Catching Up

Hope has been home for a few days now and I wanted to catch up with our life.  It has been wonderful with Hope home.  She has been eating better than ever and sleeping just as well.  I can't believe the difference in how she acts and how much more she smiles now that she is home.  We got home Sunday and spent a nice evening at home with Hope and the boys.  Hope has been spending some time outside because it has actually been really nice outside.  She loves being outside and I can't wait for summer to get here so she can spend more time outside.  The boys love having her home too and spend as much time as possible trying to get her to smile.

I would like everyone to say a prayer for Kylan tomorrow.  He is having his Glenn and he is a real cutie.  I met his parents, Erica and Paul, while Hope was in the hospital having her Norwood.  They are great people and wonderful parents and I know he is going to do great with his Glenn.  I will be praying for him all day and visiting his parents while we take Hope to the hospital to get a few stitches removed.  Hope had to have external stitches because the internal ones didn't heal so well after her Norwood.  They look icky, but I am hoping the scar will heal better than her first one.

I want to thank everyone that has been keeping our family in your thoughts and prayers.  God listens and I know they helped when Hope was having her surgery.  Dr. Mavroudis saw us in the waiting room when we were hanging out and he said "She looks really good...she didn't lose any development at all.  I was really worried about her in there...especially when she had problems coming off bypass."  I am so glad he didn't tell us that on the day of her surgery.  I would have been freaking out.  This shows me exactly how much God's hand has in the operating room.

WE ARE HOME

I don't have much time because we are spending every second with Hope, but I wanted to let everyone know that we are home.  I will update more tomorrow!

Goodnight and sweet dreams.

Hopefully tomorrow

we will be coming home. 

Hope looks so good...just can't wait until they take the IV out of her head.

Hope has been showing everyone how much she wants to come home.  Her numbers all look good, including her kidneys (YEAH!!!).  She has taken a break from sleeping and has maybe slept for 5 hours all last night and today.  I am hoping she will catch up on her sleep when she gets home because she and I both need it.  Jerry gets the privilege (NOT) of staying at the hospital tonight.  He will get to see how often the nurses feel the need to come and disturb everyone's sleep all night.  I swear they have a schedule where they must wake up a sleeping baby every hour.  After finally getting Hope to sleep this afternoon, I had them put a sign up not to disturb her.  I know she needs sleep...she has been yawning like crazy.

 Grandma brought the boys up and we all had fun making glove balloons.

At rounds this morning, they basically said that if everything remains exactly like it is, she will come home tomorrow.  Jerry may be spending the night, but I plan to be there early tomorrow to make sure they start the discharge paperwork right away.  I don't want to spend one more minute in the hospital than we have to.

Stepping down

Well...we made it!  Hope is in step down which means close to coming home.  I am hoping to annoy them just enough to get her freed this weekend.  She is doing so good and I am so proud of her.  She hit a few bumps in the road, but managed to get through them without too much added time.  Her sats are sitting in the high 70s as she is sleeping right now.  I don't have the little connection thingy to upload pictures, so I will post them tomorrow.  I am spending the night with my little princess...which means she will get lots of sleep and I will try and get a few hours.

Thank you all for your thoughts and prayers.  We appreciate everyone praying for us and thinking about us...especially Hope.

What a difference a day makes

My little cutie...awake and smiling and sucking her favorite fingers.  I know the head IV looks kind of funny, but it really is the best place to put an IV on Hope.  She can't reach it and that means it will actually stay put!

Check out the 93...that is her oxygen saturation!  I have NEVER seen it that high.  She was sleeping really well and I had to take a picture!

Hope made a complete turnaround!  They extubated her late last night and she did fine.  This morning they kept lowering her 02 and about 4 pm they put her on low flow and she was at 1 liter...basically room air with a little push.  I got to feed my starving little girl today and she showed them how hungry a little girl can get in 3 days of not eating.  She downed 4 ounces in about 3 minutes and decided to finish 2 more ounces over the next hour.  Dawn was Hope's nurse again today and I think she got her addicted to 'sweeties'.  This is a little tube full of sugar water that you put on a pacifier.  Hope LOVES the sweeties.

Based on how Hope did today, I am thinking she will be moving to step-down tomorrow...Saturday at the latest.  Of course, Hope may decide to throw out another curve ball, but I am praying almost non-stop that she doesn't.  She looks so good and she was talking and looking around most of the day today.  Surprisingly, she doesn't seem to be in as much pain as I thought she would. 

I also spent a little time away from Hope today giving blood.  They were doing a blood drive at the hospital and as Hope used someone else's blood, I felt I should give some of mine to someone else.  I encourage everyone to give blood when there is a blood drive.  It is an easy way to help someone else.

Dang it...

