Feeling Better

by Kayte

I woke up feeling much better this morning and the nurses gave me the OK to visit. Again, not too much new to report, which is good! Our good friends Trey & Corynn gave me a lift to the hospital and visited with Max & Lola. We very much appreciate the support!

Lola’s jaundice was gone so she was finally out from under the bright light. Her stomach distension had also decreased so we’re hoping that means no drain for her. We’ll know for sure when they start feeding her breastmilk again. Her eyes are still fused shut and she looks so cute when she tries to open them – her little eyebrows wrinkle with the effort. The only thing they’re watching closely right now is the fact that she hasn’t pooped yet. They might need to give her an enema, but she’s been so stable the past few days they don’t want to mess with her just yet and will give it a few more days. She also may need another blood transfusion in the next day or so, but again, that’s pretty standard.

Max’s stomach drainage was less today than before and he’s on the lowest dosage of dopamine for his blood pressure. He’s still hooked up to the ventilator but breathing pretty much on his own with very little help. They were doing another heart ultrasound today to check on the open valve. I think they’re going to give it another couple days and if it’s not closed by then they’ll have to go in and clamp it. I learned today that the clamp is something that he’ll have for the rest of his life – basically they put it in to close the valve and the heart just kind of grows around it. I saw him cry for the first time today – it was so cute. They can’t actually make noise with the ventilator tube in their throat, but he scrunched up his little face and opened his mouth and flailed his arms around. The nurse changed his diaper and as soon as she took off the old diaper he peed all over the incubator – awww. The nurse had me put my hands on his head and legs and he finally calmed down and went back to sleep.


While at the hospital today I had bloodwork done to check the infection. It will take a couple days to grow the cultures, and if everything comes back normal I’ll have this PICC line taken out of my arm on Friday! Can’t wait. Brody had a good day at work. Only a couple more potential all-nighters before he’s done for the season. My parents get here on Wednesday and I’m very excited for them to meet their new grandkids. Now that things have sort of settled down a bit I love showing them off 🙂


Nurse Kayte

by Kayte

I used our GoPro to record myself changing my medication. Unfortunately my awesome narration didn’t get recorded through the headstrap case. Here’s what I do every morning between 6am and 11am.

  1. Wash hands
  2. Pause the program and turn off the pump
  3. Disconnect the IV line and wipe PICC line with alcohol swab for 15 seconds (sing Happy Birthday)
  4. Prime saline and flush PICC line with saline
  5. Prime heparin and flush PICC line with heparin (to prevent clotting)
  6. If desired, can run around free from baggage for a few hours before continuing…
  7. Remove old IV tubing from pump and replace batteries
  8. Open new IV tubing and break off small yellow tab (to stop flow)
  9. Remove blue cap from IV bag and puncture with spiky end of IV tubing
  10. Prime IV tubing by letting the medication run through to the other end
  11. Thread IV tubing through pump (blue to blue, yellow to yellow)
  12. Prime second saline and flush PICC line with saline
  13. Connect IV tubing to PICC line
  14. Turn on pump, check battery level
  15. Start new program by selecting [Repeat RX]
  16. Put pump and medication into carry-pouch
  17. Enjoy fashion accessory for the rest of the day!


Silent Night

by Kayte

My husband is so great. Last night, on one of his busiest days at work with one of his biggest delivery deadlines, he managed to sneak away for an hour to visit the twins and get an update since I wasn’t able to go today. Nothing had changed since I spoke with the nurses earlier in the day, and Brody said they both looked the most peaceful he had ever seen them.




Sore Throat

by Kayte

Last night I started developing a little bit of a sore throat and it was still hanging around this morning so the nurses at the NICU said it was better if I didn’t visit today. I just called in and got an update – both Max & Lola continue to be stable with little to report. Yay!

Max is still on his antibiotics and the drainage from his peritoneal drain has decreased since yesterday. It appears that the hole in his intestine is healing on its own. His echocardiogram results showed that the valve is still open a very small amount, but less than it was before so it looks like that is closing on its own too.

Lola’s only change is that they took her off one of the antibiotics they started after her broviac catheter. Her stomach is still distended, but it hasn’t gotten any worse so that’s a good sign.

What about an update on the parents? I am feeling better and better every day. I wake up each morning and it’s like an epiphany how much better I feel than the day before. Now all I need is to get this IV out of my arm and I might be almost back to normal! I’m getting bloowork done tomorrow and if the tests come back negative the PICC line will be taken out on Friday. Very much looking forward to that!

