Home and Doing well

I completely didn't think that we would be home on Wednesday.  Before going into surgery we were planning on her coming home Thursday or Friday.  I even had a substitute job for Wednesday.  So, I spent the night with Marsi in the CICU on Monday night.  Tuesday morning she was transferred to CSU (children's surgical unit).  Endrit and I were both able to spend the night there with her Tuesday night.  On Tuesday we knew that it was possible that we would go home the next day but thought that it would be later in the day so I just went off to work.  I wasn't at work for 30 minutes when I get a text from Endrit saying that Marsi was ready to be released and they were just waiting for me!!!  I honestly couldn't believe it!  Luckily, I was working at a school and in a class that they told me to just leave.  I got there quickly and we were on our way home right at noon on Wednesday.

Marsi was so happy to be home.  She wanted to be her old self and roll around and do push ups.  I tried to stop her, but she wasn't stopping.  I knew she would be really sore, but she really wanted to play.  I let her.  She got SO sad!  It was no where near time to give her any more Tylenol (which she had been on since 12 hours post surgery).  Endrit and I decided one dose of ibprofen wouldn't hurt and would help her with the pain.  She learned to play slowly and pace herself after that.  Such a smart girl!  Nights are still rough.  We decided that daddy is sleeping on the couch while Marsi sleeps in bed with mom since that was the only way that we were able to get her to nap this afternoon...mommy needed a nap and Marsi was having separation anxiety, so we napped together.  We will see how tonight goes.

Today was the day that the surgeon told us to take off Marsi's bandage.  Since I am trying to document everything with her, I took this picture of the incision site.  You can also see the place where they inserted the chest tube on the front.

Here are the chest x-rays that show the little titanium clip that she will forever have in her chest.

Dexter was so happy to get his baby back.  He missed her.

She was just barely released from the hospital and was so happy.  It was cute to see her so happy.

Marsi missed her kitty too.  Dexter is such a good sport when Marsi gets a hold of him.  This time she found his tail and was having fun yanking on it.

She is such a trooper.  She ate solids again today for the first time since Sunday.  She loved it.  She is able to play in her jumper again.  It is fun to see her return to her normal self and even seem to be happier than before.

Heart Surgery Pictures

Marsi had to be at Primary at 6 am.  She was given a little physical and changed into the cutest little scrubs.

We got to the pre-surgery waiting room where mommy and Marsi had some snuggles and a nap before the surgeon and anesthesiologist came to talk to us right before surgery.

This is the first thing that I saw when we were allowed into her post op recovery room in CICU (cardiac ICU) where she stayed overnight.

It was so sad to see her hooked up to so many tubes.  She was such a champ that first night.

Grandma and Grandpa Smith, since they couldn't be there, sent a wonderful gift for Marsi.  She loves the balloon!  She thinks it is the coolest toy ever!  

So many monitors.  I think it is fun that the oxygen monitor shines completely through her thumb and around it.

She also had IVs in both feet.  She still has them in today but they aren't hooked to anything.  They are there for just in case.

This morning she woke up with big smiles.  She won the hearts of every single nurse in the CICU.  They were sad when we were transferred to the regular floor and out of the CICU.

We finally were able to snuggle together.  I think we both liked the snuggle time.

This is the incision point from the surgery.  I wanted to take a picture of it just to show where it is to people.

All in all Marsi (and mom and dad) are doing well.  She is playing and smiling right now.  She is actually playing with her flow by oxygen mask.  I find that kind of funny.  She is happy, so who am I to judge what constitutes a "toy" in the mind of a child?  We could go home tomorrow but if not, it is a 99.9% chance we would go home Thursday at the latest.  All is well here.

Marsi's Surgery/Glasses

First off, we have the surgery for Marsi scheduled.  Crazy enough, it is in 2 days!!!  She is the first surgery scheduled for Monday morning.  We go into the hospital for pre-op on Sunday morning. We will be in the hospital with Marsi for her surgery at 6 am. It is a bit surreal, but I am glad that we are getting the surgery done so soon.  Our baby will be healthy so soon!

