Thursday, November 28, 2013


I could go on and on about what I am thankful for this year...

my handsome boys (Oliver included of course) who make my world go round
my amazing parents who have stuck beside me through thick and thin
my supportive siblings who helped keep us positive in the waiting room during Alec's operation
my extended family who made us meals and paid for our stay in Philly while Alec was hospitalized 
my incredible work family who organized a heart walk team in honor of Baby Drake
my dear friends who kept me smiling when I was overwhelmed

You are all so wonderful. Thank You. And Happy Thanksgiving!

Tuesday, November 26, 2013

Recovery

Since our day of discharge, our little family has been on quite the roller coaster ride. Coming home has felt just like coming home for the first time all over again. Initially, sleep was non-existant and our stress levels were off the charts. In the hospital, Alec had gotten used to waking up every hour. It seemed like every time we got him all swaddled and snuggled into bed, the nurse or doctor came in to assess him or check a blood pressure and we'd have to start all over again. Any sort of sleep routine we had established prior to our hospital stay was completely shot. Since we've been home, each week has improved just a bit and we are finally starting to feel like we have a pretty good handle on his sleep routine again... and thank goodness because for a while there I thought I was losing my mind.

 Another big hurdle we faced was pain... every sneeze, cough, laugh, hiccup hurt him so badly and there was nothing Kiel or I could do to take the pain away. After about a week and a half post-op, we were encouraged to stop giving the pain medication and just stick with tylenol. Those first couple of days were incredibly tough. The tylenol just didn't seem like enough and it was hard to know there was a possible fix sitting right in our medicine cabinet. But we stuck to the doctor's orders and toughed it out. Now things are better, but the pain is definitely still there. We have started to figure out which positions are most comfortable and we have gotten used to the 'scoop'. (We can't lift him under his arms). There were times we felt absolutely powerless. We couldn't even snuggle our newborn comfortably. This was especially hard for me. Prior to surgery, Alec would nap peacefully on my chest for hours. Post-surgery, I literally missed him even when he was right in my arms. I couldn't hold him like I knew I did before. Every move had to be cautiously made and thought out. But thankfully, we have all adapted to this change and our snuggle time at 11 Steeplechase is back to where it was before.

Alec has never cried more than he has in these past few weeks. There were times when nothing we did could soothe our child and we felt so helpless. Thankfully, over the weekend, I really think we turned a corner. It really seems as if he is finally starting to feel better. He is crying less and less, and he is sleeping more soundly throughout the night. I am feeling so relieved. There were moments I felt so anxious I could have screamed. Every day is getting just a tiny bit better and I am starting to re-gain my confidence as a Mama. Turns out... we actually do know what we're doing, the recovery process just takes time.

We have received so much support throughout this time. My parents, especially, have really stepped in to lend a hand when Kiel and I were in dire need of a break. I am so thankful for all the amazing support. Thanks to everyone again for all the kind messages and prayers. Things could be a whole lot worse, and this Thanksgiving we truly have something so amazing to be thankful for.




Saturday, November 16, 2013

Weekend Links


The perfect homemade gift for the ladies in your life.

An edgy hair style I've been trying to mimic all week.

100 Great Christmas gifts for Men in 2013.

It's about time I got organized.

The most adorable gift basket for a new mama.

The cutest little blog and the most practical mom uniform.

The best christmas cards are 25% off this weekend.

An awesome area rug I've had my eye on for a while.

A tribal coat I wouldn't mind sporting this winter.



Wednesday, November 13, 2013

Inspiring Words

During our two weeks in the hospital, I received so many words of encouragement. There were so many texts, facebook messages, e-mails and I was truly grateful for all of it... I needed it for sure. One particular letter I received really spoke to me. A friend of mine's sister-in-law reached out and her words really put things into perspective. I asked her permission to share her inspiring words on my blog and she agreed. I wanted to post this letter because I really feel like any mom can relate to what she's saying at some point in their lives. Corinne, you're a wise woman and I couldn't be more appreciative of you reaching out to me. It meant so very much. 

