On the Road Again

We headed down to Milwaukee at 2pm yesterday. We stopped part way and gave Lucie a bottle. Alida was quiet and smiley the whole way down. Lucie, not so much. Being confined in a car seat for 3 hours isn’t really her thing these days.

Lucie was super cranked up at the hotel. We wrestled with her in bed for awhile to expend some energy. Once we put her in the pack n play, she settled down quicker than we expected. We were up and on our way to the hospital by 6am. Alida was very well behaved during the check in process. Brian took Lucie to the cafeteria to eat.

I am now in the waiting room and Brian is at the hotel with Lucie so she can nap. The first update from the cath lab is that they got the IV in on the first try. They got a cath in successfully into a vein in the right groin. The artery was not successful on the right, but they did get in on the left. They anticipate it will take about 3 hours total from the start.

We have also met two other families today that we have connected with through Facebook groups. It’s nice to make connections with other heart families. Lots of prayers and thoughts going out to all of them! Thank you to everyone for your ongoing thoughts and prayers. We are hoping the cath results in good news. We will keep everyone posted as often as possible.

11 Month Photos & A Quick Update

Alida was off oxygen from 6/11-6/26. It was a wonderful two weeks of freedom. Then she got another cold and had to go back on oxygen. Her cold wasn’t horrible and she is better now, but she remains on oxygen. We have tried to wean her off several times and she just isn’t tolerating it. It’s hard to say why. It’s possible that it’s because of her heart now, not her lungs. She will sit at 90-92 with 1/4L of oxygen and then once we take her off she drops down to 77-79.

Alida had her pre op appointment with cardiologist Dr. Okorie yesterday. He did a chest x-ray and some blood work. He thinks her lungs sound fine and he doesn’t anticipate the recent illness will have an effect on the ability to proceed with surgery. Her chest X-ray showed some chronic wetness near her heart but her peripheral lungs looked good. Her liver functions were good which means she isn’t showing signs of an infection (they were elevated in April/May when she was very ill). Her BNP, the main heart failure indicator was elevated. Under 100 is normal, 100-200 is mild heart failure. Hers was 128. Dr. Okorie said her shunt is still open. He doesn’t think we are at risk to have it clot off in the immediate future, but he also doesn’t want to put the Glenn off. They will discuss her again during the surgical round table on Thursday and Dr. Okorie will call me to let me know how it went. Nothing is expected to change. They will make any final surgical decisions after Monday’s heart cath.

We head down to Milwaukee on Sunday. We are on the waiting list for the Ronald McDonald House. As the time draws closer, we are anxious and our hearts are heavy.

But to end on a light note, Alida is planning on opening a baby yoga studio.

We Need More Loveys in This World

Brian and I started this blog a year ago. It’s initial intent was to keep everyone updated as to how the pregnancy was going as well as be an outlet for Brian and I. We both enjoy writing and it was a way to express feelings, challenges and joys. The blog has grown into a beautiful account of the girls lives that we hope to share with them someday.

With the blog being public, it can also be read by complete strangers, some of which are going through similar experiences and can find comfort, hope, and companionship in knowing they aren’t alone. A couple weeks ago, I began communicating with Stacy. Her youngest daughter is having heart surgery this summer. She also has two other daughters. The older girls were making what they call “loveys” for their younger sister’s hospital stay. Loveys are little blankets that also have a pocket for their stuffed animals. Well the girls decided Alida and Lucie needed loveys too. So with Stacy’s help, they made blankets for our girls and sent them to us with homemade cards and a beautifully decorated envelope. Here are pictures of Stacy’s girls with the loveys:

Here is Alida with her lovey (I couldn’t get Lucie to hold still long enough to get a picture of her with her lovey):

The girls’ kind hearts and generosity touched us deeply. Them wanting to make blankets for other girls that they have never met before is a beautiful act of kindness. There is a chance we will cross paths in Milwaukee and get to meet and thank them in person.

We always talk about how blessed we are to have such amazing and supportive family and friends. We have now seen the ability of strangers to touch our lives in ways we will never forget. With more loveys in the world, the future is very bright.

So Much Fun!

Since shedding the oxygen, Alida has really been able to share her personality with us. Lucie is a total goofball, but now Ali is showing us her sense of humor too. We were able to capture a precious minute and a half.

