Coming Back

A new, dear friend asked the other day if I'd considered continuing to write here. It got me thinking, and though this blog was initially a space to share our journey with others, I feel it transitioning now to a different type of place. I'm aware that others may still be checking in and reading, but know that I'm writing for me, and for other babylost mamas who may stumble across this site, and feel free to end your journey with us here, if that feels right for you.

Tonight we're taking a trip back to the NICU. We'll go around midnight, so I'm hopeful we'll miss the exodus of parents leaving with babies in carseats that was so painful during Cayden's two weeks in the hospital. Walking in to see our sick baby, while blissed-out new parents left for home with their healthy babes, knowing that we would not be those parents, would not have that experience. Our first baby would never come home with us.

Walking into the NICU, hospital ID bracelets still circle our wrists, yet we don't really belong there anymore. Except we do, because that space was all that Cayden knew, where he lived his life, and because of that, it is one of the most important places in the world. I can't wait to see his nurse Erin, who will be working, because she knew our baby, she cared for him, she touched his little body. That's not true for very many people, and so she is very important to us. I'll spend the day baking for the amazing nurses who care for so many babies and so many families. And I'll try to keep my tears out of the batter, because no one likes salty cupcakes.

In Memory of Cayden

We are eternally grateful for the incredible care Cayden received from the amazing staff of California Pacific Medical Center's Neonatal Intensive Care Unit. We too, along with Cayden, received such love and support that we would like to designate the NICU as the recipient of any donations made in memory of Cayden. Should you wish to donate, directions follow. Thank you.


Go to http://www.cpmc.org/giving/

Click on “Donate Now”

Complete donor information

Click “continue”

Below the box where the donation amount is entered, select “other” from pull down “Designation” menu and in the “Comments” section below the payment information enter “NICU”

Enter Payment Information

Complete the “In Memory” designation

Complete the Notification section:

Paige Abramson Hirsch and Scott Hirsch
920 Harrison Street, #1
San Francisco, CA 94107

Click on “Verification” and complete process

Thank You

We are leaving San Francisco tomorrow for a week and a half-to regroup and begin our healing process. Before we leave, though, we wanted to express our deepest gratitude and utmost thanks to all of you who opened your hearts and lives to Cayden and walked with us on this journey. While we know it was painful for all, having your support and love made it a bit more bearable than it otherwise would've been. We've had difficulty keeping up with emails, but hope to be in touch once we return. Thank you very, very much!

All our love,
P&S

Goodnight Sweet Baby

Cayden left us yesterday as beautifully as he arrived. We were able to spend our final hour with him in a private room, away from all of the machines and monitors. As we held him, wrapped in a baby blanket knitted by Nana, we told him how much we loved him, cried over him, sang to him, and loved him with all of our aching hearts. Our favorite doc, Dr. Slagle, and our favorite nurses Erin and Thanh(two out of three, Molly was out of town) were there with us, along with his grandparents. Cayden's nurse Thanh actually had the day off but came in to be with us. That's how amazing the CPMC hospital staff is, we love them all so much.

Watching your child die is something no one should ever experience, but we are so grateful that we had two weeks to know and to love Cayden, something most parents with babies with MPS never experience, as they are usually born still. Our belief is that Cayden really wanted to be part of this world, if only for a short time. We're so glad he did.

A Better Day

Thursday was a much better day. Cayden was very calm and I was able to hold him for 3 hours and my mom had her first chance to hold Cayd. I surprised myself by not even thinking about Friday and just focused on Cayden. My dad arrived Thursday night and came straight to the hospital to meet his grandson. Now it's Friday morning and the grandparents and I are at the hospital, marveling at this little baby who is so loved by so many.

A Diagnosis

Today we learned that Cayden is suffering from an extremely rare, lethal, autosomal recessive condition called Multiple Pterygium Syndrome. There have only been 200 documented cases ever. So when we tell Cayden he's our little one in a million man, he truly is. And his Daddy and I are also two in a million to each carry this recessive gene, meet each other, and make a baby with both copies of the recessive gene. We are relieved to have a clinical diagnosis, though a confirmatory blood test will be conducted by a lab in Germany. Unfortunately, Scott and I have a 25% chance of any future children having this condition. This means that we will need extensive perinatal genetic testing with future pregnancies.

