I love sharing some of the silly things that my kids do. Today is no exception. I took Lillian to the dentist early this morning and left Matt and Marissa home with Philip. Philip not being a morning person was having a difficult time waking up. Matt was hungry so Philip asked Marissa to get him something to eat. A few minutes later Philip checked on what Marissa was feeding Matt. Any ideas? Marissa was feeding Matt gum. Yes, a yummy minty breakfast.

Congradulates us on our new baby Boy

Well Philip finally gave up and got us a dog. He is 9 weeks old and a shiz tu. The girls named him Charlie Sniffers. He loves to sniff around. The first time the dog saw the girls he ran up to them and started kissing their faces. If Charlie Sniffers could talk I swear he would be saying 'Marissa tastes like cookies'.
Charlie Sniffers has been with us almost a week now and is remarkably a good dog. He sleeps through the night and understands the word 'No'. I guess this means he already has one or two up on his older siblings. After writing that sentence it all makes sense why I like the dog. We heard him bark for the first time today at a toy chicken that squeaks and is dressed up in a Santa suit. He really likes to take out his aggression on that toy. I have tried taking pictures of Charlie Sniffers but as soon as I get down to his level with a camera he gets to close.
The kids loovve the dog. They fight over who takes him out to go potty and have already given him a bath (without bothering to tell Mom about the bath). Well now with four children our family now feels complete.

The silliness continues. Lillian official put Marissa into the 'kids with scars club'. Marissa came into my room, pulled up her shirt, and showed me a scar drawn on with marker. Lillian did the art work. The scar was just like Lillian's in both length and width along with chest tube markings. The silliest part is now Marissa, just like Lillian, wants to make sure that the shirts she wears each day does not show her 'scar'. She wants to take heart meds like Lillian as well. I think apple juice in a syringe is a bit much but it makes Marissa feel like part of the group.
Halloween was fun and much warmer then it has been in past years. I wished I could throw away at least half the candy but who's kidding who. I have a bigger sweet tooth then most.
Matt is walking almost 100% now. He thinks that anything he can reach is automatically his. It has been a week of learning that cups too close to the edge of a counter or table is a dangerous and messy thing.
The plane tickets have been booked for California. We will be there Dec 24 through Jan 1st.

I know, I know. What have I been doing that is so important that I haven't blogged?

Ok, no more excuses on why I haven’t been blogging. We have moved and are now settled in a beautiful home a whole four houses down from where we lived before. For those of you who aren’t in touch with us on a regular basis: our house sold in 10 days with a cash offer. I don’t know about you but I was pretty stressed out. Plus, Philip was out of town for four of those days. Needless to say I have been busy organizing and cleaning.
Lillian has had a personality flip on us. Once our outgoing, always had to have a friend over and who loved school: now doesn’t like hardly anyone, thinks everyone is against her, and loathes going to school. The transformation is very noticeable even to friends that stop in only once in a while. Philip and I will be interviewing a therapist on Tuesday to see if he might be able to help her. My mom thinks she has ‘post traumatic stress syndrome’ from her surgery in August and recent behavior has pointed to that. Lillian continues to love reading and reads chapter books with a little help here and there.
Marissa is growing up so fast that I feel that if I blink she will be a teenager. She has been going to preschool and loves it. Although I should point out that she says that she ‘hates going’ but she is just copying what Lillian says. She sings all the way to school and back. So you might say ‘that the proof is in the pudding’ or something like that. We had to chop off her hair to her chin because she kept cutting it herself. The hair cut is very cute and very Marissa. She also has mastered doing puzzles and is so proud of herself.
Matt is walking! Well, not totally yet. But he walks when he thinks no-one is watching. He is so carefully and if he talked I could just imagine him saying ‘woo woo’. He is going to ‘kids on the move’ classes and hates it. We are trying to get him to communicate with words rather then just pointing but he gets so so so frustrated. So why bother? Well, the kid started biting and banging his head when he did not get something that he wanted. So since we were concern about possible brain damage from the banging and since being bitten every couple of hours wasn’t working for me he is learning to communicate in a more constructive manner. Matt has only been hospitalized once for breathing issues since we have been home from his surgery in Aug. and it was only for one day!
Well…, after re-reading my blog it sounds like things are hard, but they really are going well. But anything is better then being in the hospital. Our holiday plans are us staying here for Thanksgiving and going to San Diego for Christmas. If you will be in either area during those times and want to get together, please contact me so we can see you too.