"Hey, Laurie, It's Corinne.  I just wanted to reach out to you.  I go to your blog from time to time because I think you are just the cutest;)  Alec has got to be the cutest little baby boy.  I may not be able to relate to your exact scenario but with Charlotte having multiple life threatening allergies, I can feel your vulnerability.  Along with the gift of loving your baby more than you could ever imagine, comes this sense of vulnerability that you have never experienced before.  At three months old when I was told Cha was allergic to milk, eggs, peanuts, all tree nuts, legumes, fish, soy, sesame, sunflower seeds, and pitted fruit, I felt like I was handed a china bowl in a moshpit.  How on earth do I even begin in protecting this newborn from a world that is surrounded by lethal substances?  And I nursed her for almost two years, therefore I had to not eat them as well.  I felt vulnerable and alone.  Questioned Why alot. I felt I was in a mad rush to find spirituality because that is the only thing that I could do.  Pray. Pray. Pray.  Pray that this perfect little baby girl would be safe.  Pray for it all to go away (which is hasn't;().  Pray for the strength.  

I just wanted to write to let you know that I have come to learn that through all of the questions of "why me", I have realized that everyone on this planet reaches a point in their life where they say "why me".  It may be so hard to see other mom's with their first borns only worried about tiny little nonsense but at some point life is gonna just throw them a "why me" event.  Everytime Cha has an allergic reaction and I have an epipen in my hand or I resent other moms for being able to take a single meal off from cooking from scratch, I have to remind myself that they have their "something" that tests their vulnerability.

The answer to the "why me" actually is pretty clear.  I have always been on the path of nutrition.  Being vegetarian for 8 years, and a label reader is why I was chosen to be her mom.  Just like you being a trauma nurse and having all of your nursing background, is exactly why you were chosen to be Alec's mom.  We were CHOSEN.  My sister always jokes with me saying god knew to pick me over her because she wouldn't have known where to even begin.  

Having these precious little beings is our journey.  Their souls were meant for us.  You are a beautiful, loving, sweet mama.  You were chosen to Alec's mama because  the universe knew EXACTLY what it was doing;)  Stay strong, yet know it is okay to be weak.  

I know you have an amazing family and group of friends.  I just felt the need to connect with you;)

I am sending you lots of love."

There have been so many times since last April that I have questioned "Why me?"... and although deep down I knew that I was picked for a reason, reading Corinne's words made it even more apparent to me. I've never been an uber religious person, but I have prayed more in these last 9 months than I ever have before. I have confidence in the fact that God has a plan for each and every one of us, and being Alec's mama was my plan. I was chosen. 
These past two weeks, have been an emotional roller coaster. I had to dig down pretty deep to search for more strength when I felt like I had nothing left to give. Along with my strong moments, I also had many moments of weakness. There were many times when I had to leave Kiel at Alec's bedside... I just couldn't stand to watch him scream in pain every time they needed to draw blood or do an assessment. I literally felt his pain... and I learned that my threshold was only so high. Thankfully, Kiel was amazing through it all and he had enough strength at times for the both of us. 
Although this whole experience has taught me so very much about life, I am incredibly grateful for it to be over. It is wonderful to be home and we are looking forward to a speedy recovery and a happy holiday season with our little guy. 

Alec at two months, just prior to his first open heart surgery.

 

Sunday, November 10, 2013

Home Sweet Home

Saturday afternoon, the cardiac team officially cleared us for discharge! There are so many comforts from home that we have all missed during our two week stint at CHOP... nothing like cooking your own meals, snuggling in your own bed, and rocking your newborn in your own comfy rocker. Although we missed home terribly, we didn't want to rush Alec out of the hospital until he was ready and we were comfortable providing his care on our own. This overwhelming experience has really taught me to appreciate life... to be thankful for how wonderful our lives really are. We are truly blessed to have a beautiful child... to have the most loving families... and to be surrounded by the most amazing support system ever. 

From start to finish, our time spent at CHOP these past two weeks has been full of extremely stressful moments. But it has also been filled with some of the best moments... incredible moments of strength  and well, relief. Relief to know that Alec could handle it all, and that Kiel and I could handle it all (even though there were moments that I didn't think I was gonna make it). Being home has been bittersweet. It is wonderful to finally be be surrounded by the comforts of home and to be so close to our families and friends. But it is scary to be in charge of our little one's care when he is only five days post-open heart surgery. We are relieved to have finally developed a good level of pain management. As a mother, nothing makes you feel more powerless than the inability to soothe your baby. Thank goodness for pain medication. It feels so good to see him comfortable. I am really looking forward to the holiday season when he will be fully recovered and this stressful time will be behind us.

