Our Christmas

Christmas day was VERY relaxed. The girls played, fought, cried over and over. Bruce and I helped move Collin's bedroom upstairs and decorate it with his new Halo fatheads. He was ecstatic! I then ended up cleaning and organizing the playroom, living, office and kitchen. Only leaving my bedroom and the girl's bedroom left to clean. Coltrin's invited us over for Christmas dinner. We put the girls to bed at 8pm. Then Bruce and I called it a night shortly after 9pm.
I think that the last 6 weeks is finally catching up to me. I'm feeling more and more exhausted each day. Hopefully with Bruce off this week I can get some added rest.

Getting ready to open our first presents

Collin's jump rope from G&G Baird

Jordon's still trying to pose instead of opening presents. Sienna jumped right in.

Ahh the excitement!

New cowboy boots!

Rapunzel barbies

Disney Princess learning books from CJ

Collin's gifts

Santa's gifts to the girls

Jordon's gifts

Sienna's gifts

Collin's Santa gift

Our Christmas

The girls playing with their DS's

Daddy & Alexa

Life at home

Alexa has done really well adjusting to our crazy life here at home. She slept quite a bit on Sunday and then into Monday. Monday and Tuesday she had a bit a of hard time adjusting to the chaos and change of atmosphere. She was on edge and had a few crying fits. Each day she would adjust a little bit better and wouldn't be quite as fussy. I was a little concerned that she wouldn't be able to handle Christmas Eve at my Dad's very well with all the cousins over. She did fantastic. Maybe it was because all the Aunt's and Uncles wanted to hold her but she didn't fuss once. She really is a great baby. She loves to be held and I have to admit I'm okay with that since I wasn't really able to hold her much the first 6 weeks.

Grandpa Kynaston was so thrilled to hold her

Jordon and Daddy enjoying Alexa's first day home

Rooming In

On Saturday the Doctors started talking about trying to get Alexa discharged either Sunday or Monday. Part of that process is 'rooming in'. This is where you stay the night in a room at the NICU with the baby. Learning how to give the meds and when. Also learning to use the pump machine for her continuous feeds at night. It was great finally being able to spend time with Alexa and seeing what her night schedule was like. She did wonderful. Unfortunately, with the nurses coming in and preparing the meds and milk for the continuous feeds I didn't get any sleep. By 10am Sunday morning they were getting all the paperwork done to discharge Alexa. We finally left the hospital with our sweet little baby shortly after 1pm. The adjustment for Alexa was a little hard. The noise and stimulation was more than she could handle. She was very upset and it took me a while to get her calmed down enough to give her her scheduled morphine. She pretty much slept from about 5pm till 7am this morning with a few awake ups at night to nurse.
This morning was also a little rough for her. I'm hoping that she will adjust soon. She is finally asleep after a clean diaper change, nursing and her meds. We just love having her home. What a blessing she is in our lives.

Worst labor EVER

Okay I was going through my pictures and found a pic I didn't know my husband took. This picture in itself tells it all. This is from Alexa's labor.

In between pushes after puking

Once there was a snowman

Bruce and the girls built a very big snowman last week. They were very creative on 'dressing' the snowman. I must say I was quite impressed.

A light at the end of the tunnel

So I do believe there is finally a light at the end of the tunnel.  Alexa is recovering really well from the stomach surgery. She had a rough 2 days afterwards but is finally acting more like herself. They have her back on formula again and are talking about switching to breast milk on Monday. Hooray!! The occupational therapist and I are going to work on bottle feeding Monday morning. I'm praying that goes well. We will be using breast milk so I don't know how it won't. I feel like we are finally on the home stretch. Once we can get her eating she can come home. Today they weighed her and she is 9lbs 10oz. She loves to try and talk to Mom. She gives me big smiles when I talk to her.I'm so in love with this little girl. I just can't wait to bring her home.

