still no need for her to carry anything yet that she doesn't have to. I was a bit surprised that the doctor told her she could drive as soon as today. I don't think so. Dad better confiscate those keys. She'll get a call from the doctor early next week with the results. They expect that the tumor is cancerous but are hoping that it is just "superficial" and will only require monitoring as these tumors most often do grow back.

So we're back home in Noblesville. It was so good to see my boys again! Time to get organized, make some sort of schedule, and get ready for Jason to return to work on Sunday night. It's nice that he's going back to nights and will still be available during the days to help out as needed. Sleep? I think not.

Alexis has been out with my quite a bit lately: Target, Kohl's, Meijer. I'm no longer so fearful of taking her out. I haven't been able to bring myself to leave her yet. If I need to go somewhere to run an errand, Jason will offer to stay home with all 3 kids, but I haven't done that yet. It's not that he isn't capable. I guess that since I had to leave her every night at the hospital for 67 days, I'm not quite ready to leave her at home. Call me overprotective if you wish. Maybe after she's been home for 67 days I'll be ready. Maybe not.

I need a nap.

Today was a very busy day. This morning Alexis had an appointment with the cardiologist. It was strange driving back to St. Vincent since I haven't been back there in a week and a half. She weighed in at 7 lbs, 5 1/2 oz, which was only half an ounce more than she weighed on Thursday. But Dr. K said he was very impressed with her weight gain since discharging from the NICU. They did an EKG and the doc was pleased with her breathing. He reported that she looked "very good" which I clarified as meaning she was stable and hadn't gotten worse since her hospital discharge. We return for another check-up in 5 weeks and Dr. K estimates that her surgery will take place at the end of August or beginning of September. On the average, a baby with this surgery requires a 7-10 day hospital stay. (Can't help but recall that we were also told that a hospital stay for duodenal atresia was only 3-4 weeks and Alexis was there over twice that long).

About 3 hours and 2 poops later (for Alexis, not me!), Alexis weighed in at the pediatricians office at 7 lbs, 3 oz. No worries by the doctor though. It was a different scale, different time of day. Thank goodness we'd had a good weight that morning or I would have been worried. The pediatrician also thought Lexi looked great and we will return for a weight check and another immunization in another week.

From there, Alexis and I drove to Elkhart. We had to make a nursing/diaper change pitstop in the McDonald's parking lot. I was pleased to nurse successfully without flashing a single person. Mom has to be at the hospital tomorrow morning at 7:30 a.m. for her surgery. She's expected to be in the hospital for 1-2 nights.

Happy Father's Day

It seems only fitting that on Father's Day, I should write about my husband. I have a lot of people ask me how Jason has "coped" with all that Alexis has been through. Jason is my rock.

I'm sure most women, when contemplating marriage, know they want to marry a man who will be a good father. I was no exception. And Jason is a fantastic father. What a joy it is to see my husband with our 2 boys. He genuinely loves spending time with them, whether it's taking them out on the boat, on a bike ride, or putting them in the bathtub. He makes my job as a mom easy. Anytime Jason is home when the boys get out of bed in the morning, he will get up with them and allow me to sleep in. He will sacrifice his own sleep if it means he can help me get them to preschool, or a doctor's appointment, or help with any sort of scheduling conflict (when working nights, he would rarely sleep more than 4 or 5 hours).

When we found out about Alexis's diagnosis of T21, Jason acted surprised, but never angry, sad, grief-stricken. I'm sure there were some of those feelings inside, but those of you that know him, know that he's not one to show a lot of emotion. The last trimester of my pregnancy was miserable in terms of my physical pain and discomfort. Jason cared for those boys just about every moment that he wasn't working or sleeping.

