August 31, 2008

Olivia is still doing awesome. She's eating over half an ounce now and can't wait to get more. She eats her bottles so fast but it seems to tie her over for her next feeding. She makes the cutest little faces when she's awake. Today she figured out how to suck her thumb and would not give it up when we tried to take it out. They are hoping to have her strictly on milk in the next few days which means they could take out the PICC line and as soon as she starts gaining weight on the milk alone, she'll get to come home! We sure hope it's soon!

August 30, 2008

Olivia is still doing great. She LOVES being able to eat and her feeds increase every few hours. She spend a lot more time awake and looks around at everything. We really don't have any updates other than that she is doing so great. Yeah!

August 29, 2008

Miss Oliva finally got to eat today! The surgeon came by and checked her belly, changed her dressing to just a small bandage, and said she was ok to start eating! So during rounds the Nurse Practioner wrote up the order and at 2:00 we started her first bottle. She only got 4 cc's (about a teaspoon) for the first two bottles but it will start to increase over the next couple of days as long as she is taking it well. She guzzled it up in about 2.4 seconds and spent the rest of the time trying to eat her blanket, hands, or anything else she could get close to her mouth. She decided that she didn't like her binki anymore after the bottle experience so it took her a while to fall asleep.

She also overheard everyone talking about taking her anderson tube out today but thought they were taking too long so when the nurse wasn't looking, she took it out herself. Good thing they were going to take it out this morning anyway because I think they were out of options for keeping it in. If tape up the whole side of her face didn't work, I don't know what would.

We're hoping all goes well with the food tonight so she can keep eating bottles and we can move closer to bringing her home. She is so darling and has the sweetest little personality. We can't wait to be able to spend all of our time with her rather than just a few hours a day.

August 28, 2008

Look how cute this little girl is. I can hardly stand to leave her side anymore. She wasn't on any pain killers today and she was still so happy and content. She was awake for over an hour this afternoon and just looked around and made the cutest little faces. The nurse and I gave her some sugar water again (on her binki) and she absolutely loved it. She just kept licking her lips until she fell asleep.

The surgeon came by today and said that she was doing so well that she will probably get to start eating tomorrow! They switched her anderson tube to drain only and then they'll probably be able to take it out in the morning. So, the only thing she'll have left stuck in her is the PICC line. Everything else is going well also. We're so excited that she is progressing so well and that our prayers are being answered.

August 27, 2008

It's obvious that Olivia is a determined little girl with all of the great progress she is making. Last night she decided to show the nurses that she knew better than them and pulled out her ventilator tube. She hated having those tubes down her throat so she grabbed on and pulled until it was out. Luckily she didn't need it anymore so they let it stay out. She also got a hold of the anderson tube (the one that suctions the fluids from her stomach) and almost had it out before the nurses caught her. The nurses and I had a good laugh over that one today. After that little incident they had to put the tube through her nose and tape it all the way up her face. It still bugs her to have it in but now she can keep her binki in all by herself.

She is getting cuter by the minute. We had a fun nurse today so we put a hot pink bow in her hair (to match her bedding). Tonight is bath night and she gets new bedding so the cute nurse went and found new matching pink bedding and bows, just in case the night nurse doesn't share our passion for pink. : )

Her glucose levels are also doing really well (they were at 98 today) so now they only have to check her two times a day... which means less pricks. And, she had a great bowel movement! Most people probably wouldn't get excited about that but we've been waiting for it since the surgery because that was a requirement before she can start eating. The nurses probably thought I was weird for praising her for pooping... I guess it's a mom thing. We still have to wait the three days and see what the output is in her anderson tube but hopefully she'll be able to eat soon. At least we know her intestines are working well. We are so thankful for all of the great progress she is making.

Um, Joel said I need to "man up" the blog a little. I'm not exactly sure what he wants but I think if he were posting today's blog would have read something like this:

Olivia is doing well.

August 26, 2008

Olivia is doing great post-surgery! She is still on the ventilator but they are hoping to remove it by tomorrow. She's actually breathing fine on her own but the pain killers they have her on make her so relaxed that her breathing isn't completely stable so they are slowly weening her off of the ventilator (and the drugs).

When they checked her bilireuben levels this morning they were really low so she got to be taken off of the lights! When I got there she just had one little light on but within the hour they had turned that off too. I think the best part of being able to take the lights away is that she now gets to be snuggled up in blankets all day. It was so cute to see her all snuggled up, she was definitely enjoying it.

The surgeon came by to check her belly today. It's still really swollen but she's handling it well. He said that she's doing great and is exactly where they expect her to be. He seemed really optimistic about her recovery. She is going to be on an antibiotic for the next 5 days and he said that she will be able to start eating food in about 3 days. I can't wait for her to be able to have food in her tummy finally!

Thanks again to everyone for your concern. They asked that Olivia's visitors be very limited while she is recovering. Hopefully she'll heal quickly but we don't want to impede her recovery. Joel and I aren't even supposed to touch her very often. Hopefully we'll get to bring her home soon and we can finally show her off!

August 25, 2008

This is Olivia's "Surgery Day" picture. Darling, I know.

I got a call around 11:00 this morning from a surgeon up at PCMC. He told me that since Olivia had such a great weekend and her numbers (glucose, bilireuben, etc.) were looking so great that he wanted to do her surgery today. Of course I was scared but so happy that they were finally going to get it over with. I gave him our consent then sped down to the hospital to spend some time with her before the surgery.

