Day 22

Time for an update!

We're now situated on 10east in a beautiful room (you know you're at the hospital too much when you describe the rooms as beautiful lol) which overlooks part of the Boston skyline.  Behind those buildings in the front is the Prudential building.

It's really nice to have a view for a change! It makes such a big difference having such nice natural lighting.  The bathroom as a huge window in it as well with the same view! :)  You can also see the helicopters who land on Brigham medflighting people.

So miss Gianna has been having difficulty eating her formula.  She has thrown up the past six days in a row at some point or another.  She has only been able to eat maybe at most 3oz (I think that was only one day) and at the end of the day she threw it all up.  Today Dr. Buchmiller came up and ordered her an xray of her lower abdomen to make sure there are no blockages.  We went down around 10am for her xray and are now waiting the results.  She's still having bowel movements so I'm thinking that is not the case.  Dr. Buchmiller thinks that it might be due to how the omphalocele had been dressed the past few days, which brings me to my next update.

Apparently the the binder (the girdle like thing that is around Gianna) was not on properly and was puting pressure on the omphalocele smooshing it down onto her skin.  One flap of the binder goes across the top and one across the bottom leaving a small slit in the middle that I believe was tugging at her incision line from when she had that minor proceedure done.  It's not split on the incision but it's pulling it apart.  So needless to say I think that instead of moving forward this past week we've had a little bit of a set back.  Dr. Buchmiller will be coming up everyday now to dress the omphalocele herself, which I'm very happy about. 

She is tolerating her weans fairly well, unless her vomiting is due to her withdrawals.  It's so hard to tell since there are so many little things that come into play here.  They have her on methadone and ativan and have recently switched both to oral instead of iv, which is considered a wean in itself since it doesn't go directly into the bloodstream. I had never really thought of this whole weaning and withdrawal process.  Unfortunately we'll have to go through it again after her surgery. My poor muff muff!

So that is all for updates on Muffin.  Just continuing to get things moving with reducing the omphalocele, weaning her off her meds, and we're holding off on feeds for now.  She's getting all of her nutrition via IV.

Dan and I are doing well.  This past week was a much better week.  I was able to get into contact with another omphalocele mom to kind of "vent" about some emotions that had been bottling up inside and it was soooo nice to have reassurance from someone who has gone through the same exact thing.  Her little girl just had her final surgery! Wahoo!  Thank you Brooke for your support! It has definitely put me on a better path this past week and the weeks to come!

Dan and I have been trying to get out at least once a week for a little date night.  This Friday we ended up down in Brookline to get hair cuts!  We then headed over to a Chinese place for some vegetarian shrimp delight and shrimp lo mien...always a treat to go out on a date and reconnect! 

Sat. and Sunday were spent at the hospital with muffin.  I came down with a cold Friday night so Sat. am my wonderful husband and the best daddy let me sleep in and headed over to the hospital to be with her for the morning.  I think it helped to sleep it off a little.  I think you just wear your system down so much being here.  I'm still sniffling and sneezing, but I feel good otherwise.  I joined him around noon and we were able to take Gianna in the stroller for a walk around the hospital.  She looooves to go in the stroller.  She sits perched upright like she's a little princess looking from side to side taking everything in.  You do know how she loves to get about and see all her fans! 

Yesterday we went to Mass in the morning and when the priest came out he was by himself without any altar servers.  I think the storm kept a lot of people at home.  So Dan got up and went out back and served for Fr.  It was so cool to see him serve again...he did SUCH a good job! :) Father really appreciated his assistance! We just hung out at the hospital...everyone took naps including Dan and I...Gianna slept for 4hours! :-o Pretty relaxing day...pretty lazy actually.  To end the day we took Gianna down in her stroller to the chapel where Our Lord is kept and prayed the rosary together. :) Perfect way to end the weekend!