The timing of Jason's lay-off has been great. He's been available to continue to care for the boys full time while I tend to Alexis. But you should see him with his daughter. I love watching him hold her, feed her, care for her. There is nothing like watching your big, strong husband hold your tiny, frail daughter. I love that she has his blue eyes and dimples. She's definitely going to be Daddy's girl. During all the emotional times for me during the pregnancy and the hospitalization, Jason has been the strong, silent supporter. When I'm having an emotional breakdown, he is supportive in the exact way I need him to be. He doesn't have to say anything, doesn't have to do anything, he's just there, quietly, with his arms around me, loving me. And for Jason I am eternally grateful.

I had to take Alexis back to the doctor today for another blood draw. The blood they took on Tuesday thickened and they couldn't test it. This time, instead of pricking her heel and squeezing blood out, the doctor inserted a needle and drew the blood that way. And she hit the vein on the first try!!! And bless my little Lexi Lou Who, she never made a peep. Again. Just laid there, sucking on her pacifier, watching the doctor and letting it happen. The doctor couldn't believe how good she was. Didn't surprise me a bit.

What did surprise me, was that Dr. M listened to her heart and said she didn't think that Lexi's murmur was terribly loud. Granted, she hadn't listened to her heart before Tuesday and couldn't compare it to anything, but said she's heard much louder murmers than Alexis. Dr. M said, "maybe the hole is getting smaller." I told her that when the cardiologist listened to her heart, he thought it sounded better the last time. I can NOT get my hopes up and let myself think that she might not need surgery. I have to prepare myself for it. But this little girl has so many people praying for her every day and is on so many prayer chains, that, well...let's just wait and see. We see the cardiologist on Tuesday and return to the pediatrician Tuesday as well.

The most shocking thing was that they weighed her and she was up to 7 lbs, 5 oz. I couldn't believe she'd put on 4 oz in 2 days! Granted, she peed on the scale and when they cleaned it up, she was down to 7 lbs, 4oz.

10 weeks old

Alexis had her first outing today--to the pediatrician. The pediatrician (Dr. M.) is in Fishers Pediatrics, where the boys go, but it's a different doctor because the boys pediatrician is part time and I thought Alexis should have a doctor who is around Monday-Friday. Dr. M is great and she was the doctor to a lot of my special needs kids when I worked in case management. Alexis is up to 7 lbs 1 oz. YEAH! I was so worried that she wouldn't have put on weight and would have beat myself up if she hadn't (even though I can rationalize that it's her medical conditions that make it harder for her to gain weight and not me, I would still have beat myself up over it. It's just what some mom's do.) The doctor asked a lot of questions and thought she looked really good. The nurse had to do a blood draw and I warned the dr. and nurse that she's a "hard stick" and how much difficulty the nurses at the NICU had getting blood out of her. I don't think they realized how true it was until they had to squeeze blood out of her foot for about 20 minutes to get the small amount needed to be tested. Alexis never made a peep. She just sucked on her pacifier until about half way through when she finally fell asleep. The nurse was so impressed at how good Alexis was. She was also apologetic to me that I had to witness such a long blood draw. I reassured her that after the last ten weeks, a blood draw is nothing to witness. We go back to the pediatrician next Tuesday.

Blake and Nicholas have been a bit, uh, curious about the "differences" between Lexi and themselves and the "parts" they have. A lot of you may have already heard the story of the first time Nick and Blake came to the hospital. Blake saw Lexi's large outie belly button (due to an ambilical hernia) and asked, "Why does her penis look like that?"

There have also been a lot of questions about my nursing. Blake has asked about it several times and Nicholas wants to know why I have milk in my stomach. Blake told me today, "I like breast-ez."

So far, my favorite comment came from Blake just this morning. The boys have helped me change Lexi's diapers several times now, peeling off the tape and throwing the dirty diaper away. Today, Blake looked at Lexi's, um, girl parts, pointed at it and said, "that's supposed to be in the back of her, not the front." Yes, apparently my daughter has her butt in the front. Out of the mouths of babes...