I’ve been busy with schoolwork this weekend. I was a little ahead in both classes before I went into the hospital, so miraculously I didn’t get behind. Now I’m just trying to stay on top of things and see these two classes through to the end of the semester (June) so I can stay on track for my CPA. Other than that just keeping things tidy around the house, pumping every 2-3 hours and napping when I can.

Brody is super busy at work delivering both a new pilot and the finale for his show this week. Of course this all had to happen during his busiest two weeks of the year! From what he’s told me though both shows are going really smoothly and once he delivers them on Wednesday he’ll be on hiatus for two months. We’ll see how long it takes for us to get sick of each other with us both being at home 🙂

I’m going to go make some tea and hope this sore throat is gone by tomorrow so I can go see my little ones!

 


Julie Through the Glass

by Kayte

My mom sent me this song (before I went into the hospital) as something that she listened to when she was pregnant with me. Through the glass indeed…




Snagged

by Kayte

Just for the record, our kitchen is pretty much a death trap for someone with in IV line hanging out of their arm…


Steady as She Goes

by Kayte

We had another fairly stable day today – yay. Max and Lola both gained 35 grams last night are pretty much back at their original birth-weights (all babies lose weight when they’re first born). I thought both of them looked a little chunkier so I’m hoping the weight gain continues. They said if all goes well they should be gaining about 25 grams (~1 ounce) per day, even though they’re not getting breastmilk. Both of the blood transfusions yesterday went well and Max & Lola’s blood count levels were where they should be.

The nurses were happy with the drainage from Max’s stomach. It was a lighter color today and hadn’t increased so we’re really hoping that it’s a small perforation and heals itself. They cut back on Max’s pain medication and tried to decrease the dopamine for his blood pressure but he didn’t handle it well so they went back to the original dosage for now. Max also had an echocardiogram to check on the open valve in his heart. All fetuses have an open valve that usually closes by the time they are born, but because these guys were so early the valve hadn’t had time to close yet. Last time they checked Lola’s valve was closed, but Max’s was still open. We should get the results of the echocardiogram in a couple days with hopefully good results.


         
Lola was also stable today. Her stomach was a touch more distended so they’re continuing to keep an extra close eye on it in case she has the same condition as Max. They did a stomach x-ray and didn’t see any air or fluid so that’s a good sign for now. Lola was needing a little more help from the respirator today, which they said is common when a baby gets tired they kind of let the machine do the work for them. She still hasn’t opened her eyes or pooped meconium, but hopefully she will be following her big brother’s lead soon. She’s also still jaundiced so she has a bright light on her all day long (seen below), but the nurses are nice enough to let us move it temporarily for pictures.

My sweet husband got Max & Lola souvenir t-shirts from the Springsteen concert he went to on Thursday. Although they won’t be wearing them for quite awhile, we were able to leave them there for decoration.


      


Micro Preemie

by Kayte

First of all, I would just like to say how amazing my Sister-Person (in-law) has been through this whole thing. She was a calm, stable presence the day of the delivery, has played chauffeur taking me to & from the hospital, and has been a huge support the past week.

She also did a bunch of research and found these adorable micro preemie clothes for infants up to 3 pounds. They’re so tiny they look like doll clothes, and have hospital-approved fittings (velcro) so they can be used in the NICU. I spoke with the nurses and they said we have to wait for some of the IV lines to come out before we can use them, but I can’t wait to see the little ones all dressed up.

Thank you Sister-Person! xoxo


Calm After the Storm

by Kayte

As we hoped, the babies had a boring day today. They were both recovering from the craziness of yesterday but vitals were all stable and looking good. Max is still under the influence of some pain medications so he was pretty mellow, but Lola’s sedation had worn off and she was kicking around like crazy.

They each had a blood transfusion today, which again, is very common for these little guys. They only have about 2oz of blood in their bodies and don’t make enough to replace what the nurses have to take out for tests. Max has had two transfusions so far, and Lola has had three.



Max’s stomach is still draining, and hopefully it will stop over the next week or two which will mean the hole in his intestine has healed. They noticed a small discoloration on Lola’s abdomen and are watching it carefully to make sure she doesn’t end up with the same condition. They have both been taken off the breastmilk and will receive all their nutrients through IV fluid until they stabilize a bit more.

All-in-all a good day. Let’s hope the weekend proves equally uneventful.


Project Linus

by Kayte

Each baby that enters the NICU is given their very own handmade blanket, courtesy of Project Linus. It’s a volunteer organization that makes and donates security blankets to hospitals. The blankets are placed over the babies’ incubators which makes it easier to find them in case they get moved around. Max and Lola’s blankets are below.