Our room is right next to the activity room and we were able to go in there the other day and she laid down on the mat and played with a whole bunch of toys...she thinks this vacation is great!  Definitely a 5 star resort! ;)

The Child Life specialist who heads up all the activities etc. informed me that every week they have a parent relaxation event...massage chairs etc.  I didn't partake in last weeks as it was that Reiki....not really into that kind of stuff lol

She also told me to help myself to the craft closet...I've been doing some scrapbooking stuff, which has been so much fun! I made her a little nap sign to hang on her door and I did her foot prints and made a picture with them. :) I think she has the best door in the whole hospital! But of course...we ARE talking about Gianna!

Aunt Chrissy and Great Uncle Fred are coming for a visit today!  They should be here shortly...definitely looking forward to seeing them!  I should be able to take Gianna out to the garden with them :) It's a beautiful day outside...it'll be nice to give her a little sunshine and fresh air!

She just woke up from her nap...they'll be doing some blood work in a few min so I should sign off here.  Hope everyone survived Irene alright...we didn't get hit that badly thank God! :)  Have a wonderful Monday and I'll update as news comes in!

Thank you for your prayers and support!
Love Dan Kaite and Gianna

Day 16

So this past weekend was a little trying...miss Gianna wasn't handling her weans very well and was experiencing withdrawals. She cried the majority of Friday. Dan surprised us both and only had to work a half a day and walked in unexpectedly at noon. Definitely put a smile on my face! She was extremely fussy and finally around 4:30pm she fell asleep and we took that as an opportunity to go out for a bit. I felt rather guilty leaving her knowing that if she woke up she'd be fussy, but I think we both needed a break! Being in four walls all day can really make you feel stir crazy! A little fresh air did us both good! We took the T over to government center and walked down to The Black Rose for a drink. We hadn't had anything to eat for quite awhile and seeing as how it was Friday and we don't eat meat on Friday's we really couldn't order food off of their very Irish menu. So needless to say after 12oz of my Harp UFO beer on an empty stomach I was feeling verrrrrrry relaxed and happy! We were both hungry so we decided to head over to the North End for some pizza. (I had to leave 8oz of my yummy beer behind because if I finished it Dan would have been carrying me out!) We were worried about our muffin and I was feeling particularly guilty about being out so I decided to call our nurse to see how she was doing. The nurse said she woke up and was fussy and then had a bowel movement...the first one in 12days! She said she felt sooo much better and went back to sleep and told us to please stay out because Gianna was sleeping and happy. That made my night knowing that Gianna was happy and sleeping and had pooped!

So after dinner we walked over to Mike's Pastry and got some yummy desserts and brought them over to Long Wharf and ate them as we watched the sun set. It was such an enjoyable evening and we definitely needed some time away from the hospital and time with each other. We headed back to the hospital and stayed with her for a little bit before heading back to Yawkey for the night.

Sat was a whooooole different story. She cried for 99% of the day. I thought we were going to loose our minds! I felt so bad for the poor thing who obviously was upset or uncomfortable. It was so horrible not being able to console her or do anything for her! Being her parents you feel like super heros who naturally make everything better and to not be able to do that for her was such a helpless feeling! That night they finally determined that she was withdrawing and not handling her wean off of her sedation medication well and they finally went back up on it. After a little while she calmed down and her nurse had only her for a patient that night and assured us that she would hold her all night if that's what kept her happy. So after a very long and upsetting day we left the hospital. That was a bad day and night period lol.

Sunday was a much better day and she was a lot calmer. Nana and Bumpa surprised us after church and showed up to watch her for a bit so Dan and I could go out for a walk. That was very nice! We had a nice lunch with them and came up to visit muffin for a little bit before going out for a walk. Thank you nana and bumpa!

Yesterday was a really good day and she was so happy and smiley! I went down to the center for families and picked out some new books for her to read. I also picked up The Lion the Witch and the Wadrobe after Jess made a comment on her blog about reading that with Lily I thought that it was a great idea! She loves hearing me read and most of the time it puts her to sleep! So we read, played with some of her toys, she watched her show and took a three hour nap!

Dan and I have been going down to the chapel every night before we leave the hospital and we pray our rosary down there. We found out from Fr. Bob that the blessed sacrament is down there in this little box in the wall with a sanctuary light on top of it. It's nice for us to end our day in prayer together in front of Our Lord.