 Here is Hope without a breathing tube and without any drainage tubes.  I took this before they put everything back to get rid of the pneumothorax.  Notice her mittens...this is to keep her from taking everything out on her own.

Well...everyone knows that Hope does everything just a little different than expected.  This post would have been so different 4 hours ago.  At 6pm, Hope was extubated and had no drainage tubes.  Her sats were in the mid 80s and she was waking up and trying to take everything out.  Feisty as can be...which is no surprise to anyone.  Fast forward to 6:30pm...Hope's sats start dropping and I get worried.  The cardiac nurse was in the hall and I flagged her down.  She was concerned and paged respiratory to see if they could come and suction Hope out a little.  Well...in the meantime, Nancy (the cardiac nurse) took a look at Hope's x-ray.  Pneumothorax...it is now a word I don't really like.  I had to google it to see exactly what it is because they talked about it a lot and it scared me:

A collapsed lung, or pneumothorax, is the collection of air in the space around the lungs. This buildup of air puts pressure on the lung, so it cannot expand as much as it normally does when you take a breath.

I guess when they took out the drainage tubes earlier today a little air must have gotten into her chest.  This caused the air pocket near her lungs which in turn caused her lung to deflate.  So, in went her breathing tube because of the sedation and her low sats.  In went a drainage tube to get rid of the air.  My little girl is again sedated and resting comfortably for the night.  She is right where she was last night.  I am going to pretend today didn't really happen so that when everything is removed tomorrow (hopefully), it will be a happy day like today.

Please pray that the drainage tube worked and the pneumothorax is gone.  Also, prayers for another great extubation would be nice too.  I don't think they will do it tonight, but I am pretty sure they will try in the morning.

Thanks for all the prayers.  They really are working beautifully.  Hope just likes to keep everyone on their toes.

Jump Rope for Heart

My nephew, Dominic, is jumping rope for the American Heart Association for Hope.  He has already donated money he received at Christmas!  Hope and I plan to be there when he jumps and celebrate with him.

Please help Dominic reach his goal of $1000, by donating.  The American Heart Association provides a ton of resources and is using this drive to not only raise money, but it also raises awareness for the kids that take part.  They learn about the heart and they learn how to be healthy. 

Here is the information on how you can donate.  Every little bit will help!

Pee Baby Pee

Hope is doing really good today.  She is still really puffy and really needs to pee to get the fluid off.  She is doing a really good job peeing and the fluid is coming off pretty good.  Until she gets rid of more fluid, the breathing tube will stay in.  I am hopeful that tomorrow will be the day they can remove the tube, but I will be just as happy if it is Thursday.

Dawn was Hope's nurse today and she is the greatest.  She is super nice and she is the nurse that let me hold Hope when she was in PICU before.  She explains everything really well and makes sure that I understand everything that is going on.  She encourages me to learn as much as I can about everything Hope is taking and all of the machines.  She won't be back until Thursday, but I am pretty sure Hope will still be in PICU on Thursday...hopefully getting ready to move to Step Down.

They decided to use external stitches this time with Hope.  She didn't heal real well when they used the internal ones and they think the external ones will heal better.  I have pretty sensitive skin, so I am guessing she has the same issues.  I hope it won't be a problem getting her to heal, but I think that is something that is not really a big concern.

Kylan, Erica, and Paul came to visit us today.  Kylan had some pre-op tests to get ready for his heart catheterization tomorrow.  I am sure he will do great and I am praying he will get to go home with Erica and Paul tomorrow night.  Their local paper wrote an article about them...it is here if you want to read about their journey.  Please keep them in your prayers tomorrow. 

Thank you again for keeping us in your thoughts and prayers.  God is listening and answering them every day!

Hope is on the mend

Hope made it to PICU around 5 pm last night.  We were finally able to see her around 6:30 pm.  Dr. Mavroudis was there and talked to us for a little while about the additional work he had to do on her little heart.  Her pulmonary artery was pretty small, so he had to make it bigger and put a patch on it.  That is why she had problems when they first tried to get her off the bypass machine.  Once he made it bigger, she didn't have any problems coming off bypass.  He did tell us that it may need to be ballooned in the future, but that could probably be done in the cath lab. 

Cat was the nurse when Hope was brought back from surgery.  She is the same nurse Hope had when she was brought back from surgery the first time.  It was kind of nice to see some of the same faces in PICU.  I know they will take really good care of Hope.  Jim is the night nurse and he was also the nurse that was working on the day Hope was brought over from Akron Childrens Hospital.  He is really sweet and we felt really good around 8 pm, so we decided to leave her in the hands of PICU and head home for a good night's sleep. 

We want to thank each and everyone that kept us in your thoughts and prayers.  They worked again for our little miracle and we cannot begin to describe how wonderful we feel and how much love we feel from everyone around us.

