Rollercoaster Part 2

So during the past 24 hours we've been back and forth with learning what will happen next with Gianna. I'll spare you the details of the ups and downs - but as things stand right now, Gianna may be discharged home tomorrow (!) for the weekend and then she'll come back Monday for an ultrasound and may be admitted again then if her CSF is increasing in her brain. The neurosurgeon feels that a shunt is probably inevitable, but wants to wait as long as possible so that she doesn't have to have another surgery involving her head so soon after the first one. Also he would like to avoid doing the shunt if at all possible - he wants to be absolutely sure she needs it, because once it is done, she will have to have it for life. Other than the news that we may get to take her home tomorrow for a few days, the other great news is she had a hearing test this morning and both ears are ok! Next will be an opthalmology test. Although the majority of her occipital lobe was left intact by the surgery, we will not know for some time whether her brain is able to process images for actual "sight" even if everything is structurally normal with the eyes themselves. There are so many questions with Gianna that only time will tell us the answers.
So I'm spending this afternoon holding G & trying to find more information on two of her other diagnoses- Chiari Malformation & syrnix/hydrosyringomyelia (yes, my spell checker is going crazy right now!). We knew about the encephalocele since my 20 week ultrasound, so we've read about everything out there, but these are new ones for us after her MRI taken the day she was born.

On the Rollercoaster

First baby doll...a gift from Savannah!

When you have a baby in the NICU they give the parents a pamphlet that describes the policies, what to expect, etc. I remember reading a paragraph about the "NICU Rollercoaster" - in other words the emotional rollercoaster of ups and downs that every parent experiences during this time.  Yesterday I saw exactly what they meant! 

First time I got to dress her since surgery!

Holding Matt's hand last night

Neurosurgery Update

Dr Pittman just came to see me in the Ronald McDonald room (it's shift change in the NICU so parents/visitors have to leave). He said G looks good but he is concerned that her fontanelle (the soft spot on top of her head) is already full of fluid. He's going to get an ultrasound of her today or tomorrow to check the fluid level inside her head and if it is filling up rapidly, he may do the shunt as soon as Friday. If it is filling more slowly, he may wait and keep watching it and may do it next week. Unfortunately I think we need to start assuming that the shunt is coming at some point. I know it will help her if she needs it, but I just hate to see her have to go through another surgery so soon.

First time holding her without the encephalocele!

Day After Surgery

The nurses suprised us with this big purple bow on her head to celebrate her breathing on her own again!

I finally got to go home late last night, which was definitely a time of mixed feelings. I hadn't seen Angelo in almost 6 days, and had only seen D for a few minutes at the hospital. Angelo woke up when I got home and just to hear him say "Mommy!!" completely made my day. But leaving Gianna at the hospital feels like leaving part of my heart behind. The boys had welcome home signs and balloons for me - so sweet! And I swear Angelo looked a year older... I'm used to him being our "baby", but now compared to Gianna he seems huge! Ron, Robbie & Cara have been taking care of the house & boys for us so we can concentrate on G - we're so grateful to them, my parents, and ALL of the support and kind messages from family & friends.
Matt and I got back to the hospital this morning in time for the Drs. rounds. G slept peacefully last night and is not even on pain medicine this morning! It is unbelievable how good she looks for just having surgery yesterday. Dr. Desai said the main thing they are watching for now is whether or not Gianna will develop hydrocephalus and have to have another surgery to place a shunt. She believes that this will be very likely. The nurses will start a head circumference chart today and regularly measure to see if the cerebral spinal fluid is building up, and if so, how quickly.
Time to feed her now! :-) Will post more pics when we get home tonight.

The Color Purple

We got to go up to see Gianna recovering in the NICU.  The nurses had her all fixed up with her pink blanket, stuffed bunny and pink bow stuck to her head.  :-) She's still got her IVs in and she's still intubated, which is hard to see, but she's slowly weaning off of the respirator - this will be her next big "accomplishment" after surgery.  We're all anxiously watching the monitor waiting for her to take over breathing herself.  The green lines indicate the respirator is breathing for her, and purple lines mean she's breathing on her own.  I've never been particularly a fan of the color purple, but today we feel like cheering every time we see those purple lines!  Can't wait to get to hold her again.  Gianna is truly amazing to me with how much she's been through in just 5 days of life and how incredibly Strong she is.

