Week 27: 3 Weeks Old
If we would have written this post three days ago, it would have a different tone. Thankful for more time to heal and regather ourselves before we share this past week's ups and many downs.
A Typical Day for a NICU Parent
A lot of you have asked what are days look like or if you can visit the babies, so here it goes...
There are six people allowed to go back to spend time with the babies, EVER! This is to keep infection down. The list: Ryan and Abby (duh), Laurie and Brad (Abby's parents), Katie (Abby's youngest sister), and Kathy (Ryan's mom). Yes, you read that correctly, my sister Mary Beth and brother Bradley will never meet the babies until they are home. Ryan's dad will also have to wait until they come home. This was incredibly hard to choose, but it was based on location and availability. So we apologize that people can not visit the babies for now, but come September we hope to introduce them to you in person. However, Ryan and I are taking visitors :)
The babies get overstimulated quickly so spending all day at the hospital wouldn't be beneficial for them or us. The babies have three care times a day. A care time is when a nurse is actually "in their beds" or doing hands-on activities. Ryan and I go for two out of the three hands on times. Care times for all three babies combined last about two hours. During those times Ryan and I can change diapers, help take their temperature, and hold their sweet hands. Other than those times we don't get to interact with them.
We also aren't exaggerating when we say things change hour by hour. Between our morning visit and afternoon visits, medicines change, plans of care change, and ventilation settings change quickly.
We also waited until today to update instead of yesterday because we were waiting for testing results of Max and Miller (results located below)
Maggie
Maggie this week has become one feisty little girl. Our prayers for weight gain have started to become real as she now weighs 2 pounds! Maggie has had an up and down week. She struggled to control her blood pressure and oxygen levels. She had to be placed on the oscillator (a type of vent) to help her lungs rest. Because she was on this vent, I was not able to hold her this week. She started blood pressure medication to help with her feistiness (wonder where she gets that from? :) ) They began morphine doses and gave her a paralytic several times. The doctors and nurses were able to get her more stable and as of today, she is back on the conventional vent (which means I can hold her one day soon hopefully and nurses if you are reading this my fingers are crossed). She is now off the paralytic and blood pressure medication! Two answered prayers this week. Because she was on so many medications they were not able to feed her, but as of today, her feedings have resumed at 6ml every three hours.
We love our precious Maggie all snuggled up!
Max
Our Mighty Max had several setbacks this week. One of the tests we were waiting to hear about before we posted was an infection culture for him. Earlier this week he threw up green bile and had milk left in his stomach at the end of each feeding. The doctors quickly had to do x-rays to make sure his intestines were not perforated. This would have meant surgery. We had to wait to find out and a half a day felt like a year. The x-rays showed no air, which meant his intestines did not have a "hole". This was a relief. We then had to wait 48 hours for the cultures to grow to see if he had an infection in his gut. We got the results back today and it was NEGATIVE! Two HUGE praises for Max this week as either one of those would have been devasting setbacks. They now believe he had the green bile and leftover milk in his gut because he hadn't pooped in two and a half weeks :). He is now back on his feeds and pooping up a storm! Yay poop. He has also done a better job this week with his oxygen. His support has been lowered this week and I hope the trend continues because I'm ready to hold Max. (I haven't been able to hold him yet)
Miller
Our active little Miller has had an eventful week. The doctors told us that Miller has a heart condition called PDA. Before birth, a blood vessel carries blood around the lungs because the lungs are not being utilized. After birth, this vessel closes. A PDA occurs when that vessel does not close and that is the situation Miller is in. As a parent, you never want to hear that your child has a heart condition. Luckily, this condition can be treated with medication; but if medication fails he would be looking at surgery to correct the issue. As I am typing this we are awaiting news on Miller's heart echo and if the medicine worked. Miller has done a great job tolerating the medication and we are praying for good news. He has been taken off feeds for the time being and we hope he will be back at it soon.
