Friday, April 29, 2011

A Busy Week


 Lauren was quite famous this week, receiving visitors from her greatest fans-Taylor and Peyton!  When I left Easter, I brought the BIG sisters back with me to Nashville for a few days.  It was so incredible to see the girls interact and love all over Lauren.  And I mean love, they must have given her a thousand kisses and she ate it up.  Not once did she get aggravated with the attention or added noise.


Other than that, Lauren continued with her physical and occupational therapy.  She is now wearing some thumb splints that we rotate every four hours to help get her thumb from closing inside her palm, making fists all the time.  This is only temporary and not a big deal.

Lauren is wearing a fancy new net hat (really it's super silly looking).  This is to help the swelling on her old shunt site that hasn't sealed off yet.  We may have to wear it the following week at home too:(

Nephrology  has been monitoring her case and has determined the best way to treat her blood pressure is with a small dose of medicine administered twice each day.  They will continue to keep up with her case and she should eventually outgrow this.

Her lab work was sent off early this morning.  Her CRP was only 8, which is really great.  When she was sick it was I believe in the 700s.  Her white blood cell count looked good too, she has always had an elevated level, even when she didn't have infection.  She is a little anemic still, so I will continue with some special vitamins that stink sooo bad.  She went off antibiotics this morning and will continue with fluids until Monday.


I am beginning the discharge stuff today and throughout the weekend and planning to meet with her case worker to get all her appointments and supplies ordered and made.  We are extremely excited and can barely stand to wait over the weekend.  She is doing and looking amazing!  I am so proud of my little fighter!

Tuesday, April 26, 2011

On the right track

Lauren had a great weekend!  She got a few x-rays of her old and new shunt sights, came back good.  The old sight is swollen, so they were just precautionary.  The surgeons came by today and said that we just need to keep her elevated as much as possible to help the fluid drain.

Her high blood pressure got her a few ultra sounds and dopplers of her heart and kidneys.  The heart looks great and her kidneys look OK too, just a little blurry (some medical term?).  Anyway, they are going to put her on a small dose of high blood pressure to reduce the stress on her organs.  They expect her to outgrow this sooner than later.  We will stay on top of monitoring her progress and blood pressure checks.

Thursday is Laurens' final day of antibiotics.  They will run some labs this day to get a baseline of her numbers, so if in the future they need to compare it to anything they have that data.  They are going to keep her for observation for a few days.  If all goes well, we have been given a discharge date of Monday.  Lauren will be exactly 8 weeks this day, and would rather do nothing but go home to celebrate with her family;)

Friday, April 22, 2011

Good Friday

Eph. 1:7 -- In him we have redemption through his blood, the forgiveness of sins, in accordance with the riches of God's grace.



 Lauren has been doing so very well.  She has been eating decently and sleeping enough.  I love it when she's awake because she is so alert and aware of her surroundings.  I really think she is close to giving me her first smile-maybe in the next week. 

She had fabulous visitors today.  Old friends Kristella, Dawna, and Gina came by the hospital and spoiled me with a bag full of treats-including See's Candy.  It was great getting to introduce Lauren to great people!

I plan on spending Easter at home with my other little ones, but will make sure that the Easter bunny swings by the NICU to make a special delivery for my precious princess.  I am hoping that we will be bringing her home next weekend sometime.  I'll continue to pray for her health so that we can be home-bound. 

May each of you have a blessed weekend surrounded by people that you love and rejoicing in Him.

Lauren's first trip in the hallway!

Tuesday, April 19, 2011

Tuesday April 19th

Well, Lauren has recovered from her surgery Friday.  On Saturday they closely monitored her pain to make sure she stayed comfortable.  She was upgraded to a little baby crib, so she is so much more accessible.  Without the external drain I am able to grab and hold Lauren whenever I want, which is INCREDIBLE!

My good friend Adrianna came for a visit Sunday and she got to hold Lauren a couple of times and feed her a bottle.  It was super cute to see her hold Lauren, she had been patiently waiting every week that she's visited, so it was well deserved.

Adrianna snuggling




During Sunday night and early Monday morning Lauren threw up her food and had a swollen abdomen.  So, they did an x-ray that indicated her bowel was enlarged.  However this is common with pain medicine.  To be on the safe side they held her feeds through this morning (28 hours) and ran some precautionary blood work.  Everything came back looking good except her CRP level was a bit elevated.  This is like an inflamatory indicator, but it could be raised because of her surgery Friday...  Her white blood cell count was low and nothing else indicated that there is a problem.  Lauren began eating without any issues and is doing really good.

I have to be honest I was really hesitant to write anything on the blog because I have been a bit anxious about her new shunt.  Unfortunately, my blood pressure got a little too high today with some symptoms.  After some resting and a trip to doc I feel better.  I have an appt. tomorrow morning with my OB to get double checked. 