Dr. Buchmiller came in this am to take a look at the omphalocele. She was so shocked at how much had gone in over the weekend. She thinks it's making great progress. We're wrapping it a little differently right now and working on weaning her off her medication. We've taken her completely off her sedative and have replaced it with Ativan, which is given directly through her IV. The morphine is slowly being weaned off since she didn't tolerate it very well over the weekend. So the plan is to get her off her meds, get her up to the floor, and continue to do reduction and compression to get it truly at skin level. At that point we will reasess. Dr. Buchmiller

She's eat more now. She's taken 2oz for me around 10am and I tried to feed her around 1:30pm and she threw it up. It was actually kind of scary. I put the bottle down and she started to look like she was going to throw up so I sat her up. She then froze like she didn't know what to do with it and started to turn blue. I had to yell out for someone to come in. This doctor came walking in and she then proceeded to throw everything up. We gave her a little o2 and she was fine after that. Not sure if it was withdrawl symptoms, her tummy is tighter now or she choked a little...too many little things going on right now. lol

Gianna was in such a good mood yesterday am when I called at 8am and she was napping the nurse told me not to rush in and to take the morning off and take a break. I had to go to the grocery store anyways so I took a nice brisk walk down into Brookline to the Stop and Shop to pick up some of our groceries. My little cart kept accumulating things until it dawned on me that I would be lugging all of this home. Needless to say I was very particular about what I put in the cart. On my way home I decided to go a different way that I've walked before a couple of times and is a lot more scenic. Weeeellll I did in fact end up taking the "scenic" route because I got a little lost. Well not lost lost but didn't end up going the way I had intended to lol. I ended up heading the right way but then ended right back to where I had started....oops. For all of you who I know are reading this worried about my safety and getting lost by myself in Boston....it's million dollar neighborhoods and I can't even tell you how many people are walking the side walks in the morning so I feel really safe walking around this area. Plus all the nurses have told me this is a great area to walk around.

I was able to take a little walk at lunch today and ate my lunch out in the Prouty Garden. Eleanor Prouty set up a trust fund to keep the garden as long as Children's Hospital is in existence. She protected it so much legally that no one will ever be allowed to build on it or remove it or move it. It has enough money in the trust fund to have two full time gardeners until like I said CHB is no longer in existence. It's always soooo beautiful and it's so delightful to go out there when I get the chance. I can't wait until Gianna can go out there with me! :)

She's been sleeping good at night too! Most of the nights she sleeps straight through they've told me! Keep it up G! She's also been taking her am and pm naps, which she is currently doing. :) I have her Jewel Lullaby cd playing and most everyone who comes in here says "It's so peaceful in here!" I like to keep some sort of music playing as I feel it makes her comfortable. I also went to CVS and picked up the JJ Bedtime lotion that she wears at home. She smells so good! The lotion they give you here doesn't have any smell to it and is so watery...she smells like my lil muff muff now. :)

So we're doing really well trying to take every day as it comes. We had a little bit of a rough weekend, but just trying to make sure we take care of ourselves as much as we're taking care of her. I have to remind myself that the nurses and doctors aren't thinking I'm a bad mom for taking some time out of the day to get out and get some fresh air or taking some time for Dan and I to both get out together. They encourage us to get out actually. I can see why they say that the divorce rate is so high for parents with children who have long stays at the hospital....not that Dan and I are having any issues, but that's because we're making sure we make time for eachother keep open communication and keep reminding ourselves that if we don't keep us strong we can't keep her strong. We're a team. We each handle things so differently and have to constantly remind ourselves that just because we each have a different approach to dealing with the stress of this all it doesn't make his way or my way bad, but we have to be respectful and understanding of eachother's way of dealing with things. This time around has been so different and so much more stressful for us. I really haven't been handling things that great and its a constant game of figuring out how to handle things...what's going to make this work. Each day gets a little easier. For anyone reading this that may be going through the same thing or may be going through this in the near future, just know that there are other people out there going through similar situations that you're a good parent and that it's ok to not be physically present at the hospital 24/7. I wish I knew some other parents going through this right now and I wish they'd tell me the same thing lol. The guilt is the worst part of this whole thing!

