Tomorrow's the big day!

Well, it's finally come....Arianna's big surgery is scheduled for tomorrow! She'll be 6 weeks old.  So barring any emergency surgeries that may pop up and bump us, our little peanut will be fixed tomorrow!  We had our pre-op visit yesterday where they told us what to expect.  Basically, they will cut through her sternum and spend 3-4 hours repairing her heart. Her issues are: Dual output right ventricle (DORV), VSD, and pulmanary stenosis.  The most shocking part of it for me is that she will be on heart and lung bypass and that she will have several IV's, most shockingly, in her neck!  I guess it goes directly into her jugular. Just thinking about that makes me want to puke. In addition, she'll have some drainage tubes coming out of her belly and a breathing tube when I see her again.  Luckily, she'll hopefully only be in the hospital for a week after the surgery.

Unfortunetely, we aren't the surgeon's first surgery of the day; we're scheduled for 1pm...surgery start probably around 2-2:30. I'm glad he told us this is about a 3 out of 10 on his level of complexity.

Poor Jesus and I have been feeling kinda depressed the last few days, and today my body just aches. I'm guessing that all the stress we've been feeling inside since we found out about her heart defect is finally coming to a head.

Please pray for us and most of all for precious Arianna. I will update when I can!!

It's been a little while since my last post. Here's Arianna's update.
As of now, her surgery has been rescheduled for 5/17/13.  We met with the cardiologist on Friday and she said that these little heart babies can change for the worse very quickly, so we might as well get it out of the way. And that means we can head back home to SD sooner rather than later.   I'm actually glad we scheduled it earlier because I have a feeling they will cancel on us for more urgent cases.  So we'll see.

Also, before we left the hospital, Arianna did not pass the hearing test in her left ear.  We went in to meet with the audiologist and she failed it again.  They did further testing and though the eardrum is responding, in several of the tests, the right ear responded much better than the left.   She is scheduled for a diagnostic test tomorrow to find out what the deal is and what we are dealing with here.   The audiologist told me not to freak out...I said "look lady, this is the least of my worries! I know she hears something with the right ear so that's good enough for me!"  It's pretty apparent that there is a difference because when I try to soothe her in the left ear, she is unresponsive, but quiets right down if I shoosh her in her right ear.    Tomorrow's appointment is 4 hours long and she's supposed to be sleeping the whole time. They told me to skip a sleep session and a feeding session so she's good and mad...Ummmm, she can't get really upset!! She turns absolutely dark purple because she's not getting enough good oxigenated blood.  So we'll see what happens.

In addition to her ear issue, at her pediatrician appointment on Friday, apparently her eyes are not tracking exactly.   The doctor said she is still young so maybe they are not focusing quite yet, but that I should watch it VERY closely.   And that I should follow up with an optomologist once we are back in SD. 

All of this got me thinking that the slightly enlarged left ventricle in her brain.  Various different doctors told me it was nothing to worry about, but I'm starting to think all these issues could be related.  I've left a message for the Stanford pediatrician to call me back so we can get a MRI and find out what is going on.

On top of ALLLL of this, I get a call yesterday from the local pediatrician that I should come in right away and get Arianna tested for CMV, which is a virus that about 80% of the population are carriers for, but can be lethal for newborns.   The reason she wants to test Arianna is because CMV causes hearing loss in infants and if we catch it soon enough, there are treatments we can start to prevent further hearing loss.   However, the IV medication apparently has pretty severe side effects and they try to avoid giving it to newborns...AWESOME! :(   Pretty much, if she has this virus, she's not gonna get her surgery, because the virus preys on the compromised immune system.  Needless to say, we're praying she is all clear.

I brought her over there to do a urine catch and it only took 4 hours and 4 bags. The first bag fell off. The second bag leaked and we didn't catch enough urine.  As we were changing bags, she promptly peed all over the table as I was talking to the doctor.   She filled the third bag with SOOOO much poop. it was an absolute disaster. Finally, the 4th bag worked.  Phew!

So there you have it in a nutshell.  This poor peanut will be in touch with just about every type of -ologist on the planet!! She sure is sweet though!  :)

At last our baby has come home!!

Well, after my last post, I was so frustrated with the NICU staff, that I decided to basically move into the NICU to take control of the feeding situation. Otherwise, they never would have let her out.  I know she is not the most dependable eater, but these night nurses would give her 5mL of milk and when she would get tired, they would give up and feed the rest through the tube.  These heart babies get very tired and don't have the stamina to eat it all at once. Patience is key.  So I figured who better to take charge of feedings than me!?

Luckily, I was given an actual private room so I didn't have to sleep on a couch in a room.   However, the second night, I got booted from my room because some family's situation was getting worse (which in the NICU is NEVER good)--so obviously I was happy to give up the room.  However, I was given a couch in the busiest lounge!!  All I can say is: EARPLUGS! 

