OK. So I have been slacking on blogging but I do have a good excuse. By the time I get up in the morning to help get kids ready for school, go to work, hurry home to work on the house while having to have Jolee hang on me so that I don't vanish, check homework, make sure the kids are taken care of and then hopefully get them to bed on time I just don't feel like blogging. But here it is 6:40 in the morning and I am ready for the new day. Granted the new day started a few hours ago but anyways...
Maycee is doing great. She is completely off of the oxygen now and her feeding has improved to the point where they have not had to tube feed her lately. This is all great news because it means that they are working on the checklist of things she has to do to be able to come home. It looks like it could be as early as Friday but more likely sometime over the weekend. Darcy has to take a few parenting classes that are required by the NICU to get discharged. Seems a bit odd that they wait until your sixth kid to give you the parenting class. I am more curious if they have a parenting your teenager class but I am sure that's run by the mental health department.
With any luck come Monday we will be back to life as usual.
As a side note, Darcy has been told by some of the doctors and nurses that they are amazed at Maycee's recovery. A lot of kids that get PPHN as bad as she did will spend more than a month in the NICU. We know that her recovery was greatly helped by all of our family and friends praying for her and for that we are truly grateful.

Sunday night Maycee update

Here it is Sunday night and I haven't updated the blog for a while.  Quite a lot has happened since our Friday post.  First of all I am home in Soldotna with the kids while Darcy is still at the NICU with Maycee.  It looks like it will be another week before Darcy and Maycee get to come home so I had to get back to work to try to start paying for some of these medical bills.  Darcy was able to move onto a parent room at the NICU so we feel very blessed to have that happen.  They only have six parent rooms and they only come available when someone takes their child home.  We had been trying to get one for a while to help with Darcy trying to breast feed Maycee but it really is luck of the draw so to speak.  Now Darcy is living in the same general area as Maycee although not the same room.  Maycee's room is basically next door where her doctors and nurses have access to her around the clock.  

Maycee has started to do better on her feedings but is still having to take a portion of her food through a feeding tube.  She is up to eating 61 ml every 3 hours which equates to about 2 ounces per feeding.  She is still on the vapotherm which is her pressurized air but the oxygen is down to 21% which is the same as the air we all breath so she just needs it to help her to get good full breaths.  They started her out at 6 on the pressure when they removed her breathing tube and late today they got down to 2.  Typically they reduce the pressure by 1 every other day.  All in all she is doing well and baring any relapse should be able to come home possibly next weekend.

Darcy has the camera with her to get more photos that we will post later since I had to take the computer with me for work stuff.

Kangaroo Care

It has been one of our favorite days thus far here at the NICU. They have a great program for the babies called Kangaroo Care, which is skin to skin therapy for baby and mom and dad. I have walked by dozens of parents during the last 10 days, envying their cuddle time with their little ones. Most of these babies truly are tiny and it's pretty intense seeing these 2 pound babies laying on their parent's chest. Well, finally today was our turn! I started the day with little Maycee and even got to try some latching on. Thus far, all of our babies have come out ready to nurse. Miss Maycee has had a slow start because of her recent trauma, but she is amazing the nurses at how fast she is taking to the bottle and the breast. I must say that she has a ways to go until she is an expert, but she is getting the idea for sure.

I just love this pic of Maycee. She is still a bit doped up, but has her moments of alertness and she is already lifting her head. The docs have been impressed with her strength from the beginning, which is one of the reasons why we had to keep her sedated. As for the morphine, she is now receiving it orally because they took her last IV out today! Hopefully she will not need anymore, but they still have to draw blood gases occasionally so this means that her heel will be pricked instead...bummer!

The other fun event of the day was Maycee's first bath. It has been 11 long days and poor Maycee really needed a spa day...she was starting to smell a little funky. She really enjoyed her sponge bath and stayed nice and toasty in the warm water and under the heater. This is her right before her dip. She smells much better now.

Isn't she lovely? She is proving to have rather sensitive skin, but we love her spots and all.

Here is Maycee behind the bars of her new bed...a crib! She is out of the hospital bed and into a real crib. If she is a Swanson kid, that will change when we get home, but for now, we are hoping she will learn to sleep all night in a crib (I think the morphine helps with this a bit, though).

Baby Rehab

Another great day today, and I feel like it's pretty safe to say those scary days are behind us. The docs said the PPHN has resolved, Maycee is breathing room air oxygen with just a little help through the nose, and her final kidney scan came back completely normal. We got to snuggle her all day today and it's amazing how time just flew by. It really is true that time flies when you are having fun. It seemed to go backward when we were going through the rough days.

So to get out of here and come home, Maycee has to go to rehab and she says no, no, no. She apparently likes her morphine, as most babies do that have had to be on it for more than a week. We now are in the process of weaning her off it and getting her to learn to feed from a bottle/nursing. We really want her to exclusively nurse, but it tends to get babies out of the NICU sooner if they bottle feed too. Hopefully she will be a quick study, but the morphine tends to make her a bit drowsy, so we shall see. The lactation consultants are very pro breast feeding and are excellent to work with. Here's Dad getting some bottle practice in.