So far, so good

I've been making all the necessary follow-up appointments today. I'm glad I compared the discharge summary to the paperwork I'd received in the mail from the various doctors. I discovered that we were scheduled twice with the genetics center, so I called to cancel one of those. Noticed the discharge summary said that Lexi's appointment with the pediatric surgeon stated our appt was in July when the paperwork his office mailed said August, so I called to clarify (the discharge paperwork was wrong). Then called the cardiologist to confirm Lexi's appointment there next week. I've called the pediatrician--they need to see her this week. They will call me back with an appointment time (the pediatrician likes a longer appointment for NICU graduates). Looks like the pediatric appointment will be our first official outing. I'd rather the outing be to someplace exciting--like Target (really, does it get any better than Target?) but still a bit paranoid about taking her where lots of germy people are hanging out.

She's doing great at home. She eats well, pees well, sleeps well...but I'm really nervous that she won't have put on enough weight when we go to the pediatrician. At least she seems happy. I love that she's smiling more often. The boys like having her home--and having mommy home. Dr. A called (she wasn't working when we discharged from the hospital and didn't know we were scheduled to leave on Friday) to tell us how much she enjoyed working with Alexis and to wish us well. We also received a call this morning from the pediatric surgeon's office to see how things were going so far. I love that in August there is a NICU reunion for all former patients to see nurses and doctors at a picnic. If Alexis isn't having surgery then, we'll get to see several of our nurses and doctors then.

Home Sweet Home

We are adjusting well at home. Lexi sleeps in a bassinet next to our bed. I put her down last night at midnight. I had to wake her up at 5:30 a.m. to eat because she was still sleeping soundly. I don't think I'll count on getting that lucky every time, but the nurses had said she was a good sleeper at night. Lexi is calling--must be chow time...

Alexis is at HOME!!!!!

Ahhhhhhh. Finally. Day 67. Jason and Mom and I went to the hospital this morning around 10:30. Nurse D was waiting for us. Saw nurse J who gave Alexis her first swimsuit (Daddy was pleased!) and got to see several of our other favorite nurses. Dr. M did a final check on her and they sent us on our way. We got home around noon.

The boys are still in Kokomo. They don't know anything about Alexis coming home. I asked Jim and Connie not to say anything since you never know when plans will change and I wanted to see their reactions myself. I can't wait untill they get home. When they get home, I can finally feel like I have 3 children, not 2 children here and 1 child there. I think maybe I've felt like my children were divorced but without any animosity. I had custody of my boys in the mornings and custody of Alexis in the afternoons. Evening custody was 50/50. And tonight we can all be a family together.

The doctors have suggested not taking Alexis out to anyplace crowded, not that I have plans to go anywhere anyway. They also have suggested limiting the number of visitors she receives. So while I can't wait for everyone to see Alexis, we're going to lay low for a week or so (I reserve the right to change this time frame), and keep the visitors limited to grandparents only right now. I'm also feeling hyper-protective, so forgive me if I act a bit anal and obsessive about things for a while. She's lived in a very sterile, protective environment for over 2 months and now her tiny body is going to be subject to a whole new set of germs.

Time to go clean something.

I think it's actually gonna happen!

Her weight this evening was exactly the same as it was yesterday. It wasn't up like we hope for, but it wasn't down either. And since there was not a significant weight loss, we're a go.

So before I left tonight I cleaned out her room. Took down the pictures, packed up her clothes, threw out the old magazines. The room is pretty bare. It looks really strange. We've lived in this room (or at least on this unit) for the past 66 days. I had to say goodbye to Lexi's two primary night shift nurses. Thank goodness everyone has given me e-mail addresses or phone numbers to keep in touch. They've been so good to us, and as cliche as it sounds, they are family to me. The timing is really good in that both night shift nurses were there tonight and all three of our day shift nurses are working tomorrow, so we'll get to see everyone before we go home. The only downer is that both Dr. P and Dr. A are both off tomorrow.

