NICU - Day 39

Date: December 31st

Gestational Age: 33 weeks 5 days

Weight: 1715 grams or about 3 lbs 12.5 oz

Madelyn had more excitement today. I was here for much of the night/morning but left to go hang out with Renae and Kate for a few hours when I got a call that Maddie was going to have a test done to see if her lower intestines are working. They put a barium mixture into her lower section of intestines and took x-ray video of how things moved. She got to go on her first ride outside of the NICU, all the way to radiology with her nurse. They were backed up down there and Maddie was very patient with the process. It was a success too as she pooped all over the table. Apparently the list of people wanting to take her home with them has grown as the radiology techs really thought she was adorable.

Ready to go to radiology!

As a result of this test, they will try, in a few days, taking output from her upper intestines and putting it into her lower intestines to see if she will absorb more of it. It was also decided that she will stay on just breast milk for now. All of this is to prepare her for when she will be completely hooked back up inside. Also to help all of her intestines grow. "Grow, baby, grow!" 

This afternoon, I fell asleep in Maddie's room and she managed to have four alarms all going off at once. She was fine, it was just that her feeding was done, her fluids machine's battery was dying, she pulled off a heart monitor sticker and had kicked off her oxygen monitor. She apparently thought it was the perfect time to do this as her nurse had gone to print off pictures of her from this afternoon. Also, she probably wanted to wake me to let me know that I had fallen asleep while pumping and had spilled milk all over myself. Maddie managed to pull off all her heart monitor stickers at some point this evening. 

Maddie was super prepared to ring in the new year. She's hoping for a lot more socializing now that she is getting bigger. Also, starting to get dressed. Maddie has been becoming more and more awake each day and is constantly seeking new things to look at.

She's high fashion

NICU - Day 38

Date: December 30th
Gestational Age: 33 weeks 4 days

Weight: 1685 grams

It was snowing this afternoon!

Today was another big day for Madelyn. They took out her nasal cannula and are letting her handle her own breathing for now. She struggled at times with keeping her oxygen in the 90s but was able to get it back up on her own each time that it dropped. She also had a heart rate drop but it wasn't long enough to count it as an official spell. I was surprised when I talked to Maddie's nurse this afternoon about them removing the cannula despite her recent spells but her nurse explained that there are two reasons for spells, respiratory and premature brain, and Maddie's falls under the premature brain. It is very likely she will need her cannula back at some point, maybe soon but maybe not until she starts doing bottle feeding.

I was able to hold her on my chest again today and she did well for most of an hour and a half. She struggled at the beginning and end with maintaining her oxygen saturation, but was good for over an hour in the middle. I read more of "The Last Night of the Yankee Dynasty" to her and she slept. Then, when I finished the chapter, I fell asleep too. It is so amazing to be able to hold her all the time.

There hasn't been a decision made regarding her nutrition yet. The surgeons, primary and gastro doctors are all conversing and deciding on a best route of action. At this point, she is not getting a lot of nutrition from her milk. There are varying opinions with some wanting to mix my milk with formula that is already partially broken down for her and others who believe that she should just get a constant drip of milk to help her digest better. We're hoping for more answers and possibly a final decision on Tuesday.

A weird thing happened on my way to see the reproductive endocrinologist today. All of the doors from Ramp 4 all the way to the Women's Clinic had some sort of problem causing them to lock and no one could get in or out. It made me late to my appointment. During the appointment, we talked about the shape of my uterus, which was a concern when Maddie was delivered because it was partially bowed out where her placenta attached. The doctor is going to do an ultrasound in a week and a half to get a better idea of the shape, but does not believe that I will likely have a repeat of my pregnancy with Madelyn if I choose to (or am able to) have more children. She put the chances of another bad implantation in the corner at less than .03%. That made me feel really good. I am hoping for a good outcome from the ultrasound on the 10th of January. They also weighed me while I was at the doctor's office and I have lost another 12 lbs since I had Maddie! I am down at least 16 pounds since I got pregnant back in May. Pretty awesome news after all the drama and stress of the last year.