Today was also the first day that Lauren got to wear any clothes.  She sported a cute pink gown with an arm hanging out due to IV, but she looked cute as ever and reminded me so much of being a new mom to Taylor and Peyton.   Amazing.

The rash on Lauren's face has gotten worse, but doctors still believe it to be an allergic reaction to something, more than likely that touched her face.  It could possibly be an imbalance from the antibiotics...  I just hope it gets better soon and isn't causing her any discomfort.

I wanted to end this post with a huge thanks to all my regular people who have been stepping up to help out with my family back home and making trips...  (Sabrina who has been great lately, my mom, Erica, Aunt Gina and nanny who have REALLY been wonderful). I also want to send thanks to the incredible nurses that have taken such amazing care of our little baby girl!

Friday, April 15, 2011

Friday April 15th

Lauren's surgery today went well.  She was a bit fussy post op. Trying to find that perfect dose of pain that doesn't create breathing problems, but enough to ease the pain can be tricky for the little babies.  However, Lauren has been sleeping for two hours and will likely wake up a very hungry girl.

The plan still remains to keep her on antibiotics for two additional weeks.  The idea has been flirted with possibly sending Lauren home on the IV antibiotics sometime next weekend.  This has its pros, but also its cons, so we will have to weigh the decision carefully.  I probably won't know anything for certain until close to Thursday or Friday. 

The only thing new is that Lauren has developed a rash on her face.  It was originally thought to have been an allergic reaction to a "blankie" that the night nurse let her have, which made facial contact.  Then, it looked like baby acne, but now has worsened and looks like a reaction of some sort.  It's nothing severe, but we are keeping an eye on it before they determine the best treatment for it.

Thanks for all the prayers that were sent out today for her surgery and recovery, we greatly appreciate your thoughtfulness and God's grace.

Wednesday, April 13, 2011

Wednesday April 13th

Today was a great day!  Lauren continues to get better and heal.  Her spinal fluid came back with great numbers.  So much that they are anticipating a surgery Friday to internalize a new shunt.  She received an extra stitch today again because the external one keeps leaking, but this seemed to do the trick for the most part.  Still leaking a little, but not much. 

I don't even know how to explain how alert Lauren is being.  She currently has polka-dot circles hanging from her bed top and taped to the sides of the bed that bedazzle her get up, but amaze her.  She loves it when you talk, or sing to her, and make silly noises.  She adores all of the attention and can get fussy if you don't entertain-sometimes I wonder if I am creating a monster;)  I am just thrilled with her progress and love her so very much!

We are looking forward to more good days!

Tuesday April 12th

snuggle time



I apologize for the delay of information- I have been very busy with school work.  This was my first official day without Lauren, spending the day at Tennessee Tech, so it was quite difficult.  I got back into Nashville around 10:30 and couldn't stand it, I just had to go see her!  I returned to Jaba the Hut (HUGE double chin)!  She has been eating 3-4 oz each feeding and gained back the 5 oz she lost last week.  Best thing ever touching her cute little cheeks and kissing her goodnight;)

They exubated Lauren on Saturday afternoon.  I didn't know who was happier, me or Lauren!  Her fistula has stayed put and we spoke with surgery team regarding her repair for her bottom and the future.  Things are looking good.  Once we get home, we will be there for a few weeks before we go back to hospital for her surgery (this will be the one that they make her new bottom).  Then, after that has healed completely (probably 2-3 months), She will have another surgery to close up her colostomy since she won't need it anymore.  Finally, hurray- cause she will be able to poop in a diaper!

Aside form her external shunt leaking occasionally, she is doing great overall.  Her body is still fighting the infection and infectious disease control has been swinging by daily to discuss her daily labs to determine when the new shunt should be internalized and placed back in.  Thinking about very late this week or early next week sometime.  No matter when though, she will still receive her 3 weeks of IV antibiotics.

I want to say thanks to Linda (nanny) and Gina (Aunt) for making the trip to visit with Lauren on Saturday-It was awesome!

Nanny feeding me a bottle-yum, yum!

Aunt Gina and Nanny

Friday, April 8, 2011

Fistula Friday

Great news, we got her mucous fistula in!!!  They had to sedate and intubate her during the process, and still is throughout today and night so that she remains calm and doesn't push it back out.  Also, if it does come out, they want be able to get to surgery in the morning and it would be easier on Lauren to already be intubated.  It's very different seeing her with this, but I know it's temporary and tomorrow evening she will look good again.

She took transfusion well and her hemo levels looked better, while her levels for the infection were lower-so good news all around.

Thursday, April 7, 2011

Happy ONE month Birthday Lauren!!!