Grandma Baird & Daddy the day after surgery

Proud Papa

Today we went to the hospital and brought the girls. Jordon hasn't seen Alexa in a few weeks. After about 30 mins the girls started fighting (weird) so Bruce took them home so that I could enjoy her. Tomorrow we will leave the girls so that Bruce and I can enjoy her together.

Daddy and his beautiful girls

Changing Alexa's diaper

Isn't she sweet??!!

We just love her

Mommy and her precious baby

On the mend

Today Alexa had her surgery to fix the acid reflux. When we got to her room a 'cuddler' was holding her because she had been fussy. I love that the hospital does that. I think it's such a great idea to have volunteers help out with holding the babies and letting them know that they are loved. She handed Alexa on over to me. So we then cuddled for about an hour. Her IV on her head started to come a little loose so we laid her back down so the nurse could fix it. I then sat Alexa up so that she could be a 'big girl' and look out the window. She loved this.

Around 1:30pm they took her down to the O.R. I must say it was a LOT easier to watch them wheel her away this time. No tears, not near as many fears and more of a smile on my face. This surgery to me is a surgery to help get her home sooner. Once we get the reflux fixed then she will be happier and we can work on the feeding which is the last thing we are working on to get out of the hospital. The morphine weaning is almost complete and hopefully after the next 48-72 we can start the lower doses again. After they wheeled her back we went to the cafeteria to eat. We ran into another couple from our ward (Conely's) who are adopting a baby boy. It was nice to chat with them on the excitement of their new addition. We then headed to patient financial services on applying for secondary insurance through SSI. It may or may not work but worth a try. By 3pm we headed to the surgery waiting area. After only 30 mins in there she was done and Dr. Reynold's came out to tell us that the surgery went really well. She didn't have any blood clotting issues since she has been on blood thinners. They didn't need to use any blood, platelets, etc. In fact the surgery was right on schedule that she didn't need any extra IV fluid either. So hopefully she won't be very puffy. We went up to her room to see her. The Dr. did a cute little snowman picture on her dressing. We are super happy that everything went so well and are anxious to see how she is doing tomorrow. Thank you SO much to everyone for your added prayers.

Here we go again

Well poor Alexa can't cut a break. She has been doing really good with the weaning of the morphine. They lower the dosage every other day and so far she hasn't had a problem with it. Her chest fluid output has finally come to a halt and hasn't produced any since the 2nd chest tube fell out. Thank goodness!! They are trying to slowly switch her over to a fattier formula then the fat free formula she is on. So far so good. They took an x-ray this morning to make sure the fats aren't being sluffed into her chest cavity. It came back clear. woot woot!! Once they can get her fully on this new formula for a few days with no problems then we can work over to breast milk.
On the other hand ....

Yesterday they did a GI tract x-ray to see how bad her acid reflux is. They put barium in her stomach and then watched her acid reflux. Apparently hers it really bad. I'm not at all surprised by this after watching her constantly gag and be in discomfort from the reflux. This is common with patients that have had open heart surgery and to top it off acid reflux runs in the family. Now the doctors want to do a stomach surgery where they take part of the stomach and wrap it around her esophagus to keep anything from coming up. My Dad has had this surgery done as well. They also want to put a Gtube in her stomach with a port that opens up on the side of her belly. This is like a back up if she is having problems eating, burping, or puking. If we don't use it after a month then they just pull it out and close up the small hole. Having another surgery means more morphine ... sheesh. So hopefully she will be having the surgery this Monday so we can get this over and done with so we can bring her home. The recovery is only a couple of days so we are really hoping to have her home before Christmas. Gosh, that would be nice. We still have to meet with the surgeon sometime today or tomorrow to get all the details.
Last night the nurse had me give Alexa her blood thinning shot. I was so nervous to do it. I'm not afraid of needles or blood. I'm nervous about the feeling of the shot going into the skin. My palms were sweating and my hand were a little shaky but I did it. It really wasn't that bad just sucks having to do it.

 So tomorrow Alexa turns 1 month old. At times I can't believe she is already a month and other times it feels like she should be like 2 months old. This last month feels like a crazy nightmarish dream.

