Saturday, January 17, 2009

A Birthday Party... and an Anniversary

We just got home a couple hours ago from Brynn and Collin's birthday party. It was so much fun! We had a small (as small as it gets with so much of our family living nearby) family party at the park. The kids were in heaven playing on the slides with their cousins, having cake and balloons (the only things they insisted on for their party), getting a little extra attention, and being surrounded by so many people they love. I didn't get many good pictures this year (a combination of my camera giving me problems and also being occupied with my hostessing duties), but thank goodness my mom is even more of a picture-taker than I am. Here are a few highlights (I'll have to upload more of the pictures tomorrow):

Getting ready to blow out the candles. Two for Collin, four for Brynn:

The four of us:
Collin getting some extra attention from his cousin MaJesta and sister Brynn:

Riding their new scooters:


Today is also a day for our little family to remember, because this is the 2 year anniversary of Collin's heart surgery. Only 2 days after he was diagnosed with heart defects and rushed to the hospital (at only 9 days old), he had open-heart surgery to repair the defects. When I think back to what January was like for us 2 years ago, it is surreal. Everything happened so fast that I wasn't able to really process it until so much later. During my pregnancy with Collin, there were several times that I just didn't feel like everything was right. He didn't move nearly as much as Brynn, and so I had several extra ultrasounds to check on him. Now that I know their different personalities, I think part of it just had to do with how comfortable Collin can be just being still and relaxing (in contrast to Brynn's constant need for movement). However, part of me also wonders if it was Heavenly Father's way to make me extra aware of Collin and his health, so I would be as aware and concerned as I needed to be to help get him a diagnosis. Probably most everyone who reads this already is already aware of what we went through 2 years ago, but because the primary reason for my blog is to be a family journal of sorts, I am going to share my memories of that for my kids. I will warn you now that it will probably be really long.

When Collin was born, he looked to be a perfectly happy and healthy baby. He was a chubby little guy, and I immediately fell in love. He was born at 8pm, and by the next morning, he seemed to be uninterested in feeding. I was a little concerned during those few days we were in the hospital after his birth, but I was assured by the nurses that he was fine and that he was just tired from the birth or just needed to learn to how to nurse or "just needed a pretty blond to get him to take that bottle" or whatever. I have pictures of Brynn meeting her brother for the first time, and my face is all red and puffy from my concern with his eating. The only nurse that showed any concern was brushed off by the other nurses. So, we went home a few days after he was born and tried to be a normal family with a newborn. Except Collin continued to be completely uninterested in eating. He was only 9 days old when he was diagnosed, but those were probably the longest 9 days of my life. He took a bottle better than he nursed, so I would pump and give him a bottle. It would take 45 minutes to an hour to get him to have a very minimal amount of milk. Because the feedings were so long, I would have an hour between them to pump and change his diaper and anything else that needed to be done. It was exhausting and I could feel myself becoming really depressed with the whole situation. More than being depressed, however, I was completely terrified.

During this time, we became regulars at the pediatrician's office. "Dr. Mike" really built our trust during this time, because he was one of the only ones who seemed to take my concerns seriously. Most everyone thought Collin was just fine and was probably just a lazy eater or "the third day after birth, babies are often too tired to eat" or whatever other reason to justify his lack of eating. Even Dr. Mike initially thought it was just something he would get over. (And I hope I am not sounding bitter about being told he was OK by so many people, because the experience taught me that as a mom, I am entitled to inspiration on my kids' behalf that others may not have. Heavenly Father provided so many teaching opportunities, as well as many miracles, through all of this for which I am so grateful.) As the days of the disinterest in eating continued, we were at Dr. Mike's office for yet another weight check, and he suggested we get Collin in for an ultrasound of his brain. I was so relieved when the scan didn't show any problems. However, I was also still so worried because we were still no where closer to an answer. I wondered how much longer he could survive on such little nourishment. I wondered how much longer I could survive on such little sleep. In just over a week, I had lost most of the weight I had gained from the pregnancy due to my constant worry.

Then, when he was only a week old, he seemed to get even worse. He was feeding even less and my little tricks to get him to drink (continually pulling the bottle out of his mouth so he would start sucking on it again, etc) were not working any more. It was the weekend, and we were scheduled to see his doctor that Tuesday. Monday morning, I wondered if I should get him in a day earlier. I didn't know what they could do, since we had already been in so many times, but I was concerned that he was getting worse. I called my mom and she said there wouldn't be any harm in going in a day early. So we headed off to Dr. Mike's again. Dr. Mike still didn't know what was wrong. He had been speaking to various collegues, trying to see if they had any patients with similar problems. He had already suggested trying different bottles. He had already had Collin get the brain ultrasound. He was talking about getting Collin in with a speech therapist to see if Collin might need to learn how to eat better, when he took another listen to his heart. He had done so at previous visits, but this time he heard something different. He described it as a "gallop". He suggested we take Collin to a pediatric cardiologist, so they could tell us what was causing the gallop. Dr. Mike stayed pretty calm while he was talking to us, but as we were leaving the office, he was already on the phone with the cardiologist's office and I heard him say "Stop. Do not pass go." or something similar. I think I had my 1st idea then that this could be serious. (I was later told that Collin was so sick and critical by then that he most likely would not have made it to the appointment the next day. Another inspiration/miracle that I am so thankful for.)