Post -Op Recovery

Surgery Update

Gianna's neurosurgery went very very well and MUCH quicker than they had planned - the surgeon came in to talk with us around 10:00!  She did wonderful during the procedure and nothing unexpected occurred.  Dr. Pittman even said she is doing so incredibly well she may be able to come home in a few days!!  We were so thrilled with the news that we celebrated with a "Coke Toast" afterwards!  :-) More details later!  Now just waiting on the call to let us know we can go see her.  Dr. Reddy (the anesthesiologist) came in to talk with us afterwards and as we thanked her over and over, she summed it up the best - "It's God".  Those two words say it all.  Thanks so much for all the prayers going up for little Gianna today!  Love, Amy & Matt

Surgery Day

Gianna's First Pic with Mommy & Daddy

Matt and I got to spend some great quality time with sweet Gianna early this morning before her surgery.  The nurses said she had a great, peaceful night and slept well.  The anesthesiologists (my friends Dr. Reddy and Dr. Garrison) came in to get her ready and walked us down to the operating room.  They said surgery would start in about an hour, so it should be underway now.  Matt and I are spending time with family and friends this morning and waiting for news.  I truly feel that Gianna's guardian angels are all around her today.  Much love to our little girl!!!

Birth-Day Video

Matt put together some pictures of Gianna's birth and first day into a video so that we could share her with you!  Click here to view the video.

Yesterday was definitely a day of highs & lows. I always knew we had great family & friends, but this experience has shown even more how Amazing, incredible & supportive they are. The visits, cards, flowers, gifts, calls, texts, help with the boys & the house, and most of all the love and prayers have been a Godsend to us. Gianna is blessed to have the love & support of so many incredible people!

All of the love & prayers really helped Matt & I get through some rough spots today. We got the results of G's MRI from the neurology team, and they were not very encouraging. In addition to the diagnosis we were already aware of, Gianna also has a spyrnix (it's like a cyst) on her brainstem near her spinal cord, an absent corpus collosum, and there is a small amount of brain tissue in her encephalocele. They can't really predict what all of this will mean for Gianna's development & prognosis. She'll have an MRI of her spine soon to see if there are additional cysts on her spinal column. All of this news was hard to take in, but what truly amazes me the most is how incredibly WELL she's doing despite all of these things going wrong in her brain. Other than being able to see the encephalocele, Gianna looks, feels, and acts just like a perfectly healthy baby! She is SO strong!

Surgery is scheduled for Monday so this weekend we're just going to concentrate on getting to love on her & spend as much time as possible with her!


Got to "dress her up" for the first time last night. Such a sweet girl!, Promise I will post some pics soon :-)

Introducing Gianna Marie!

Finally getting a minute to post some pictures! Gianna Was born Sept 23rd at 8:38 am - 6 lbs, 4 oz, 18 in. long. I got to see her for just a second before they took her away to be stabilized and evaluated by the NICU teem - she looked tiny & absolutely perfect! Seemed like an eternity before I got to visit her in the NICU. Here's her first pics Matt took right after birth & that evening when we got to visit with her. My fav is the one with Dominic kissing her for the first time. He's hugged & kissed my belly for months to show his love for the baby - he was thrilled to finally have his sister here!

Birth Day!!

Looks like Gianna will be here a week sooner than we thought! Dominic & I both came down with a stomach virus today and also I got results back that I have the choleostasis of pregnancy again, like I did with Angelo. So both of those things combined made the high risk Drs. decide to have me come to triage tonight. To make a long story short, after monitoring in triage, etc. they made the decision to deliver Gianna first thing in the morning (actually today since it's now 12:30 am!) Coming in unexpectedly to deliver a week early I didn't have a chance to get everything done I wanted to to prepare for her birth, but I guess it's one less week to stress about it! I'm so grateful to have all my anesthesiologist friends here & Brigette & Tara's visit was a great stress relief too :-) I already miss the boys but I know they're sleeping happily at my parents house. Going to try to get a little sleep now before surgery 1st thing in the am... As always, thanks for all the prayers going up on Gianna's behalf. I can't wait to meet her soon!!

Final Ultrasound

Had my (hopefully!) last ultrasound today to check Gianna's growth.  She's about 5.8 pounds now, so I'm hoping for at least 6 pounds by the time she's born.  Her encephalocele measured a little larger, but apparently it's better that the fluid build up there rather than in the ventricles of her brain.  She was sucking on her fingers during the ultrasound - just like her little brother Angelo!

NICU Guidelines

We thought it would be a good idea to go ahead and post some info about the UK NICU since it's so different than our experiences with visiting after having the boys.  We're not sure how long Gianna will be in the hospital, so we hope some of you can visit her there if you have a chance.  I really wanted to make up my own rules like, "All visitors must bring Amy a Mocha Frappuchino and say that Gianna is the cutest baby in the NICU" :-) But here's the real guidelines....