Post-op

Today was the day to get the clear to fly home Sat. Did we pass....not yet. Matt has been running a temp. of 99.6-101.6 the last two days. His O2 is 97-99% and his chest x-ray is clear so that rules out pneumonia. Matt had blood taken today and we will know tomorrow...hopefully. The chance that it is just a viral infection is pretty high (like the cold or flu) because another child who was hospitalized at the same time has the same symptoms and hers is a cold.

We are OUT

After what seemed to be an eternity of tests and paper work on Monday, the kids got out at 4pm that afternoon. Lillian is trying so hard to be happy. She came home with an itchy rash from the tape that covers her chest, including her scars. Then to top it off had an allergic reaction, in the form of another rash that covered her chest and neck. She is taking benedryl and has cream to put on her rashes, but it doesn’t seem to take the rash away quickly enough. Her cousin, Sam, is the greatest cure for Lillian. He entertains her and helps keep her mind off her itches.

Matt is zoned. He can’t seem to sleep. The night before discharge he slept only 2 hours, from 2am-4am. I took him on wagon rides through the IMU all night. Today, he took maybe a one hour nape and is crying right now trying to go to sleep. The poor guy. I have watched a movie with him and have tried rocking him. He probably is stressed out from the hospital stay and no-one could blame him if he is. The good news is he came home on no O2. Matt's surgeon says he will still have some breathing issues and considers the surgery a success if he is only hospitalized twice this fall. Maybe if we are super blessed the hospital won't happen at all.

If you can’t tell we are feeling a little sorry for ourselves. Both Matt and Lillian can't go swimming, to the park or even take a deep bath for 6 to 8 weeks. (There chest can't have any water sitting on it.) I am administrating over 30 meds a day between the two kids. I draw them all up in the morning and have a sheet that I made out with an hour by hour detail of what needs to go to which kid. Maybe, the meds will get reduced when we go to our post-op appt.

Even Marissa is feeling poor and picked on because she doesn’t get any of the meds:> Silly kid. Monday night, our first night back and Marissa had night tares, twice. Meaning she is screaming in her sleep and doesn't wake up. Philip, the great husband that he is, got up both times with her and ended up curled nxt to her this morning.

Both kids have a follow-up appt. on Thursday at noon. That means more tests and x-rays. Yea…and yes that is a sarcastic yea.
I managed to get a three hour long nape today. My sister, Leah (flew in today to help out), and my mom watched the kids and handed out the meds. Tomorrow will be easier. I don’t know how, but the lie is how I keep on going and maybe one day it will be better.
Matt stopped crying and is hopefully sleeping restfully. We will be back Saturday to Utah. My mom is helping me fly with the kids.

Lilly & Matt are doing well!!!

Matthew had his ct scan on Friday. It was supposed to be at 8:00 so they stopped feeds at 2:00 am. They did not get him in until 11:45 so he was starving and upset. The results of the ct scan were better than Heather and I had expected. His airway has opened some. Matt went back into the O.R. Saturday morning for a bronchoscopy. His dr thought that there may have been a mucous plug but it turned out to be a floppy portion of the airway. Although his airway has opened, it is still smaller than it should be. It is our understanding that he will continue to have some respiratory issues but may grow out of it in a few years. He is doing well and is always happy. He is off most of his meds and breathing on room air. I took him to the play room today where Lillian was hanging out with the life specialist. He played until he fell asleep on the floor. He was moved to the intermediate care unit this evening. This is a big step towards a hospital discharge.

