Recap of the past 72 hours….

1st off let me say THANK YOU for all of the thoughts, prayers, comments, and support. We have felt so much love!!

Olivia did SO great. She far surpassed any expectations that the doctors had and that we had. She is a strong little cookie!

Friday morning was an EARLY morning. We were up at 3, to get on the road at 4. Of course we hadn’t slept at all worrying about what was to come. My parents came over to stay with Blake and Ryan, Livi, and I took off. To say I was nervous was an understatement. I literally felt sick to my stomach the whole ride down. We got to the hospital at about 6:40, a little early for our 7:00 check-in time. Olivia slept the whole way down, but once we got there she woke up and she was MAD! The poor thing couldn’t eat anything after 2am, so she was just so hungry. It is terrible not being able to feed her…knowing that was all that she wanted. We had to wait for about 30 minutes before they could take us back to the pre-op area. She screamed the whole time. It is SO unlike her to cry, so it is just painful for us to hear.

Once back in the pre-op area she continued to cry and fuss…but then eventually nodded off. We were in pre-op for about 1.5 hours and we were able to be with her until they took her back. During this time we had to answer all sorts of questions. We talked to nurses, anesthesiologists, and our doctor came and told us what his plan was. There were LOTS of kids waiting to go back for surgery. The whole environment is so scary! During this time I was thankful that Livi was so young, b/c she didn’t know what was about to happen. It was terrible to listen to the older kids (3-4 years) as they had to leave their parents :(

The doctors seemed very optimistic that things would go well…but again wanted to talk about the possibility of the tracheotomy. He told us that we would keep us posted as much as possible during surgery. He thought that when she came out she would have a breathing tube, so wanted us to be prepared for all of this. I don’t know how “prepared” you can be…but we were aware at least.

Waiting in the pre-op area to go back for surgery

At 8:30 they took her back. We were able to walk back to the operating area and then we had to hand her off and head up to the waiting room. We didn’t even see them put her under or anything….which I think is a good thing.

My parents, Blake, Ryan’s mom, and grandmother were all there to wait with us. It was good to have Blake there because he was a good distraction for us and kept us entertained. He was SUCH a good boy the whole time. He definitely knew that something was going on. About 45 minutes into the surgery we got an update that the procedure was in process and that everything was going well. After about an hour and 20 minutes the doctor was able to come up and give us an update. This was a pleasant surprise, because we were told that the surgery would take at least 2 hours. Doctor said that everything went well and that she was in recovery.

We were able to go into the post-op recovery area after Livi woke up from the anesthesia. She looked so tiny in that bed…..BUT she looked way better than what I had prepared myself for. She had no traech…She had no breathing tube! She was pretty uncomfortable, but they were controlling her pain with morphine and Tylenol.

Post op, in her 1st ICU room

She was transferred up to the PICU unit for close observation. Ryan and I were able to sit with her in the PICU unit. Talk about an intense setting! She was on Oxygen to help her breath…she did a lot of sleeping for the first 8 hours. She would wake up in pain every once in awhile, but they were able to keep her comfortable with the medicine. She could not eat for the first 8 hours post op. After 8 hours we were able to try pedialite. They were nervous that she would not be able to swallow since the surgery was on her airway. They told us that there was a good possibility that they would need to insert a feeding tube…..NOPE!! Our little champ took the pedialite through a bottle and kept it down. After 3 more hours she tried formula and was able to do that as well!! GREAT NEWS.

Getting to hold my baby for the 1st time

View from our 1st PICU room w/ Olivia's sign that Child Family Life made her

At 11 pm we were transferred to a different PCIU room. It was a step down from where we were…but still ICU care. We actually had MUCH more room in this second room and it was much quieter. Livi had a good night. She had all of the nurses wrapped around her little finger in no time at all.

At 8 a.m. yesterday (1 day post op) the doctor came in to check her out. He was SO pleased to see how she was doing. Her breathing was already better. She was much quieter and it sounded less labored. She is still swollen, so it will get even better as the swelling goes down. He cleared us to move from ICU to the floor. We just had to wait until there was room for us.

Ry and his girl :)

At about 1:00 we were transferred to a new regular room. We spent one more night there. She had another good night…and they released us this a.m. We were able to leave at about noon. This was much sooner than we had originally planned for…and we could not be more thrilled.

Our nurse today told us that she was reading Olivia’s chart before she came in and thought…”oh no, this poor baby has been through so much, this is going to be tough”…she said that she knew that Liv would be very uncomfortable and in so much pain after an airway surgery at her age/size. BUT, she said that Liv re-wrote the book for infant airway surgery in her mind!! She was such a trooper. Liv was all smiles all of the time.

My parents brought Blake down to see us and to visit twice and that was great. Ryan’s mom drove down to see us twice as well. It was so nice to have some fresh faces there. Ryan and I were able to get a bite to eat when they were there…and get out of the room for a bit for a change of scenery.

