I Feel Old!

My first born is 15 years old today!! Most people say I don't look old enough to have a 15 year old, and yes, we started young, but it's kind of nice when people think Haylee is my sister. Haylee has been an amazing kid from day one, and we are so grateful to have her in our family. Being a first born myself, I know how tough it can be to be the guinea pig for your parents. While the teenage years are most surely challenging at times, Haylee has been so fun for us. She has an amazingly strong sense of who she is and knows what she wants. She is a strong leader among her peers and is a confindant young woman. She will go far in this life and we can't wait to see where she takes us next! Next year, driving and dating...not if we can help it!!! 

She so loves me!!

My first and last born girls. Crazy how time flies.

3 Weeks Old...already!

It's hard to believe, but Maycee is 3 weeks old today. I feel like we were robbed of her first 2 weeks, so I am trying to make up for lost time. She had her well baby check up with Doc Anderson today and he says all looks great for her. She is up to 8 pounds today and has definitely found her appetite! She will be pudgy in no time. 

She is proving to be a very good baby, which is reassuring because we thought after her stubborn entrance into the world, she would be quite the handful. She is already used to the craziness of being the 6th born in a very busy household. Now on top of everything else the kids fight over, we now have to contend with who's turn it is to hold the baby.

Here are some pics we took of her first day at home. 

She has 3 doting sisters that, for now, can't get enough of her. Give it a few years and they will be singing a different tune. Haylee is the house baby hog, but a great help with Maycee. 

The grandma's were so relieved to see Maycee as they both worried to no end while we were away. Our parents were so helpful while we were gone and it was so nice not to worry about our kids. They slaved away doing laundry (at the laundry mat no less), cooking (in a less than complete kitchen), cleaning construction debris from the house, and driving carpools. Thanks again you guys! 

Maycee has 2 amazing older brothers that are sure to protect her as she grows. We still need to get a shot with Brady holding her.

This shot is classic. Jolee had just woke up from a nap and she was seeing this mysterious baby she had heard everyone talking about for the first time. She is absolutely in love with her baby sister! Check out Aaron's playoff beard! Needless to say, the beard came off a few minutes after I got home. 

Going, going, gone!

I am happy to say that I am posting this from home!! Maycee and I were able to bust out of the NICU a little early and we got home Thursday. It has been such a whirlwind here with our family enjoying Maycee that I haven't gotten time to post, but I couldn't keep you all in suspense any longer! You are all so amazing in the love and support you have shown our family through this trial, and we are eternally grateful to each and every one of you for your efforts on our behalf! There are too many of you to count, but you all know who you are and Aaron and I certainly feel blessed to have each of you in our lives. 

Anyway, on to our superstar. I wanted to post some pics of our last days in the NICU. Maycee really did recover quite quickly once the PPHN was resolved. She only needed one extra dose of morphine in her weaning process and when it came to feeding, she took to it quite naturally. We had a night nurse named Claudia and she reminded me of one of those stern, Norwegian type women that are all business. I was a little hesitant to leave the night Claudia was assigned to our baby, but we came back the next morning and Maycee had taken two full feedings by bottle for this woman. This is a big deal because the more they feed on their own, the quicker the feeding tube can come out. As for breathing support, Maycee had a nasal cannula that gave her a little oxygen and as of Tuesday night at midnight, she was off that completely. It was a little scary watching her breathe on her own, but amazing!

Here is a shot of her with her last 2 tubes, the nasal cannula and a feeding tube.

Once the cannula was pulled, she was down to just the feeding tube (which she ended up taking out herself on 2 occasions).  After she was eating all they wanted her to through the bottle and nursing she...

was on her own. They still kept her on a heart rate, respiratory rate, and oxygen saturation monitor for another day, but having her thriving on her own was the day we were waiting for.

 

After all she had been through, her nurse, Julie, and I figured Maycee deserved a spa day. This quickly became a bath photo shoot as Julie loved our camera. She was having so much fun posing Maycee and even strategically placing bubbles to make the shot just right. Maycee is still hooked up to her monitors here, but no, she was not in any danger of being electrocuted.