I hope you're all doing well! Will keep you updated!

It's actually much smaller then this...this was probably last Friday...it's much closer to the skin now.

first time i got to hold her

first time daddy gets to hold her

i got my eyes on you!

this is the life!

Love and prayers to all!

Dan, Kaite and Gianna

Day 9

So Gianna was extubated about an hour ago and everything went really smoothly.  She was a real trooper!  Mommy was too. ;)  Thank you Nana for coming down to be here with us when it happened!  I needed a little extra back up. ;)  She doesn't really have a voice yet since her throat is so swollen and irritated right now.  The poor thing goes to cry and this quiet little raspy sound comes out of that sad little face.  She is on cannula oxygen right now and is sleeping comfortably.  Hopefully she'll stay like that for awhile.  I think she will since it's been kind of a traumatic day for her. 

So the next step to getting her on her way up to the floor and out of the ICU is getting her weaned off her pain meds.  They'll do this over the course of the next couple days I think.  She'll most likely go through withdrawals, which may include; vomiting, diarrhea, sweats, feeling jittery, irritability etc.  Hopefully she handles the weaning well.  Poor thing has been through too much already.

Dr. Buchmiller came in today to take off the mechanism we replaced yesterday as it did not adhere to her skin and some of the stitches had come out.  Right now it is dressed like we used to dress it at home; bacitracin, xeroform, kerlix.  They're ordering an "abdominal binder" for it that will add compression to the omphalocele.

So right now is about getting her off her narcotics and keeping her comfortable.  Her throat is probably going to be very sore.  They'll keep her on Tylenol for that.  I said I had hoped she'd have her teeth come in while she was sedated...don't think that happened, but hey I can dream can't I!

Well no more news at the moment.  Will keep you all updated as I hear things!

Love and prayers to all!
Dan, Kaite and Gianna

Day 8

Alright so we just had our meeting with Dr. Buchmiller to kind of regroup and figure out what the next course of action is.

So Gianna is being weaned off her morphine and then her versa (sedative) and has already been completely taken off of her paralytic.  She is also being weaned off of her ventilator and is most likely being extubated tomorrow if all continues to go well.  Right now she is more alert and is moving around.  She opens her eyes, tries to cry sometimes, moves her legs hands arms etc.  She can squeeze your finger and responds to your voice trying to comfort her.  Jess she has been staring at your balloons...I think it keeps her entertained and distracted from the tube down her throat!  Once she is extubated we get to hold her! I CAN'T WAIT!!!!

So the plan is to take off that mechanism tonight and replace it with a new one...new glue etc so that it sticks better.  They aren't going to staple it down or put those "stake" like anchors in it either.  They are going to suture the "laces" into the duo derm not her skin and that's how there will be some compression. This will all happen tonight.

Tomorrow after she is extubated she will be moved to 10 east where she was before and they will help weaned her from her medications.  Dr. Buchmiller is going to keep us here if that's what we'd prefer to do, which it is.  We could probably manage the next step of compressions with a girdle like thing at home, but our mindsets are to be here and get this thing closed completely so she said we can manage it all here. 

So the next step after we get her omphalocele to skin level will be to put on an ace bandage material girdle that will velcro across the omphalocele to keep it compressed.  After the membrane around the omphalocele has really toughened to Dr. Buchmiller's liking she will add some sort of material (she held up a diaper as an example, not that its going to be a diaper) that she will put under the girdle to push everything in even further giving Dr. Buchmiller the optimal room to stretch and pull the skin and fascia over at final surgery time. 

So one day at a time.  She thinks weaning her from her medication and getting the omphalocele to skin level will probably take another week.  Then we'll go from there.  She'll also want to eventually reintroduce her to formula and normal feeding to make even more room in her abdominal cavity.

This was a really good meeting because we were afraid they were sending us home and we would have to come back and initiate back into "hospital life."  Our mindset is hospital and final surgery and by going home it's like taking steps backwards mentally and emotionally for us.