The first night, she gained 43g! woohoo! the goal was 20-30g/ day and previously she had gained 5g, then 13g.  I was super optimistic that they'd see her progress with me and let her go. However, the next morning, they asked me to stay one more night to prove to them beyond a shadow of a doubt that she was ready.  Well, the second night, she gained 74g!!! The doctor told me "well, you have proved to us, that when we get out of the way, you truly know best how to take care of your baby".  WELL DUH!

So on Wednesday, April 17th, we were finally able to take her home!! we are finally a real family--all together.

They've set her surgery for May 24th, which is sooner than we actually thought--they had originally said that she was in such good shape that she wouldn't need surgery for 3 months. But apparently, our superstar surgeon, Dr. Frank Hanley, chose the 24th for his schedule.  He previously told me that waiting to have the surgery later was mostly to help the bonding process solidify for mom and baby.  It wasn't to get them to gain weight as he can operate on any sized peanut, apparently.  The surgery will be so traumatizing that she'll really need her mama afterwards. 

One of the nurses for the cardio vascular ICU was telling me about a few of the things to expect with the recovery of open heart surgery, and it was a lot of stuff that I reallllly prefer not to think about right now. My goal is just to enjoy my baby right now--oh, and to get her schedule switched--she seems to think that nightime is the time to be awake!!

Thanks so much for all your prayers!

No homecoming for us...

I called into the NICU this morning, as I do every morning to see how Arianna did overnight. Well, the good news is that she gained 45g last night! woohoo!  Apparently, the night nurses gave her a ton to eat...but through her feeding tube.   The daytime nurse, who we had both yesterday and today, was very patient with her and used the feeding tube as a last resort.  Well, apparently, the night nurse had no such patience and just fed her everything through the tube.   Any type of food in the tummy is good right? Wrong.

When I got to the NICU, I said I was super excited to get her home Monday or Tuesday.  The nurse said there is just no way. Arianna has to be off the feeding tube for 24 hours for it to get taken out. THEN, she has to prove that she can gain weight/eat reliably on her own for 24-48 hours. So we are looking closer to next weekend! It's just so frustrating because I feel like I just have them emptiness when I'm at home without her.   Today I was holding her super close and she was doing the same type of movements that she did when she was in my belly, and I just felt so sad that I was closer to her when she was inside than now.   I only see her like 7-8 hours a day, for 3 feedings, and then I go back home to help put the other kids to bed.

The nurse said it may make sense for me to try to camp out at the hospital for the next couple days so I can control the feedings. Since the hospital is 45 minutes from my parents' house, it doesn't really make sense to go back and forth. So I'm debating staying at the Ronald McDonald house or some motel for a few days so I can just run over to the hospital when needed. I just want it all to end.   We are so tempted to just bust her out of there. Tell the doctors that we'll take our chances.   Every newborn goes through feeding challenges. It certainly isn't helping her to be away from me for the majority of the day...

Sorry this is a depressing post...I guess it comes with the ups and downs of having a baby in the hospital.  Hopefully I'll have better news tomorrow.

Two steps forward, one step back!

Well, I had my first night of sleep at home last night--which was AMAZING! First time in a week that I slept for more than an hour! woohoo!  And I only called the NICU twice to see how Arianna was doing. Let me tell you, that was restraint!

Well, with all good things, comes a setback apparently.  Turns out that Arianna refuses to take a bottle, which is not good if I'm trying to sleep at home!  So, I get back to the NICU this morning, and the poor thing has a NG feeding tube in her nose. :(   And she got a few days added to her stay. Now, even if her heart ductus has closed tomorrow in the echo cardiogram, she still has to stay until Monday/Tuesday to monitor her feeding. GRRRR!  I'm so tempted to just pitch a tent in the NICU to ensure we can prove to the nurses that she just wants her MOMMA!

Anyways, please keep her in your prayers to start eating!!
thanks!

Here are some pics--notice the mohawk in every picture!! Does that make me a bad mama? haha

More delays...

Well, I was discharged and had to find a place to sleep to be able to stay at the hospital with Miss Arianna.  A social worker helped and said she found me a room! Hooray!  She gave me location within the hospital where I would be spending the next two nights: "3rd floor, South, Day Room, Sofa #3". Ummmmmm. It's basically a big room filled with fold out sofas. Well, considering that I'm only sleeping 1.5 hours at a time, I guess it will do. Really reminded me of my hostel days though. Luckily only one other guy showed up, so it was fine.