 

Finally, Maycee's last test before we could leave was the car seat test. She had to sit in this thing for an hour and a half while hooked up to her monitors to make sure she could handle it. Doesn't she look so enthused? 

All in all, our time in the NICU was incredible. The nursing and doctor staff is amazing, the little babies are incredible, and it really is a special place where little miracles happen every day. I wouldn't want to go back anytime soon, but I am grateful for our lessons we learned there and pray for the parents and babies still fighting their own battles. 

As a side note, Maycee is doing really well and by all accounts, is a totally normal newborn. Our last test did show that she has a slight to moderate case of reflux in her urinary tract where her urine back flows through the ureters up to the kidneys. This could lead to potential kidney infections which would not be good. At this point, she is on a low dose of daily antibiotics to stave off any UTI's (otherwise known as urinary tract infections). She has to go back for more scans in 6 weeks, but we hope and pray this condition will resolve on its own. The docs are optimistic, but we really hope she will outgrow this. If she doesn't she would require surgery to re implant her ureters properly in her kidneys. So, Maycee is still in need of your prayers, but for now, we are enjoying her more than words can say.

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.

Sunday night Maycee update

Maycee had another good day today.  They were able to reduce her oxygen level down to 60% and her nitric oxide down to 10%.  They pushed her hard today and she responded well.  Tha plan is to let her rest through the night and then as long as she maintains where she is at they will try to push her again tomorrow to see how she reacts.  It's very scary for Darcy and I whenever they reduce a level on something because there is always the chance that her body won't react well to it and actually regress a bit.  She did have a period of time today when she was somewhat awake and moved around quite a bit.  She also opened her eyes for a few seconds and looked right at us.

The nurses have Darcy and I both helping with her cares as much as possible so we hold the feeding tube, change the diaper, help take her temperature and things like that so we are getting to act like parents a little bit instead of just observers all the time.  

We probably won't have any new pictures until Tuesday night.

Day 6: Good Morning

Shortly before I posted last night, the phone rang and it was the NICU. That's always scary, but our nurse, Ashley, wanted to give us Maycee's update. I had mentioned earlier that when we left the NICU last night, Maycee's oxygen levels weren't were we wanted them to be. Ashley called to tell us that our picky girl decided she wanted a different ventilator. After switching machines, her stats were back up to 100.

This morning came quickly as I really needed to use the pumps at the hospital (TMI I know), so I had Aaron call for an update. Maycee is now down to 90 percent on the machine and doing well so far. Let's pray those levels will hold and continue to improve, but something tells me this little girl has a strong mind of her own and she is taking us for quite the ride. We will post more tonight.

NICU Day 5: Baby Steps

It's late, but time for the daily update. Maycee had another good day. While she didn't make huge strides forward today, she did not go backward and, in the NICU, that is huge. We had an awesome nurse today, she is actually a supervisor, and quite the fireball. She was really wanting to push Maycee to drop her oxygen on the ventilator from 100 percent to 98. We laughed watching our cautious RT (respiratory therapist) and she tease each other. In the end, Maycee decided that she wanted an entirely different ventilator and to remain at 100 percent.

As for successful baby steps today, Maycee had her urinary catheter taken out. She also proved she could pee on her own when Nurse Deb and I changed her diaper. She had a little pee in the first, but as soon as her cute bum was exposed to the cool air, we no sooner had the new diaper laid under her and she let the pee fly! She ended up peeing on her bed, so we had to change all her bedding. This was actually an amazing experience because Aaron got to hold her (basically suspend her in the air) while we changed her bedding. Both Aaron and I have ached to hold Maycee, so this was quite special for Aaron.

This might make great black-mail pics for the future, but we had to capture her first pee diaper! Plus, you have to admit she has one cute bum!

The milk man finally arrived and I have been pumping milk for Maycee for the last 2 days. It's a good thing I did because Doc. Jacobs gave the order that Maycee could eat today. She receives my milk through a tube that runs in her mouth and down to her belly. She eats every 3 hours, and so far seems to be doing great with the feedings. Hopefully, Mom's milk will make her strong!!