Lillian has turned a corner and is showing signs of the happy little girl that we know so well. She was transfered to the intermediate care unit on Friday afternoon. She is off all of her pain meds. The child life specialist spent about 5 hours with her today. They painted each others nails, played games and covered a doll with band aids. This gave Heather a much needed opportunity to get some sleep. Lillian has a ct scan on Monday and then will most likely be discharged. She is excited to start 1st grade next Monday and is looking forward to seeing her friends. It's hard to believe that just one week ago she underwent an 11 hour surgery. She is truly an outstanding and very special girl.

Marissa and there cousin Sam came and spent part of the day with Lillian on Friday. Papa sat with the kids for a few hours this evening so that we could take a break. When we got to the hospital, He and Lillian were watching High School Musical 2 and singing along. Now he wants a shirt to match Lillian and Marissa's. LOL!

Heather is flying home with the kids next Saturday night. Her mom will be going with her to help out.

Both Lillian and Matthew are tentatively scheduled for discharge on Monday.

Go Figure

Last night Heather went to her parents to get some rest and both Lillian and Matthew were up all night. I spent the entire night running between their rooms. Heather is at the hospital with me tonight and both kids are sound asleep.

Lillian has made progress today. It was a long and difficult surgery but she is doing remarkably well. She is on 1.5 liters of oxygen with an o2 sat of 98% to 100%. Her chest tube was removed this morning and her meds have been decreased. She is however sad today and continually asks to go home. I think that she'll be much happier tomorrow after finally getting some much needed sleep.

Matthew's a crazy guy. He was extibated this morning and has continued to make progress. The docs do not allow a patient to eat or drink for several hours following extibation. It's never known if the patient will regress and need to be reintibated. After approximately 4 hours post extibation, Matt was overwhelmed with hunger and tried eating his oxygen mask. When that did not satisfy him, he tried eating the tubes. A few minutes later his doc gave the okay for solid foods and juice. Matt drank pedialyte, ate a few crackers and went to sleep. It has been about 4 hours and he's still sound asleep. His surgeon will order the much anticipated ct scan tomorrow or Friday. We'll know at that time if the surgery was a success or if more intervention is needed.

Marissa has spent the day with her cousin Emma. We thought it best to let Matt and Lillian rest today. She will come up tomorrow.

Lillian and Matthew are improving!!!

Lillian was extibated tonight and is doing okay. She has a reactive lung so the docs are not allowing her to drink anything yet. She keeps waking up and asking for water and it's difficult to tell her no. Hopefully she'll continue to progress throughout the night and tomorrow will be a better day.

Matthew is still on the vent. His doc is planning on extibating him tomorrow. Matt must be off of the vent before they can do the ct scan. The objective of the surgery was to alleviate the pressure on his airway. The ct scan will gage the size of his airway. It will be compared to his pre op ct scan to determine improvement, if any.

Marissa visited earlier today and did better than expected. We were concerned that Lillian and Matt's chest and breathing tubes would scare her but she did not even notice. She was just happy to see that her sibling were okay. She misses her big sis and asks about her constantly. If Lillian feels better in the morning, we're going to let Marissa spend a little more time with her sis tomorrow.

The lack of sleep is beginning to catch up with us. We're doing our best to pace ourselves and Nana has been a big help.

Happy Monday

Morning came so early. At 5:08 I woke up and realized that my alarm didn't go off at 4:40. Matt and I got out the door a little late but that just meant that they hospital was really ready for us when we finally checked in at 6. So we were a half an hour late. Matt went in a little after 8 and is expected to be in surgery for 8 1/2 hours. That puts us at 4:30 this afternoon when he should get out.
Lillian looks great! She had a great night and the surgeon is planning to close her chest when he is thru with Matt's case. She moves every once in a while and even woke up last night. She is under medication so that even if she wakes up (which she isn't supposed to do yet) she won't remember anything. It gives her amnesia. So more later. Philip and I are so tired.