As some of you know, my only reason to ever go on Twitter is an account called "Honest Toddler". I've now found that this toddler has a facebook page as well, so I doubt anyone will see me on Twitter for awhile. On the bright side, as a result of not sleeping anymore (let's call it "Motherizing" myself in preparation for the rest of my life not sleeping since I now have a child to worry about) and discovering said facebook page, I was able to find a good description of what it feels like to have yeast in the breast. Thanks to Honest Toddler's family's Christmas card written by her mother for describing my current situation so clearly.

"My sweet infant and I are passing a very powerful yeast infection back and forth between each other via our nursing relationship. During this time of year I’d like to think that our strain of yeast goes all the way back to the baby Jesus and Mary. Maybe the holy mother also felt like little yeasty soldiers were entering her nipples and stabbing her breasts from the inside when she fed our savior. If you’re a bread baker feel free to come by the house with a petri dish for some leavening as I’m sure this stuff could raise a loaf." 

This made me laugh out loud because I feel so similarly. It's like she gets me! Honest Toddler's tweets were what kept Renae, Mom and I entertained all summer at my very scary doctor's appointments and helped me forget that they just kept repeating that I would not survive till Christmas. Now I feel like Honest Toddler will be an important part of my life forever.

Since I am not likely to get my New Year Eve post up before 2014 starts, I want to wish all of you a wonderful (and safe) New Year! I, for one, am hoping for a smoother 2014. :-)

NICU - Day 37

Date: December 29th
Gestational Age: 33 weeks 3 days
Weight: 1645 grams

Even though her belly looks big here, it is just
because she was puffing out her tummy and chest at
regular intervals while I was shooting her daily photo.
It immediately deflated when I stopped taking pictures.

Madelyn had visitors again today! Grandma Ann came down this morning to visit and Aunt Renae this afternoon.

Maddie also learned a new trick. If she arches her back and wiggles about, she can move her entire body down to the bottom of her bed and stick her feet over the blanket "donut" that holds her in the center of her isolette. When she does this, it messes with the machines ability to monitor her as well, setting off alarms and causing her nurse to come and visit. This is her new way of seeking attention I think. She did it a couple of times this afternoon when I was spending time with Kate.

Maddie also winked at me. I know you're going to think that sounds crazy, but she moves one cheek up and closes that eye and then immediately relaxes it again, opening her eye. If that's not a wink, I don't know what is. She was also smiling at that time, so it made the experience that much funnier. Also, she did this twice while Dan was looking something up on the iPad, so I don't even have anyone to back up the experience.

Maddie got a new sweater and hat with a "M" on it, but I failed to get a picture of it before Dan took it out to the car. She got this from our cousin Kristin and it is absolutely adorable. I can't wait until she is big enough to wear it.

Today we learned about the process of choosing a primary nursing team. Apparently, they encourage families that will be in the NICU long-term and have serious conditions to choose nurses that they would prefer to be on their case. This helps the families feel comfortable with the nurses caring for their child and decreases the amount of times I have to tell them about her case from what I understand. We chose a few nurses from Bay 2/3 that we have really liked and it turned out that two of the nurses had already chosen to be primaries for Maddie! That was a nice feeling to find out that they like Maddie just as much as we like them. A nurse that Maddie had several days when she was in Bay 3 way back in the beginning stopped by to say hi. It is nice seeing familiar faces that we worked with so long ago (if you can consider a month ago a long time ago).

This evening, Maddie and I did kangaroo care. We had only done it once before (the day before her NEC diagnosis), so it made me a little nervous, especially with all the work she's had done on her belly. It went very well and we both fell asleep. That was until Maddie put her chin to her chest and set off the oxygen saturation alarm. She was fine however. Just needed some extra attention. Madelyn was super awake today and did a better job than normal with following us with her eyes. She is still struggling with residual, but the doctors are not concerned about that.

