Hope for the best, prepare for the worst

Well I'm not even sure where to begin. The last two days have been a overload of information and I'm still not sure we have processed it all. Charli was moved to Lebonheur because they wanted to do an MRI to check the cyst in her head. We knew this was coming eventually but didn't expect to walk in one morning and be notified and moved the same afternoon. Im not saying that Baptist was better than LeBonheur but we were used to it and loved the nurses (and they loved Charli) and it's all very new and overwhelming. Just the size of this place will catch you off guard, not to mention its a maze trying to get in from the parking garage. On the upside Charli has her own room and we can sleep there if we choose. The only problem is its semi private do there are just two lay out chairs behind a half wall. No bathroom, sink or shower.

Charli is continuing to grow and progress, she is now 3lbs and 15oz!! She is really growing like a weed. She is still off her IV and off oxygen. The feeding tube is still in but she is doing great trying to take a bottle. She usually gets around 10-15cc from the bottle, which is great considering we didn't really start bottle feedings everyday until Sunday. (She took all but 5cc this afternoon!) I think the only reason she doesn't finish her bottle is because she gets that milk in her belly and falls right to sleep. We are going to keep working on this and hopefully the bigger she gets the more energy she can spare and she will stay awake for the whole feeding.

She had her MRI on Tuesday morning and did great! She didn't have to be sedated or anything, they said she slept through the whole thing. They told us the neurosurgeon we saw at Baptist would be by later to talk about the MRI. Since we knew it would be a while I went ahead and kept my two week follow up appointment with my Dr. I told her everyone tries to tell me I'm doing too much. She said that's normal because I have a baby in the hospital and I'm running back and forth which is something most post c-section moms don't have to do. But for the most part she told me everything looked good and to take it easy when I can and I'll see her back in 4 weeks.

The neurosurgeon came in around 5pm.  It's one of those things where you want them to come but when you see them you kind of want them to go away because you realize you aren't really ready for what's coming. It's a hope for the best, prepare for the worst type feeling. Essentially, as thought before, she has a sub-arachnoid cyst in the back of her brain, along the midline, which is favoring her right side. It has grown some (millimeters) and there is a concern that it is causing some separation of her cranial sutures (the separate bones of a baby's skull when they are first born). In order to prevent further complications and any intracranial pressure the continued growth of the cyst might cause, he wants to perform a procedure known as 'shunting' the cyst. The procedure has the benefit of reducing the cyst in size, and therefore any of the myriad of problems it can/is causing will be relieved. For example: fatigue, seizures, etc. However, there are risks, and as I understand them, they are:

• Chance of infection - she will be given antibiotics before, during, and after the procedure in order to prevent this
• Chance of blockage - the neurosurgeon feels that there is a low chance of blockage for Charli, due to some technical reason, so we are hopeful in this regard
• Continued care - the shunt is not a permanent solution, therefore as Charli grows it will need to be addressed further, there is a possibility of additional surgery to repair the shunt, or to perform a different procedure altogether, which would allow the cyst to drain normally.

For those of you who don't know what a shunt is its a tube that runs from your head to your belly under the skin that drains excess fluid. Most people that get shunts have hydrocephalus and the shunt is draining the extra cerebrospinal fluid off the brain. Charli does not have hydrocephalus but the cyst is filled with CSF so it's essentially the same thing going down the tube.  They prefer to wait to perform the procedure until she is at least 2 kilograms (approximately 4lbs 7oz) and as there is not enough of a concern to do it immediately, she will be continuing to gain weight (and strength), until she reaches that weight. At that time the doctors will make a decision about when to move forward.

Now, for a less somber topic, let's talk about some of her other progress. First, the MRI showed that her optic nerve looks good (awesome!), and that her corpus callosum is slightly malformed but it is definitely there (also completely wonderful), and that all other areas of her brain look good. As her neurologist said on Wednesday morning, "I have no bad feelings about it" :)! Finally, her platelet count has reversed its trend and is slowly climbing, at her latest check they were at 69,000, we are very encouraged by this. 