As I was pulling into our driveway from Dr. Mike's, I got a call on my cell phone. It was Dr. Mike himself telling me that there was a cardiologist waiting to see Collin, and we should drive straight there. Suddenly, I felt even more sick to my stomach. I figured this appointment may not go well, so I had my mom meet me there. Dave called his dad to come watch Brynn, and would meet me up there once his dad arrived. Almost as soon as we got there, they were ready to see Collin. They hooked him up to a ton of wires and did an EKG. The cardiologist came in before the EKG was even finished, and told my mom and I that Collin had a serious heart defect that would need surgery. My world suddenly turned completely upside down. I knew something was wrong, but I couldn't ever imagine that he had heart defects or that they could be so serious. He asked us a few questions and then took us to another room to have an echocardiogram done on Collin's heart. It seemed to take forever. That's when Dave arrived and found out the news. I was crying and felt so panicky, but I had to hold absolutely still since I was next to Collin and they were still doing the echo to check the extent and details of the defects. They told us he had a coarctation of the aorta and a VSD (and we would later learn that he also had an ASD). They said he was already critical, and they had called for an ambulance to take him to the hospital.

When the ambulance arrived, they strapped his little carseat onto the gurney and I rode with him to the hospital, while Dave and my mom drove over to meet us there. I remember the EMT was trying to make conversation, and I just kept staring at the back of the carseat (Collin was facing the back of the ambulance so I couldn't even see him), praying that we would make it to the hospital in time. It was horrible! When we got there, they immediately took him to the PICU, where they got him set up and tried to get a few lines in him. By then, my parents and Dave had both arrived. The doctors and nurses were struggling to get to any veins, because he was dehydrating. They suggested that Dave and I go get something to eat and then come back. My parents later told me that it got pretty scary then. They had to get a line into his veins, so they could get a drug in him that they hoped would open a duct that would temporarily allow the bloodflow that he needed until the aorta could be repaired. His aorta was so pinched off that it wasn't allowing for much bloodflow at all. We almost lost him as they struggled to get a good vein. My dad stayed in the room with him during all of that. I am so grateful that I didn't know how bad it got in there until later, and that my dad was strong enough to be there so Collin wasn't alone. My mom was in the hallway right by his room and saw the struggle they were having. She said a little prayer, and then a nurse announced that she was finally able to get a line in. Dave and I got back to the room, and Collin had a bunch of wires and tubes all over him. Thankfully, the medicine worked in opening up the duct of his heart that would temporarily do the job of the aorta. They said that they would let him rest for a couple of days to stabilize and get ready for the surgery. I spent the next 2 days by his bed. I prayed like I've never prayed before. I cried harder than I've ever cried before. I learned new medical terms I never knew existed.

Two years ago today, I got to hold him (for the first time since he arrived at the hospital) before they wheeled him back for open heart surgery. It was the longest wait, as Dave, my parents, and Dave's mom tried to eat our dinner in the family lounge and wait for some news. Our ward and our families were doing a special fast for Collin. There were so many people praying for him. I could already see so many miracles and the guidance that had led us to his diagnosis. I was so nervous, and yet I was calmer than I would have expected. I felt like it just had to be OK. After what seemed like an eternity, a nurse and then the surgeon both came to tell us the surgery had gone well and he was doing well. As the days continued, Collin continued to get better. He had one more surgery two days after the first one, to close up his chest (it is not uncommon after a heart surgery like that to leave the chest open for a few days because of the swelling that takes place). We left the hospital 6 days after the big surgery. He only had to be on 2 medications at that point, and didn't need a feeding tube or anything. We felt so undescribably fortunate and blessed. The first year of Collin's life continued to be a bit challenging, but 2 years ago today marked a major turning point. When I think back on that day, it is bittersweet. The memories of him hooked up to all the tubes and wires, the intense fear, it is all still a little raw. The experience had such a profound effect on our lives. But to me this anniversary is a happy one. It marks the day that we finally had an answer to what was wrong, and they were able to fix the problems so that he is with us today. I am so grateful for all that I learned through that experience, and the miracles I was able to witness and be a part of. I am so grateful (that can't even describe it) that Collin is with us today. He is an amazing little boy, and he has already had such a profound effect on our lives. I am so deeply grateful that this "anniversary" is a happy one, and that I get to look back on that time while holding him now. He has brought so much happiness into our home.