NICU - Day 36

Date: December 28th
Gestational Age: 33 weeks 2 days
Weight: 1620 grams

Today Madelyn had two spells, one at 3 am and another at 10 am. For those that are not familiar with these, a "spell" is where her heart rate drops as well as her oxygen saturation. Usually when this happens, the alarms go off and someone (a nurse or myself usually) has to massage or rub her to get her numbers to return to normal. This is caused by her premature brain "forgetting" to breathe. It is also increased by her congenital heart disorder, patent ductus arteriosus (PDA). Madelyn has been doing well with not having spells for awhile, but this could be related to her moving down on her cannula yesterday. I think sometimes we fail to realize that she is still almost 7 weeks premature at this point. Maddie shouldn't even have to be thinking about breathing yet and she won't be perfect. I also had sort of put her PDA in the back of my mind until her spells today because I've been so focused on her intestines. Maddie was doing well for the entirety that Dan and I were at the hospital today.


The nurse practitioner came by Madelyn's room today and informed me that the surgical team would like to start mixing Neocate into her breast milk to help her digest better. Much of her output from her ostomy has looked like breast milk that is not very well digested. I am concerned about this because of her getting NEC shortly after starting the increased calorie mix with the breast milk. Mom and I will be talking to the doctors on rounds tomorrow morning. On the positive side, there was one feeding today where Maddie only had a 1 mL residual! That's a big improvement over previous feedings. She also had one where it was 2.8 mLs, so it didn't exactly show an overall improvement.

The biggest news of the day is that when I changed Maddie's diaper around 2 pm today, something looked different and it took me a second to realize it was because her umbilical cord stump had fallen off and was sitting on her incision site. I congratulated Maddie on a job well done for removing it (her mother may have poked at it yesterday to see how well it was "stuck" there). It looked really sort of nasty, so in typical me-fashion, I took a picture and sent it to people. Why should I be the only one to enjoy the disgusting-ness of it?

We held Maddie again tonight during her 6 pm feeding. Dan is doing so well learning how to hold her and feeling more at ease with holding her. We have completely different jobs as parents right now. His job is to make sure she is getting enough intellectual stimulation through music and literature. My job is to handle all the medical information, keep track of things, provide nutrition, as well as instill in her a love of the Yankees. Actually, Dan is not overly supportive of the Yankees part, but I think part of him has just accepted that she will need to be a Yankees fan. We both are awesome at the love and cuddling part.

NICU - Day 35

Date: December 27th
Gestational Age: 33 weeks 1 day

Weight: 1600 grams

Madelyn had many visitors today, Grandpa Wayne, Grandma Ann, Grandma Deb, Great Grandpa Louie and Great Grandma Carol. They got to see Maddie open her eyes and smile.

This is one of my favorite pictures of Maddie
(despite the creepy hand thing). She looks so sweet! 

Today they changed her feeds to 6 mLs every 4 hours. She's still having residuals but they are similar to the last few days'. Also, the skin person reported that the skin around her ostomy is looking improved, so they will only need to change the bag daily for a couple more days. She also moved from the RAM cannula to a regular nasal cannula today. She had a couple of times when her oxygen started to drop into the low 80s or high 70s but she was able to recover quickly. She also had one time where her heart rate dropped, but it was right after her nurse had come in about the oxygen dropping and had said to Maddie, "Alright, enough of this funny business. I won't stand for it," so I think the heart rate drop was just a scene of defiance from Maddie. She brought her heart rate right back up, so the nurse didn't seem concerned. We also saw the doctor that was her staff doctor during the time that she was getting her surgeries and he seemed pleased with her progress. Her current staff doctor reports that he feels she is doing well despite the residuals.

I finally took a picture of all the hats my mom has
made for Maddie (so far). What a talented lady!

Tonight the nurse weighed Maddie while we were there. She weighed in at 1620 grams! That is up another 20 from yesterday. She had gained 115 grams in the last 3 days. I'm not sure that it is real weight, but the fact it has appeared to go up every day for the last few days is a great sign. I can't help but think that she is gaining weight due to hearing the surgeons say that she needs to be at least 2000 grams for them to reconnect her intestines. I tried to tell her today that it doesn't guarantee that she will be hooked up when she hits exactly 2000 grams, but who knows if she was listening.

