Day 8

Saturday - Day 1 of the countdown

I walked in this morning to see the best site I've seen in days!....

Addison is done with the bili lights and the warmers and we can hold her now. I immediately scooped her up and snuggled her into me. We've spent the entire morning just like that as I have updated the blog with the last weeks happenings. We also went to the rounds this morning with all of the doctors on her case and they had good things to say. Her breathing yesterday was significantly better than her breathing in the past few days. They are hopeful the cannule is going to help her get on the right breathing pattern. They are leaving it at the full 1/2 liter today and will slowly start to ween her off of it in the coming week. She needs to be on room air only for 24 hours before we go home so we are hoping by Wednesday night she is off it and doing well.

Basically Addison is the boss. As long as she keeps eating, breathing well, gaining weight, and all the other things normal babies do we will be out of here by Friday. Keep your fingers crossed for us. I'm not sure I can handle another reset. :D

Don't you just want to squish her little cheeks. I think I have kissed them a thousand times today.

Here she is with her Hippo... who has yet to be named.

1 week old today!

Thanks for all of your prayers and support. We love you all and appreciate your concern. I am going to try and have and update here everyday by noon so those who want to know don't have to try and call. In the NICU we can't answer our phones so updating and keeping everyone in the loop as to what is going on gets difficult.

We are leaving the hospital for the first time tonight so tomorrows update might be late. It has been a week since we got here and we need a little bit of normal back. It is SO HARD to leave my baby the day I finally get to hold her but I am counting on a week of snuggling come Sunday afternoon.

The countdown is on.. 6 more days til she is home!... (hopefully)

Day 7

Friday-- Day 0 of countdown

I slept through most of the night Thursday and even skipped one of my 3 hour pumps. I woke up Friday still feeling pretty hopeless and down. I made my way to the NICU around 5am for Addison's morning meal. When I arrived there were a few doctors in the room reviewing her "event" from the night before. I sat in the corner and listened to their comments and conversations. She had stopped breathing for almost 30 seconds but her oxygen levels and her heart readings were great. They were a little confused and I started to hope maybe they would call it a fluke and not restart our clock. However they didn't seem to even consider that idea. What they did evaluate was the reason she had been admitted. Originally they had admitted her for sleep apnea. However she was not having apnea at all. After looking at her breathing patterns over the last 2 days they determined she was just a periodic breather. She had a beautiful pattern and rhythm to her breathing. She would take about 5 or 6 deep breaths in and then stop breathing for 6 or 7 seconds, then take 5 or 6 more deep breaths to catch up. This changed the game plan. Now they decided they needed to do something to stimulate her breathing and help her develop a more constant breathing pattern. They put a nasal cannule on her and started running room air through it they started her at a half liter of air.

Unfortunately she still needed to be under the bili lights which meant another day of not holding her. The mouth doctor also came in and talked to us for awhile and let us know that her small jaw was not causing her breathing problems. However there are problems later on in life it could cause if it doesn't correct itself as she grows.

The nasal cannule seemed to be working and her breathing got to be more regular, although she still had many stretches of periodic breathing. It was day 0 of 7 but we finally had something going that seemed to be helping.

I think these pictures are actually from day 6. Daddy was burping Addison for the last few minutes she could be out of her bed and she fell asleep in his hand.

My parents came out for dinner Friday night. It is always refreshing to go and do something outside of the hospital. In the NICU there are no windows so the hours and days all seem to blur together and you forget there is still life going on outside.

I received a great blessing from my dad and went to bed Friday without crying for the first night in many.

Day 6

Thursday-- Day 1 of countdown

I woke up feeling a little better about life and headed into the NICU. This is how she was...

Her Jaundice levels were high so they had her under the lights. She seemed to enjoy them and was sprawled out pretty contently. The hard things about bili lights is you can't hold your baby. The only time she was allowed out was when I was nursing. She got 30 minutes every 4 hours to nurse and then had to be back under the lights. It was so hard to not be able to hold her and love her. But I took comfort in the fact that we had 1 day down and only 5 more to go. My mom and grandma came and spent a few hours with us and we went out and played at the park with the kids for a couple hours later that day. It was good to get out of the hospital and see our kids. I was starting to rebuild my spirits and felt okay about the 5 days we had left. Addison hadn't had anything scary that made us worry and her sleep apnea (that is what they admitted her for) seemed to be gone. She was breathing enough to keep her oxygen levels up. She was also eating better. She was nursing fairly well ( which is surprising for a 35 week baby) and she was eating great out of a bottle she had a few feeding she ate close to 2 ounces.

About 8:30 that night I sent Chris into the NICU to take in some milk I had pumped. We were going to go grab some food so I waited outside the doors for him to come back. It took him a really long time to drop the milk off and I started to get a knot in my stomach... something had to be wrong. Just as I was about to go in and see what was going on I saw Chris coming out and the look on his face was all I needed to see to know things weren't right. He took 2 steps out the door looked at me and said "Addison crashed". I instantly couldn't breath, he kept talking but I didn't hear anything he said. I heard enough to know that she had recovered with just a simple re-positioning of her body ( she was on her side and they turned her to her back) but that was all it took to restart her countdown clock. The 2 days we had made it were all for naught and we were now back to day 0.

Chris guided me back to the room where I came apart. I felt broken, and lost, and alone. I didn't have the strength to start all over. I needed my baby, I needed to hold her. It was a bad couple of hours before Chris calmed me down enough to finally get some sleep.... notice the pattern here? I fall apart daily and Chris is always the strong one who reminds me of all of our blessings and talks me back of the cliff?

Day 6 ended with bad news, and lots and lots of doubts and tears.