We have to go back in 3-4 weeks for (potentially) another surgery. Doctor removed the mass in her throat, which was a cyst, and hopes that it will not return, but we will have to monitor that. In 3-4 weeks he will put her under again and go back in to see if there is more skin to remove from her throat area. The extra skin would be from the laryngomalacia that she has. This surgery would be much more common than the one that she had Friday. There is a slight possibility that she will not have to have anything else removed…but we wont know until he gets in there. He didn’t want to do it all at once for fear that the recovery would be to rough on her. It is sad that we have to go back and do this all again…BUT I think that it will be easier the next time, knowing that she took well to the anesthesia…and that she is such a tough girl!

Cozy in her second PICU room...

Trying to made her feel "at home"

My beautiful little girl...

We were very lucky with how things turned out. Things could have gone WAY worse…but we had the best outcomes that we could ask for. I know that it is because of all of the prayers that were being said…and the excellent care that we received from the medical staff. I cannot say enough good things about all of the doctors, nurses, and staff that were there! She still has the collapsing trachea and laryngomalacia…but will (hopefully) grow out of these as she gets bigger.

Sleeping sound in her third and final room...

Finally ready to go home :)

Being in the hospital there sure does make you thankful for what you have. We are so lucky to have two healthy happy babies! There are so many kids there that have such a long road to recovery.

The worst day of my life….

So far anyway. Tomorrow will be worse I am sure.

Yesterday we had Olivia’s appointment down at U of M Children’s Hospital. I went into the appointment SO optimistic. I really thought that they would just be confirming what out peditrition and ENT had diagnosed as Laryngomalacia. I thought that they would just check, confirm, tell us that she would grow out of it, and send us on our way.

I was wrong, WAY wrong.

We started the morning in Radiology. They were going to do a GI Chest Fluoroscopy and a Swallow Study. It was so sad. They strapped her up on a wall for the invasive x-ray part. She just hated it. She was screaming so much that she was turning purple. Next they strapped her to a board and strapped her head down, legs down, and arms above her head. She looked so uncomfortable. The made her drink this white chalky looking stuff and looked at how it went down into her tummy. She hated it and spit most of it on the table.

Next we were off to see the ENT. I was still optimistic at this point, b/c the Radiologist said that things looked good.

Once we got in to see the ENT they were nervous about her weight (or lack thereof). I have never been too worried, b/c Blake was a peanut too. She IS gaining weight…just not very fast. The ENT took a scope and went up her nose and down her throat. Right away you could see a big mass at the base of her trachea….this is where things went downhill…fast.

He said that he would have to remove it. BUT, before removing it he needed to make sure that it wasn’t her thyroid. I guess that babies start out with their thyroid up in their throat and then it descends to its regular position before they are born. In RARE occasions it does not descend.

We had to have a nuclear test done to see if it had thyroid particles. This test was terrible. They had to inject her veins with a dye. They could not find a vein to get into anywhere. They tried both hands, then a foot, and then finally got it into the crook in her elbow. It was dreadful to watch that needle prodding around in her. Once the dye was in we had to get her to relax and fall asleep. Again they strapped her down and did the test. This test took quite a while.

After that we were back up to the ENT. This place is HUGE….so I bet we walked 5+ miles yesterday. The ENT confirmed what he said was GOOD news…and it was not her thyroid. SO, he went ahead and scheduled surgery to remove it……TOMORROW. This is just all so fast and scary. He isn’t quite sure how surgery will go…b/c he will not know what the mass is like until he gets in there. Hopefully it is soft and he can remove it. We worry that it may be hard, or have blood attached…there is also a chance that he will have to give her a tracheotomy during surgery. The thought of that makes me ill.

After scheduling the surgery we had to go to pre-op. An anistegeologist looked her over to determine if he could put her under for the surgery. He thought that he could…and mentioned a big vein in her head that would be good for an IV. I can’t imagine seeing her with an IV in the head .

Next we talked to Social Workers about what we were feeling and going through. I think that at that point I just felt confused and scared. It was just so much to learn ALL in one day. Like I said, I had NO CLUE going in. I think that it may have been different if I could prepare myself a bit.

Next we were off for blood work, to make sure that her counts are good enough for surgery tomorrow.

SO…we are home for a day…and then back for the long haul. They think that she will be in ICU for a few days…and then who knows. Please pray that everything goes as well as it can go over the next few days.

Olivia’s 2 Month Well-Visit

I took Livi to her doctor on Tuesday for her 2 month well visit (even though she is already 2.5 months…that’s just when they could schedule it). She was such a doll while we were there…and we were there for a LONG time!

Stats:
9.7 pounds (about 10th percentile)
23.5 inches long (between 50-75th percentile)
15.5 inch head circumference (between 25-50th percentile)

She is growing nicely and doc said that she is tall and skinny….just like her brother!

