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

1 Week

Sweet Slumber

Today marks my 1 week of being here at Sacred Heart Medical Center in Spokane, WA. Alexa had another good night. Her chest tube fluids are still pretty high but are coming down. They went from 204 to 145 and I don't know if that's cm, mg or whatever. Still not low enough to take the chest tubes out. On the other hand we took the oxygen out of her nose and her stats have been great. She can finally breath on her own with the help of oxygen. One more thing to cross off the checklist. She has also done really well at learning to suck on the binkie and strengthen her sucking skills so that she can nurse. She has gone all day and night without morphine which is a huge step as well. Now we just have to pray the chest cavity heals so that we can take those dang tubes out so that we can come home.

Yesterday working on learning to suck the binkie

No oxygen, I'm a big girl!

What we've been up to

On Wednesday we got up and ready for the day and walked over to the hospital. We got to Alexa's room and found this:

Apparently Alexa had had a seizure during the night so they had taken her to get an x-ray of her head. We just happen to come while they were gone. You can imagine the immediate shock that went through Bruce and I's head to see this. They found that she has some bleeding in the head but not enough to be concerning. The body will absorb the blood but it becomes very irritating to the brain which can cause seizures.
Thursday was my birthday. Bruce went down to the lobby to get me some breakfast so that we could have breakfast in bed. Then we skyped with the Sienna and G&G at home. We came to the hospital to find out that our little stinker had another seizure episode. They gave her an anti-seizure medicine which makes them very sleepy. I was able to hold her that morning which was ever so precious and long awaited. Bruce also had a chance to hold her as well. Later in the afternoon when I got back from pumping I sat in the rocker chair to hold Alexa again when the nurses came in signing Happy Birthday with a piece of cake and a card that all the Doctors and Nurses had signed. It was awesome. Like I've said before the staff here is amazing. Bruce took me to Tomato Street and Italian restaurant for my birthday dinner. It was really good. We came back to the hospital to have some 'baby' dessert and called it a night around 9pm.

On Friday we got up early since Bruce was flying out that day so that we could have quality time with Alexa. Thankfully no seizure episodes during the night this time. We both took turned holding her throughout the day. We left around 1pm to go back to the room to pack things up and head to the airport. After I dropped off the rental car and got back to the hotel all the emotions of everything and my loneliness sunk in. I couldn't help but cry. You don't realize how much you depend on your spouse for the extra support until it's gone. I knew he had to get back to the girls because they needed him more than I did. I did a load of laundry then headed back to the hospital. I held Alexa again for about an hour until I was almost falling asleep. The nurse asked if I was OK and I told her I was getting very tired so I put her back on her bed. She become very agitated and cried off and on for the next 2 hours. Crying is good because it makes them use their lungs and take deep breaths BUT it is also hard to watch because I couldn't do much to comfort her. She finally got some morphine shortly after 7pm and calmed down a bit. They had to take her off breast milk early that morning because her fats where draining into her chest cavity. So she is back on IV feeding. I don't know if her crankiness was due to being hungry or pain. I hated leaving but I also hated seeing her in pain. I left the hospital around 8pm after she had settled down. I didn't have a good feeling the night would go very well from how she had just been the last 2 1/2 hours. Mentally and physically I was exhausted so I went straight to bed.
When I got up this morning I almost dreaded coming to the hospital. I didn't want to hear anymore bad news. I skyped with Bruce and the girls then finally decided to get ready. When I got here I was happy to hear she had had a good night. The Docs made their rounds and I was told she looks great except for the chest tube fluid output. It was still really high which it shouldn't be at this point. Especially due to the fact that they have taken her off feeds (milk). So she has to go another day with just IV feeding and see if her output dries up some. If it does then they will start up on a formula that already has the fats broken down. If that doesn't increase the chest fluid output or have any milky substance in the fluid then we can begin feeding with a bottle. This is part of the checklist to come home. She needs to be off oxygen, chest tubes out with no drainage and feeding from a bottle. So at this point it looks like later in the week before we can come home. Please keep praying that she will make a full and strong recovery so that we can get home soon.

Day 3 Surgery Day

We got to the hospital by 6:15am. We were able to stay with her as they rolled her down to the operating room around 6:45am. We got to give her kisses and say our goodbyes. This was one of the hardest things I've ever done. As they wheeled her away I tried so hard to be positive but you can't help to think of all the things that could go wrong. Will her heart start back up? Will she have a reaction to the anesthesia? What if she has a stroke or bleeds out. All these things running through your head as you walk away and wait for any kind of update. We headed back to the hotel with tears in our eyes. Took a shower and got ready for the day. Headed back over to the hospital had some breakfast and then headed over to the waiting area. By now we had already heard that she had done really well and they had started her on bypass. Shortly after 12:30pm we heard she had come off bypass and we doing great. They wanted to monitor her chest cavity to make sure it didn't swell too much. It was a LONG waiting game. By 2:30pm we were able to go up to her room and see her. She looked amazing. Such a sight for sore eyes. Suzanne was her nurse and prettied Alexa all up for us by putting a purple bow in her hair.