Visiting Hours: 24 hours a day, 7 days a week except during nursing reports at the following times:
7am - 8am
3pm - 4pm
7pm - 8pm
11pm - 12am

• The NICU is on the 4th Floor of the UK Chandler Hospital (in the KY Children's Hospital). 
• Parking is available in the UK Hospital and KY Clinic Garages (I am not even going to pretend like this is convenient...parking at UK is a pain)
• Visitors register at the Children's Hospital Welcome Desk (4th floor) when arriving to get a name tag.  They'll take your picture to put on the tag. 
• Grandparents can visit any time with the parents. 
• Adults (> 13 years old) can visit when accompanied by one of the baby's parents.
• Only 2 visitors are allowed by the bedside at a time.
• No jewelry (I know.....sorry girls!) & wash hands in the sink when entering the NICU.
• Cell phones on vibrate and take phone conversations to the hallway (again....sorry....this will be the hardest one for Matt, right?!)

Thanks so much for your continued good wishes and prayers!!

New Due Date

So we've had a little change in plans to accomodate the neurosurgeon's schedule.  I'll have the amniocentesis on the morning of September 28th and then the delivery is scheduled for the morning of September 29th.  Just 2 more weeks!  Although I was getting excited about her possibly being here next week, I think this will be for the best.  She'll be 38 weeks then - almost a "full grown" baby!  And we were adamant about wanting Dr. Pittman to do her surgery, so I think it will be well worth-the-wait. 

The Countdown

I had a long conversation with Dr. Pierce today about balancing the need to let Gianna grow as long as possible with the need to deliver her and do the surgery to relieve the pressure on her brain.  So the plan is to check her growth again at my ultrasound next week, and schedule an amniocentesis for Sept. 22nd.  This is the day she will be 37 weeks. They'll monitor her for 2 hours while we wait for the amnio results.  The amnio will tell us whether her lungs are mature, and if so, she can be delivered as soon as the next day.  So we're looking at a delivery date as early as the 23rd (less than 2 weeks away!).  As always, we're anxious for her to be here, but nervous too....  If her lungs are not mature on the 22nd, we'll wait until the 39 weeks to deliver, which would be Oct 6th.    Apparently the correct term for the fluid buildup in Gianna's brain is ventriculomegaly (which is caused by the hydrocephalus). Her head is actually quite small, rather than large as is usually seen with hydrocephalus, since she also has the encephalocele.  In other news, Dr. Pierce was not concerned about the drop in her overall growth percentile - she said what's important is that she is growing.  Going to pack my hospital bag this weekend. I already have the tiny pink outfits for G picked out!

NICU Tour

Matt and I toured the Neonatal Intensive Care Unit at UK today.  This is where Gianna will go immediately after she's born, and likely where we'll be spending a LOT of our time in the weeks to follow.  The NICU will have a resuscitation team present when she's born and will take her straight to the unit for monitoring and whatever else she may need.  They will decide when she's stable enough to get her MRI and have the surgery, and once that's over, she'll go back to the NICU for as long as she needs to be there.

We were really pleased with the tour.  It's a large unit and very organized.  I believe there's around 60 infant beds with 6 babies per room and one nurse is assigned to every 1-3 babies so they are monitored very closely at all times.  We learned about all the visiting rules,etc.  It's a very "controlled" environment, which is understandable.  Their number one priority is making sure the babies are ok.  Lisa, who gave us the tour, said that Gianna will definitely be one of the largest babies there, even if she's born today!  Most of the babies are there due to being born prematurely, others have surgical needs like Gianna's, and a variety of other conditions.  She said they care for babies every year who have encephaloceles and she said they will be 100% ready to take care of her whenever she's born.  I love the confidence - it definitely makes me feel better! 

My ultrasound earlier this week was a good news/bad news experience.  It showed that Gianna is definitely growing (she's 4.6 pounds now), but that her percentile for her gestational age has dropped.  She was at the 42nd percentile at my last appointment, and now she's at the 26th percentile, so I think that means her rate of growth has slowed down.  Her heart, kidneys, and lungs look good and they could even see that she is "practicing" breathing already.  The encephalocele is a bit larger and there is more hydrocephalus present than at my last scan.  I'll have another ultrasound in 2 weeks and will plan on delivery sometime between 37 and 39 weeks (Sept 22 - Oct. 6) depending on how she's doing.

I'm really grateful that we live in Lexington, and that I work and UK and am delivering there.  We are in the absolute best place possible - I can't imagine how hard it is for families who have to travel long distances to stay with their babies in the NICU.  Gianna is going to be very well taken care of there.