Two Months

I had the following post all typed up and ready to go on Monday. I just wanted to read through it one more time before posting because I hate putting anything out with errors. Then, as promised on our first day in the NICU, the roller coaster changed course and plummeted head first toward the ground...

On Monday night, we learned that both boys had been having a lot of events, which means they basically stop breathing or are not breathing efficiently and their heart rate and oxygen saturation plummet. We are used to this happening because it is very common for preemies, but we are not used to them not being able to recover on their own. Since this behavior was not typical for them, they ran a lot of tests and increased their support. This also meant that they needed to go back to the intensive care unit, so the doctors and nurse practitioner could keep a close eye on them. We were happy to have them move because the most important thing is being in the place where they can get the help they need. The calm room with all the space can wait. 

We were hoping these changes would help, but unfortunately Quin was still struggling. On Tuesday, I heard the anxiety producing dings of a baby needing help. Like always, I quickly turned to look at my boy's monitors hoping it was not one of mine. Elan's was fine, but Quin's was flashing red. One nurse was already there, but then I saw a few more quickly making their way over to him. As I made my way toward his bed, I saw my baby boy lying helpless and his face was blue. The nurses immediately paged the respiratory therapists and got to work on stimulating him to get him breathing again. His heart rate would raise a little bit and then immediately drop back down. They put an oxygen mask over his face and after what seemed like hours, his heart rate came back to normal. I put my hand over my baby boy and cried. About ten minutes later, the same thing happened again.

This is how things go in the NICU. One day you are riding high, discussing what they need to be able to do to go home and the next day you are fearing for your child's survival. It's a really hard ride, but all I can do is stick with it and ride it with my boys. I have learned not to linger in the negative and scary because it always seems to get better just like another saying in the NICU: two steps forward, one step back. Even through it is really easy to dwell in the negative, I work really hard not to do that because I would hate to miss any of the amazing and positive moments. I would give anything to have them back in my stomach, but I have become truly grateful for this time with them. I have seen them flight like hell, kick their nurses, smile or make a face that looks like smiling, poop on people (including me), hiccup, cry, and stare at me like they know who I am. 

Today the roller coaster is heading back up from it's terrifying plummet toward the ground. I don't know when or if the course may change, but I will keep riding with them. 

Post from Monday... 

It's hard to believe it has been a month since we last posted on the blog. Time is flying by now that we are spending a lot of time with the boys and crushing on the house every weekend. 

We are thrilled to report that the boys have made a lot of improvements over the past month. In order for them to go home (still hopefully in October) the main things they have to be able to do is maintain their body temperature, breath on their own, show that they can gain weight, and eat while maintaining their breathing. They have made progress in all these areas! 

1. Maintain their body temperature: Both boys were moved out of their incubators and into little cribs a few weeks ago. That means that they have achieved one of their requirements for going home. Oh, and we now get to dress them in really cute outfits. Win! Win!

2. Breathe on their own: Both boys have made a lot of progress in this area as well. They have moved from having a machine breathe for them to machines that will breathe for them only if they forget to breathe, which they do because they are little and their systems are immature. Recently, they were moved onto a high-flow nasal canula because they have proved that they can breathe on their own with minimal support. This machine only provides them with pressure in their lunges and oxygen. Now, the goal is to ween down their support little by little until they can do it all on their own. 

3. Show that they can gain weight: Elan has dominated Quin in this arena for most of the month, but little Quin is slowly starting to catch up. Both boys have doubled their birth weight and are putting on a healthy amount of weight each day. Just like all of us, they go up and down, but the goal is around 20 - 30 grams per day, or between 150 and 200 grams per week. They definitely still have some weight to gain before they can come home, but they are both heading in the right direction.

• Elan: 
• Birth Weight: 760 grams or 1 pound 11 ounces
• Current Weight: 1,921 grams or 4 pounds 4 ounces

• Quin:
• Birth Weight: 700 grams or 1 pound 9 ounces 
• Current Weight: 1,705 grams or 3 pounds 12 ounces

4. Eat while maintaining their breathing: As you can imagine, this is a very hard step. They have begun some exercises to prepare them for this step, like practice with a pacifier, but they are still being fed through a feeding tube. Once they ween their respiratory support a little bit more, they will get to start working on this goal. 

One of the most exciting things that happened this month is that they were moved from the Neonatal Intensive Care Unit (NICU) down to the Neonatal Intermediate Care Unit (NiCU as we call it). This means that they are stable enough to be in an area where the babies to nurse ratio is 3 to 1, instead of 2 to 1. This is a huge step and the new digs are a huge upgrade. We have a gigantic area to ourselves and there are only 4 babies in each room, instead of 6. We keep telling the boys not to get too used to that much space because their bedroom is half the size of their new living quarters. 

Now that they are more alert and we can hold and interact with them more, we have been trying to spend as much time as possible with them. My weekdays now consist of getting up early to go to CrossFit Interbay because I was released to work out a few weeks ago. Then I head to the NICU for rounds with the doctors and nurse practitioners. In the middle of the day, I try to get a little work done before heading back to the NICU to hold them. This usually equates to 5 to 6 hours a day with the boys. Geoff is still working in Anacortes, so he comes down to hold them two to three nights a week for 3 to 4 hours. The other nights he heads back to Bellingham to work on the house. 

Being away from them on the weekends is getting increasingly more difficult, but we are working very hard to get the house livable before they can come home. We still have a lot to do, but we are making steady progress. We will do a post soon about the house with some pictures, so you can see how far we have come. 

Thanks again for everyone's continued support! This is a very long journey and we feel incredibly fortunate to have all of your in our lives and we cannot wait for you to meet our boys! 

Heads up! There are plans in the works for a very untraditional baby shower or welcome home party. This may involve a CrossFit competition at Kulshan CrossFit for all who want to partake with a celebration afterword. We will send out more details when we have a better idea of when the boys will actually be making the trek back to Bellingham. Stay tuned!