4 hours Post Op

It has been 4 hours since Lillian's surgery and she is doing well. She is behaving (medically speaking) and we are hopeful that she will recover quickly.

We appreciate the calls of conern and your continual prayers.

Hope?

Lillian's surgery is whinning down. She came off of bi-pass but her chest will be open. We are hoping to be able to see her in 1 1/2 hours. She will have a long hospital stay ahead of her. Matthew is still on for tomorrow.

Complications

The surgeon's nurse came out and gave us an update. Lillian is not doing well. There are complications getting her off the heart and lung machine. Her blood pressure is off which could cause her to stroke. The surgeon is taking out her stents, which you can't do without removing that part of her pulmonary artery. They are putting in a patch like Matt has over the pulmonary arteries. The patch is not as extensive as Matt's. She will be on the heart and lung machine a long time which causes her body to swell. This means she will come out with her chest open and possible be on ecmo. They say another 2-3 more hours...

Still waiting

It's 2:20 and still no update from the doctors.

It has been a draining weekend here in San Diego. Lillian’s surgery on Saturday was post-pone till Sunday. We arrived at the hospital Saturday morning and checked Lillian in. The surgeon called while Lillian was taking her meds to make her sleepy and asked the nurse to hold off. The surgeon came in and explained that their is another child that needed surgery immediately and asked if the surgery could be post pone till Sunday.
So it is now Sunday morning and Lillian is in surgery. She was so silly after she took her med. to make her tired. Lillian was singing 'my doctor likes to wear my dirty underwear' you know from Alvin and the Chipmunks movie. Everyone, including the doctors and surgeon was laughing. The surgery should last from 8am till 2:30 pm. So I will update the blog tonight and let you all know how the surgery went. If you can’t tell, I’m so tired. I didn’t sleep very well last night.

Surgery Dates

Lillian and Matt have finally gotten surgery dates. Lillian is the 2nd surgery scheduled for Aug 1 so it might get bumped till the 2nd. Matt’s surgery is Aug 4th. Both surgeries will be at the Children’s Hospital in San Diego. Recovery time is unknown and varies depending on how long the kids are on the heart and lung bypass machine. We will be in Utah until July 28 or 29. So if any of our Utah friends are in town…give us a call.

So I know the writers strike has ended and that my blog needs a serious update but I have a good excuse….I’m on vacation. Vacation started in the beginning of June and has gradual gotten longer. What started out for a 2 or 3 week visit to San Diego has gone 6 weeks. The kids and I have gone swimming almost everyday and have gone to the beach a couple days too.

The reason for the extension? After only being here, in San Diego, a little over a week Matt got sick. Of course when Matt gets sick we end up in the ICU at Children’s Hospital. Four days later we get out and Matt looks better then he has in 6 months. The Doctors here put Matt on a mixture of helium and oxygen. This opened up his capillaries in his lungs that albuterol and other inhalers have not been able to do. (ER put Matt on a continual albuterol treatment for over 2 hours with no improvement.) The heli-oxide treatment isn’t used in Salt Lake Children’s for reasons unknown to me. All I can say is hallelaijah it works. Matt’s retractions on his chest were completely gone after the treatment. The surgeon at the Children’s hospital here also believe they can improve Matt’s lung functions which the surgeon in SLC didn’t know that he could do it and not end up with the same results that Matt currently has. (60% on the right lung, 80% on the left lung) We are currently waiting for a date for the surgery. The waiting part stinks. And since we are doing Matt’s surgery here, we had Lillian’s records sent here too.

Matt is a maniac. He has started to pull himself up and use furniture to walk around it. He has been so excited about his progress that he can barely sleep at night and now wants to climb on everything including the stairs. Yesterday, the dishwasher was left open and he pulled the bottom rack out and climbed inside…all the way inside.

Lillian and Marissa have loved going swimming. Lillian will jump off a ledge to her Uncle Ray’s pool that is five feet up from the water. Marissa still does not want to go underwater so jumping isn’t her style…yet. Other then swimming they play with their cousins all the time. Sam is three months younger then Lillian. Emma is a month older then Marissa and Dayna is three months younger then Matt. They all love each other a lot and usually get in to trouble a lot too.