We continue to pray for Charli everyday, and we ask that everyone who reads this blog does too. We don't know what God's plan for Charli is, but we know he has one. These are very trying times for us so all I know to do is pray and have faith that God will heal Charli in his own way when she is ready. Any encouraging scriptures you may think of please post in the comments! I pray for courage and strength but I'm very much in need of encouragement these days. :)

                        In the outfit my sister gave me!                                   Everybody does love me!

Oh Mommy you're so funny!

Moving Day

Today was a long and tiresome day. The doctors decided this morning that they wanted to move Charli to LeBonheur today for her MRI. We had known that this was a possibility since the beginning, but it was very unexpected today. The Pedi-Flite team from LeBonheur picked Charli up from Baptist Women's at 7:45 this evening for her first ever car ride, and we were settled in her new room before 9. LeBonheur is a bit different from what we are used to at Baptist, for example Charli has her own room and it has an area for us to sleep so we can always be with her. We came home tonight because we weren't prepared to stay, but we are going back early in the morning, so that we can be there in time for her test.

I tried to go to work today, but Miss Charli would have nothing to do with it! Kati called me at lunch and told me they were moving her today, so I went straight to the hospital. Charli always gets her way! :)

Same baby, new hospital

Long post for a wonderful day

This post will be picture heavy!!

All Reagan talked about this week was going to see Charli on Sunday. So of course she couldn't wait to get there. After church and lunch we headed to the hospital. Nurse Patty was there again today and she was the one who gave Reagan all the goodies. Since Reagan is such a great kid she wrote her a thank you note. I'm telling you that kid is awesome, I hope she teaches Charli some of her good manners. ;)

One of the first things we noticed was that someone decorated Charli's crib! We've taken a few pictures up there and taped them up, but now its all done up and there were even some pictures left for us! Their best guess was her nurse last night, Sarah, so if we ever have her again I'll have to be sure to tell her thank you. It was such a sweet thing to do and really made my day.

So we noticed the picture on the top right and asked when it was taken. They said she took 10cc in her bottle last night about midnight and wanted us to have a picture because she did so good! Yay! We were very excited to hear that. Her platelet count went up to 44,400, so it would appear that they are rising on their own, which is exactly what we have been hoping for. They will check them again in the morning to make sure she is still going up.

She now weighs 3lbs 11oz! Which we are surprised she gained anything because she had two huge blow outs. The good news about that is she got her first actual bath today! That happened before we got there and she had another one right before we left so we had to get her all cleaned up and changed again. This kid is going through some clothes! Once we got her temperature checked and her diaper changed Reagan swooped in for some sister time. She is so good with her and does everything we tell her to, like holding her in her "comfort zone" and talking quietly to her. I'm just so amazed that she's not scared at all because I know I sure was at first.

Don't worry, big sis is here.

I think I like this one, she's more my size.

 In case you are wondering what "comfort zones" are, its the position she would be in if she were still in my stomach. That's why you usually see our hands in the pictures holding her arms close to her midline and holding her feet in. When they kick or push out they are wanting something to push back on them. Their little nerves aren't fully developed yet so when she pushes and nothing pushes back they start to flail and it shocks their system. This is something we learned in the physical therapy class and its a very important part of her development until she reaches her due date.

Something really exciting that happened today is Reagan got to hold Charli!! Oh my she was so excited. She had no idea they were going to let her. Although she was a little nervous at first, she did a great job. Charli was pretty sleepy so she tube fed and Reagan held her while it was going in.

I promise she wasn't as scared as she looks here!

This is one happy big sister.

 I also got a great picture of my 3 favorite people today. I'm definitely going to find a frame for this one.