Believe in Miracles

Despite our decreased doctors appointments and hospital stays, we have been staying quite busy here. Brian has officially been approved as a McDonalds owner/operator, which has been keeping him busy, including a three day stay in Chicago this week. Morgan, our amazing nanny, has been working more hours this summer while she is off from school. She is such a blessing in our life. She is extremely dependable and good with the girls. Her increased hours has given me more of an opportunity to get out of the house. I have the occasional lunch dates, but I have become very passionate about volunteering (returning to my high school roots). I can’t commit to a job right now with the upcoming surgery and Alida’s unpredictable medical needs, but volunteering is a perfect fit. I will elaborate more on that some other time. Another thing I did recently was go on a girls’ night with Corrie Bohm on 6/5/14. We did a canvas painting class at Greenwood Hills, put on by Gretchen from Clay House. We had a fabulous time painting our dandelion canvases. On a last minute impulse I added “Believe in Miracles” to my print.

Alida has been pulling her oxygen cannula off her face at least daily lately. Her cheeks were starting to get raw. On Wednesday 6/11/14, just before it was time to start our bedtime routine, she ripped her oxygen off while sitting in her high chair (she still is not taking anything by mouth, we just include her on family dinner time). I decided to carry her upstairs without it, no strings attached. It was so nice not carrying around her flow meter and getting caught on every corner, loose shoe or toy, and the dog bed with her yards of tubing. After about 10 minutes I noticed she wasn’t her normal no-oxygen-blue color. I grabbed the pulse ox to check her sats, 85-88! Previously without oxygen she would drop into the 70’s within 5 minutes. We left her without oxygen and the pulse ox on overnight. She did great. We are now going on a week of no oxygen! She is even more beautiful without her oxygen. After 322 days, she is finally oxygen free.

Everyone wants to know, does this mean no surgery? What is the physiological reason she is off oxygen? Humans develop new lung sacs until they are about 8 years old. Given that Alida is finally a little bit bigger than her past several stagnant months (she is now 5.69kg or 12# 8.7oz), she has developed more healthy lung tissue and has likely outgrown her “preemie” lungs. We have informed our cardiologist of the change. While he was excited about it, he seemed to imply it was likely due to her lungs, not her heart. There is the small chance that her right ventricle is finally getting bigger and more efficient. If that’s the case, they will find that out during the 7/21 cath lab. Then the decision can be made if surgery can be moved out or cancelled. This is unlikely, but we will try to believe in miracles. Even if she still needs the Glenn procedure on 7/23, being off oxygen will help with the success of and recovery from that surgery.

Lucie is into everything. She wants to stand all the time and is becoming a very efficient army crawler. She is babbling “dadadad’s” and “babababa’s.” She has discovered the dog food and that she can take the bolt cap off the base of the toilet. She likes to put both of the aforementioned in her mouth.

We enjoyed Father’s Day as a family. We went to St. Joseph’s Hospital NICU’s 45th reunion in Marshfield and spent some time at Grandma and Grandpa Fish’s with Jeff, Aschley, and Oliver. Alida even fell asleep on her tummy (which is huge progress from previously not tolerating tummy time at all).

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The Daisy Award

We nominated Micki and Jeannie for an award at St. Joseph’s Hospital. It’s to recognize staff that are outstanding role models as well as exhibit the following attributes:
*Applies exceptional interpersonal skills with patients, families, peers, and colleagues.
*Demonstrates extraordinary care to patients and families through development of mutual trust, respect, and emotional support.
*Has significantly “made a difference” in the life of a patient.
*Has created a sense of family.
*Generates enthusiasm and energy in nursing.
*Listens not only with ears, but also with heart.

Last Monday we received an email notifying us that they were giving them both the award! So yesterday we packed up the girls and drove to Marshfield for a surprise award ceremony. Unfortunately Jeannie was sick and unable to make it. Below are some photos from the event as well as our submission essay. We are so honored to have these amazing women in our lives!

We are nominating Micki Free and Jeannie Matsch for the Daisy Award. It is difficult for us to separate the nominations as they were our primary care team together. We have identical twin girls that were born on July 24, 2013, Alida Jeanne (1#8oz) and Lucie Kaye (2#11oz), at 29.2 weeks (11 weeks premature).

First of all, we want to commend all of the NICU nurses as a unit. They are so dedicated to caring for all of the teeny tiny bundles of joy. It can be a very emotional place. We cried with more than one nurse on more than one occasion. On more than one occasion, our little babies required someone to save their life, and the nurses stepped in and obliged. The NICU is not just a place for the nurses to care for the patients. It is also a place for them to communicate with the parents. This is an important part of the NICU experience. They take on the role of teacher and counselor. They always take everything in stride.