Another thing that happened today, I got my 3 new pairs of glasses!  I am so glad that I got them.  I of course have the time to get used to the new prescription, but I think that won't take too long.  So, here they are!  

red pair with transition lenses

black and red polarized sunglasses

green pair with transition lenses

Sleepy Time

Marsi is funny.  Since she has a play jumper we actually have to take her out of it when she is tired, but she loves to go to sleep by herself.  We just have to give her the binkie, lay her down and she does the rest.  It is funny to look at her playing one minute and the next time I look at her she is sleeping like a rock on the floor hanging onto whatever toy she was playing with or halfway rolled over.

She is just a sweetie.  I am a very lucky mom.

Drama Queen

Mommy, it has been a hard day.  I am going to go to sleep weather you want me to or not!

Missing my Parents

This is kind of a poor me post.  I really do feel bad for my parents.  We thought that Endrit would get a job sooner than he has.  We thought that when we moved, we would be passing through my parents place so they could see Marsi.  Well, it didn't happen and it has been months since my parents have seen me or Marsi.  Marsi is getting so big and doing so many things.  I feel bad when I call my mom and tell her of one more thing that Marsi accomplishes because she can't see it.  

It also has been a little bit hard because Marsi is now having heart problems.  We go in for a sedated Echo tomorrow and then schedule surgery.  My mom was with us through her entire other hospitalization so it is sad that they can't be here to support us through this one as well.  We have Endrit's parents, but that is different.  They see Marsi at least every week.  

I guess I am just a little sad right now.  I hope that Marsi and I will be able to go and visit my parent's soon. 

St. Patrick's Day...Peas

Happy St. Patrick's Day from Marsi...the perfect example of Irish...redhead in green.

Marsi is so happy to be in the big girl eating chair!!

This was her very first taste of peas...she didn't know about this stuff.

Yeah...this is better than I thought.  yummy green face.

Rice Cereal

Marsi is such a big girl.  She has been seeming interested in Endrit and I's food so I decided to make her some rice cereal to see if she wanted it.  

It started out slow...

She didn't really know if she liked it at all...

Then she decided it was really yummy and ate it all up!

Postponed Surgery

Well, Marsi is NOT having surgery tomorrow. The surgeon wanted better pictures of part of her heart with a sedated echo. She will have that echo on Monday. Thanks for all of the thoughts and prayers. We will tell everyone when her surgery is going to be when we know.

cranial surgeon appointment

Well, at least there is some good news this week!  Marsi's head is normal.  No surgery, no helmet, nothing needed.  She is perfect...not that I needed a doctor to tell me that.

Updates and Happy Mommy Moment

Well, first off, Endrit didn't get the job in Chicago.  Nothing much else to say there.

Also, I forgot to blog it but Marsi's heart surgery is on Thursday.  She also has her cranial surgeon appointment today to see if we need to do anything about a prematurely closed suture.  I will try to remember to update later on today.

As far as the happy moments, Marsi is a champion at flipping from her back to her front.  She learned how to move her hand out of the way on Sunday and has been flipping over ever since.  It is adorable!

There are a couple of other things that make me feel like an awesome mom.  At first, it made me sad, but now it is just showing me what a big girl she is.  Marsi is very independent!  She loves to do things on her own.  One of those things is sleeping. Marsi sets her own schedule during the day for her naps.  We don't force her to sleep during the day.  We do know her nap times.  But, it is so fun to just have her play around and then just decide to go to sleep where she is playing.  She doesn't need me to put her to sleep.  She doesn't need anything.  She just gets tired and sleeps.  It is adorable.

I have tried since she was about 2 weeks old to set up a bedtime routine.  It took a while for her to go to sleep on the schedule, but it has worked out so well that even with the time change with daylight savings she went to sleep on time!  I was amazed.  This is our routine...

8:00 pm comes around.  Dad goes and gets the bath ready and Mom gets Marsi out of her clothes.

15 minute bath time for Marsi to play and get washed.

It takes a while for Mom to get Marsi ready for bed.  Marsi gets her eczema lotion on and airs out for a few minutes while Mom plays with her.  

Mom puts her night diaper on and dresses her for bed.

At around 8:30 it is "top her off" time where we make sure her little tummy is full.  

When she decides that she is done eating it is time for snuggles.  We snuggle while she is fully awake and we give her kisses.  I think I will start reading to her since we bought a big book of tales.  Plus, I just need to read to her!

