Livi's 15 Month well visit

I just took Livi to her 15 month well visit this morning. Happy to report that all looks well. We just switched to a new pediatrician (for a whole list of reasons that I won't get into right now). Poor Liv is extremely scared of doctors and doctors offices...but I get it...typically every time thy go (to her specialist at U of M) they stick a scope down her throat. Thankfully those days are past us. Hopefully she can start to realize that not ALL appointments will be like that..and start to adjust a bit.

Liv weighed in at a whopping 20.5 lbs today keeping her right in the 10th percentile for weight. She was 32.5 inches tall...so in the 90th percentile for height!

She doesn't look TOO nervous in this pic..but as soon as the doc walked in she was just a screaming and a shaking....poor sweetie!


Luckily we wont have to go back for another 3 months :)

It has been one year since Livi Kay has had her surgery. WOW…that was a fast year. I can remember how terrified I was a year ago. Our sweet baby girl was going through SO much…and she was just so tiny then.

Well, I am happy to report that that chapter has closed and we can move on now. Livi had a checkup at U of M Children’s Hospital on Monday. We have been going back ever few months for a scope and check-up. The appointments are always pretty painful, as they do not put her out for the scope. The older she gets, the harder it becomes because she totally remembers what is coming and fights like a crazy woman.

Monday was no different, painful to watch…but the results were MUCH better. Even as recently as November (at our last appt.) the doc still thought that he saw a little mass at the base of her throat. There was always the threat that it would come back, and another surgery would be required.

This time…she looked GREAT. Her larynx and pharynx were shaped perfectly, no mass, no signs of anything at all. And DEFINITLY nothing wrong with her vocal cords…she can scream with the best of them.

SO, the doc released us and we don’t have to go back to the clinic at all. Hallelujah!

We are so lucky that they found what was causing Liv’s issues at such a young age…I shudder to think what could have happened had they not found the cyst. Who knows how fast it could have grown. We had excellent care from everyone at U of M. I am so thankful….and I know that she had SO many people thinking about her and praying for her…thank you for all of that. She is such a healthy, happy, vibrant little thing today :)


Pictures on the way down...we had to leave pretty early...Liv wasn't so sure about that:

Her new "cheese" face...it's not pretty....hopefully this is just a phase!

And on the way home...such a trooper!!

Olivia’s Check-up

We went down to the UofM Children’s Hospital yesterday for another check-up for Olivia. We were hoping that this would be the last one…but it isn’t. That being said, she IS OK! That is all that really matters.

Dr. did another scope to look down at her throat. I have to say that that is one of the most painful things to watch and be a part of. The older she gets, the harder it becomes. She fights us like crazy now. I have to hold her legs between my legs and her arms down at her side. A nurse has to bear hug me from behind and hold her head. The dr. goes in with the scope…and poor Livi just screams the whole time!! The whole process only takes a few minutes, but it is the longest few minutes EVER!!

The doc was very thorough with Livi yesterday, and that makes me feel good. She still breaths very raspy…but he doesn’t think that is because of her larynx or anything in that region anymore. He assumes that it is just congestion.

He looked long and hard at one specific spot at the base of her throat…and he couldn’t really tell what it was. He said that he couldn’t say for sure, but that it MAY be a cyst. It really looked NOTHING like the first one. That one was huge and looked like a balloon about to pop. This spot now is more of just an abnormality. It isn’t big or protruding into her airway. He doesn’t think that there is anything to worry about.

That being said, he want to see her again in 4 months for another scope and to see if anything has changed with the spot. Hopefully it looks the same (or better) then and we are good to go!!
She is SUCH a good baby and I am so proud to take her anywhere with me. Aside from the few minutes during the scope…she was a perfect little angel!!

Doctor re-caps and Pictures!!

On Monday my mom and I took Olivia down to U of M for a follow-up on her throat. It was raining like crazy the whole way down! It typically would take about an hour and a half or a bit longer to get there, but because of the weather it took us over two hours. Needless to say, we were stressing and late. BUT, when we arrived we saw a sign that said that Dr. Koopman was running about an hour late. I guess it all worked out in our favor. We waited in the waiting room and then in the back as well. Olivia was a perfect angel the WHOLE time. Seriously, she is just SO good. She had all of the people in the waiting room just so entertained. She smiles at everyone and giggles. She is such a sweet baby girl!

When the doctor finally came in he decided that he wanted a scope her again. That is a pretty painful process, but Livi did a very good job. They squirt saline solution in her nose and then put a scope in and down her throat to look around. The hardest part is that I have to hold her the whole time. She was crying like crazy, but stopped as soon as he was done and never made another peep!

The doctor said that everything looked good! GREAT news for us. He said that “he thinks that she is out of the woods…but she isn’t quite out of the woods yet”…those were really his words. Ha. Anywho…we have to go back one more time in 4 months. If she looks good again then I think that she will be cleared!

She has come SO far since that initial surgery. We are very lucky to have gotten the referral to that hospital. They are definitely the best of the best!

On Tuesday I went down to Henry Ford Hospital in Detroit with Ryan for his hernia. We didn’t know quite how long it would take to find the place or what traffic would be like, so we ended up getting there an hour and a half early, ugh. THEN, we hear that this doctor is running up to TWO HOURS behind. Blah. All together we were there for about 6 hours….tack the 4+ hour trip on to that…and the whoe ting took ALL DAY!