I cannot explain how it feels to hold my baby after just watching her struggle for the last week. She is actually acting like all my other babies. She even dreams and "talks to the angels", a saying we have when they are making sweet faces while they are asleep. She tends to sneeze a bit more than our others, but that will subside when she gets that nasal cannula out. We are so grateful for even the smallest bits of normalcy we can get with her. She is so special to us, as are our other children, and we are so blessed to have her on the mend. Thanks again for all your prayers and efforts to help our family...they really have worked!!

Another huge event of the day was the removal of Maycee's arterial line through her umbilical cord. The doc's used this line as a way to draw blood gases, but she doesn't need that anymore. This means we can do a lot more hands on with her as she is not tied down with a tube running through a major artery.



Jolee has been able to hang out with us at night at the hotel and it has been really good for all of us. She definitely has missed her mom and dad, and we enjoy snuggling with her at night. Thanks to Auntie and Grandma Lynn for watching her during the day. Dad took her swimming in the hotel pool, and she loved it. Naturally, she preferred being the hot tub a bit more, but it was great watching her splash around with Daddy.

Maycee Goes Tubeless!

Maycee resting a little before they pulled her breathing tube out.

I was watching over her, eagerly anticipating the tube coming out. You may notice my playoff beard going. I decided not to shave until we get to take Maycee home.

This is Maycee about 10 seconds after they took the tube out. Her face is a bit ravaged by all the tape used to strap the tube down, but still a gorgeous sight to see.

Darcy comforting Maycee.

And a very happy moment for Darcy and Maycee both. Notice all of the tubes and wires in the lower right corner. That is everything she still has to work to get rid of.

Today was a big day for Maycee. She had the breathing tube removed from her throat and now is on a nasal cannula. This is a giant step because it allows for quite a bit more movement for her. Darcy was able to hold her for about 30 minutes tonight and I got to change two poopy diapers. All the ladies in the NICU were telling me it was fair but I think I got the short end. Anyways, if all goes well tonight we should be able to hold her quite a bit tomorrow. Her next steps will be to focus on her feeding and hopefully start trying to breast feed within the next few days. She still has a ways to go to get out of the NICU but she has made some huge progress toward that happening.

Tuesday night update

Maycee opened her eyes long enough for me to get a picture of her.

Her first stuffed animal watching over her. Thanks Emily for bringing it by the hospital and sorry we missed you! This bear is going to be her watch me grow bear where we can compare her size to the bear every month. She is already huge compared to the bear, but we are grateful to have this in the hospital.

We had NICU parents arts and crafts time.

Day 8 in the NICU and it was another good day. Maycee started the day off right by weaning off of the nitric oxide around lunch time while getting her oxygen down to 50%. The goal is to get to 21% on the oxygen which is what the air we all breathe has. When she gets there and is able to keep her stats up, then they will extubate her breathing tube and move into more of a mask system. They have a few different options for that so it will just be a matter of seeing what she prefers. Her morphine is down to .01 from the .02 it was at. They want to still keep her pretty inactive but also need for her to be able to be aware enough to do things on her own when its time. She also took the last of her antibiotics today, so unless something else pops up, she won't need anymore antibiotics. They actually were able to get all of her IV stuff attached to her bed tonight, so no more stand alone IV trees.We are headed to bed tonight excited about her progress but also nervous about getting to the point where they take the breathing tube out.

Tuesday morning update

This should actually be the Monday night update but we got in a bit late. I went home Sunday night to see the kids, take care of some work stuff, get some things and ge back as quick as I could. By the time I got back last night and saw Maycee we were both too tired to blog. Anyway, Maycee had a fairly uneventful day. She was weaned a little more from her breathing machines but very little. Another day of rest for the most part. The big news of the day was that she finally had her first poopy diaper. Her respiratory tech kept saying that Maycee was dropping some serious bombs every time she checked on her and low and behold - poop. It's funny how you can get so excited about these things. I know that six months from now she is going to poop and Darcy is going to look at me and say it's my turn to change her and I won't be quite as excited as I am now but I will be very grateful.
On another note our other children are all doing very well. Haylee had her first volleyball road trip this past weekend and her team won both games. They are still undefeated on the season but have some big games coming up this weekend. Brady just finished the cross country running season at his school and was constantly pushing himself to get better. His work ethic in all he does surprises me at times and I am very proud of him. Brady and Jaron both start hockey in a few weeks so Miles Hansen took his kids and the boys to open skate on Saturday. Taegan, Miles's daughter, was worried that they would fall and get hurt. Jaron responded to her that it would be ok because they were wearing some of their gear and then he looked at Miles and said oh no - where's my cup. Gotta love that boy. Chloee continues to do well in kindergarten and is loving learning. On Monday they had to get their TB shot and Chloee does not do well with shots at all. She told us over the phone though that she would be brave. When she came home from school on Monday I was still at the house just getting ready to leave. She walked in and didn't say hi or anything she just took off her coat and showed me her bandaid where she got the shot. She was quite proud and so was I.