The morning of his surgery. Very peaceful.
 One day post-op. Having in our arms again was truly the best feeling in the world.
 Our nurse, Kate, made him the most adorable sign. The CHOP staff was seriously amazing.
 Pure exhaustion and a little high on pain meds.
 The morning of discharge. Pure joy!
The fam threw Alec a little welcome home bash. So adorable. 




Thursday, November 7, 2013

Moving Right Along....

Yesterday evening, Alec was transferred to the cardiac step-down unit. He is off of supplemental oxygen and his oxygen levels seem to be hanging right where the doc wants them. Hallelujah! Last night and this morning, we had a little bit of an issue getting his pain under control. It was extremely overwhelming to see my little one so uncomfortable. It was quite challenging to decipher between a hungry cry.. a pain cry... a tired cry. Not to mention, we have to be extra cautious when we hold him over the next six weeks, careful not to tug on his arms and not to put any pressure on his chest around his incision. This afternoon, Alec has finally started to seem more like himself again. He is definitely a little more sleepy than usual because of the pain meds, but he at least seems comfortable, which is really most important to me. We are all very anxious to get him home. It will be so amazing to be in the comforts our own house with friends and family so close by. Right now, it is a waiting game. If all continues to go well, we may even be home by the end of weekend. For now, we will continue to take it one day at a time. 

xo

Tuesday, November 5, 2013

The Big Day

Kiel and I have been mentally preparing ourselves for this day for some while. We knew halfway through my pregnancy that our little boy would need a series of surgeries. Accepting that our beautiful little baby needed open heart surgery was a tough pill to swallow. Fortunately, we have had an amazing two months at home with our bug. There were moments where we truly forgot that he had a heart condition at all. This passed week, the physicians confirmed that it was now time to proceed with surgical intervention. 

This morning, around 8:45 am, we walked Alec down to the OR. With tears in our eyes we kissed his little forehead, and we assured him he would be okay... which we knew he would. It was one of the toughest moments of my life for sure, but I had faith that everything would be okay. (After all, he has the best cardiac team in the world). We waited patiently with family for our updates, and before long (not too long at all), the nurse came out to tell us that they were finishing up. By 11 am, the surgeon had come down to meet us. He explained that all went smoothly, and that Alec was in recovery and doing well. We could finally breath a sigh of relief. 

Surprisingly, Alec looked incredible post-op. He has a small incision down the center of his chest and one small drain. His color is perfect, and his beautiful lips are a vibrant shade of pink that I've never seen before. His vital signs have been stable, and his lab work looks good. His oxygen levels have been higher than they've ever been, and he is only on a very small amount of supplemental oxygen. As I look down at my beautiful son, I am humbled by his strength. He has already been through more in these last two months of life, than I have in twenty eight years. This kid is absolutely amazing, and I couldn't be more proud.

I know that things have pretty much gone perfectly so far, but the road ahead may have it's challenges for sure. I am trying to stay cautiously optimistic about Alec's recovery and I realize that some days may be better than others. The biggest hurdle has already been cleared, and we are just looking forward to the day where the doctor tells us that we can take our son home. I cannot wait to be home. 

I cannot begin to thank our family and friends for all the facebook posts, e-mails, thoughts, and prayers. Our support system is truly amazing. I seriously believe that the reason Alec is doing so well is because of you all. 

xo

Sunday, November 3, 2013

The Latest


Hello again. I am going to try and keep this here blog nice and updated so that everyone knows what's going on. Not much time to text etc.
.
The cardiac catheterization on Friday went pretty smoothly and the results gave us some positive information. His numbers looked good and the tentative plan is to proceed with the second surgery, called the Bi-directional Glenn, on Tuesday with Dr. Spray. 