Dan arrived tonight and played some Christmas music for Maddie. She seems to like it and even started to wake up a little when we were about to leave. I'll tell you what she didn't like: when I was putting lotion on her dry skin. She started to get irritated very easily, but I wanted to make sure that her skin is well protected.

NICU - Day 34

Date: December 26th
Gestational Age: 33 weeks

Weight: 1545 grams

Madelyn finally got her ostomy bag put on today. They had just been covering the site with gauze and as a result she had a big red spot (burn) around her site. The skin person came and looked at it this morning and then they put on the bag. I spoke to the doctor today and he said that he is not concerned about the size of her residuals (they've been between 2 and 4 mLs) that they have been measuring before her feedings the last couple days. He said he will only be concerned if they start to really stack up.

Maddie is not ready to give up her Santa hat quite yet.

I also met the occupational therapist this morning. She talked to me about some things that Dan and I can be doing including going to both sides of her isolette to talk to her, switching up which arms we hold her in, and starting to do chest-to-chest holds. That way she will get used to moving her head and neck. Also, continuing to give her loving touch so that it isn't just medical touch that she is getting.

Tonight, the nurse told me that Maddie also had what appears to be some dumping in her ostomy bag. We reminded her to keep working on her ability to absorb her food instead of just letting it slip right through. I was able to hold her again tonight but not as long as I wanted because my back has begun to hurt and as little as she weighs, it was starting to bother me more. The pain is right in the center of my back between my shoulder blades, so it makes it impossible for me to rub it myself.

A Christmas Update from Madelyn

Dear Family, Friends and People Who Read This Blog,

Merry Christmas!

Since this is my very first one of these, I am not really sure what to expect. Last night my parents left for awhile and when they came back, my mom was wearing clothes that showed her legs (she called this a dress) and my dad looked really spiffy in an outfit that had matching pants and coat (a suit maybe?). Mommy was also singing songs about joy and silence. I hope that the silence song wasn't because I've started to cry more. They called this place they went to "church". I don't know what that is, but I will be very pleased if it means that I will be able to dress up in an outfit that shows my legs next year for this holiday. I will look very cute, trust me.

As a preparation for this holiday, my mom bought me pajamas. She says that's what she got as a kid for Christmas and so when she bought me pajamas for next Christmas, she found that they had matching doll pajamas which are apparently my size now. (So really, she got me pajamas for two Christmases for the price of one. A bargain dealer apparently.) It's like she thinks I am her living doll that she can dress up however she wants (the fashion show last night went a little longer than I wanted it to). I do look really nice in them though. Also, please check out my reindeer hat Grandma Ann made me. It is a little too big, but does its job. My head stayed warm while I cuddled with my parents.

My polar bear pjs

My cupcake pjs

Someone also left leggings and a tutu in my room this week. Mommy put the tutu on me but I had stuff on my legs so she tried to put the leggings on my arms and they were too small. Bet you can't believe anything is too small for me, can you?

Me in my beautiful tutu. 

Apparently, Aunt Renae thought it would be "awesome" if my mother put a giant bow on me for Christmas. I'm not so sure about this. Not that my concern over a big bow being put on me stopped my mom... I tried to wiggle and push it off me but she just kept putting it back on until she could get the pictures she wanted.

Giant bow. At least it matches my hat.

Now, I heard about this Santa fellow. He apparently comes to my house and brings me presents. How do I make him my best friend? I don't need much right now, just hugs and kisses and maybe some intestines. Does he provide internal organs? That's really my focus right now, growing more of those intestine things that my mom keeps talking about.