Never thought leaving the hospital would be so bittersweet...

Dare I hope???

A few minutes ago I overheard a nurse outside Lexi's room call out to another nurse, "Did little Kendra have a good stool yet today?" I was so pleased. No one's ever called me little before! Oh wait--you mean that baby over there? Yeah, she's Kendra too.

We're still on track for a discharge for tomorrow morning. As long as she doesn't have any significant weight loss today, we're good. She's eaten really well, but I can't wait to hear the latest weight this evening. I'll keep you posted...

Life is a rollercoaster...

...but today is definitely looking up--in all areas. If you haven't been following the Chrysler news, yesterday I was in a bit of a panic because some supreme court person was trying to stop the merger of Chrysler and Fiat and if this isn't resolved by June 15th, Chryler would have little choice but to liquidate. Which would mean no job, no insurance, NO GOOD. Thank goodness things turned around last night and it's looking better for Chrysler. I was in a bit of a panic though and was seriously checking to make sure that CICOA was hiring case managers and asking my friends questions about Cobra.

My mom had a doctor's appointment yesterday with a urologist because they found a tumor on her bladder. It is 99% likely that it is cancerous and a surgery has been scheduled for later in the month to have the tumor removed. While cancer is a very scary thing, if a gal has to get cancer, this is the one to get because they will remove the tumor and all should be fine. No chemo or radiation etc. The tumor will most likely grow back at some point so Mom will have to be checked every 3-4 months for this and if it happens, they'll do the surgery again. She'll be hospitalized a day or two and is doing fine.

As for Alexis, yesterday they removed her tube from her nose. They changed her order to ad lib so she's eating every 3-4 hours as much as she wants. She has to eat at least 45 mL or, if she eats every 4 hours, at least 60 mL If she doesn't eat this much, the tube will go back in. IF she eats well the next couple of days and puts on weight, she could go home as soon as Friday. There is a VERY good chance this won't happen and she'll go home later than that, but we'll see. She's currently weighing in at 6 lbs 10 oz (she was 6-9 yesterday). The cardiologist saw her today and he thought her heart sounded a bit better today than last time he listened to her and he is fine with her going home. The hearing screen has been ordered--it's one of the tests that has to happen before discharge. And Dr. P has been in contact with the discharge planner. Wait and see...

Fine-ish.

Dr. P is back today. We are so lucky that we almost always have Dr. A or Dr. P. They're both wonderful and I have great respect for the both. Unfortunately, different doctors have different ideas. Dr. P thinks that after nursing Alexis, I shouldn't need to follow up by offering a bottle. He thinks I should nurse 4 times a day and then the increased calories in the bottle feedings should be enough. When Dr. A was our doctor last week, she had me offer Alexis a bottle after she nursed. I like the thought of giving her a bottle after she nurses because I don't think she nurses long enough and I want her to put on weight. But on the other hand I don't want her getting too much and end up throwing everything up again. Grrrrr. I am pleased to report that she put on another ounce of weight yesterday. Hallelujah! Of course yesterday, when we still had Dr. A, Alexis was getting a bottle after nursing. Today with Dr. P, that stopped. We'll see how her weight does this week.

According to Dr. P, Alexis is taking 80% of her feeds by mouth. That means that when the nurses give her a bottle, they're putting the remaining 20% through her tube. When she is taking the full 100% by mouth, the tube will come out, and he'll change the order for her to eat ad lib. He'll monitor her for a few days and then, assuming everything goes well, she can come home. The cardiologist predicted then that after Alexis comes home, we'll return to his office 2 weeks later for another echo. A plus side of Dr. P's method is that maybe if she's not being offered a bottle after nursing, she may be hungrier at night and take everything by mouth (this is my own thinking, not the doctors. Do you see how I could drive myself mad with this?)

