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.

Week 29

Saturday marked week 29, and the beginning of the 3rd trimester. I'm shocked at how fast time is passing. Good news is that the sciatic nerve pain has virtually disappeared, as I think Sprout has moved into a head down position. It's the only explanation for what I think are two feet pushing against my ribs. Upper back pain is a pain and the heartburn and nausea that are a result of my digestive system slowing and the hormone relaxin are no great fun, but it's easy to handle since the end is (scarily) in sight.

We went back East last week and got to spend some time in New York City and the Berkshires. I'm so grateful I don't have to be pregnant in New York, I thought I was going to pass out more than once trudging up and down the subway steps. And I did almost pass out in a rare moment in Whole Foods, but was saved by some ice water and shedding of layers. Thanks Er;) I also got to visit a dear friend a mere four days after she'd given birth to her babe. Hearing Ani's birth story and seeing baby Marc made me realize how real this is all is, and made me even more excited to meet Sprout.

I know the next 10 weeks will fly by, between work, a brief babymoon, a shower and a visit from mom, March 14 will be here before we know it. Until then, I promise I'll try to be better about eating vegetables though I will completely understand if I have a child who prefers Honeycrisp apples and clementines to broccoli and carrots.

Week 26 and a pain in my butt

Here are long overdue pics, of a belly at 26 weeks exactly. I'm starting to actually feel pregnant in an awkward, it's not so easy to bend over and pick up Scout's business kind of way. And Sprout is causing a major pain in my butt, literally. My sciatic nerve is killing me and seems to have gotten worse this week. I started prenatal yoga today, so hopefully that'll bring some relief. And for some bizarre reason, likely hormones, the nausea has decided it's back full-swing, and ginger ale and saltines are a staple on the grocery list once again. And pomegranate juice, no matter how diluted, is out, as it makes me feel like I have the stomach flu on steroids. It's not as bad as I make it sound, I'm very grateful to be nearing the third trimester and can't believe how fast the time is flying!