After reading a comment from a friend on this blog we started reading a story to Charli before we leave. She said they read it to their little girl when she was in the pccu and it was such a great idea. We read her Goodnight Moon (even though its only 5 oclock she does go right to sleep) and it really gives us some comfort before we leave. So today Reagan got to read the story and she did a great job. It was such a sweet sight seeing her read to her little sister, she really loves her very much.

She looking at her sissy while she reads.
She already loves her so much!

And one last thing.. notice anything different about me today? Thats right, no oxygen!! Her vitals have been good and they did some blood gasses this morning and everything looked great so she passed her test and shouldn't have to go back on it. What a wonderful day it has been. I can't wait to see her tomorrow.

The only thing left to get rid of is my feeding tube!

Platelets and bottles

Well today wasn't as bad as I thought it would be. Mom and dad went to see Charli early in the morning and sent me some pictures and updates to keep me happy until I could get there. When we got there our little bean was all snuggled up and sleeping soundly. Unfortunately she had a blowout and her out fit had to be changed. This is the first time we have had to change her clothes and it is not easy with all the wires. It took both of us to do it and it still took a long time, so she was wide awake and unhappy by the time we were done.

In my new outfit that Mom and Dad put on me.

We talked to her nurse and she told us that she tried to give her a bottle this morning but she really wasn't interested. I called at 9 tonight and the nurse said the same thing. I don't know what we are going to do with her, doesn't she know she has to take a bottle before she can come home with us!? The good news is she will suck on her pacifier while she is getting a feeding from her tube. I guess baby steps will do for now ;) She now weighs 3lb 10oz!! She is turning into a regular chunk.

They also repeated her platelets this morning and they were down to 21,000. I'm really bummed about this because we were so encouraged by her numbers yesterday. They said they were going to repeat them at 8 tonight and 8 in the morning. When I called around 9 the lab work wasn't back yet so if I'm still up I'll call back around 10. We still don't know what is causing her platelets to drop but we hope we find out soon. Its so frustrating because if they don't know what is causing it they can't fix it. Well I called back and the new count is 42,000 so hopefully they are on there way back up!

I have the hiccups and I am very concerned about it!

Day 10

Not much has changed since yesterday. She is still doing good with her temperature checks. She was off her oxygen from 8 o'clock last night to 11 o'clock this morning. They said she did pretty good but started desating again and had to go back on the low flow. Apparently she's just on room air with the oxygen turned down, so she is really only needing a little assistance every now and then. 

Her feedings were increased to 40cc and both times we were there she kept all of it down without spitting up. They moved her feeding tube back to her nose, which is going to be great for trying the bottle feedings. And because I was sick of the nasty tape under her nose.  No bottle feedings today since she didn't seem interested. They say not to force it so we will wait until she's ready. One of the nurses said closer to 37 weeks they start wanting to suck. She would be 37 weeks next Wednesday so we will probably shoot for that.

Before and after getting that yucky tape off her nose! So glad to see that sweet little face again! 

Her platelets only dropped 9,000 in the last two days. This is a great improvement because they were dropping about 20,000 everyday. We are hoping her bone marrow is starting to kick in and make the platelets itself. Tonight she weighed 3lbs 8oz, so she lost a few grams but still the same weight as when she came out of her isolet

I know this blog is about Charli, but a lot of people have been asking how I'm doing. I'm pretty exhausted. Who would have thought running back and forth to the hospital would be more tiring than bringing a baby home?! Everyone keeps telling me to rest and I know I need to, but I know it will be impossible for me to stay home and not see my sweet baby girl for a whole day. We have already decided that we are only going once tomorrow since we have Reagan and she can't come on Saturdays. I am already seriously stressing about this. I know they say she sleeps most of the time and won't even notice, but somehow I feel like she will. I know it's silly but I feel like she needs her mom there to be comfortable. That's probably just my view because I'm only comfortable when i can see her and hold her. I have a feeling when she gets home she will be one spoiled little girl! 