Day 5

Wednesday-- Day 0 of countdown

I spent most of the early morning hours in the nursery with Addison, feeding and rocking and watching her. I counted down the minutes to the 24 hour mark which would have been 3:00 am. She had been great all through the night except for one episode when she was eating. She had needed some stimulation to come back to normal levels but no oxygen was needed.

At 3:00am I went back to bed excited that we had made it 24 hours. I got a few hours of sleep and woke up at 7 to go check on the baby. There was nothing but good reports when we got to the nursery and I was convinced it would be the day she was coming home. I was thrilled :) we saw the pediatrician over in the corner making some notes and I figured they were discharge papers. I started nursing the baby so happy to finally have good news. About 15 minutes later the pediatrician came over and instantly I knew something was wrong. My heart broke and my eyes filled with tears. He told us he wasn't comfortable with the one bad spell she had that night and even though it didn't require oxygen he thought she still shouldn't go home. He had called the neonatoligist (baby specialist) and she recommended a 7 day stay in the NICU from her last serious event.

I wish I could say I handled the news well, but I didn't. I tried to listen to everything the pediatrician was saying but I couldn't. I was too tired and sad and disappointed. I sat and cried while I watched my baby eat. 7 days seemed like forever. The NICU seemed like such a scary place where really sick babies went. I didn't want her there, I wanted her home with me. Chris, of course, took the news in stride and spent the next few hours trying to comfort and calm me.

Addison was admitted to the NICU around 11 that morning. When I went down to see her she was stripped down to her diaper and had a million different cords connected to her. We were on day 1 of 7 and I felt like crawling in a hole and disappearing for the next week. My emotions were raw my eyes were tired and I spent most of the day just seconds away from a major melt down. Addison seemed to be doing well and all the nurses were encouraging. They thought that she was going to be home in no time. Some nurses even questioned why she had been sent down because she seemed to be fine.

During the course of the rest of that day I had 5 or 6 different doctors come in to tell me all the things that could be wrong with her including but not limited to..

micrognathia- her jaw is really really small and could be the reason she isn't breathing right ( you can read about it here http://www.drchetan.com/micrognathia.html)

a tethered cord- the bottom of her spinal cord might not have developed

low motor tones- the muscles in her joints seem to be overly lax

premature lungs

sleep apena- she forgets to breathe when she sleeps

the problems associated with SUA (the problem I had with my umbilical cord)

Wednesday ended in lots of tears and pleas for help. I didn't quite know how I would make it through the next 6 days. I felt overwhelmed with all the problems the doctors were presenting me with that they seemed to have no answers or solutions for.

Day 4

TUESDAY

The morning of Day 4 came with more disappointing news. She had dropped oxygen again during the night several times and needed to be stimulated to start breathing again. Going home was not a possibility. She could no longer be in the room with us either she needed to stay in the nursery so that she could be monitored all the time and all of her activity could be charted.

This was definitely sad news but we tried to stay optimistic. The nurses were confident she could fix the problem on her own and we could be out of the hospital in one more days time. We spent the entire day in the nursery. The hospital let us keep using our room as a "hotel" stay meaning we could use the room for a small fee every night but there would be no hospital services given. Sleeping on a hospital bed was getting old and my back was starting to feel the effects. We prayed that day 4 would be the day Addison started breathing better and we could all go home the next morning.

My mom came and spent a good part of the day with us which made the time pass much quicker and by the end of day 4 Addison was looking pretty good. She hadn't had a serious de-saturation in her oxygen levels and the pediatrician said if we could go 24 hours without oxygen we could go home and take the pulse ox machine with us just to be safe. The countdown had begun and we were crossing our fingers it would be the last night we stayed in the hospital.

We went to bed about 11:00 and all was well with Addison.

Day 3

MONDAY

Day 3 is when things started to get a little complicated. We were all set to be discharged Monday morning when the pediatrician came in with disappointing news. During the night they had done Addison's car seat test. Because she was a pre-term baby she had to be able to sit in her car seat for 90 minutes without having any breathing problems. Within the first 5 minutes she had failed miserably and that was the start of a series of bad events. She had dropped her oxygen levels several times during the night and needed to be stimulated with oxygen a few times. She had been placed on a pulse ox machine and they were monitoring her closely. We definitely would not be able to take her home that day but they were hopeful one more night would fix the problem. They were mostly concerned that when she sucked a binki or ate she was forgetting to breath. They watched her eat once in the nursery and said it would be ok for us to take her in room with us as long as she stayed on the machine and we monitored it.

All of Monday was spent in the room staring at the oxygen number on the machine. Every time it would drop below 90 my heart rate would hit 500. It was a stressful day but she seemed to be doing better. She even passed her car seat test later that afternoon. We were very hopeful and optimistic she would be coming home with us the next morning.

Grandma and Grandpa Clayton brought the kids by again for a visit during the day.

It is hard for the kids to understand why she can't come home with us. They ask about her all the time. Chris finally told them she was a little sick and needed to stay with the doctors til she feels better. They seemed to be satisfied with that answer.

We went to bed Monday night in the hopes that we would be leaving the hospital the next day with a baby.

Day 2

Sunday was awesome. Addison and I spent the entire day doing this....

Everything was going well, we even got a few open eye pictures.

Chris's family was amazing and spent the entire day cleaning our house top to bottom and getting all the things on my To Do list done. We will forever be so so grateful to them for all the help and support they have given us. They took over everything and anything that needed to be done. They watched the kids, cleaned the house, brought us treats, washed our clothes, brought us new clothes... I can't even list all the things they did to make life easy on us. We can't say THANK YOU enough.

They brought the kids to the hospital that night and we snapped our first family photo.