One day we arrived at the girls’ bedsides and found a sign that read, “Primary Care Specialists: Jeannie and Micki.” Jeannie and Micki requested to be assigned to our girls. We were excited about this as we didn’t know this was a possibility and Micki and Jeannie were already creating a special place in our hearts and our family. They have been our girls’ guardian angels, our counselors, our support crew, our interpreters in the medical maze, and our friends. They have understood us when no one else in our world could quite grasp what we were going through. They loved and cared for our children as though they were their own.

The first time I met Jeannie was a day or two after the girls were born. She gave me baby books for the girls’ NICU journey. She gave me a hug. I cried. Jeannie has a knack for making me cry. I can be strong listening to the doctors and asking questions. I can remain objective and keep it together. Once Jeannie hugs me, all bets are off. She is caring and sincere. She always made me feel safe and was accepting of all of my emotions and tears throughout our journey.

Jeannie’s passion is second to none. When the girls were to be extubated, Alida couldn’t be because her nose was too small to switch to nasal prongs. Jeannie wrote to the company and told them they should start prongs for micro preemies. Turns out they were in the process of making them and now Marshfield clinic is a pilot for the product. Jeannie would call the NICU at 2AM just to check on the girls because she was having a “feeling.” She had to make sure they were okay. This illustrates her extraordinary passion and care for her patients.

She was not afraid to tell the doctors what the girls needed and stand up for what she thought was best. Jeannie has the experience and knowledge to be confident in advocating what she thinks is best for her patients. This fosters trust and respect with the physicians, her peers, and the families of the babies. Jeannie’s has made a difference in our lives beyond the NICU. Jeannie came to Milwaukee for Alida’s heart surgery on 11/27/13 and stayed with us for Thanksgiving. The list is endless in the ways Jeannie is passionate about her job, her patients, her family, and her friends.

Then there’s Micki. We didn’t meet Micki until a couple weeks after the girls were born. Alida was having a hard time dealing with the area of the NICU she was located in. As a cardiac baby she was very sensitive to noise and light. The first night we met Micki we asked if there was any way Alida could be moved to a quieter area. The next morning the girls were in a nice quiet back corner. Ever since then, we always knew Micki would go to bat for us and the girls.

I spent a couple evenings in the NICU with just Micki and Alida after Lucie came home. This is when I realized that Micki was going to be more than a nurse in the NICU, she was going to be my friend. A true, genuine friend. Micki listens. She understands. She cares. Despite my gratitude for everything we have gone through and my optimism 90% of the time, I still have times when I am frustrated, emotional, angry, and scared. I know I can go to Micki during those times and vent. She lets me be me and doesn’t judge me for those feelings. She answers all of my questions, even the silliest ones, and reassures me that I am capable of taking on the tremendous job of being a parent, a heart mom, nonetheless. She wouldn’t care if I called her at work or in the middle of the night. That’s just who she is. Her children are very fortunate to have her as a mother. I aspire to be as giving and selfless as Micki.

Not only were Jeannie and Micki there for us during our NICU journey, but they continue to be part of our lives and there for the girls. Jeannie drove down Tuesday night before Alida’s first heart surgery on Wednesday. She stayed until Thanksgiving. We had to practically force her to come out for Thanksgiving dinner with us as she wanted to respect our privacy and space. She was amazing on surgery day. She kept it together for us when we weren’t coping well with discouraging news; she helped us understand what the doctors said and answered questions from our inquiring parents for us. Then at the end of the day, she thanked us for letting her be there. After everything she did for us, she was thanking us?! We insisted it should be the other way around. We wouldn’t have made it through that day without her.

Micki and Jeannie came down to Milwaukee together on the day of the pacemaker surgery (12/4/13). They got there at 11am and watched Lucie most of the day so we could have a little break and focus on Alida. Alida’s surgery ended up being at 5pm, right when Lucie was hitting her prime time of the day. They took turns walking with her and ordered us pizza. We were exhausted from being at the hospital since 8am that morning. They stayed with us until Alida’s surgery was done and she was back in her room which was about 9pm. Then they drove home. It is those types of selfless, caring acts that make them both so deserving of the daisy award. They exemplify all of the qualities and attributes the award signifies. We are so fortunate to have these two amazing nurses in our lives. These are not just nurses, they are heroes to us and dozen of babies and families everyday.

Lucie takes on the pool

9 Month & 10 Month Photos

The pictures were taken at the correct time, I just didn’t finish the editing until now. There are a few extra including the demonstration of Lucie not enjoying turkey and vegetable baby food (not for those with a weak stomach) and some pictures from Lucie’s swim lessons and Memorial Day.