Again, we hear that this doctor is the best of the best, so it is worth it. Come to find out Ryan has bi-lateral hernias…one on each side! Poor guy. The left side is a re-tear. He has already had 2 sports hernia surgery’s to repair that side. SO, we will be addressing that side first. The doc said that he would never do both sides at the same time because of the extreme pain. He will operate on Ryan’s left side on Monday, July 25th.

I feel so bad for Ryan because he has been in an extreme amount of pain for quite some time now. I really hope that this helps him!!

This past weekend we got some pics taken by the awesome Miranda at MP Photography. She posted these two sneak peaks on Facebook. Could they be ANY cuter?!?

Olivia Kay!!

Tomorrow marks 2 months since the day of Olivia's surgery. It seems like just yesterday, but at the same time it seems like a lifetime ago. She is doing SO great. She is growing like crazy and really starting to make some changes in her appearance and behaviors.

Last week we went to her pediatrician for her 4 month well visit (although she is almost 5 months now)...we are a little behind on these visits. She still weighs below the 5th percentile...but she is in the 50-75th for height and 25-50th for head.

She is almost outgrowing her 3 month clothing because she is so long! She is still in size 1 diapers. She still eats about 4 oz. every 4 hours...but we are starting on some rice cereal. She doesn't quite get it yet, but will with some practice!

She still wakes up a couple of times a night...but I am ok with that, because it is just to eat and then back down.

She can roll over....but prefers to be on her back all of the time. She has great head and neck control! She smiles ALL of the time..and laughs a ton! It just melts my heart!

These are pictures taken just before we left for her second surgery on 04.26 that she didn't end up even needing!! YAY :) I just love this little peanut!

What I'm Loving Wednesday - Olivia Update

It's time again for another What I'm Loving Wednesday hosted by Jaime!

Today I am loving one thing above all else...and that is the fact that I am home with my healthy little Olivia!
We did NOT think that we would be home today...and that she would be as healthy as she is! We were scheduled for her second surgery yesterday at 1:30. Poor thing had her last bottle at 7:30 and we packed up and headed to the U of M Children's Hospital. It was all a little too familiar this time. BUT, I was a little more at ease knowing the routine.

The poor thing is just starving before heading in there! She just doesn't understand why we aren't feeding her!

We checked into the hospital at 12:30 and waited in pre-op until 1:30. During that time we met with the nurses, anesthesia, residents, and our surgeon. Everything was the same as last time. The paperwork was drawn up just as last time....scary to read because they put ALL possible procedures on there.

She is up to 10 lbs. 13 oz. Still a peanut for a 4.5 mo. old....but she is growing!!

At about 1:35 they took her back. Saying goodbye and good luck is the hardest part.

My mom and dad came down and brought Blake. We were so thankful to have them there!
We all waited together in the surgery waiting room.

In about 30 (!!) minutes the doc came up and said that she looked FINE! NO issues....he didn't even have to operate. AWESOME news!

SO, she was only in there for about 45 mins. and then Ryan and I were able to go into the post-op area and see her. She was very upset and uncomfortable at first. I think that it was mainly hunger!

She was able to eat and they have her morphine for pain. That really helped. She was groggy from being put under and sore from having a breathing tube and whatnot.
Within a couple of house we were headed HOME! Such an awesome feeling, especially after they had prepared us and reserved a PICU room for us. We had packed out clothes to be there for awhile.

It was great sleeping at home last night. Liv had a great night and has been great so far today. I am still in awe of this little peanut. She is such a trooper!

We go back again in 2-3 months for a follow-up...but NOT in the operating room...just in the docs office! HOORAY :)

I have to admit that before the surgery I tried to act strong and positive...but in the back of my head I was always thinking the worst....I just worried 'what if they get in there and the mass is back and bigger'....as a mother, I am sure that thinking the worst is natural...you can imagine how relieved I feel now!!

Say some prayers....

...for our sweet little Olivia tonight. She goes in tomorrow for her second surgery on her airway. This one shouldn't be as serious as the first one, so I am confident that everything will go just fine. They will be putting her under and going in again through her mouth. This time the doctor will remove some of the extra skin at the base of her esophagus. The skin has grown in an irregular way due to the mass that was there when she was born. The mass was removed 6 weeks ago. The doctor will make sure that he got all of that out, and that it is not growing back. We will be in PCIU for one night minimum, for observation. I am REALLY hoping that we will only be there for one night and than we can come home on Wednesday. Cross you fingers and say some prayers for our little peanut!!

One of the hardest parts is the not eating or 6 hours prior to surgery. It is so hard because she just doesnt understand why we arent feeding her! Last tiem she just cried and cried. This is hard for us, because Livi just isn't a crier! Poor sweetie. It makes me really feel for unfortunate mothers who do not have enough food to feed to their babies....I can't even imagine :(

She has been doing SO good since the first surgery...and I am sure that this will make her even better!!

Livi - Update

I just wanted to type a quick update on how our little Olivia is doing since her surgery. I am SO happy to report that she is doing AWESOME. She is really exceeding all of our expectations. Her surgery was three weeks ago...and just looking at her you would never know what the poor sweetie went through. She is breathing and eating so much better than she was before the surgery.

She used to only eat 1-2 oz. per feeding...but is now up to 4 oz! Since the surgery she has already been able to put on one whole pound!

Her breathing sounds SO much better. Sometimes you can't event hear it...that NEVER happened before!

We are thrilled with her progress. She is scheduled to go in for her second surgery on the 20th of April...but we are confident that that one will go just fine and then all of this will be behind us!

These pictures were taken the morning (well like 3am) of her 1st surgery. Can you see the fear in my eyes?! I was on the verge of tears!!

Bless her little heart...what a sweetie!!

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.