Chilling with Dad

She was laughing at us. Actually she just tooted. 

Her cute outfit of the day.
She was a little mad after her diaper change. 

Not sure about this pacifier.

Update

I can't get my previous post to edit. Charli did not lose any weight like we thought she would. She is now 3lb 8.8oz! They are also trying her off of her oxygen again and as of 9 she has been doing great!

We passed with flying colors

I called first thing this morning to check and see if Charli passed her crib test and she did! I just couldn't wait until we got there to find out. Her temp checks were all good and she passed both of her glucose tests. So what that means is she stays in the crib and no more heel pricks! Yay! We are so proud our little girl is moving right along.

Apparently they tried to take her off her oxygen last night and she did pretty good for a while but her stats started dropping this morning so they put her back on a different kind. I'm not really sure I understand it but its low flow room air with only a half liter of oxygen. This is the last step before completely coming off, which they keep saying will be any time now. I just can't wait until that happens. I know she is tired of that thing being in her little nose. :-/

We also tried bottle feeding again today. I know its very hard for her with the tube in her mouth but they encourage us to keep trying. Sometimes she is interested and sometimes she isn't. Today was one of the days that she wasn't. And that's ok because she is all tuckered out from learning to keep herself warm. She did pretty good sucking on it but didn't get any of it down. It's a process and we just have to give her time, she is learning so much these days we can't expect it to all come at once! But it is nice to get to hold her and try the bottle feedings.

One of the perks of the new crib is that we can hold her pretty much anytime we are there and want to. Its so wonderful knowing I can snuggle with my sweet baby girl! And now me and dad don't have to take turns, we can both hold her in the same day!

In other news, Reagan is really enjoying all her goodies from the hospital!

What a day..

Today was one of those days that totally surprise you. I woke up and prayed that I would just make it through. I was discouraged after yesterday and I'm still so tired, and I just prayed for strength and courage to get through without crying. Well when we got to the hospital little miss was all bundled up and sleeping. She looked so sweet and peaceful. Then the nurse cam over and told us about her night. Apparently she had a party in her incubator because the nurse said her bundles were all pushed sideways, her gel packs were all over the place and her wires were all kinds of tangled. We got a real kick out of this because she is always so out of it that we can't believe that she would be able to do all that.

The rest of the morning was pretty uneventful except the blow out in Charli's diaper that I was fortunate enough to get to change. It took 3 diapers to get it right! The nurse, Patty, the same one who was there when Reagan came on Sunday, packed Reagan up a whole mess of stuff for her baby dolls, from leads to pacifiers and bottles and diapers. It was so sweet. The reason she gave her all this stuff is because we told her about the incubator Reagan made for Charli in her room:

Cutest thing ever right?

Our afternoon was so much more eventful. When we got there Miss Charli was wide awake, which is so rare. We did our temp and diaper duty then waited on the nurse to come over. When she did we were in for a big surprise. They decided to try and move Charli to a regular crib and discontinue her IV!! How exciting! Of course, we were told this was just a trial to see how she does. But her temperature has been staying up and her heat on her incubator has been going lower and lower, so we definitely think she was ready.

All this news and excitement got everyone distracted getting ready for the big move, and Charli was late getting her dinner. Well, we finally got to see a little bit of that temper we've been hearing so much about and let me tell you, the girl can get mad. There were a lot of things that had to be done before she could make the big move such as weighing her, picking out clothes(!), checking her glucose, and checking her temp again. While the nurse was doing all of this she gave me just a little milk in a small bottle to see if she would take it to knock the edge off of her hunger since we couldn't feed her until she had been weighed. She did so good sucking on her little bottle. Even though she didn't get much down, it was still really encouraging to see her sucking away like she knew exactly what she was doing! Daddy got to hold her while her bed was being made and she stayed so alert and wide awake during this whole process. It's so sweet to see her looking around with those little eyes.