My mom says she failed to send out a Christmas card this year (and every previous year). She really planned on sending one out this year, but then I needed to be born three months early and have had a busy 33 days. She asked that I include her Christmas update in my blog:

• Mommy and Daddy are still at the same jobs as last year (although Mommy has been on a break with me for the last two months). Mommy became a caseworker in April at her job and likes it a lot. She gets to travel a lot (except when she couldn't because of doctor's orders). She keeps saying that she misses her "big kids". 
• Mommy got pregnant with me and then went to the doctor a lot this year before spending 3 1/2 weeks in the hospital and then having her BEST. DAY. EVER. (aka the day I came into this world). 
• Since then she does a lot of cuddling and kissing me and trying to produce food for me which she makes Daddy take home for the freezer and he says things like, "How are we going to fit all this in the freezer?" 
• Daddy mostly enjoys reading and playing me music and looks kind of scared when he takes care of me by changing my diaper or helping with my bath. He also asks Mommy a lot of questions about what the numbers on the machines and all this beeping mean. Daddy also comes up with nicknames for me every day. Always new ones and some of them are not so nice. Nickname like "Butter Turkey" and "Panda-lyn" and lots of others that I can't recall. He does not call me by my name though and Mommy says to get used to it because he hasn't called her by her name since before they were married.
• The biggest thing that happened this year is that they now have me to take care of and truthfully, if Mommy fails to send out a card next year it is because she is taking care of me and forgot again. I plan to be making her very very busy a year from now by getting into things and needing a lot of cuddling. 

I hope everyone has a very Merry Christmas and we (me, Mommy and Daddy) are so grateful for all the love and prayers that we have received. We couldn't have gotten this far without all of you!

Love, 

Madelyn

NICU - Day 33

Date: December 25th - Merry Christmas!
Gestational Age: 32 weeks 6 days

Weight: 1505 grams

Madelyn had a very good Christmas! She got lots of hugs and kisses and got to cuddle with Mommy and Daddy again. There is nothing better than holding her close. She also got several gifts from the Rosauer side of the family. We aren't having Christmas with Dan's family until January. 

Scrapbook page from the nurses

Looking so pretty with her Santa hat and bow on

Cuddling with Daddy

Wearing the bracelet that her cousin Kate made for her

NICU - Day 32

Date: December 24th (Christmas Eve!)
Gestational Age: 32 weeks 5 days

Weight: 1500 grams

Happy Christmas Eve everyone!

Madelyn had a good night's sleep but struggled again this morning with some dumping out of her ostomy. I also was able to get a good night's sleep and wake up at a decent time this morning and get a lot accomplished between pumping including wrapping Christmas gifts and doing laundry.

One of the many gifts from the McLeviges
for Maddie's first Christmas!

Madelyn's feedings are still 8 mLs every 6 hours but are now on the pump over a two hour period to see if she can digest it better and avoid residuals and dumping. She seems to be crying more today and super wiggly. The nurse says she seems to do this right before feedings or when they first start so it might be related to her being hungry (waking herself for feedings is #4 on her goals for discharge). This kind of makes sense because she's been going to town on her pacifier today.

Our first family Christmas Eve picture

Dan and I went to church tonight and came back to the hospital to cuddle with Maddie for awhile. She slept right through it.

We are amazed at how great the NICU has been this past week or two. It seems there is a gift every day from a former family or Child Life or anonymous donations. Tonight Maddie got this book from a previous NICU family. We, of course, read it as a family. Dan did the actually reading and I did the color commentary.

NICU - Day 31

Date: December 23rd
Gestational Age: 32 weeks 4 days

I get a lot of people asking about Madelyn's lungs. The nurses have been listening to them and they sound better (don't sound collapsed) and her labs look good but they are no longer doing daily x-rays. She spends most of her day on her back, so hopefully both lungs will stay good. Due to laying on her back so much, they gave her a gel type pillow thing. Mom says it is to avoid a flat spot but with as much as she lays on it, I don't think a flat spot will be avoided. We love her no matter the flatness of the back of her head.

Maddie had a good day today. She had some dumping overnight from her ostomy, so they have set her feedings on a pump. That seemed to help today. She had some residual at her evening feeding (3.2 ccs) but it only delayed her feeding by a few minutes. They just subtracted that amount from the feeding.

Maddie had her eyes checked today. She was at a Zone 2 (meaning her retinal blood vessels still need to do some growing) and Stage 0 (meaning the vessels are growing well). Or at least that's how I understand it. Do we have any eye doctors who could explain this better? They will check her eyes again in 2 weeks. 