Now the big question is 'Can these surgeries get done and can we get back to Utah before Lillian starts school?'
I talked to the surgeon's secretary on Friday about our time tables and hopefully we will get an answer Monday or Tuesday. If the surgeries won't be for another week then we will go back to Utah for a week or so.
The kids and I miss Philip. He has been out to see us on two of the six weekends.

I realized that I haven’t written you all in a while. The excuse is that I haven’t really felt like writing. Matt and Lillian had their heart cauterizations this past week. Both are recovering well and both look like they need to go back in and have surgery. Lillian’s case is that she will be getting a pulmonary valve and reconstructing the part of the heart that the valve will connect too. Matt is not so clear cut. Pictures from his bronchial scope show that his wind pipe is crushed still right at where the branches go off to the lungs. The right side is almost completely crushed and the left side is just semi-smashed down.
The kids have been really funny this past week saying some of the silliest things. I am still just tired from all the craziness of this past week.

May Blues

You got it love the weather, especially when it snows the first day of May. This weather is crazy…I’m crazy…my kids are going crazy. Well Matt came home from the hospital after four days. He came home with oxygen and four days after we were home he came off that. Marissa is sick with another cold and I am hoping that Matt doesn’t get this cold too. Meanwhile, he is scheduled for a busy day May 30th for a bronchoscope and a heart cath..
I have finished painting my dining room this week and am going to paint the entry way this weekend. Wish me luck since the entry is two stories high. We also put our house up for sale. Our medical bills are killing us and we see no end in sight. We will be renting for the next couple of years. I just hate moving around. I did so much as a kid and hated making new friends. So hopefully we will find something close. Oh the joys of keeping a house cleaned with little kids.
My Mom is coming to visit us this weekend and the girls are so excited.
Lillian is doing well. She went on a field trip with her school today. Lillian is also scheduled for a heart cath. the first part of June. The doctors want to measure the pressures in her heart and expand her PA stints.

We're back to 'old times'

It has been too calm at the Baskett home, so Matt decided to spice things up…again. Matt aspirated about 1am Monday morning and had to go to the hospital via ambulance. For those of you in the know, Matt has been sick with a cold this past week. The cold of course went into his lungs and when Matt coughed too hard he threw-up. This happened about three to four times a day. Matt was in the ICU until today when he was moved to the step-down unit. We are hoping he will be back home this weekend.
A huge thank you to some friends: Mark came over in the middle of the night to watch the girls so that both Philip and I could go with Matt to the hospital early Monday. Leilani has been great taking care of the girls these last few days.
Sleep has been lacking for both Philip and I. Philip lacks sleep because he takes the night shift at the hospital. I lack because Marissa woke me up four times last night and the night before I got just a couple of broken hours of sleep. Philip and I need a vacation desperately. Not a fun vacation…just one where we can sleep for a good 24 hours without interruptions.

Where's the Prozac?

Can you believe that it is snowing in April? Yuck. Who’s in charge, because I want to log a complaint. Not only is it snowing, it is like a blizzard out there with the high winds. The kids are literally bouncing off the walls and driving me crazy. Marissa had two meltdowns today alone. The first melt down had to do with not getting gum at Hobby Lobby….gum. This lasted at least half an hour and I couldn’t even drive home because she wouldn’t stay in her seat belt. The second was a few hours later when I was pulling out of the grocery store parking lot. Her seat belt was not put in the plastic rung over her shoulder. I think she is going insane and I need a Prozac.
Lillian is in whining mod. This whining is like finger nails on a chalk board. Matt is catching on too these bad habits that the girls have and is beginning to copy them.
Next week is supposed to be high 70s. Ohhh please be warm sooner.
Regardless, I am painting my living room…again. Kim, my youngest sister, is visiting for the week before she goes up to BYU Idaho for collage. This might be the only time I get to accomplish this task.