Then, when she is fully awake, I lay her down in her crib and walk away.  She doesn't get picked up again until about 4 am for a feeding. If she starts to fuss, I go in and shhh her and give her a binkie, but she doesn't get picked up.  This is so she knows that it is night time and needs to sleep.  

It has worked wonderfully!  She wakes up so happy and gives me smiles before I pick her up in the morning.  If I am home, we lay in bed and nurse, and if I am at work Daddy picks her up and feeds her.  She is so happy and seems to love this routine.  It makes me happy that she is so big and showing that she is growing up so well. She is learning independence and it is fun to watch.

Cardiologist Results

Marsi was an absolute champ today. We got there at about 1:30 for our 2:00 appointment because we had to go through paperwork. We didn't leave Primary Children's until 6:00. The first thing that happened was an EKG. Everything with that was normal. The cardiologist definitely heard the murmur the pediatrition was hearing. We decided to chance having an echochardiogram without sedation because it was Marsi's nap time. She was such a champ through it! They were able to complete the whole thing (about an hour) without any sedation!! When they were done with that, we got the diagnosis. Patent ductus arteriosus. In order to figure out the importance of when it needed to be fixed, we needed to see if her heart was getting enlarged. They found that out through chest x-ray. This showed that her heart was already getting enlarged and that the problem needed to be fixed pretty soon. With everything that was told us, we opted for surgery. We don't know when it is going to be. The surgeon is going to call to make the appointment. Because of that we needed her to have her blood typed and tested so she had to give blood today too. She did so well through all of this. It is heart breaking, but I am glad we caught it early and it can be fixed.

Finding out why...

Ever since having our 5 miscarriages the question has been why.  What physiologically was wrong that caused the losses.  Did the baby aspirin actually make me able to keep a baby?  Well, hopefully, we will be able to find out that answer...or at least try to find it.  I went to the family practitioner today and asked for her to do blood work.  She automatically referred me to a reproductive endocrinologist (RE).  It isn't for infertility.  I am very glad that we might get some answers for when we decide it is time for another baby.  I called to make the appointment today knowing that most REs have a waiting period for quite a while.  Being with the University of Utah, there are a lot of REs at that hospital.  I was able to get into one on Tuesday.  It is a good step in the right direction.

I am glad that I called because in the paperwork it told me to call my insurance to see the coverage for reproductive endocrinology. When I called they said that my insurance coverage had terminated!!!!  Needless to say I was angry!  I immediately called the people that I pay the premium to.  She was appalled that it was terminated as she is the only person that says that it can be terminated before 18 months is up and she didn't make that decision.  It turned out to be a simple data entry typo in the part of the insurance company.  So, at least that was taken care of before we got massive bills from Primary Children's Hospital for Marsi's echo/cardiology and cranial surgeon appointments.

I am glad that we don't have to wait too long to find out about Marsi's heart and our miscarriages.  With this awesome insurance, it is really nice.  Marsi's appointments are free at this point.  Mine are almost free.  Might as well figure out all this stuff before we have a deductible again.

Marsi's Pedi Appt.

Today was Marsi's regular well child 4 month pediatric appointment.  She weighs 15 lbs 7.5 oz and is 25.25 inches long.  She gabbed at me while we were alone in the room. She is adorable and sweet.  But, there is some not so great news as well.

We have known since her birth that she has had a bit of a heart murmur but since she was growing so well and everything it wasn't worrying the doctor.  Well now, 4 months later, the heart murmur hasn't lessened, but has gotten worse.  We were told to go to a cardiologist within the next 2 weeks.  We are extremely lucky that Primary Children's Cardiology had an appointment for Monday.  So, we are going to have Marsi get an echocardiogram that day as well as meeting with the cardiologist to go over the results.

I wish I said that was the only thing to report.  Marsi has also had a ridge on her scull for a while.  The doctor recommended that we see another cranial specialist to investigate the possibility of Marsi having Craniosynostosis.  That means her soft spot is fusing too quickly causing deformation of the skull.  We have that appointment on the 13th.  Most likely she will have an x-ray or a CT scan done to see if that, in fact, is what is happening.

Needless to say, it has been a hard day for Mom and Dad.  I think more so for Mom.  It is truly hard to think that Marsi could have these problems when she is so happy and smiley all the time.  She is a normal baby with fussiness sometimes.  But, most of the time she is just a perfect little girl.  We could all use a few spare thoughts and prayers.