Daddy got to feed her this time. Hold up the tube, and it all drains in. Don't let the swelling in Maycee's head scare you. It's normal, and not permanent.

Our little princess has proven to be quite picky. She definitely likes things her way. She does not like a lot of stimulation and noise, so this is her special noise curtain. She better tell her siblings the new princess will be home to rule hopefully soon.

Maycee's other first today was her blood transfusion. This scared me when I first was told she would most likely need one, but it really is no big deal and will help her oxygen levels as the new blood will provide more red blood cells to carry oxygen. They do so many blood gases that the vampires sucked her dry. The good news is that the docs have reduced the number of gases that need taken everyday. The blood gases really are the most accurate way of seeing how she is doing, so they are quite necessary.

Last but not least, we put one of the blankets that has gone through both Chloee and Jolee in Maycee's bed. We figured her sisters would want her to have it. Sweet dreams Maycee baby.

Friday in Maycee land

Beautiful Maycee


laying on her tummy being comforted by Mom

Today was the best day of Maycee's life. Granted it wasn't hard to improve on the previous three days. Darcy and I went to the NICU today quite nervous due to leaving last nights with all of her important levels a bit high. When we walked in she was on her tummy for the first time and was tolerating it quite well and they had even started to reduce the amount of one of her blood pressure medicines. This was such a huge relief for us as we had already tried to prepare for another emotional roller coaster ride but I am not sure we could have done another one. Maycee continued to generally improve throughout the day and by 8:00 pm when we left she was off of one of her medicines completely. Thi is a small step toward her overall recovery but a huge emotional boost for Darcy and I.

It is impossible to describe all of the different feelings we have been through each day and I am not sure that I would even want to. I am so thankful for all of the thoughts and prayers from everyone and can't wait until we can bring Maycee home to meet her siblings.

Thursday night Maycee update

This is Maycee's pee. I never thought I would be so excited for a kid to pee


Darcy holding Maycee's hand



This is during her heart scan




Darcy looking in on Maycee. This is as close as we can get to her most of the time.

Another long day in the NICU for us with Maycee. She is so wonderful and it is so hard for us to not be able to hold her. She actually does best when she is not stimulated by touch or sounds around her so we can only actually touch her a few times a day and even then it is very quickly.

Her medical update of the day is that she is still on the ventilator and a lot of different medications to keep her sedated along with helping to fight infection and controling her blood pressure, oxygen levels, and heart rate. Her lungs have shown improvement and are fully inflating again with the ventilator. Maycee's kidney had a scan today because they were worried she was not urinating all of the fluid they were putting in her. The scan appeared to be normal but will be re-done tomorrow sometime to be sure. A catheter was put in to drain her bladder and let me just say that I have no idea how she held it that long. They drained off a ton of urine. They have not yet determined what virus she has but are continuing to treat her with antibiotics that cover a broad range of things. It is quite common for newborns to show symptoms of being infected but not necessarily have anything. Until her cbc comes back within normal ranges they will continue to treat her as if she has a virus. Her biggest problem currently is Persistent Pulmonary Hypertension (PPHN). In the womb the blood vessels around the lungs are tight and small and after birth should relax and open. Maycee's have not yet relaxed so she is having trouble getting enough oxygen. What the doctors are trying to due is to get her blood pressure up higher to trick her body into pumping blood to the lungs as the path of least resistance. So far we have had very little luck in getting her blood pressure up to where we want it to be for more than just short periods of time. She has had two different scans of her heart and we consulted with the pediatric heart specialist. Her heart appears to be fine other than the PPHN.

Maycee is considered to be the sickest kid in the NICU right now but her doctors, nurses, and therapist have been wonderful and I know that we are getting the best care possible for her.

Maycee Faith Swanson

Here are a couple of pictures of Maycee. We are headed to the hospital now to be with her and will update the blog later when we can.

Thank you to everyone for all of your thoughts and prayers. We appreciate it and know that Maycee does too.