She is doing well on hitting all of her regular milestones. She did have a slight cough though, so we were sent down for X-Rays of her chest. The cough and her breathing issues b/c of the laryngomalacia were enough cause for concern. Doc said she would rather be safe than sorry. We waited at the lab for a LONG time. Poor Livi did not like the X-Ray. She was too tiny for the tube thing, so I had to hold her down, on her side, with her arms over her head…..needless to say, she was pretty mad at me. This was just after 2 shots, so she was already a little cranky! BUT, luckily the doc called back soon and the X-Ray was good…her chest looked clear.
We go down to U of M Children’s Hospital next week to see the specialist….and if all goes well we don’t have to see the regular pediatrician until her 4 month well visit (knocking on wood).

Cell Phone picture of my happy girl :)

1st day away….

Today my little Livi is 11 weeks old. She also started daycare. I know that it was much harder for me than it was for her. I started back to work full-time yesterday, but my mom watched her. Today I got myself and both kids ready and out the door by 8:00. It takes a bit longer, and I have to get up earlier, but I think that we can do this!

Olivia was ALL smiles when she was getting situated with her new friends and new teacher. I know that she will get PLENTY of attention there. She is in good hands and is at the same facility as Blake. There is only one other girl in the infant room with Livi and the rest are boys…so they are happy for some more pink in the room :)

Ryan stopped in to check on her during his lunch break and reported back with this e-mail:
"Stopped at daycare, Blaker just went down for a nap so I didn’t get to see him. Olivia was wide eyed in the swing, she was happy to see me, smiles the whole time. They said she was great, hadn’t made a peep. She did start a bottle then stopped and wanted it about an hour later, they were wondering if that was normal. She acted like she was getting hungry before I left. She is such a sweetheart."

SOOO….I guess that I am sitting here sad at my desk…and she isn’t missing me at all. That is a good thing though!

I wanted to take a picture this a.m. on her first day, but I forgot. I will get some tonight :)
I will leave you with this cuteness in the meantime...

Olivia’s ENT Appt.

We went to Midland (abt. 45 minute drive) today for Olivia’s ENT appt. We have been waiting for this appointment for 6 weeks. This was a referral from out pediatrician in regards to Livi’s laryngotracheomalacia. We got there….waited about 40 minute sin the waiting room….got into the exam room…and the ENT said, oh…wish I would have known how little she was…there is nothing that I can do here. SOOOOOOOO….all of that wait, and still no answers. He referred us down to the U of M Children’s Hospital. We have an appt. there with a specialist next Wednesday morning. That will be a major trip. The office is about 2.5 hours away from out house. Appt. is at 8:30…so we will be leaving before 6 a.m. for that one! I am hopeful that we will get some answers then.

This has been a pretty long drawn out process…but I am thankful that Olivia doesn’t seem to be bothered at all. I THINK that they will just confirm the diagnosis and we will wait for her to grow out of it. BUT, you never know….keep your fingers crossed for us!

She continues to be a perfect angel. Such a happy, content baby girl!

Not really having it....

I tried to take a few pictures of my sweet little Livi on Wednesday when she turned 10 weeks old...but she wasn't really in the mood I guess. She is typically SO smiley and sweet all of the time....but I just didn't capture that here!!

She is still just as sweet as can be...and such a peanut. I put her in a 0-3 month outfit (as opposed to newborn) but is was just a wee bit big still!!

She is obsessed with her tongue and sticks it out a lot. She is making lots of sounds...I think that she is going to be a talker!
She is thinking that I am crazy...'enough already mama!!'

Yep....that's it...so much for our photo shoot!!

Olivia Kay is 2 Months Old!!

I can’t believe that our Livi is 2 months old already! She is such a good baby and so happy.

*Her 2 month well-visit isn’t until March 1st, but I am guessing that she weighs close to 9 pounds or so? She is getting longer, but is still so slim!

*She is wearing her newborn clothing still…but onsies are getting too short!

*She is in newborn diapers, but next time we will switch to size 1

*She eats about 2 oz. every 3-4 hours during the daytime. At night she will sleep for about 5 hours the first time, and then 2-3 after that. Last night she went down at 9:30, woke at 3:30…5:30…and 7:45. She is quick to eat and then goes right back to bed!

*She is still sleeping in the bassinette in our room.

*Her hair is getting a bit lighter, but is still darker than Blake’s ever was. Her eyes are very dark blue.

*She is SO alert and looks all around. She loves to lay under her play gym and is just mesmerized by the lights and toys.

*She smiles all of the time. Has the cutest smile and her eyes light up when she smiles :)

*Still breathing very heavy and loud…goes to an ENT on Feb 28th for her laryngotracheomalacia. We are getting more used to the sound…but it still kills us to hear her labored breathing. Luckily it doesn’t seem to bother her!

*Other than that she has been very healthy…knock on wood!
We are SO lucky to have such a beautiful baby girl! We love her so much.