Cayden had a rocky day, all of his stats were pretty unstable. I was able to hold him for a few hours, but wanted to put him back to see if he would settle. Unfortunately, he didn't really stabilize. Dr. Slagle thinks this could be Cayden saying he's had enough, and that we should keep our phones on tonight, not that we've been turning them off. Dr. Slagle ordered a pain med drip today, to make sure that Cayden is not feeling any pain. Fortunately, Cayd has been receiving amazing care from an unbelievable team of nurses and doctors and we know he's in great hands. If he's starting to struggle too much, or we have signs of discomfort, we will remove his ventilator sooner than Friday.

All Day and All Night

Tuesday's holding somewhat made up for Monday's lack thereof. Mommy held Cayden for about four and a half hours during the day and he didn't ring an alarm once! I even got to feed him, albeit from a tube, but it was my breastmilk going into his little tummy, and that's what counts. Chunky monkey gained 20 grams overnight! His day nurse Thanh is amazing and so supportive. The new NICU is wonderful, fewer babies and much more calm and spacious. And there are windows with trees right outside, which is soothing.

Later in the evening, Daddy and I returned and Daddy had his first chance to hold Cayden, and just Cayden, as they swaddled him and didn't move his whole cocoon of padding. He did an amazing job and Cayden stayed very calm the entire time. It was so special for the three of us to be so close, physically, and together. And we had one of our favorite nurses, Erin, there to capture it on film.

We learned last night that we will most likely receive a diagnosis today at 5 when we meet with the entire medical team. We'll share more after this meeting. A tissue biopsy will be taken on Thursday and we've actually decided to disconnect Cayd's ventilator on Friday afternoon or evening. We want our favorite doctor, Dr. Slagle, to be there, since she was with us in the operating room and has been with us the entire time. She is an amazing person and we feel so lucky that Cayden has received her unbelievable care.

We're doing our best not to count down the days, and to celebrate each one, but we so enjoy our time with our baby boy that it's impossible not to absolutely dread the end of the week.

All You Need Is Love

Cayden was wide-eyed today! Well, that's an overstatement, but he certainly opened his eyes more than he has been. This is likely a result of the caffeine they've been giving him, I guess it sometimes stimulates babies to breathe, but it doesn't seem to do anything for Cayd, except maybe cause him to open his eyes more, which is nice.

It was very chaotic in the NICU today, so I didn't hold him, as I didn't want to expose him to the noise and commotion. When Daddy and I went back tonight, they were preparing to move him to a quieter NICU, and the nurse (our first we did NOT like) felt that moving him and holding him would be too much. I think she just isn't a fan of parents holding babies on ventilators, but if she's still his nurse tomorrow night, we'll fight to hold him despite her. Here's a picture of Mommy's two best guys!

Holding Tight

Words cannot express how grateful I am to have had the opportunity to hold my son tonight. For a baby who doesn't always appreciate being touched, moved, etc..., Cayd did amazingly well and was calm throughout. And he maintained his temperature, which allowed us to spend even more time together. Cayden's calm definitely transferred to me, as I talked to him and he grasped my fingers, for nearly an hour. It was a magical night for mama and baby and I cannot wait to hold him in my arms again tomorrow.

Day 9 and Cayden's Week of Love

We went to see Cayden this morning. He stayed very calm while we cupped his head and feet and stretched out his tiny arms. He also opened his eyes the most he has since birth, and we got to see his deep blue, beautiful eyes and hope that he was able to see us.

Nothing has changed, except he's up to 2 ml of breastmilk and has gained 10 grams. We are awaiting the chromosome results, and depending on what we hear, we may decide to do a biopsy to get additional answers.

We made the impossible decision today that we will remove Cayden's ventilator and say goodbye next Saturday. This week will be Cayden's Week of Love. We will shower him with touch, talk, read him books, change his diapers and absolutely cherish our time with our little baby boy. Tonight they are planning to let me hold him, despite all of the lines and tubes. I can't wait!