Surgery Day - a few updates

I am writing this at 3pm and Hope is still on bypass (heart/lung machine).  We started the day pretty early...at 7:30am they took Hope back to start getting her ready for surgery.  It took them 2 hours before they were even able to make an incision.  I am guessing they were having problems finding veins and arteries to get IV access.  She went on bypass at 11am and that is when they started taking down the Sano Shunt from the Norwood.  After that was done they did the Glenn...connecting the Superior Vena Cava to the Pulmonary Artery.  We are exhausted already and know that there are still more updates to come.  I am scared about what is happening and I don't feel like the updates are as good as I was expecting.  It has been over 8 hours and we had hoped that she would be out and ready for us to see after 6 hours.  Her Norwood didn't seem to take this long and we still have hours before we will be able to see her.  After they take her off bypass, they will need to clean up and make sure she is not bleeding.  Then they will hopefully close her up.  Finally, they will try and extubate her.  I will update more later today...hopefully after we see her.

Please say a few extra prayers that she is able to get off bypass and be extubated and recover really well.  Thank you for keeping us in your thoughts and prayers.

Hope is in surgery

I can't tell you how much I really don't like the head IVs.

A few updates.  Jerry brought Hope up to the hospital yesterday.  We were told she needed to be here by noon, so Jerry brought her and I took the boys to Chuck E Cheese for Amanda's Birthday Party.  The reason they wanted Hope here early was to start her IV so that she was well hydrated for the surgery.  I really don't understand why they needed her early though...they didn't put the IV in until after 5 pm.  She had a pretty good night and slept most of it...other than when she got hungry. 

About 7 am we met with Dr. Mavroudis and a bunch of other doctors, nurses, etc. to talk more about the surgery.  Shortly after that...Jerry carried her to the OR.  I took her to the Cath Lab and it was really hard watching them put her under, so I elected not to go back.  I kissed her when they took her from her room and then broke down.  It is very scary knowing that they are working on her heart right now.

I will update more throughout the day.

Please keep us all in your thoughts and prayers.

Share Your Story

Stef from When Life Hands You a Broken Heart is teaming up with the Children's Heart Foundation to gather stories about our little heart babies/children/adults born with Congenital Heart Defects to produce a documentary for PBS.  All of the information you need to submit your story and photo to be included in the documentary is here. 

Thank you Stef for all the wonderful work you do to bring awareness to Congenital Heart Defects.  You are an amazing woman!

11 Pounds, Home Life, and the Glenn

 

This is Hope in her hospital gown...I really wish they could splurge and get some pink gowns for the little girls.

 
So many updates to share with everyone. We made it home on Sunday afternoon and Hope has been doing great. Her sats are back in the high 70s and low 80s. She is no longer taking her Captopril or Lasix. We are getting her ready for her Glenn and they want to make sure her kidneys are working their best on Monday, the 8th...the date of her Glenn.  She will be admitted on the 7th for IV fluids (this is a kidney thing and not normally needed for the Glenn).  We are praying like crazy that the surgery goes really well and the recovery is a lot easier than her recovery from her catheterization.

 

Daddy and his little girl!

Hope reached her 11 pound milestone today, although I am not sure how accurate that is. She is off her Lasix and Captopril, so no diuretics means she may be retaining fluids and that means her weight may not be accurate. I still liked seeing it on the scale today, so I thought I would put it up on her blog.

Home life is great and Hope definitely knew she was coming home and has been a different little girl at home. When we left the hospital she was so much happier and I know that when we put her in the car she knew we were heading home. She has been laughing and talking with the boys since we came home. I know they missed her as well.

 

My little cutie loved playing with all the wires...too much fun!

I am going to post a little information on the Glenn for anyone that is not sure what it is:

The bidirectional Glenn procedure is the surgery used to prepare the heart for a Fontan procedure. It is a surgery in which a detour (shunt) is created from the aorta to the pulmonary artery. The surgery is performed on infants and young children who are born with a congenital heart defect that reduces the amount of oxygen-rich blood circulating throughout the body. These infants often show signs such as a bluish tint (cyanosis) to the skin, lips, fingernails and other parts of the body. Although a successful procedure will improve immediate signs and symptoms of the underlying heart defect, the procedure does not correct the heart defect. Other surgeries are usually necessary in the future to repair the defect itself.


The bidirectional shunt is performed by connecting the superior vena cava (SVC) to the right branch of the pulmonary artery using fine sutures, and dividing or tying up the pulmonary artery. Now, venous blood from the head and upper limbs will pass directly to the lungs, bypassing the right ventricle. The venous blood from the lower half of the body however will continue to enter the heart.

How is a BDG helpful ?

It decreases volume load on the single ventricle while improving oxygen saturation as compared to the pre-operative state. In addition, by being a low-pressure shunt, it does not carry the risk of causing lung blood vessel thickening and hardening.