Dr. P and I discussed Alexis's heart surgery briefly. She will be on a vent for the surgery. Another ventilator. 2 vents in her first 6 months of life. It seems so unfair. It absolutely breaks my heart to think of her having to go through more sedation, more pain meds, more IV's, another vent. It makes me very sad and I feel so guilty. The emotions are on overload. I've developed a new word. Friends often ask how I'm doing and my new response: I'm fine. ish. It could always be worse, right?

2 months old

It's hard to believe that Alexis is 2 months old today. On one hand I feel like we've been here forever but then again, it also seems like just yesterday I was pregnant. Can't decide if time is flying or standing still...

Alexis lost significant weight yesterday. She's down to 6 lbs 10 oz (from 6 lbs 13 oz). This is probably due to her being on a diuretic and Dr. A said that once she's gotten rid of the excess fluid, her weight should stabilize and hopefully then start increasing.

Alexis is now receiving 55mL per bottle and they increased her calories. I asked the dr about giving her a bottle after she nurses since I'm sure she's getting no where near 55mL from me and the doctor agreed. In fact, she seemed surprised that we weren't already doing that. Glad I asked.

Still lots of "wait and see". I really hate the phrase "wait and see".

Does this look like a sick kid to you?

Achy breaky heart

Jason and I met with the cardiologist today. Dr. A was present for the meeting as well (as was Lexi--she was very attentive and asked good questions). The cardiologist spent most of the time explaining the details of the heart defect, drawing pictures, explaining the blood flow, etc. It didn't sound quite as grim when he explained things as when Dr. A explained things yesterday, but I never know when a doctor is just trying to make things not sound so scary. Remember--we were originally told the duodenal atresia would keep Lexi in the hospital for 3-4 weeks and she'll be 2 months old tomorrow. Anyway, he said that if Alexis continues to put on weight and eat well, she can probably go home in the next week or two and when she's 5 or 6 months old, she will return to St. Vincent PICU for the heart surgery. Now--he said she could go home if she continues to eat well and gain weight, but she only eats so-so and hasn't put on any weight this week. She's still at 6 lbs 13 oz. So I'm not going to anticipate a discharge in the next week. Also, he said that there are times that a VSD can get smaller and maybe wouldn't end up requiring surgery. However, I'm under the impression that we should not expect this to happen. There are of course risks with every surgery--especially heart surgery. This is one of the most common heart surgeries and has about a 95% success rate. I couldn't bring myself to ask what happens if the surgery is not successful. If everything happens as expected, during the time Alexis would be home before her surgery, we'd have check-ups monthly with the cardiologist to monitor her heart.

Regarding her feeding, she's still at 50mL per feeding. They stopped the continuous feeding at night and she gets fed by mouth every 3 hours. When I nurse, we still offer her a bottle afterwards. The tube is out right now (yeah!!!) but if she has a bad feeding (which happens frequently) they would put the tube back in for her to get a feeding that way. Since she doesn't have the continuous feeding any more, she may be hungrier now and this may change her feeding habits, but who knows. So right now, it's just a whole lot of "wait and see."

The terrible, horrible, no-good, very bad day

I thought today was going to be a good day when I went to Dunkin' Donuts and found out it was National Donut Day and I got a freebee.

But things started going bad at lunch when I got cornered by the lactation nazi. I tried to be subtle and respectful when I told her that Lexi was nursing fine and we didn't need her help. She didn't take the hint. "I still want to stop in and see how she's doing," she says. Grrrr.

Then on my way up to Lexi's room after lunch I pass nurse nut-job. Luckily she didn't try to disinfect me or anything. She just asked about Lexi and went on her way.

But as I got back to the room, I was surprised to find they were in the middle of doing an x-ray. No one had told me that an x-ray had been ordered. My first thought was: uh-oh, I wonder if they saw something on the echo yesterday? But I quickly blew it off remembering that they were doing some miscellaneous double checks on random things before they send her home and since we already knew that Lexi had a small ASD and VSD (holes in her heart), it would be no surprise. Not long after that, Dr. A walked in the room and I knew immediately that she had bad news.