My little one is one month old today, weighing 6 lbs 11oz, and 18" long:)

Unfortunately, Lauren got to celebrate by starting off in surgery this morning.   I guess overnight the spinal tap began to indicate that the infection was located in the shunt.  So, they have taken the shunt out and she is on an external one again.  This time for a longer period-probably 2-3 weeks, just to make sure that the infection completely heals.

Dr. Tulipan really wants to know WHY this has happened, as he said it's very rare for two shunts to have an infection so quickly and close together.  He has sent her shunt off for cultures, and has contacted infectionous disease control to examine her case and see if there is something going on that is causing some problems.  They will evaluate the way her body is responding with anitbiotics...  I feel extremely relieved that Tulipan is concerned and is wanting to make things great and right and not just saying "oh, sorry, hope it doesn't happen again..."  He really is genuinely concerned and wants the best outcome possible for Lauren.

I feel so incredibly lucky to have Vanderbilt in my backyard.  The NICU nurses and physicians are awesome and I have been treated so wonderfully.  Lauren has nurses that adore her and request to have her and check in on her all the time.  It's nice having a team backing her up and watching out for her well being.  I am just so thankful that God has placed these people in our lives.

On another note, Lauren's hemoglobin levels have been low for 3 weeks now.  It appeared though earlier that she was reticking (which means her body is making new red blood cells).  Unfortunately, her body now is not making new ones as fast as they would like, so she will get a blood transfusion sometime today or tonight to make her feel better.  She is Very pale and this will make her look and feel so much better.

As far as the mucous fistula, it still hasn't gone down in size.  We are continuing to treat it with the witch hazel pads and keeping a close eye.  When Lauren goes back into surgery to get her new shunt the ostomy surgeon, while she is sedated, will try again to push it back in. 

Lauren is receiving her blood transfusion as we speak, and is tolerating it well-yes!

I'll be sure to keep you all posted if anything else changes.

Wednesday, April 6, 2011

Busy Day Wednesday



 I stayed very late last night with Lauren.  About 10:00 surgery came by to see if the witch hazel (used to shrink) would work with the mucous fistula.  For a very long time they tried after soaking it to push it back into her abdomen, but had no success.  It was so tough for Lauren, but she endured and showed us all how strong she is.

This morning the surgeon came again and looked at the site and wanted to continue to soak the fistula in the witch hazel pads, and see if there is any shrinkage.  She really does not want to go back to surgery to fix-neither do I, but having  massive piece of your insides hanging out isn't good either.  The surgeon is even considering sending us home this way until she is ready for her next surgery to make her anus.  I feel VERY uncomfortable with this decision, and expressed my discomfort.  We will see, they said they would be back for a follow up.  This was all within my first 30 minutes this morning.

Then...Lauren begins running a temperature and is swollen at her shunt site at the base.  After many attempts to get her blood they sent it off revealing that she does have another infection somewhere.  Neuro came later this afternoon to tap her shunt for spinal fluid and realized after investigation that the abdominal end of the shunt's surgical incision is leaking fluid-yes folks-leaking!!!  After a CRAZY two hours of this and that and many orders Lauren received an ultra sound of the area, restitched the abdomen incision, has a VP shunt x-ray ordered, and surgery.  Yes, surgery tomorrow. AHHHHHH!  They need to get in there and figure out what is going on.  After looking at images, seeing if spinal fluid is where infection is, and peeking around they will determine what they will do to shunt.  Since this is an add on surgery it will probably be tomorrow afternoon sometime and I won't know what they are doing until after, probably. 

I feel quite frustrated right now.  I want Lauren to feel absolutely no pain, be healed, and ready to go home!  Any mom would want that for their baby. I know that I have to pray for patience and understanding.  I need to trust God to take care of her and know that He is in control. 

On the good side, Lauren is peeing in a diaper now!!!  Yeah for my little girl!  We will cath here and there to see how much she is emptying on her own, but so far so good.  This is wonderful to hear!

I'll be sure to keep this posted with her progress tomorrow.  Also, sorry for ranting-I needed to vent.  Thank you for all the prayers!  We have the best support system and are so fortunate to have such wonderful family and friends.  Love ya all!

Tuesday, April 5, 2011

Tuesday April 5th

I guess overnight Lauren's mucous fistula came out more. They came by to try something and it didn't work so they are contacting the surgeon for further input.  It really looks like we will be heading back to surgery to fix...  I'll be sure to keep you posted.  More to follow later.

***When the osotmy was performed the colon (end of intestinal area) was cut in half.  One end was pulled through to surface of skin through an incision and made a stoma (looks like a balloon end tied and turned inside out).  This is where her bowel movements are made.  About an inch over brought to the surface of the skin through a small incision is the other half of the intestine, called the mucous fistula.  Lauren's was an 1/8 the size of her stoma.  Now, it's 8 times the size of her stoma.  The fistula doesn't do anything.  It's just brought to the surface of the skin, so that when they make the repair they can quickly find both ends to sew back together and place back inside body.***

Urology came late yesterday and said that she did NOT have reflux into her kidneys, which is a very good thing.  However on her first day, she had a swollen kidney.  So, they came today to do an ultra sound of her kidneys to see if there still was any swelling.  It was quite interesting getting the ultra sound images with all of her bandages and dressings...but got it done!  We are still waiting to hear from urology about the images.   His plan though, once the images come back is to take her foley out and begin intermittent catheters every 4-6 hours for a few days to see how much she can empty her bladder on her own.  then, from there come up with a urinary plan for home.