She finally got weighed (up to 3lb 8oz today) and then got to put her first clothes on! They put her in her bed and snuggled her all up so she wouldn't be cold and able to pass her temperature test later. So to recap, today Charli:

• Took a bottle for the first time
• Wore clothes for the first time
• Moved out of the incubator to a real crib
• Had her IV discontinued 

We called to check on her at 9pm and she had passed two temp tests and one glucose test. She still has another glucose test to go so we will keep our fingers crossed. Her feedings are also up to 30cc, which is 1 whole ounce! They warned us to expect her to not gain any weight for a day or two as her body will be busy burning calories to keep herself warm. Today was such a great day, I hope I have more great news tomorrow.

1 week old today!

Charli is one week old today! Sometimes it feels like it couldn't have been a week already and other times it feels like months. Travis wasn't feeling well (we have to be cautious even with a sore throat or cough) and needed to get some stuff done around the house so mom brought me to the hospital today. I was in for a surprise when I got here. Charli's platelets have dropped again so she had to have another transfusion this morning. Unfortunately they couldn't use the same IV as her fluids so they had to start another one. In her head. Imagine my shock when I walked over to her incubator. Thankfully the nurse came over and explained that actually its the easiest place to start an IV on a baby, they just usually use it as a last resort because it shocks and upsets the parents. Obviously. She also told us that it's good for her because they don't mess with it when it's in their head, they are very superficial so it's easy to see if it starts bruising, and it gives her little hands and feet a break. So, although it may look very scary, it seems to be the best thing for her right now.

 

Holding Mimi's hand with her "Unicorn horn" =(

Mom got to come back with me while I changed her diaper and took her temp. Since she just had the transfusion and was very agitated the nurse did the feeding in the incubator. She was so sleepy she didn't take her pacifier or hardly move. They said she should be feeling much better by the time we get back at four. In the meantime, she got to hold Mimi's hand for a little while. My dad came up around 12:30 and got to spend a little time with her too. See they are already spoiling her :)

At the 4 o'clock visit Mimi got to hold Charli for the first time! She just kept saying "she's so small, she's so tiny." I think they both enjoyed it very much. I enjoyed getting to see my mom hold her granddaughter for the first time, its a special moment. Charli also put a little weight back on, back up to 3lb 6 oz. Oh I almost forgot, they increased her feedings again to 25cc and said if she kept tolerating the feedings well that her IV fluids should be discontinued in a few days. How awesome would it be to have at least one wire gone. She was also on room air flow only most of the day and seemed to be doing great so if she can keep that up the oxygen will come off too. I have to continually thank the Lord for answering prayers, maybe not in my time but His.  A sweet volunteer was walking around passing out candy bars and blessings for the day. They are these little folded up papers that have a blessing written on them and sometimes they say exactly what you need to hear. Mine said "Before you face the day, face the Father" . Isn't that the truth! I know the days seem to go pretty good when we pray for Charli first thing.

Napping with Mimi

Looking kind of sad today

Another good day

We, so far, have had another good day with Miss Charli. Like I said before we try to go to the 12 o'clock and 4 o'clock feeding/changings. These are usually best because it's way too hectic at the morning 8 o'clock because of shift change and the fact that the Dr. hasn't even seen Charli yet. Also, by the time we get there the nurse always has a morning report of how things are going.

Today she told us that Charli had a great morning and she was even sucking on her pacifier after her breakfast. So we did our normal routine of taking her temperature and changing her diaper. I love this time and getting to do those "normal" things for my baby. It really makes me feel like a mom :). Which, by the way, is the best feeling! The endocrinologist came by and looked at Charli and all her lab work and said that from her end everything looked ok. PTL. We would love to keep getting good news like this. Charli has had some labwork that has been up and down so it's great to see them leveling out. If I haven't mentioned it before we get to hold her once a day. Travis and I usually take turns every other day. He had a sore throat (no fever) so just to be cautious I got to hold her again today. What a blessing it is to have her in my arms. Those 10-15 minutes really make it all worth it. Although, if they would let me, I would sit there for hours. Moms, never take for granted holding your sweet babies in your arms!