You be the judge

So Alexa really is a good mix of both Jordon and Sienna, BUT I think she is looking more and more like Jordon. What do you think?

Alexa

Jordon

Sienna

Sick Baby

On Wednesday we went to visit Alexa at the hospital. She was in a rocking bed. They typically put sick babies in these soothing beds. Babies that are going through withdrawal from mother's who had a drug problem. She herself seemed drugged sleeping in this bed. Her eyes kept rolling in the back of her head. She just didn't seem like herself. Of course this was bothersome to Bruce and I, but she had just had a big day the day before. The airplane ride, being off feeds for almost 4 hours and starving from the transfer, new formula and meds, new place, new nurses and Mom and Dad not being around as much. I called the next morning to see how she was doing since it was Thanksgiving and we wouldn't be up to the hospital until afternoon. The nurse informed me that her chest tube fell out during the night. This really pissed me off. Why you ask?? I will tell you why. Although her drainage was going down it hasn't completely stopped. They are monitoring it through x-ray everyday to make sure of that BUT if the drainage builds up I'm not sure how they will drain the fluid because she is on blood thinners. They may not be able to just put in another chest tube. Thankfully, we haven't had to address this issue yet. So far she has not had any drainage. We went up to see her around 5pm on Thanksgiving and she was much more alert and more herself. The nurse had changed her out of the rocking bed and put her in a crib with a mobile. Cala held her first then me then Bruce. We didn't stay long because Sienna was with us so we only lasted about an hour. After we left she had reach her breaking point and melted down. She freaked out so bad the nurse could not console her in any way. She was so worried about Alexa. Apparently she had a really rough night. They finally came to the conclusion that Alexa is having morphine withdrawals and is addicted. Rightfully so being that she has been on morphine since the day she was born. I went in this morning to spend some quality time with her without Bruce and the girls. This is when the nurse briefed me in on what happened after we left and how her night went. She decided that Alexa was over stimulated and had reached her breaking point. She took down the mobile and we decided that the less stimulation the better since she is so sick. They are having to wing her of the morphine which includes a regimen of finding out what her capture point or happy medium of how much morphine she needs. They are giving her morphine every 8 hours for now to find out how often she needs it and then lesson or increase until they find that point. Right now she gets very aggravated easily and throws up from the withdrawals. If she is moved in any way especially after having her diaper changed she throws up. Once they find the capture point they will slowly wing her of the morphine which could take weeks. Then we can work on her feeding. So it looks as though Alexa will be in the NICU for a while. We are now really hoping to have our baby home by Christmas. I feel so helpless at times. I couldn't help but cry to watch my baby be so sick and need the morphine. That any little movement I made would make her throw up. I just have to keep taking each day one day at a time and try to not let it catch up to me. I'm still waiting for my final breaking point as well. It almost feels at times like I haven't even had a baby. She is suppose to be with us in our house. Me changing her diapers, me giving her her baths, me nursing her to sleep, me cuddling her throughout the day. My room has a void in it that won't be filled until she gets home. I miss my baby!

We're Home!