I asked if I needed to reserve more time at Yawkey which I have reserved into the middle of October and she said no.  She thinks two months in enough time to accomplish what she needs to accomplish.  So that sort of gives us a very general time line as to how long this will take us.

Please continue to keep us in your prayers...it's definitely a roller coaster ride!

Here is what the omphalocele looks like now

Love, Dan Kaite and Gianna

Day 7

Gianna is doing well. She had her first "surgical procedure" today.  She did well through it.  They cut off all that excess skin.  I will take a picture of what it looks like now.  It's kind of like half an orange sticking out now.  It's wrapped with padded gauze and there is shoe lace like straps tying it down to the mechanism around the omphalocele.  I guess in the OR Dr. Buchmiller was able to get it down to skin level and the ultrasound showed that it didn't effect the blood vessels at all.  So the next step is rather confusing at this point and I really need some more clarification from Dr. Buchmiller.  There's a few ideas being tossed about at the moment.  I think I'll just wait until I get some clarification before I post them...it just causes a lot of miscommunication among people.  I want you all to have the right story. ;-) If you all haven't guessed by now the story changes daily anyway and Dan and I really never know what's going on.  Just wanted to let you all know that she made it through just fine and seems very comfortable right now. 

I'm laying down on my little window seat staring out at this rainy and gloomy day.  Doesn't really help to keep your mood very positive lol.  It's extremely difficult to not really know what the plan is.  Makes you feel like a ping pong ball...someone else has you in their hands and just keeps tossing you back and forth.  It's only been a week and I feel like we've been here for a month.  I feel like I've forgotten what normal life is like already.  It's the strangest feeling actually...I'm just sort of floating in limbo.  I never know what each day will bring, how long we'll be here, when she's going to wake up, when I'll get to hold her next, when her surgery will be etc etc.  There's talk about us now going home for a few months and coming back again....hopefully not through the holiday's lol.  We'll see we're talking with her tomorrow to get a better sense of the "plan" and I'll update you all afterwards.

Gianna's swelling has gone down considerably.  They gave her three or four doses of lasix and when I walked in this am she finally looked like my baby again.  She must feel so much more comfortable too.

So I will keep you all updated!
Love and prayers to all!
Dan, Kaite and Gianna

Day 5 update

Lets see, I think I need to update from Wednesday on.  So on Wednesday Dr. Buchmiller and the plastic surgery team came in and wanted to try this new mechanism that they would place around the omphalocele that would serve two purposes; to pull the skin on either side to stretch it out and to push the omphalocele downwards.  It ended up that there was too much pressure on the omphalocele so they opted for plan B which is the silo method.  Her omphalocele is sutured at the end and tied to a bar hanging over her crib.  Dr. Buchmiller has designed two long tubes that get placed on either side of the omphalocele and are attatched at each end (looks like a barrett) and every day she comes in with ultrasound and they slide the barrett downwards pushing more in.  Ultrasound verifies that the reduction hasn't caused any reduced blood flow to her liver.  So everyday she will be doing this until we're at skin level.  At that point we'll take it from there. 

Gianna is so puffy from all the extra fluid she has in her body.  Mostly from her medications.  They could give her a diuretic to get rid of some of the excess fluid but they don't want to because it would dry out her intenstines.  So Dr. Buchmiller thinks that Gianna may be brought to surgery to cut off the excess skin from the omphalocele and have things at skin level for a little bit have her come off her ventilator and have her start to eat again and wake up and move around...get rid of the excess fluid and then go back to surgery to have everything done.  The plan changes min by min literally though, so I never get my heart set on anything.  You really can only take it day by day.  She could come in this pm and have a completely different plan.  She's the boss and knows what's best so whatever she wants to do she can do it!

Lets see what else...the biggest stress for me lately has been her heart rate spiking indicating that she's uncomfortable.  It's a difficult thing to manage for her...it's almost like she was on a ton of pain meds before and is just not responding well to them now because she has such a tolerance, but to my knowledge she was never on pain meds for a length of time at all.  The other issue is going up too much on these narcotics means a longer withdrawl period trying to wean her off of everything.  At the moment her HR is 119 and that makes me very happy because she is comfortable. 