Could this finally be the breaking point for Marissa verse Mom regarding her hair? Marissa hasn’t let me touch her hair without screaming for months now. Today, she actually let me wash it (with tears), and let me style it! This is one of those ‘I know God listens to my prayers’ bit.
Matt was super cute today. He is leaning against the couch feeling super cool. I think you can read that expression in his face.
Lillian had a difficult day. She fell off her two wheeler and scraped her knee and later at the park hit her chin causing her mouth to bleed. Any of you who have been around Lillian when she bleeds know that it is a messy deal.
Philip went to Moab with Mark (his partner in crime) to work. He will be gone till late Friday night. Yes… you should pray the kids will be good for me.

Matt's physical therapy

Matt has had a physical therapist coming in twice a month to help him catch up on the day to day things that most of us take for granted. Matt just finally mastered the art of going from lying down to sitting up on his own. Before you may have noticed that he can sit, but he was unable to sit himself up from on his back. The poor guy couldn’t lie back down either. So this week he finally figured it out. Yah!
Marissa has added another 2 gold fish but one died yesterday. I also moved Marissa out of Lillian’s room into her own room. Sorry guys, no more guest room. The toys have been moved from the basement and playroom/study to each of the kid’s rooms. The study is now where Philip works when he is at home.
Lillian gave a talk in Church on Easter Sunday in Primary and did a great job. Next week she needs to bring in a poster about herself to school. I am amost finished decorating her room. Philip put up the picture molding on the walls on Saturday.

Marissa is Three

Marissa turned three this past week. She got a two wheeler with training wheels that she rides around the house. Marissa is also getting bribed to start sleeping in her own room. Last night was the first time she stayed in her own bed all night and was rewarded with a gold fish that she has named 'fish'. We tried to get her to pick an actual name but 'fish' it is. I guess all her creativity goes into the messes she makes. Lillian is singing or humming all day long and driving us crazy. Matthew has started to stick out his tongue constantly. He is acting like a puppy dog and is enjoying the attention he gets.

March Madness

So I understand from several sources that my last post 'Merry Christmas' just doesn't cut it anymore. Here is a short re-cap of Jan. Matt was in the hospital for a couple of days the first week and all of the second week of Jan. The docs discovered that his conduit that is around his pulmonary arteries (pa) has expanded and now is too large. This has created a few problems. First: Matt's trachea is crushed from the bearing weight of the conduit when he lays on his back. He is on 8-10 liters of O2 blow by at night. Second: It crimps a little on the right causing his right lung to receive considerable less O2 then his left. Yeah Jan.!
February...RSV. You with small children probable knew that this was the worst year yet for RSV. On the 2nd. Matt was air lifted from our home via helicopter. It appears that RSV combined with a overly large pa will be life threatening. We were at Children's hospital for two weeks.
Between these two visits too the hospital and since then I have been sick with vertigo, the flu and now a cold.
Marissa has completely lost all sense and now squeezes toothpaste in shoes, around the toilet seat etc. I would hide the toothpaste but that would just mean that she would find something else to make a mess with. Lets face it...toothpaste is easier then cleaning products, hair dye or food to clean up. The one great...super great thing she has done is to potty train herself. No more diapers for Marissa. Even at night she stays dry.
Lillian has been an angel. She is trying to take on more responsibility through making her bed and trying to do the dishes. Lillian is a good helper.
Philip is busy with work. He has landed a few new accounts and has been traveling to Twin Falls and all over Utah.
So how have the Baskett's kept some sense of sanity? We haven't. But several people have stepped up to help us out. My sister Leah flew out for Feb. stay at the hospital. Kim clocked in a few days here and there. My Mom came between visits to the hospital. Many friends: Ervins, Christensens, Coopers, Platts helped bring in dinners and take kids at a moments notice. Other Friends have been their for a shoulder to cry on.
I will post pics soon. Any guesses on what our helicopter bill came too? Keep in mind that their are two paramedics and a pilot.