Proud Momma

All sacked out after her big lunch!

We called this evening to check on her at 9pm as usual and they have increased her feedings to 21cc! We are a third of the way to our 2oz. She weighed 3lb 4 oz tonight so she lost a little bit but thats ok because I'm sure she will gain more tomorrow.

Family day!

Today was a wonderful day because Reagan finally got to meet her little sister Charli! Sunday is family day in the NICU. Reagan got to watch us change her diaper and take her temperature and help weigh her. She was so helpful and sweet and did everything we asked her to, even helped us calm her down after the dreaded diaper change. She loves her so much and was not even scared or nervous with all the beeps and wires!

As for Miss Charli, she is doing great. Still gaining weight and getting her milk intake increased. She is now up to 3lb 6.6oz- up 2oz from just yesterday! They called this evening and said they are increasing her intake to 17cc (from 13cc yesterday). The Dr. also said that she should come off the oxygen in 5-7 days. That would be a wonderful thing because they can move her feeding tube back to her nose so she can start sucking on her pacifier, which will get her well on her way to bottle feeding! We also got our first family photo today :)

Just a few more pictures until tomorrow:

Our sweet Charli Faith!

Well everyone knows I'm a terrible blogger but since I'll be spending a lot of time sitting at the hospital I'm hoping to update this twice a day to keep everyone updated on Charli and that way I won't forget anyone! Just an overview to catch everyone up:

• I was diagnosed with IUGR (IntraUterine Growth Restriction) on Monday August 13th and they informed me she wasnt growing and would not continue to grow and that we were doing a c-section the next day. 
• She was born on August 14th via c-section at 2:09pm weighing 3lbs 4oz and 17inches long.
• She went straight to the NICU where they did lots of tests on her.
• She had low platelets and needed a transfusion- they've been good ever since.
• She has a cyst in her brain which a pediatric neurosurgeon has looked at and has pretty much said he's not worried about it. She will have a follow up MRI when she is discharged from the hospital. 
• At one point they did a chest X-ray and said she may have a pneumothorax on her right lung but when they did a repeat that night it was not there. Praise the Lord!
• She weighed 3lb 4oz at birth. Weighed 3lb 2.6 oz Wednesday. 3lb 1.8oz on Thursday. 3lb 3oz Friday. And 3lb 4.6 oz today so she has passed her birth weight!
• She started out feeding through a feeding tube on Wednesday night and she got 5cc every four hours. On Friday, they changed it to 9cc every four hours. As of Saturday night, she is getting 13cc every four hours!

Everyone wants to know when she will get to come home. The answer to the big question is we don't know! We've asked a million people a million different ways and no one can tell us. There are many milestones that she has to hit before its possible. Here are a few:

• She has to be able to take a 2 oz bottle in 20 minutes without holding her breath- she is on a feeding tube right now and can not even start bottle feeding until her respirations go down and stay down below 60.
• She has to be at least 4 pounds. 
• She has to get all the sensors and monitors off. Which means, again, she has to keep the respirations below 60 and regulate her own temperature without a warmer. 
• She has to be able to suck on her pacifier during tube feedings without holding her breath before they will start bottle feedings.
• She has to pass the car seat challenge which means they put them in the car seat and monitor their breathing to make sure their head neck are strong enough to support them.

I may have forgotten some things but this is kind of an overview to catch everyone up on whats going on. Tomorrow I will start posting about her progress. Thank you everyone so much for your support and prayers. We love her so much and she really is the sweetest thing you ever saw, just in a very small package. ;)

P.S. I was discharged from the hospital on Friday night, so for now we are driving back and forth to the hospital daily. Travis is planning on returning to work on the 27th, which is good because I'm not able to drive until then!