Yesterday Bruce and I were sitting in Alexa's room in Spokane. I was watching TV and Bruce was working on his laptop. At about 1pm the nurse came in and told us they got word from St. Lukes in Boise that they were firing up the plane to come get us. This came as a huge shock to us as we were thinking it wouldn't be until Wednesday. Bruce checked to see if there were any openings in the last flight out on Southwest and sure enough there was. He booked his ticket and we went back to the hotel to check out and pack up our bags. By 2pm Bruce was on his way to the airport and I headed back to the hospital. The flight crew was to arrive around 3pm. At around 3:45pm they finally showed up and packed Alexa up and we headed to the old Spokane airport. It took us about 30 mins to get there due to traffic and snow. We got loaded up in the plane and I was told to sit in the cockpit with the pilot. I was super excited because I've never rode shotgun in a plane before. The pilot was really cool and we talked the whole way home. Poor Alexa didn't like the flight and cried almost the whole time (1 hour 10 mins). It was SO cold out that night. Thankfully not in the plane but we flew through -50 below weather. The windshield was totally iced over. We arrived in Boise around 7pm and was shuttled by ambulance again to St. Lukes. They got her all tucked in in the NICU. Bruce, Kim and the girls drove up to see Alexa. The girls were so excited to finally meet their little sister. They both got to touch her this time. We are so glad to be home. This year we truly have SO much to be thankful for this Thanksgiving. I'm so thankful for a father in heaven that hears and answers numerous prayers. For having such a big and healthy baby to get through open heart surgery and recovery. She is such a spunky little fighter that definitely has a LOT of determination. I'm so thankful for a wonderful family that helped out so much in watching our kids so that Bruce and I could be together in Spokane. For a wonderful loving husband who was my rock when I needed him. For wonderful friends who opened their homes to take our girls for playdates. For an amazing ward that went above and beyond the duty of  service to make sure our family was fed while I was gone. For an amazing staff at both St. Lukes and Sacred Heart that took such great care of my baby. For Doctors that are blessed with amazing hands to perform open heart surgery on such little hearts. Most of all to ALL our friends and family who prayed for us everyday. I can't thank people enough and I feel forever indebted to you for everything. Thank you!!
Love,  Robyn

Tooth Fairy

I'm a little behind on blogging this. On Saturday the 6th Jordon lost her first tooth. She had 2 loose teeth both on the bottom. Bruce only pulled out 1. She did great!  She was so proud. We told her to be sure and put her tooth under her bed so that the tooth fairy can bring her money. When she woke up she was SO excited she had 5 quarters under her pillow. A few days later he pulled the other tooth out. So they went to target to get a strawberry shortcake toy with the money.

Back Transfer??

When Bruce and I got to Alexa's room this morning Dr. Jensen greeted us with some optimistic news. Dr. Emge the cardiologist in Boise is trying to make the back transfer happen by this Tuesday. Weather permitting of course which is kind of scary because it has been snowing here and in Boise. Dr. Jensen wanted to make sure that Dr. Emge was sure he could care for Alexa and asked him IF Alexa's chest tube output doesn't stop what would he do. He suggested the other surgery as well and said that he has a surgeon on his staff that would be comfortable doing this. Dr. Jensen wanted to make sure that they wouldn't just send her back to Spokane. The great thing is today she only had 54 in her fluids compared to the 145 she had in yesterdays. This is HUGE!! If she keeps it up we may be able to pull the chest tube in 3 or 4 days. That is one more check on the checklist to come home.
On the other hand today was a fussy day. They started her on a fat free formula yesterday and she hasn't tolerated it very well. She was super gassy last night and was a little gaggy. They gave her some anti nausea medicine which helped her. This morning shortly before we came in she threw up 2 times. So they held off the feeding for a couple of hours and lowered the amount. She became very upset throughout the morning and her gag reflex was super sensitive. We gave her mylicon gas drops which helped a little but she was so uncomfortable that we ended up giving her morphine at 2pm. She slept from there on out. When we left at 8pm she was still sleeping soundly. Hopefully tomorrow she starts to tolerate the formula a little better.

Me calming Alexa down after having her blood thinning shot which is very painful.