I finally went to find the lactation consultants about my breast pain I have been having. They told me to read a website. They also were very discouraging. I cried. Then I went to Labor & Delivery and saw the on-call doctor who suspects I have yeast in my milk ducts. More medications and needing to sterilize all my equipment every time I pump. Lucky me. 

NICU - Day 30

Date: December 22nd
Gestational Age: 32 weeks 3 days

Today Madelyn is a whole month old! This has been the craziest month of my life. I can't believe how much has happened in the last 30 days. When she was weighed last night, she weighed 1495 grams (about 3 lbs 4.7 oz). She continues to go up and down on her weight daily, but with starting to maintain her own weight, I think that is pretty normal. Her feedings today went up to 8 mLs every 6 hours. She is still doing well with her residuals in her stomach after feedings and her drainage from her ostomy is continuing to grow. Dan saw her ostomy for the first time tonight and I thought he was going to faint. He didn't realize that he would actually be seeing part of her intestines sticking out.

Holding Daddy's hand.

Madelyn also got her first sponge bath from Mommy and Daddy. She gets a sponge bath about every 3 days, but we had not been present for one because they tend to do them on the night shift. Maddie did a good job maintaining her temperature during bath time but did not enjoy it a whole lot and started to cry.

NICU - Day 29

Date: December 21st
Gestational Age: 32 weeks 2 days

Madelyn moved up on her feedings today. She is now getting 6 mLs every 6 hours. She was wide awake today when I went to take pictures. She kept looking at the ceiling though, I'm not sure why.

"Look! I can blow bubbles!"

Wide awake and ready to party!!!

Today was Maddie's cousin's birthday, so we made a sign to wish him a happy 2nd birthday!

I actually went to the party and Matt sent gifts for Maddie with me. The first one is just funny and the second one means that we can wear our matching Jeter jerseys. Although by the time this one fits her, he will likely be retired!

Boo Red Sox!

Go Jeter!

Some people have wondered about how Maddie can use a pacifier when she is so small. Here is a comparison of a pacifier that Matt and Jill got for Madelyn for a 3 month old (left) compared to the pacifier that she uses at the hospital. Big difference. 

NICU - Day 28

Date: December 20th (DADDY'S BIRTHDAY!!!)
Gestational Age: 32 weeks 1 day

Today was a big day for Maddie! She moved into an isolette overnight and apparently learned to write...

Such wonderful writing from a 28 day old child
(Maybe there was some help from her nurse, Erin?)

The isolette will help her to learn to control her own body temperature. She did fairly well with this today. She also started drinking milk again this afternoon. Only 3 mLs every 8 hours but it is a start! We are back where we started and hoping that feedings go much better this time. They are using gravity to move it into her stomach like before.

This is what Maddie's new bed looks like. 

Maddie had a visit from Grandma Ann this afternoon and they had a good chat with each other.

She is so cuddly! 

Today was Dan's birthday (he claims that he is turning 30 again) and Maddie gave him the gift of cuddling. He got to hold her for the very first time! He was super nervous but did great. She slept most of the time, but occasionally peeked out at him.

Maddie also made him a sign that is covered in Teenage Mutant Ninja Turtle stickers. Next to Maddie's name it says "Ninja in Training," which seems pretty fitting.

NICU - Day 27

Date: December 19th
Gestational Age: 32 weeks

I measured Maddie today (she was already laying sprawled out) and she is 16 inches long! She also weighs 3 lbs 4 oz as of tonight. That means she has grown an inch and a half since birth. She and I also cuddled for two and a half hours this afternoon. I read to her about the Yankees and then we took a nap together. I found out why Maddie sleeps most of the day, she apparently stays up most of the night. Her nurse for the last two nights has been Erin and she said that Maddie was awake every time she came in to do her cares last night. I'm going to claim that she gets that from her father, but likely she inherited from us both as I have not been able to fall asleep until really late for the last couple weeks.

"Thumbs up for this awesome hat!"

"Peek-a-boo!"