These are a few pictures from January two years ago: (Although I will warn you that they are somewhat graphic and may be difficult to look at. I myself sometimes have a hard time seeing them, but they are a good reminder to me of how far he's come and blessed we truly are.)


Resting the day before his surgery:

2 days after his heart surgery (and just after having surgery to close his chest back up). Can you believe all those tubes and wires?!

Feeding him his first bottle, several days after his surgery:
We took this picture just before we left the hospital to take Collin home. Can you tell I was exhausted, excited, and scared beyond belief?
Fast forward two years to this afternoon...We are thankful we for the miracles that took place 2 years ago that allowed for this picture of our healthy, fearless little man!

9 comments:

Anonymous said...

Those memories brought tears to my eyes! I'm glad you wrote it all down, & put pictures with it. & I'm glad you finished it off with a picture of your "little man" running around like a normal little boy. I appreciate so much that we can celebrate that anniversary in such a positive way! I sure do love your kids!!!!
Mom

Anonymous said...

Melanie:

I can remember those days as if they were literally yesterday, and the tears still come to me every time I think about it, and from watching his screams and cries from the pain and suffering he endured for several hours as a team of eleven doctors and nurses desparately probed almost every part of his body with needles to get an IV in him and save his life. I can also testify that I strongly felt the presence of angels in that room as they administered to his care.

Collin is a very special little boy, and he has a special mission to accomplish in this life. I am deeply blessed to know him and to have a close relationship with him as my grandson. I love him! I love him, and Brynn, from a special place within side of me.

It is a joy beyond measure to be able to celebrate, with happiness and gratitude, the anniversary of such a critical time in his life.

I love you all!!

Dad

Caryn said...

Melanie! You have me bawling! Agh! I remember getting the call to go and see if I could awnser any of your questions while you waited at PCH. Oh and I remember feeling so much compassion for you because I knew EXACTLY how you felt. I am so so so happy Collin is doing so well. We really have two miracles on our hands! I am so glad you took photos of everything. That was the best advice I got before surgery. Collin will have so many questions when he is older and the photos will be a big help.

And no one tells you but having a heart baby is THE BEST way to lose the baby weight- mine was gone in 8 days of NICU. Love it-ish!

Kelly said...

I was and still am amazed at how keen your mother's intuition was through all of this. You told me and everyone else that you knew something wasn't right and you insisted on that until someone finally did something about it. I know this is also called being tuned into the spirit. You are one of the best at that.

I love watching Collin today and how healthy and happy he is because it reminds me that the Lord can do anything that He wants to and knows will be right for us and our families. Thank goodness we are NOT in charge!

Love
Kelly

Kate said...

Melanie- Thanks for sharing your touching story. You are such an amazing mother and such a wonderful example to me and everyone else. It's easy to see that Collin is special spirit. It seems like all that happened a few months ago and not 2 years ago!

Anonymous said...

Wow Melanie, how far little Collin has come! I too cried while reading that and am so happy he's such a healthy little boy!

Shawni said...

Oh my word Melanie, I had no idea about all these details. I'm SO thankful that he is doing so great now and that you were prompted to take him to the hospital early. I can only imagine your mother worry as you waited and sat in the ambulance, etc. It makes me tear up even thinking about it.

So do they share the exact same birthday? They are so sweet.

Angie said...

OK. From reading the comments above, it's obvious that I wasn't the only one who cried through all those paragraphs. I remember getting your dad's email updates--which was so nice of him. What a crazy, emotional roller coaster those weeks were. I'm so glad you have this documented for Collin to be able to read when he's older. Very neat to see the tangible blessings of a loving Father.

Anonymous said...

Melanie--

I hope this isn't too weird, but I was clicking through heart blogs and came across yours. Your son Collin has the exact same CHD as my son Cole. Our stories are so similar, with the exception that Cole went 7 weeks before being diagnosed (they just thought the eating problems were a new mom who didn't know what she was doing.) I too was inspired to go to the Dr's office early--which is why he is still here today.

Cole will celebrate his 11th birthday in May. He has never had to have follow-up surgery and has so much energy. (We joke that they fixed him too good!) He loves sports and has a dream to play pro-football. (Yes, football freaks me out....gently trying to guide him toward baseball!)

I know every child is different, but we feel so blessed to have Cole healthy and pray that your Collin will be the same.

Best wishes,
Melissa Karren