Well here we are

So the Dr's started Alexa on Heparin and TPA to try and dissolve the blood clots. The heparin is a blood thinner so that she doesn't created more clots and the TPA is what they use to try and blast or dissolve the blood clots. There are 3 blood clots in 3 arteries around the heart. So far they have not caused any problems. They have decreased somewhat in size. The 2 littler ones don't speed up or slow down the blood flow. The bigger clot however does speed up the blood flow a little. She had her last does of TPA yesterday. They don't want to to give her anymore TPA because it is too risky for her to start to bleed out. They are letting her body take care of the clots themselves for now. They have started her on blood thinning shots that she will have to continue for the next 6 months. It is to be given twice a day that I have to administer ... YIKES!! We watched the nurse give her the first shot this morning. NOT FUN! She cried harder then I've ever heard her cry as of yet. This shot will also bruise her every time so I'm not even looking forward to what her poor little thighs are going to look like.
Her chest tube is still draining so that has to remain in until it drys up. The fluid that is draining from the chest tube is basically inflammation from the surgery and the thoracic lymphoid. If the fluids don't clear up within 2 or 3 weeks then she has to have another operation on her belly to claps shut all the lymphoids in the belly. This is not a guaranteed fix so this is a last resort operation.
They have also started her on formula today. I'm super excited about this. It's a special fat free formula that goes through her feeding tube. It has been almost a week since she has had any food other than the nutrients they have been feeding her through IV.
Dr. Emge who is her cardiologist in Boise is really trying to get her back transferred to St. Lukes. Preferably this coming week before Thanksgiving. We are keeping our fingers crossed this can happen. So far things are looking positive just a long recovery. We will take it as long as she continues to get better and if she can be in Boise so that we don't have to be apart from the other kids.
I can't believe she is already 2 weeks old. How fast time has flown.

Roller coaster

On Monday Alexa had a really bad day. She would cry and cry if you moved her in any way. I would just sit and hold her and try to not move. She had the look of pain on her face all day. They would give her tylenol but that never seemed to do justice. I felt so helpless and tried to console the only way I knew how. I just loved her. At about 4pm they wheeled her down to radiology to put a picc line in her arm so that they could take the central IV line out of her jugular. They had to put her under to do this and also do it under xray because her veins are so little. When she gets morphine or sedated and in a deep sleep her heart does weird rhythmic patterns. So they had an EKG done when she got back up to her room. She stayed asleep after that and made me feel so much better. After talking with Bruce who had had a bad day as well trying to work and deal with the girls we had decided I would come home for 2 days and fly back on Friday. After talking to the cardiologist to make sure this would be okay if I left, which she assured me it would be fine I went back to the hotel and booked my plane ticket.
On Tuesday I got up earlier so that I could spend 2 hours with Alexa before I left. When I got to her room I noticed that her chest tubes where out. This kind of freaked me out because I know her chest fluid output was still high and I couldn't figure out why they would take them out. When the nurse got to the room I asked her. She had said the night nurse had picked up Alexa and heard a gush of air. Her chest tubes had worked themselves out and that totally explained why she was in so much pain the day before. They took the tubes out and she had been super content the rest of the night. They will probably put another chest tube in her back to let the drainage out. I held her for an hour which was pure heaven. She would just lay there and stare at me with her big blue eyes. It melted my heart. At 9:35am she had an echo done. She held my finger and I stroked her hair until she feel asleep. I had to leave at 9:55am to catch my taxi to the airport. Just as I pull up to the airport I got a phone call from the cardiologist. They had found that she has numerous blood clots in and around her heart and one big one at the end of her picc line. She had suggested doing a high dosage blood thinning medication to help break down the blood clots. This is very risky but necessary as at any time those blood clots could dislodge and go to her lungs. I went into the womens bathroom and cried. I called Bruce to tell him the news and he told his boss he was done working for the day. I cried the whole flight home. Praying that my last memory of my baby was not me holding her that morning staring into her eyes. Around 5pm the Dr. called and said that she had discussed the situation with a neurologist and also a hematologist (i think) about the situation because she still had blood in her head from the birth. They decided not to do the high dosage blood thinner but the lowest and centralize the thinning agent straight through her picc line since that is where the biggest clot was.
I called the nurse this morning at 5am to see how she was through the night. She said she had done really well and they are drawing blood every 4 hours to run labs. She had been pretty fussy around 10pm so they gave her a dose of morphine and she had slept all night. Looking forward to good news today. Yesterday was so emotionally draining I can't handle any more bad news.

Day to Day changes

After Surgery

Day 1 after surgery

I'm awake

Breathing tube removed