Surgery Re-Scheduled

Heidi and I always like to know what the plan is. Quite some time ago, we knew Alida’s next heart surgery, the Glenn procedure, was to be performed on June 3 back at Children’s Hospital in Milwaukee. We started to make our plans. Then Alida got sick. Basically it was a cold that all four of us got. Although mild for us, it really wiped out Alida, actually sending her to the hospital for four days in Marshfield. She lost weight and had a nasty cough which made her miserable for about three weeks.

Ali really didn’t get back to herself until she finally smiled again around May 12. Since then she has been doing quite well. She has modestly yet steadily gained some weight. She has made some nice developmental advancements both in speech and movement.

A post hospital stay visit to our cardiologist Dr Okorie led to a discussion about her upcoming surgery. The Glenn, which creates a greatly increased capacity for blood flow to the lungs, requires healthy relaxed lungs for the patient to successfully accept the surgery. Alida’s illness left her with compromised lung health. The only safe thing to do was delay the surgery so she could have time to fully regain her lung strength.

This messed with our summer plans. In our minds we would have the surgery on June 3 and then spend the rest of the summer, hopefully oxygen free, recovering and getting stronger and stronger. Now, our new surgery date is July 23 with a cath lab scheduled for July 21, all in Milwaukee.

There is a silver lining to this new plan. Ali has been doing great. It has been so fun to watch her as she has improved her pace of development and growth. Now, instead of interrupting that so soon, we can hopefully enjoy a nice couple months of weight gain and advancement. There is only one downside of waiting for the Glenn. We are relying on the functioning of her current artificial shunt. Although the shunt looks good now, it’s effectiveness will diminish as she grows. We need to keep a close eye on her oxygen saturations until surgery time. As the shunt stretches out, the volume of pulmonary blood flow will decrease (imagine the diameter of a straw getting smaller). We have seen no indication of this yet but it will be something we continue to watch, especially if she experiences good growth.

So, we look forward to a nice couple of months at home with our two little girls. We will make our appropriate plans for our next Milwaukee trip as we near the date. We already know the next surgery will be the hardest for us. Everyday we get to know Ali a little bit better and she speaks so intently to us with her looks and expressions. We are keenly aware of what a special little girl she is and we dream of all the amazing things she will do in her life. Letting her enter that operating room again for serious heart surgery will take all of our strength.

A Special Mother’s Day

Happy Mother’s Day. Happy Mother’s Day to all the moms out there who work that selfless job every day, all day, without pay, without enough appreciation, and without enough thanks. Today is the day we recognize all those moms and simply say, “thanks, what would we do without you?”

This Mother’s Day obviously takes on a whole new meaning. I’ve had the privilege of watching an all-star mother sprout right before my eyes. Heidi is my hero. She’s my hero every single day. I’m the luckiest person to get to be married to such an inspirational woman.

When we look back on the last ten months or so, we feel like we’ve been fighting and clawing the whole way. We’ve been fighting for the well being of our two precious little girls. Heidi has made the ultimate sacrifices. She had to leave her job which wasn’t just a job but a burgeoning career. She had to completely give of herself to give to the babies. Like so many moms out there, she did whatever it took all the time. I’ve been proud every single day to stand by her side as her partner. If we didn’t have each other, we doubt our probability to be standing here today as completely happy and fulfilled and in love as we are. We have experienced so much joy throughout our journey and we are happy to fight for our kids.

Since Heidi was admitted to the hospital back on July 5 before giving birth, we have spent 174 nights with at least one of our family in a hospital. The stress and burden of this could be enough to tear into even the strongest of families. Because of Heidi’s strength, intelligence, perseverance, and determination we are stronger. We have a strength as a family that cannot and will not be compromised. This is all because of Heidi, my hero, and the mother of our little Ali and Lucie.

We just spent Tuesday through Saturday in the hospital in Marshfield with Alida fighting a bad cold. Our only wish during the week was to spend Heidi’s first Mother’s Day at home as a family. Heidi just wanted a family picture at our house on Mother’s Day. We had already spent Heidi’s birthday, Labor Day, Halloween, my birthday, Thanksgiving, Christmas, and New Year’s with at least one of us in the hospital. On Saturday morning, we told the doctors that we wanted to be discharged. This was one holiday we wanted to spend at home. We have a certain amount of experience with these types of conversations. Our mission was successful and we were discharged before noon while the beginning-of-the-day plan was to keep us until Sunday, Mother’s Day.

When we got home yesterday afternoon, Alida smiled at us for the first time in over a week. That smile was all the Mother’s Day gift Heidi needed. So it’s the morning of a very special Mother’s Day for our family and instead of writing this blog entry, I think I’ll go enjoy the day with my family. Every day should be Mother’s Day.