Bruce

by Brody


Adam & Eve

by Kayte

I saw this in Max’s incubator for the first time today. The nurse informed me that it is a “gonad protector” for when he has x-rays. Cute, huh?


Peritoneal Drain & Broviac Catheter

by Kayte

Well we had our first “setback” day today. As advertised, it sure wasn’t easy, but all four of us got through it a little better for the wear.

We got a call from the NICU this morning that Max hadn’t tolerated the breastmilk very well and his tummy was distended. They suspected the cause was a small hole in the intestine that was leaking air and fluid into his abdomen. They called in a specialist from UCLA who made a small incision in his tummy and inserted a drain tube to get all the gunk out. They will leave the drain in for 1-2 weeks and monitor the drainage, hoping the hole in the intestine will heal on its own. In the meantime he won’t be getting any more breastmilk but will be “fed” all his nutrients through an IV. Both the ailment and the procedure are fairly routine and normal, but that isn’t a whole lot of comfort when it’s your little guy who’s suffering.

While we were dealing with all of that, they informed us that Lola’s PICC line was unsuccessful for the second time yesterday. After the UCLA specialist was done with Max, the ended up doing a broviac catheter for Lola in a bigger vein in her neck. It sounds scary, but is also fairly routine. The most important thing is that the procedure was successful, which means they won’t have to keep sticking her for new IV lines every time they need to administer/withdraw fluids. They said the catheter will most likely remain there until she goes home.

I just got off the phone with the nurses (who are amazing, btw) and they said both babies’ vitals are good, which means they tolerated both their procedures very well. Max had to have a small blood transfusion to replace some of what was lost during surgery, but other than that they’re both doing well considering they had such a rough day.

Things I am thankful for today:

  • They caught Max’s distention ASAP and were able to get the drain in before anything bad happened.
  • Lola now has her permanent IV line which will make a lot of things much easier (and safer) for her moving forward.
  • Both of these things happened on the same day so we only had to deal with ONE bad day instead of two.

Here’s to hoping tomorrow is a “stable” day – no news is good news!


Gamma & Papa

by Kayte

Max and Lola got to meet one set of grandparents today.

Lola was having her PICC line put in while we were there so we didn’t get to spend much time with her. Max had all the lines removed from his umbilical cord so he got to try a new position. He looked SO cute lying on his little tummy. This was also the first time I got to see his eyes open for an extended period of time. Too precious!

Both babies are starting to “eat” breastmilk. Right now it’s just a tiny amount to get their digestive tract moving, but if they take to it they’ll start feeding them larger amounts for nutrition and start weaning them off the IV nutrition. They also both appear to be free of the infection which is really good news.


Pump It!

by Kayte

Midnight is my witching hour…

They actually cut me off at the hospital yesterday. Said they had too much in the freezer and asked me to store it at home until they need more. At this rate we’re going to need to borrow some freezer space from neighbors.


The Tale of Peter Rabbit

by Kayte

Max & Lola got story time today. They say it’s very good for the babies to hear your voice, so I read “The Tale of Peter Rabbit” from a childhood book of Brody’s.


Names!

by Kayte

Maxwell and Charlotte!

Or Max and Lola for short. The nursing staff printed out brand new name cards for them to show off their new duds.

While visiting today we did “wedding ring” photos where you can see the true perspective of how tiny they really are. Max is holding Brody’s ring in his hand, and my ring fit on Lola’s arm!

They both continue to be stable and make a little progress every day. Max can open his eyes and has pooped meconium! They both had some breastmilk today to prime their digestive system. Baby steps, literally.


Home!

by Kayte

Man, it feels good!

Got here last night around 4:00pm in time to meet with the nurse who set me up with the pump for my PICC line. I’m on IV-administered antibiotics for 10 days to get rid of this nasty infection. Basically I have a semi-permanent IV in my bicep that’s hooked up to a pump that releases the correct dosage of medication four times per day. It’s a little annoying to trip over the IV line, and I have a super cute-looking bag that I have to carry around with me all the time (pictured above), but it’s all keeping me healthy. And thanks to modern technology I can do it all from the comfort of my own house.

There really is no place like home!

 


Baby Girl

by Kayte

We visited the NICU during “hands-on time” today which was a very cool experience. We watched the nurses change diapers and were able to hold hands with the babies! They held right back 🙂

We were too distracted to get pictures with the boy, but got some good ones with the girl. Don’t worry, I will be getting a manicure ASAP 🙂


World Record

by Kayte

Pumping is going well!