Unfortunately, after the procedure on Friday, the team removed his breathing tube and initially Alec had a little trouble breathing on his own. Recovering from anasthesia isn't easy, especially when you're only two months old. :( It took a little while for his oxygen levels to normalize so they sent him to the cardiac intensive care unit for closer observation. They put him on some low-flow oxygen and gave him some packed red blood cells to help with oxygenation. He was very sleepy for the rest of the evening, but by Saturday morning he was back to his old self again. He has been off of oxygen since yesterday afternoon, and breathing easily on room air without any difficulty. His vital signs have been just about perfect and he isn't requiring any help from cardiac medications. Alec has been feeding well, pounding 4 ounce bottles like a champ. Currently, he is focusing most of his energy on getting big and strong for Tuesday. Last night he weighed in at 12 pounds, 2 ounces... they say a perfect size for the Glenn. 

Our road ahead is going to be challenging, filled with good days and bad, but we are as prepared as we can be for it all. As scary as all of this has been (the scariest moments of our lives for sure), we are so grateful for the amazing team of doctors, nurses, and respiratory therapists who have helped our little man through it all.  We are also so incredibly grateful for all the kind words and prayers we have received from all of our friends and family. They are truly working, so keep them coming everyone!  We are beyond blessed to have the best support system in the world. 

I will update more after Tuesday to let everyone know how he does (Even though I already  know he's going to do so great). Thanks again to everyone for your concern.

xo Laurie

Friday, November 1, 2013

Update on Alec


I wanted to update everyone on what is going on with Alec. Pretty crazy that he hit the two month mark yesterday. And these last two months have easily been the best two months of my life for sure. I couldn't be more in love with this little guy if I tried. Unfortunately, We have been in the hospital since this passed Tuesday. Some things changed pretty abruptly this passed week.

On Tuesday afternoon, Alec and I were hanging at home. I was pumping in his room and he was napping in mine when he started stirring. His stirring turned into a little crying fit, and by the time I got a hold of him, his crying turned into a whale. It took me a minute or two to settle him down and when I layed him down to re-swaddle him I noticed his color was grayish/blue, especially his lips, hands, and feet. I gave him some time to recover and his color did return quickly once he settled down, but it nearly scared me to death. Being that he has a cardiac defect, I knew that this could happen and I was somewhat mentally prepared on how to handle it. I called the pediatrican's office right down the road and they encouraged us to come right in. At the office, they assessed him, and checked his oxygen level... which had dropped a few points since our last outpatient cardiac visit. The pediatrician called CHOP and the cardiac fellow encouraged us to come to their ER. We were admitted into a room by midnight. 

Over the course of the last few days, they have had him on a little bit of supplemental oxygen. His oxygen levels have improved, but not enough to send us home. We were hoping that Alec would be able to remain stable until after the holidays and then we could move forward with surgery, but it looks like that will not be the case. The doctor's have talked to us about two options... one being a shunt. We were hoping to avoid this first surgery and the doctor's agree. So instead, they are working him up for the second surgery, called the bi-directional glenn or the hemi-fontan. They often perform this surgery between 3-6 months.The cardiac team is pretty thrilled with how big Alec has grown over the last two months,  up to 11.7 lbs. They say that normally cardiac kids do not thrive this well, so the fact that he is the size of most babes when they are reaching the 3-4 month mark, reassures them that he could potentially handle the second surgery a little earlier. There are some serious risk factors, but they are performing a thorough work-up so that they can hopefully avoid any complications. Possible surgery early next week.

Today, Alec will be getting a cardiac catheterization. They will be putting him under general anasthesia, placing a breathing tube, and then threading a catheter through one of his major vessels in his groin and up to his heart so that they can take some pictures and measurements. This will help guide the team during surgery and is considered a necessary diagnostic pre-surgical procedure.

Obviously, Kiel and I are terrified.. but we know that we are in the best hands possible. His surgeon is top-ranked on the east coast and is the head of cardiothoracic surgery here at CHOP. I have faith that everything is going to work out okay in the end... but in the meantime I am doing my very best to be strong for my little man. Alec has been such a little trooper. He's been poked, prodded, and stuck with needles... but he's handled it all like a little warrior. 

I just wanted to keep everyone informed. Thanks again to everyone for all the support. Lots of love to you all and please say some prayers for our little boy.