Day 2 at SHMC

Got up and was out the door by 9am to visit Alexa and see how her night went. Maggie was her day nurse and Tracy was the night nurse. She did fantastic through the night. Today they ran all the post-op labs. Which all came back really good. She slept all day due to being sedated. Bruce flew in at 3pm and we met with the Doctor who went over the plans for the next day surgery. Surgery was scheduled for 7am and we could be there anytime before to be with her up until the surgery. We called it a night shortly after 6pm to get some rest and skype with the kids at home.

Chillin in her bed

Daddy seeing his baby girl

Resting oh so comfortably

Doing what I do best, holding her hand

Day 1 at Sacred Heart Medical Center

We arrived at 10am from Lifeflight St. Lukes to Spokane, WA. Got to ride shotgun in the emergency vehicle to the hospital. Got her all check into the hospital. I met with Dr. Anderson and her nurse Kathy. They were so welcoming and accommodating. They gave me meal voucher tickets for the cafeteria. I sat with Alexa for a little while and decided to get settled into my hotel room at the Madison Inn across the street. Security drove me over there so that I wouldn't have to carry my bag over there. Got checked into my room and laid down for a bit. Packed up my backpack and headed back over to the hospital. I can't stress it enough how nice ALL of the nurses are here. Kathy made me feel super comfortable as I sat next to Alexa holding her hand. I called it a night shortly after 5pm and went back to my room to skype with my family back home and to get some rest.

Getting ready for the transport

Holding Daddy's hand

Almost ready

Mom watching was we begin to depart for Spokane

Loading up to head to the Lifeflight plane

Alexa's Birth

So I'm finally getting around to blog about Alexa's birth. I woke up at 3:30am to get ready for the day and finish packing. We were out the door by 4:30am to head to the hospital for my scheduled induction at 5am. We waited about 20 mins in Triage until they pulled me back into my room. The nurse got me hooked out to the pitocin by 6:15am and about 30 mins later got my epidural. I was a little anxious about getting my epidural because with Sienna when they placed the catheter into my spine it zapped me pretty good. Nothing bad, just startled me. This time the anesthesiologist went slow so that wouldn't happen. Worked beautifully. Dr. Lowder came in at 7am and broke my water. By 11:34am I was ready to push. After about 15 mins of pushing Dr. Lowder called his office to let them know this was gonna take a little while. The little stinker was SO big and was having a heck of a time coming down. We were worried about shoulder dystocia. About 25 mins or so into pushing I got sick and threw up. This was a first for me. Finally about 45 mins into the pushing and the nurses pushing on the top of my belly and on my pelvis to get Alexa out she made her debute. Weighing in at 9lbs 13oz and 20 3/4 inches long. They assessed her and said that her shoulder was not broken just very bruised but she was blue and having trouble breathing. They took her to the NICU and after about 4 hours an x-ray and echo they figured out that she had transposed great arteries. The only cure for this was open heart surgery. Not what you want to hear, but at least they could fix it and the surgery has a 95% success rate.
She and I flew out Sunday morning on life flight to Spokane Washington. It was such a surreal experience. They had to give her a medicine that kept a hole in her heart so that her blood would still mix. The medication makes them feel irritated so they kept her sedated so that she wouldn't be in any pain. We arrived in Spokane about 10am and get her checked into Sacred Heart Medical Center. The doctors and nurses here are amazing!! They have been super supportive and helpful through this whole process.

Last belly pic

Getting assessed

Super puffy from the grand entrance

Trick or Treat

Saturday evening our ward had a 'trunk or treat'. My costume was the 9 month pregnant lady. It only took me 9 months to make the crazy costume. Bruce took the girls and Collin around trunk or treating while I stayed at the car passing out candy. Jordon had a great time running around with her friends. Sienna was a little grumpy because we had to wake her up from a late nap.
On Sunday the kids went trick or treating with Bruce's childhood friend Joe and his daughters. Sienna tuckered out after about 45 mins but Jordon kept going a little longer. They had a great time! When they got home they loved helping me pass out candy.

Grumpy Jessie, Strawberry Shortcake and Zombie Pirate Collin

Strawberry Shortcake

Jessie the cowgirl

Sienna, Jordon, Juliann & Ashlyn

Carving Pumpkins

Saturday afternoon we carved pumpkins. Jordon was at a birthday party so Collin & Sienna carved theirs together and Jordon did when she got home.