*VIEWER DISCRETION ADVISED*

 Wednesday

 Friday

Love, Dan Kaite and Gianna

Day 5

No one and nothing can prepare a person mentally or emotionally for something like this.  The past few days have really been trying to "kick my butt."  It's taking everything I have to keep myself up and running.  I know that God has willed this to happen to all of us and He has a purpose for all of this that we may not know now, but maybe it will be made clear to us down the road or maybe not.  No matter what though He is in control and I have to have faith in Him.  The past few days have shown me how I am not in control of anything and how He is in control of everything.  As I sit here and watch my paralyzed little baby lay there so helplessly like a prisoner trapped in her own body I wonder what she's feeling.  The only indicator I have of her comfort is a little green number steadily changing on a screen above her. Her heart rate is my only indication of how she may be feeling.  As the number starts to creep into the 130's I begin to feel myself tense up as I wonder if she's beginning to feel some form of discomfort...is she just awake under all that or maybe she's agitated from having a tube down her throat?  Could she be feeling panic from not being able to move anything or does she hear mommy and wonder why she isn't being held?  Does she need to cough but can't because of the ventilator or maybe the mechanism around her omphalocele is causing her pain?  I try to rub her little head and whisper in her ear that mommy is right here and everything is ok, but then I notice her heart rate starts to climb again...does she hear me and wonder why I'm not holding her and wonder what's going on?  I feel so helpless and don't know what to do...should I continue to soothe or should I back off?  I go from feeling like her superhero at home knowing her so well, her likes and dislikes and what makes her comfortable to suddenly not having a clue what to do. 

I haven't seen her beautiful blue eyes, her coy little smile or felt her soft little body in my arms for five days now.  I know look at a limp swollen baby who's eyes are so puffy you can hardly open them.  That sweet smell of her soft skin is now replaced with the smells of ointment and surgical tape. I go to bed and look over the side of the bed only to find her not there.  The rhythmic snoring and heavy breathing that used to come out of that little body that I used to fall to sleep to is no longer there.  I feel like someone has taken my baby.  I miss my baby.

I feel like someone has taken my heart right out of my chest and all I want to do is curl up on the bed with her and hold her tight.  I want to go through this for her.  Tears are just waiting to be cried.

My only comfort is my Heavenly mother and Jesus.   I think about how helpless and heartbroken Our Lady must have felt watching her Son have to go through such suffering.  I place myself at her feet and picture myself being held by her and soothed by her...her maternal love for all of us.  I close my eyes and I see Gianna being held in Jesus' hands.  I see her guardian angel tending to her and comforting her and I am reassured and comforted myself. 

As a mother you want to take control of everything for your children.  This is just a reminder to myself that I am in control of nothing and that my little love is first His little love and He is taking care of her. 

Thank you Jesus for holding her in the palm of your hand...thank you for giving me this opportunity to suffer so that I may offer it up for whatever it is You want and thank you for giving me this opportunity to gain graces.  Please give my heart some consolation.

The Lord is my shepherd,
I shall not want;
He makes me lie down in green pastures.
He leads me beside still waters;
He restores my soul.
He leads me in paths of righteousness
for His name's sake.

Even though I walk through the valley
of the shadow of death,
I fear no evil;
for You are with me;
Your rod and Your staff, they comfort me.

Surely goodness and mercy shall follow me
all the days of my life;
and I shall dwell in the house of the
Lord forever.

Psalm 23

I love you Gianna.  Mommy will never leave your side.

On to recovery! :)

Hello all!  Thank you everyone for your support and prayers.  They are the biggest consolation to Dan and I.  We wouldn't be where we are right now if it weren't for all of the many prayers.  God has truly blessed us so much and we have so much faith that everything will continue to go according to HIS plan. Gianna is carved in the palm of His hand for sure!

So here we are 4months later and our little muffin is back at the hospital for her surgery!  This will be a rather lengthy process which I will explain. 