When they did the echo yesterday, the ASD was gone (good news) but the VSD (ventricular septal defect) was bigger than they originally thought. Much bigger. It's large. Alexis will have to have heart surgery. They have just started her on a diuretic to drain some of the fluid. They will monitor her heart for the next week or two to see if the diuretic works and if it does, Alexis will most likely be able to come home for a few months and then return to the PICU at St. Vincent Children's Hospital for the surgery. If the diuretic doesn't work, they'll do the surgery soon and she will stay in the NICU. For selfish reasons it would be nice to just get the surgery done and stay at the NICU where we already know so many nurses and doctors. But it would be much better for Alexis to be able to wait and grow a bit. If she can wait a few months to have the surgery, the recovery will be easier. Dr. A said that the recovery time in the hospital would be a few weeks most likely--not near as long as this hospitalization has been.

Dr. A was just as surprised as us by this news. Lexi is deceiving in that she always looks so good and healthy and is never in any distress. Dr. A said that before she saw the echo, she ran into the cardiologist this morning who was looking for me and Dr. A said, "why would you need to talk to her?" Apparently the cardiologist was in this morning to see Alexis and says she's already in heart failure. IMPORTANT NOTE: the term "heart failure" is misleading. To me, it conjures up images of flatlining and paddles. But it's nothing like that. It just means that the heart isn't working like it should.

Jason and I meet with the cardiologist tomorrow at noon.

I need ideas!

Alexis's feedings were increased today to 50mL. She is still on the continuous feed at night, but the time has been condensed by a couple of hours. Dr. A recalculated and now Alexis has to get up to 58 mL, not 50 like she originally thought, so in two days, Alexis will be up to 55, then maybe 58 two days later. So there will be no discharge over the weekend. That's fine. After this long, what's a few more days? And it would be nice to wait simply because Dr. P will be back on Monday, nurse J on Tuesday, and nurse D on Wednesday. Alexis was down a few more grams tonight, but nothing significant. She had a big poop, and that's all it takes.

Does anyone have any ideas for appreciation gifts for nurses? I will be taking in something for all the nurses to share in their breakroom (like bagels or a cake or something) but I'd like to give something more personal to our 5 associate nurses. With there being 5, it can't be terribly expensive. And I don't want some silly "Nurses call the SHOTS!" knicknack that they probably have thousands of. Any ideas would be appreciated.

Gripe du jour: How can you really tell how a paint color will look on your wall when a paint sample is about one lousy square inch? (I never said the daily gripe would always be NICU related.)

Wanna make a guess?

Alexis finally hit the 7 lb mark! 2 days ago she weighed in at 7 lbs, 1 oz. Of course then the next day she was back down to 6 lbs, 12 oz. But last night she was back up, just a bit. Her feedings were increased to 45 mL by bottle yesterday. Tomorrow they'll be increased to 50 mL. 50mL was the goal. We will have hit our goal!! Do you realize what this means?!?!?!

So the next step will be to stop the continuous feed (no more tube feeding!) and go to bolus. This means bottle or breast feed every 3 hours. (This is assuming the pediatric surgeons agree with Dr. A.) If she can do this... yes. The "d" word.

When talking to nurse D. today, she said she was under the impression from Dr. A. today that when Lexi starts getting 50mL tomorrow, they'll start the bolus feeds at the same time. I thought Dr. A would wait a couple more days to start the bolus feed. Not sure. But nurse D and nurse K were making guesses on when Lexi could go home. They were guessing Sunday or Monday. WHAT?!?! I still think it would be a couple days later, but hey, I'm no nurse. Even though I do still think I deserve an honorary nursing degree.

So anyone want to make a guess? I guess next Wednesday, 4p.m. Make a guess and the winner gets....hmmmm....to change Lexi's diapers for the next year.