Chirstmas card

I thought I would post our card in case I forgot to email it to any of you. Maybe next year I will be on top of things enough to send cards via the U.S. mail. Have a great Christmas Eve.

Lizzy is home!

This afternoon the nightmare ended and our sweet baby is home again. I feel lucky Lizzy was only there for six days. I can't imagine how hard it is on parents whose kids are in the hospital for weeks.
This picture is when I held her for the first time since the surgery. It was so hard that first day to see her cry and not be able to pick her up. I was so happy when they let me hold her the next day but it still felt wierd because she was hooked up to so many monitors.


By day two and three she slowly got tubes and things removed and seemed more like our Lizzy again. It was hard to get her to eat and she was throwing what little she ate on the second day. She absolutely refused a bottle and we were desperate to get her to eat so I stayed night and day to try to get her to breastfeed. After many nights sleeping with my clothes on and alarms beeping every five seconds I am very excited to be able to be in my own bed tonight. Lizzy is eating well now and she is her old happy self. She has a lot of bruises, needle pokes, and skin rashes from all the tape but she doesn't act like it bothers her too much. Tylenol is all she needs for pain and we have to be extra careful when holding her. The latest echocardiogram showed that the hole is fixed and working great. The bad news is that her tricuspid valve is slightly damaged (The surgeon works through that valve to repair the hole). It happens about 40% of the time after this surgery and usually doesn't cause a problem. It is something that will require a close eye throughout her life but hopefully won't be a big deal. A big thanks to Marilyn who kept our apartment spic and span while taking care of Tyler. I missed Tyler so much this week but it was comforting to know that he was in good hands. Thanks again for all the phone calls, prayers, and support. I love you all.

Lizzy After Surgery

This is Lizzy in the intensive care unit right after surgery.

She has:

• 2 IV's; one in her foot and one in her right wrist
• an arterial line in her left groin area
• a central line from her neck through her jugular vein to her heart
• a Foley catheter in her bladder
• a chest tube draining her thorax
• those wires are a temporary pace-maker
• a pulse-ox monitor on her left thumb
• temperature and cardiac output monitors on her forehead and lower back

She is a little out-of-it from all the meds, and she mostly just lays there and groans occasionally. It is a little sad, but we know it won't last long.

Open Heart Surgery!

Well poor little Lizzy only gained three ounces at her last weigh in. Dr. Samyn the cardiologist thinks she should have surgery to fix the hole in her heart as soon as possible. They are going to squeeze Lizzy into the December surgical schedule. We just found out that it is going to be on Monday December 10th. After the surgery Lizzy will be in the hospital for seven to ten days! Thank goodness My mom and Andy's mom are coming to help out! I am soooo grateful for their willingness to come, espically so close to Christmas. I know they will be sacrificing a lot to come during the busy holiday season. Keep Lizzy in your prayers. Keep me in your prayers too- The thought of my baby's chest being cut open makes me nauseous and weak at the knees but I feel confident things will be okay. I love you all!

Grammuh and Grampuh's Visit

Grammuh Marilyn and Grampuh Gary visited for Lizzy's blessing and we had a great weekend with them. They showed up with all sorts of goodies and presents for all of us and we LOVE everything they brought. We ate at some yummy restaurants and had our own Thanksgiving dinner on Sunday after Lizzy's blessing. The food was delicious, I love Marilyn's cooking. Tyler had a lot of fun joking around with his grandparents, he especially loved playing with Grampuh Gary. We did lots of fun things including the Discovery World Museum in downtown Milwaukee and the Mitchel Park Domes where there are beautiful indoor gardens. Thanks for the fun visit Gary and Marilyn, we love you guys!

Lizzy's blessing

Lizzy looked like an angel in the beautiful blessing gown from Grammuh Marilyn. Andy gave a very heartfelt and sweet blessing. We were so glad to have Gary and Marilyn and our close friends there for the blessing. I only wish all our family could have been there to share the wonderful day with us.

Han Solo

Tyler put on my Baby Bjorn and said "This is my Han Solo costume!" He would shoot his gun at the storm troopers on T.V. while we watched Star Wars.

Winter is coming

Tyler had fun trying on all the winter things as I pulled them out of a a box from the basement. He put on the ski goggles and said he was a storm trooper. He wore them for at least an hour- even sitting by Andy to watch a football game.

Another medical update for Lizzy Grace

Lizzy had a bit of a disheartening visit to the Doctor’s on Monday. She has been starting to have more pronounced symptoms of the heart failure and so I called the doctor to let her know. She told me to bring her in and get another chest xray. Lizzie’s xray showed her heart had enlarged a little bit more. Dr. Samyn prescribed another medication called Captopril. Captopril will reduce the pressure on the left side of the heart so hopefully less blood will escape through that hole going the wrong way. She takes it three times a day so poor lizzy has to gag down medicine five times a day. She actually is really good at taking it- what an angel.
The worst part of our visit is that Lizzy had not gained ANY weight since the last visit which means that she truly is too tired to take in enough food. I am going to try more frequent short feedings and I have been advised to wake her up every three hours in the night to eat too. Hopefully along with the medication and more persistent food offering she will eat enough to gain weight. Dr. Samyn said it sounds like she will definitely need surgery and the sooner the better. The surgery schedule is totally full for December and kids who are already in the hospital waiting take priority so it looks like maybe January. Hopefully Lizzy will start gaining weight- the last resort is to insert a feeding tube. Does anyone have any advice getting babies to take a bottle? It would be nice to fortify her meals sometimes but she is not much of a bottle lover. We will keep trying. Thanks again for all your support and love.