So we got admitted on August 8th into the ICU.  The day of admittance was a whirlwind! We were admitted at 2pm and from there she had her IV's put in...one in her little foot and one in her little hand. She was a trooper only crying just a little tiny bit!  We then waited for about 25-30min for the team to get ready to intubate her.  So Dan and I took the opportunity to hold and snuggle our little muffin as much as we possibly could before they intubated her.  I didn't think I'd handle watching them intubate her very well so I stepped out and Dan stayed with her.  I guess they gave her sedation and pain meds into her IV and then when she was out they did the intubation.  Dan said it really wasn't bad at all since she was so still and asleep.  When I came back I must admit I started to get all choked up and teary eyed seeing my little baby with tubes down her throat and nose and laying there all limp.  I took a deep breath and reminded myself that God was holding on to her and that He would comfort her and myself. I immediately felt His reassurance and held myself together.  They actually then started reduction of the omphalocele immediately.  Dr. Buchmiller was able to reduce quite a bit and was very pleased with her progress.  They tied a girdle like mechanism around her to hold it all into place.  The rest of the day and evening was all about finding the right level of sedation and pain meds and right settings for her ventilator to keep her breathing properly.  It was a little scary at one point after the reduction she started to desat and her O2 dropped to like 80 from 100% and they couldn't figure out why she was desating.  You could see a little concern on the respiratory techs face and you could see G's little face turning bluish color. My heart was racing and I was starting to get a little panic stricken.  Everything got worked out though and after having done a chest xray to determine location of the ventilator tube they needed to pull the tube out a little...it was too far down.  I think they could see the concern on my face and told me not to panic unless I see them going chaotic with people rushing around everywhere.  They said they intibate people so many times a day and this is their job and if they're not worried then I shouldn't worry at all. 

We were so tired that night...I think more emotionally tired then anything.  We're staying at Yawkey Family Inn so it was very nice to go back to a homey environment.  It's such a difficult thing because as a mom you feel so guilty leaving your child.  You think people must be thinking you're just the worst mom for not staying with your baby 24/7 but the truth of it is that if you don't take care of yourself you emotionally and physically can't take care of her.  Knowing that she's sedated and completely out of it helps to leave at night.  The nurses are one on one with her so that helps too.  Also hearing the nurses tell me that its good I'm staying somewhere else and to take care of myself and that they'll sit here and stroke her head or hold her hand makes me feel so much better.  When she comes out of sedation...well that will be a whole different ball game.  Not sure if I'll be able to leave my muffins side ;).  We'll cross that bridge when we get there.

The room is very nice and has a much more comfortable bed space right on the window.  Its nice and clean and looks very new.  Our window doesn't overlook anything really but it's nice to have the natural lighting.

So today's plan is to put this mechanism the surgical and plastic surgery team have concocted.  It's kind of difficult to explain but it's this material called duo derm that will act as skin with sticky stuff on the bottom of it that will stick on to her skin around the omphalocele.  They'll put metal brackets on top of that stuff and attach some sort of lacing to it that will act as the compression and they can just keep tightening that to reduce the omphalocele.  Right now they're wrapping it and tying a girdle type thing around her back which is kind of counterproductive because every time they take it off to reduce it everything just pops back out.  They're also going to be coming in today to try and put a pick line in.  That goes into a much bigger vein and is a better option then the IV for people who need IV fluids IV nutrition IV meds and labs drawn frequently or continuously...because she's so little her hand veins and foot veins are so small and having continuous flow of "stuff" could potentially collapse the vein.  So hopefully today she'll get her pick line....she's been on a waiting list.

As for a timeline...well we don't have one to give you.  It's all up to how her body reacts etc.  It's too hard to have a timeline and just gets your hopes up.  Dr. Buchmiller thinks that by the weekend she might be wrapped flat!  We'll see!

She's not responding well to the morphine and the sedation medication...they keep having to up her doses trying to find the right combination etc.  She keeps coming too a little and starts moving her head arms and legs and occasionlly opens her eyes quickly.  I think when the doctors do their rounds this am they'll go up on her doses. 

We'll keep you all updated! Check back for more and thank you again for all of your prayers! Keep them coming!

Love you all and praying for you all,

Kaite, Dan and Gianna