On to our pequena...well, the cardiologist stopped by yesterday and said that after the latest echo cardiogram (ultrasound of the heart) on Monday, apparently Arianna has Patent ductus Arterius...which *could* cause problems.  Essentially, all babies are born with this blood vessel open. Most babies have this close within minutes or days and all normal heart functions continue. However, sometimes it takes awhile for it to close, which allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries.  The doctors say they have no idea how long this will take to close-they've seen it take weeks! Our goal right now is to look at the heart again on Thursday to see if it has closed.  Keep your fingers crossed!

Other than that, our pink little friend has turned a bit yellow/orange-Jaundice.  She does not have the levels necessary to be put under the lights but is extremely border line. Aside from that, it's extremely common, so that is the least of my worries. I told them that since we are stuck in the hospital anyways, might as well put her under the lights to help her pass the jaundice. So there she is with her sunglasses, dressed only in a diaper--she LOVES it! This is a beach kid if I've ever seen one. Jesus says all she needs now is a margarita to be complete! 

They also took her back off of the IV fluids and she is doing AMAZING. She's eating a ton and having lots of wet diapers.  The nurse who was in charge of her a few days ago said she has seen a huge improvement, so that's good.

Despite the open heart vessel issue, I think she's back to being the healthiest in the NICU. YAY!  Every day there is some sort of drama in there-it really gives you so much to be grateful for.  There are families on either side of Arianna that we've become friends with. One of their babies had to have to their stomach pumped in front of them yesterday (talk about super scary), and the other found out that their seemingly improving little boy has a genetic defect.  :(   Both of these family's babies have the same tetralogy of fallot as we do, so it really shows the variety of cases.  Basically, there is at least one family crying hysterically at all times in the NICU.   We also met some Spaniards today (Jesus manages to meet Spaniards no matter where he is) and they were told last Saturday that their baby would probably not survive!!! Yet, then on Sunday, the same doctors said they guaranteed he WOULD survive.  It just gives you so, so much to be grateful for.

Also, today my two big girls came to visit Arianna and I in the hospital.  Alazne LOVED holding her teeny tiny sister and Lexi seemed a little sad.  We thought she was a little jealous, but when we asked her why she was sad, she said she didn't want to leave her baby in the hospital.  I love my girls. :)

Still in the NICU

I know I promised to be this SuperMom who, in my spare time whilst twiddling my thumbs in the NICU, would be posting to this blog 5 times a day. Well, obviously I was in soon-to-be new mommy bliss and obviously had a warped sense of reality (I think that is actually how people end up having lots of kids-amnesia!).  I have been so tired with my 1.5 hours of sleep between NICU visits, that even when I so much as look at my laptop to think about providing an update, I just shudder.

Today I am getting discharged. Notice I did not say we.  Yesterday, there was a huge debacle as the nurses changed shifts, which ended up having poor Arianna stabbed in every possible vein (with no success) to put another IV line and earned her 2 more nights in the NICU. :(   Not because she is doing worse...only because a nurse was trying to hurry up.  As far as the cardiologists are concerned, she has been cleared to go home for a few days now.

I understand the NICU nurses are very detail oriented and there are no shades of gray, which is why we love them, right? Basically, they took Arianna off of her IV because she was doing well and it would help to stimulate her to eat more.  She did eat more, but for some reason she didn't have any wet diapers from 9am to 6pm.  She had a huge one at 9 and then seconds before jabbing the new IV in her arm at 6, she had another huge one.  I think she must just be ready for potty training since she could hold it that long, but the nurses disagreed.

So now we are here waiting for her to prove she can eat well again and have wet diapers as we decrease the IV.  I think they are trying to find me a room or lounge or somewhere to sleep tonight so I can stay with her.  I think tomorrow I will go home for good, and hopefully she can come Wednesday.   She also is right on the border with jaundice. She doesn't need to be under the lights, but if she gets any more yellow, she may have to.

That's her update!  One other thing...I finally figured out who she looks like!! Sure, she has my coloring, but aside from blond eyelashes and eyebrows, she doesn't really resemble me nor my husband.  She kept giving me this look and I thought, who is that actor...well a few nights ago in my foggy state, it occurred to me!  She is identical to Liam Neeson! HAHA!  I'll try to catch "the look" with a picture!

I finally was forced to turn in the birth certificate document-I was dragging my feet because we couldn't decide on a middle name.   I was here by myself (Jesus was at home taking care of the girls) so I finally just made the executive decision.  Her name is Arianna Anyce Garcia.  This is the exact name that my favorite female cousin was ALMOST named many years ago.  When I mentioned to my uncle that we were going with Arianna, he told me that was the name he had wanted so many years ago, and the middle name was after my Aunt Anyce.  Very special.  Anyce is pronounced AN-eese.

OK all for now.  Keep praying for a speedy release for our baby girl!