My New Love

When Marilyn was visiting us to help with baby Lizzy she bought a varity of yummy treats. One of them was Haagen-Dazs Mayan Chocolate ice cream. I instantly fell in love with that chocolatey cinnamon flavor. I finally let myself buy some the other day and I have some every night before bed. Thanks Marilyn- I will blame you for not losing any of the baby weight. Just kidding. If any of you haven't tried it you must, it's heavenly!

This is Halloween, Halloween, Halloween

Lizzy made a very cute pumpkin.

Tyler was Buzz Lightyear for Halloween-complete with wings that light up! He loves his costume that grandma Marilyn got for him. We went trick or treating at the Medical college along with a zillion other children of med stuents and residents. The trick or treating went into offices and rooms throughout four levels of the college. It is a really fun tradition they do every year.

These are Ty's two best friends: Mikayla Hunter (a bride) and Sam Crosby (a power ranger).

I was hoping to post some video clips but I can't get ours to upload- I'll try again tomorrow.

Pre-Halloween festivities

Pumpkin Carving

This is a Halloween "haunted house". Tyler and some friends got together at our apartment to make these cute haunted houses. They are made from chocolate graham crackers and various halloween goodies.

Tyler mostly had fun eating it afterward.

Lizzy's medical update

I will start at the beginning for those of you who don’t know the story. Our baby Lizzy was diagnosed with something called VSD (ventricular septal defect). This is basically a hole between the ventricles of the heart. The echocardiogram showed that it is a much larger hole than usual. We discovered it because the pediatrician heard a loud heart murmur and sent us to a cardiologist. We are hoping that the hole will close on its own because if not, Lizzy will eventually need open heart surgery to repair it. For now we are just trying to keep her eating well so that she will continue to gain a healthy amount of weight. Eating is hard work for a baby and because of her heart defect, extra fluid builds up in the lungs making it hard to breathe. This causes her to get tired and sweaty while eating but it is not bad yet and she is still eating really well. At her appointment a couple days ago she was started on a medication called Lasix which will help get rid of excess fluid in her lungs making it easier for her to breathe. This will hopefully prevent her from getting winded while nursing and she will continue to eat a sufficient amount of breastmilk. Her chest x-ray showed that her heart was only mildly enlarged and she gained a good amount of weight. Because of this good news Dr. Samyn (the cardiologist) thinks she does not need surgery right away. That’s all for now, her next follow up appointment is the Monday after Thanksgiving. Thank you so much for all the phone calls and support you have shown us since this all started. We ar so lucky to have such great family and friends. Please keep Lizzy in your prayers!

Pumpkin Pickin'

We had fun last weekend picking pumpkins at a cute local farm. We went on a hayride and then picked a pumpkin for each member of the family, even a little one for Lizzie. Lizzie slept the whole time in our cool new sling (thanks Grandma Marilyn and Grandpa Gary). Afterward we went to Oscars, our favorite local hamburger and frozen custard place.

Siblings

After church I was taking pictures of Lizzy because she looked so cute in her dress. Tyler got a little jealous and went and got his simalar blanket (Grandma Jackie gives one to each her grandchildren). He is always wanting to hold and play with her.

Tyler's Self-Portrait

Tyler drew this today totally on his own and proudly presented it to us, highlighting such features as "mine eyes, mine nose, and mine legs and mine shoes!" We are very proud, as this is his first drawing of any human figure.

No catching up!

Okay everyone I'm sorry I am the world's worst blogger. I have decided to stop thinking about all the pictures and things I have to do to catch up because that is why I keep putting it off. I am going to start fresh today without posting all my pictures from last summer. That makes it seem more do-able. I vow to be a more consistant blooger from now on!

Lizzy

Lizzy is sleeping on the beautiful quilt that Marilyn made, if you look close you can see the embroidery on it. It is an amazing quilt!

Last Sunday Andy and Tyler made orange cookies for Halloween.

Lizzy's first visitors

Josh and Jill Hunter came with their kids Mikalya and Alise

The Crosbys visited too. Here is Sam holding Lizzy.

Home from the Hospital

We got home from the hospital yesterday afternoon. It is good to be home! Andy is taking good care of me, and Tyler doesn't seem too jealous yet. Ty Ty is always kissing her and saying "he's so cute" even though I keep explaining that Lizzy is a "she". Our first night was a little rocky (Lizzy still has her days and nights mixed up) but I got to take a nap today while my friends took care of Tyler. I posted some more pictures of the blessed event.

Proud Mommy and Daddy