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!

Day 8

On our way to the hospital. There was talk last night of removing one of the umbilical lines today, and maybe introducing some breastmilk in the next few days. This decision doesn't have anything to do with Cayden's prognosis, so it's not a good sign, but it's nice to know I'm pumping for a reason.

Update:
We were at the hospital from ten to three. They removed Cayd's umbilical line and started him on breastmilk, a whopping one ml every three hours. He seems to be digesting it okay so far. I got to take Cayden's temperature a few times and change a poopy diaper. It's nice that they're letting us help out with his care. He's still not breathing on his own and the respiratory therapist said that at one week old, he should be, and that every day he doesn't makes it more unlikely he ever will. While we appreciated his candor, if was tough to hear. Still waiting on the final MRI and chromosome results. Headed back to the hospital soon.

Day 7

They just took Cayden down to MRI. I saw him briefly before they took him. Daddy will be here soon. And we wait.

Update:
MRI is over. He was pretty chill according to Dr. Lewis. I'm pumping in the NICU pumping room while Daddy and Grammy are with Cayd. Then the meeting with the geneticist.

Update:
Waiting on the MRI results, probably won't have them until early next week. Cayden was breathing a teeny bit on his own, right before we met with Dr. Golabi. We haven't seen that for a bit, adn the nurse said she couldn't see it in his chest, but we got a little excited. Dr. Golabi, the geneticist, seems very, very good. She took a family history and we talked through what her gut feeling is. She thinks the contractures (his rigid, bent arms) are from early on in utero, and since his 18 week ultrasound pictures show his arm raised, it makes sense to think that he's been like that for awhile. She thinks there's a bigger picture going on, but we'll have to wait for the chromosomes to come back, hopefully next week.

We met with the neonatologist, Dr. Lewis. She continues to be concerned that he's not doing a lot of breathing on his own. She "challenged" him earlier and turned the vent down. Normally, the presence of CO2 would trigger the brain to breathe, but he didn't. She's also concerned that he's not moving, except when he startles and pulls his arms in. Her guess is that his brain just isn't working correctly. She encouraged us to hold his hands and gently move his arms, to try and relax them, and to stroke his chin in an attempt to get him to swallow. One theory for all my excess amniotic fluid is because Cayden wasn't swallowing. This is strange to us because his bladder was full at both ultrasounds (indicating he was swallowing), and the fluid only seems to have accumulated in such excess in the few weeks before his birth, as based on my fundal measurements.

So, no answers yet. We'll continue to wait and see and hope for a miracle.

Day 6.5

Last night we learned that Cayden will have an MRI Friday morning. What a way to mark his one week birthday. He will be hand ventilated while they move him to the MRI location and then re-connected to an ventilator there. They will also need to move him entirely into the MRI machine. Knowing that he does not tolerate being moved well at all, we are extremely concerned with how he'll do. The MRI will look at brain structure and might provide some big answers. Then we meet with Dr. Golabi, the geneticist, at 4:30.

You know when you have a bad dream and you wake up and realize it was just a dream? Last night I had a dream that I was having some kind of surgery and no one was scrubbed in and the surgery was taking place in some random non-operating room. It was scary. Then I woke up and that wave of relief that typically washes over was replaced by a realization that our real life nightmare is much, much worse. I don't think I'll ever again experience that wave of relief that "it was just a bad dream."

Day 6, Dark and Dreary Indoors and Out

We hoped today would be bring better news, but not so. I checked in with Dr. Lewis, the current neonatologist and she reviewed the EEG results with me. She didn't sound as concerned and the results are not definitive, but we'll follow-up with the pediatric neurologist. The bigger news was that she called in a geneticist to look at Cayden, as she's concerned about some of his facial features, which could indicate some kind of genetic issue or syndrome. Basically, he has a long space between his upper lip and nose, and an almost non-existent dimple above his lip, like most people have. He also has very few facial creases, like smile lines, that she said even preemies tend to have. He also has a small chin and mouth, and she's concerned that he's still not doing a lot of breathing on his own, if any. So, I just got off the phone the geneticist, Dr. Golabi, who seems very good and who looked at Cayden today. She got my permission to take clinical photos of him (child model already?!) to send to a colleague in Kentucky who is supposedly very good. We'll probably meet with her tomorrow.