Unfortunately, Lauren's mucous fistula has protruded QUITE a bit more-it's very large.   They are trying some home remedies first before they think about surgery...  First was sugar-didn't work.  Now we are off to witch hazel.  We are waiting for surgeons to come by and administer this method.  If that doesn't work, I am really not sure what will be next.

I got to hold Lauren again today!!!!

Moody Monday

Today was a very long strange day.  Lauren was scheduled for her VCUG at 11:00.  By the time they were ready we went in at noon.  When we got back they pulled her pain drip.  Lauren was extremely fussy and gassy...very hard to settle down, which is unlike her, so they pushed some pain meds into her.  Later, I went to change her ostomy bag and saw that her mucus fistula had popped out externally-about four times bigger.  It looked like she had two stomas.  So, no wonder she was uncomfortable:(  I think all of the bearing down from the tummy may have contributed. 

Anyway Lauren has been taking vitamins via her bottle for the last four or five days, which she spits up everytime.  I had mentioned that I thought the vitamins were making her sick to her stomach the nurse wasn't sure.  Then early this morning (Tuesday now) the nurse told me that the vitamins can cause an upset stomach ache...ahhh!  So, in rounds today we will mention it and see if we can figure something out.

So, xray came by to see her stomach from the fistula thing and discovered a massive air bubble in her tummy.  They were trying to suck it out and she threw up everything in her tummy, but was suddenly her perfect little sweet self.  She felt so much better after that.

However the BIGGEST NEWS for the day was that I got to hold Lauren completely in my arms without the hospital pillow for the first time!  Such an amazing bonding moment that I will always remember.  It just suddenly hit me that my baby girl was four weeks old and I got to snuggle right up to her:)  I held on for an hour, then back to the bed.  By far the highlight of it all,  I am so incredibly blessed to have such a strong and beautiful daughter to take care of. 

Sunday, April 3, 2011

Weekend Report

Sleepy head
 Well, if you peaked at Lauren right now, you would never know that she had surgery.  She looks wonderful and plump:)  She has been sleeping quite a bit due to the pain meds, but was up a while for me this afternoon.

It appears the reason she was in so much distress after surgery was due to a mis-dosing error from somewhere on the surgical floor.  She was only receiving trace amounts of pain med when she awoke from anesthesia.  So, when little Lauren woke up, she could feel all that pain and discomfort from the surgery and it took a while for the medicine to "catch up."  I HATE that this happened, but at least I understand her reaction and can now be cognizant for future procedures.

Otherwise, we are so very excited for urology scans and news tomorrow!

Lauren also had lots of visitors today:  Ms. Lisa, Aunt Mindy, and Kourtney-Thank you!!!!!

Aunt Mindy feeding me my bottle

Aunt Mindy and her best friend Kourtney

Meeting Lauren for the first time:)
 PS Lauren may be born to be a rock star

Friday, April 1, 2011

Shunt Revision

Well, Lauren was obviously cranky this morning because she was hungry from her NPO after midnight.  Then, about 30 minutes before surgery she was calm and cute and was getting the nurses down in holding oooing and awwing.

They were going to try and place shunt on right side again, however ended up doing the left side and having to cross her chest and abdomen to the right side for the drain tube, so that it wouldn't interfere with her ostomy (which is on left side).

Poor little Lauren had an extremely difficult recovery and is now sleeping after two hours...  This was by far the most difficult thing I have had to witness and be a part of through this stay.  I felt so helpless...  Anyway, I am hoping that when she wakes up the pain meds will be in full effect and she will feel, look, and move much better!


One person I haven't thanked yet on this blog is God.  I feel silly cause He's the one that I pray and thank each and every day to, and owe all of her wonderful strength to.  It's amazing how strong our faith can become and at how trusting God to bless and watch over Lauren has made me feel so much more at peace with her journey.  I truly am thankful for our faith and all of those that have spiritually supported us!  

Update: Lauren did sleep in and out for a few hours waking up to cry this evening.   They doubled her pain meds and are giving her an additional dose every couple of hours as needed since she is really upset.  She has always had such a wonderful temperament, it's difficult to see that my touch or voice won't even console her.   After care checks at 8:00, I was able to feed her a small amount of pedialite.  Hopefully, she will graduate to milk throughout the night or early morning and her pain will subside.