We're taking it one day at a time, one hour, really. I have a permanent lump stuck in my throat, so if I'm not picking up the phone, it's not because I don't want to talk to you, but because I don't think you'll be able to understand me through my blubbering, or because I'm in the hospital or sleeping. Thank you for your support, it means everything to us.

Day 5

So, we knew there would be ups and downs, and today was our first down day. We should've expected it, I guess, after last night's big up. The gist is that an EEG done today showed some "discontinuities". The EEG was done by a pediatric neurologist, to try and determine if the rigidity in his arms and legs is a result of abnormal brain function. All we know right now is that the EEG wasn't perfectly normal, as we'd been hoping, but it doesn't necessarily mean Cayden has neurological problems. They'll continue to assess using other methods, including an MRI once he's more stable. Once again, we're in a wait and see situation.

To top it off, an ultrasound today indicated that Cayden has a double hernia, though that's the least of our concerns, as the nurses reassure us that the surgery is routine. Cayden was breathing a bit on top of the vent this morning, but not at all tonight. The good news of today is that his fingers were much less clenched and his arms seem to have a bit greater range of motion. And he opened his eyes a tiny bit for the first time tonight!

Today was tough, lots of tears from mom, dad is amazingly strong and the best support I could ever ask for. We feel bad for Cayden and just hope and pray that he's okay. We know that things could be worse, but it's so unfair for such a tiny person to have such a rough start in life. Here's hoping for a better day tomorrow.

End of Day 4/Change We Believe In

I was discharged today after another round of bloodwork, a flu shot, and a TDap shot. Walking out of the hospital without Cayden was extremely difficult and my heart ached until we went back to see him last night. Not being right down the hall from him is miserable and makes me worry constantly that we're too far away should something happen.

We went back to the NICU around 8:00 and met Cayden's night nurse, Erin, who is incredible. We walked in and did a quick scan of the two primary monitors. One of the monitors has a number that represents the number of spontaneous breaths Cayden takes on his own. Since Friday, it's been at 0, except for one time when it went to 1. We don't want to rush the little guy, because we know he has excess fluid in and around his lungs. Well, last night we walked in to a monitor reading 10! And during our visit, it got as high as 15! So for every minute of breathing, be was taking around 10-15 breaths all by himself. We nearly started dancing a happy dance and Daddy started chanting "go Cayden, go Cayden, go, go, go Cayden. This was the best news yet, and while the blood gas they drew right after we left wasn't much improved, knowing that he's trying to breath by himself was fantastic. We were giddy the entire way home. Let's hope that tomorrow is just as good if not better. Go Cayden!

Day 4/Inauguration Day

Cayden had another uneventful night, with one slight exception-2 poopy diapers! We're told this is good news. Dr. Goldman just ordered a blood gas check, to make sure his CO2 is not creeping up again. Hopefully we'll get good news. As far as other news, we don't have much to share. Still not sure about the cause of the anemia. Cayden has a hernia, which is typical in preemies and will be corrected surgically at some point in the future. He has a PDA, patent ductus arteriosis, a heart duct that is open during pregnancy but closes after birth. It can stay open in preemies for a while. PDAs can be fixed with medicaion or surgery. Unfortunately, Cayd is not a candidate for the medication bc of his kidney functioning, but as it's not bothering him at all, it's something to be figured out later.

I'm being discharged today, but will be spending most of my time here. Thank you all for the incredible outpouring of support. We are so grateful for our amazing circle of strength and we know Cayden feels it too.

Monday 1.19/Day 3

Cayden had another uneventful night, which is fabulous. His favorite hobby seems to be blowing bubbles, which earns him lots of suctioning. I keep telling him that if he doesn't like to be bugged,he should stop bubbling, but he's not listening to mommy. Maybe daddy can talk some sense into him;)

32 Weeks and it's a boy!

Definitely thought I'd be updating more belly pics before adding baby pics, but who am I to argue with Cayden's decision to join us early. It's tough to keep up with updates via emails, so I'll try to do so here. Day 2 of life and baby Cayd is holding his own. Dr. Slagle, our favorite neonatologist, says he is making progress. Still no answer to why he was so anemic, which is the big mystery they're working on. More blood tests on baby and mama will be done this week. His edema is better and he looks scrawnier, which is a good thing. His CO2 jumped a bit today, so they turned his vent up to give him more breaths per minute and he's responding. Having Grammy here is a lifesaver and we're taking each hour/day as it comes. So far, so good.