The nurses were already prepping her when I got there but they let me finish doing her cares with them and then let me hold her until they took her to surgery. I had about an hour and a half with her before we had to wheel her downstairs. She was so cute to watch as we walked down the hall. Her eyes were wide open and she loved to see the new scenery. I guess staring at the other babies in the NICU was getting old for her.

They took her into surgery around 2:00 and said it would take about an hour. Joel and I waited in the waiting room and around 3:15 I was starting to get nervous. Right then we got a call from the nurse in the OR. She said they hadn't even started the surgery yet and that they had spent the last hour trying to get an IV in Olivia but weren't able to find a good vein so they would have to do another central line and then they would start. Joel and I went to get some food and when we came back they said they had started the surgery about 10 minutes before. So we waited for what seemed like a million years before they called again to say that the surgery was successful and that they were just closing her up. Huge sigh of relief!!

It was about another hour before the surgeon came to talk to us. Of course I had started to worry again but it turns out he was just trying extra hard to make her a cute belly button. What a thoughtful guy! He said the surgery went really well and that he didn't have any problems. There was some intestine and a small part of her liver in the omphalocele. He had to leave a small part of the cord attached to her liver because apparently it's better to have a little extra skin inside her rather than run the risk of making the liver bleed. He felt that it shouldn't be a problem and that she would have a great recovery.

Now we're just looking at the recovery. Olivia will be on antibiotics for about a week to make sure she doesn't get any type of infection. They will keep her stomach empty for a couple of days and then once she starts having bowel movements she will get to start eating food. I have a feeling that is going to be her favorite thing in the world. She's such a chunk already I can't wait to see what she'll be like once she can actually start eating.

We want to thank our family and friends who have offered up so much support, love, and prayers for our little Olivia. We know the Lord is watching over her and that our prayers are continually being answered. I am so proud of how strong Olivia is and what a trooper she is being through this whole process. We are so blessed to have her in our family now and can't wait to watch her grow. We love her so much.

August 24, 2008

Ok, I know I look completely disgusting in this picture but I don't even care because I am so excited that I finally got to hold my little Olivia today!!! When I got to the NICU the nurse said her levels were doing really well, which is always great news. She was telling me the updates and then slipped in that she thought it would be ok if I held her for a little bit. I think I almost jumped up and down with the excitement.

First they had to change her PICC line dressing and then we did her "cares" which consist of changing her diaper, checking her temperature, measuring her belly, and changing her oxygen gage to her other foot. They let the parents to this and it's a great way for me to sort of feel like I'm able to take care of her. While changing her PICC dressing she was starting to get fussy so the nurse told me to hold her binki in her mouth and she put a few drops of sugar water in at the same time. I have never seen a baby get so excited! She sucked that binki like it was going out of style. I should have taken some video of it because it was the cutest thing I've ever seen!

Anyway, after that the nurses brought the rocking chair over and unhooked a bunch of wires then placed Olivia in my arms. I can't express the absolute joy that I felt in that moment. Her eyes were wide open and she looked at me and I looked at her and I swear she smiled at me. It was the sweetest moment. For the next 20 minutes she was smiling and making the cutest little baby noises I've ever heard. Then she got sleepy, closed here eyes, and snuggled into me and fell asleep. The nurses let me hold her longer than they said there were going to and it was such a wonderful feeling to have my little girl in my arms. There truly are not words to express the love that I have for her and the joy that it is to be a mom.

We also got some great news today. Approx. 20-30% of babies with omphalocele's also have some type of genetic disorder. We have been a little concerned because there was a doctor that came and basically gave us worse case scenario right after Olivia was born. So, today the geneticist came to talk to me about some possible complications and what he thought she may or may not have. He started out by listing things that he was sure she didn't have which included Down's Syndrome, Trisomy 13 and 18 (the scariest ones). The he said there was a possibility of Breckwith-Weideman Syndrome but that he really didn't think she had it. He decided to do testing because he almost always does and also because she has small ears. I smiled and said, "Um, maybe you should see my ears. They are really small." So I showed him and he said, "Oh, if I had known that I probably wouldn't have even bothered with the tests. She just looks like you." Then he went on to say that he thinks she probably is just a normal, healthy baby and that we shouldn't worry about anything. ... What a huge relief!!

I know Olivia is only four days old but what a blessing she already is in my life. She is the sweetest little baby and I can't believe how strong and patient she is. She has already been through so much and still has to deal with a big surgery but she's so amazing and I know she'll be a fighter and will recover quickly so we can bring her home.

August 23, 2008

We got to visit with Olivia for a little while this afternoon. She had the PICC line in today and the nurse said they were able to get it in in about 5 minutes. They did it with the x-ray so they knew exactly where the vein was. Hopefully this will make it easier for them to give her nutrients and her medicine and they won't have to stick her as much. Her blood sugar keeps going up which is great news too. She's still under the lights and the levels are still rising but they are still within an ok range and hopefully will start going down in the next few days. The nurse mentioned that she overheard them saying something about doing Olivia's operation on the 28th but she wasn't sure if that was actually true. We were going to talk to the NP about it but another baby in the room was going to have laser eye surgery so all of the parents had to leave. Hopefully we'll get a chance to talk to them about it later tonight.

The nurse turned the lights off for me for a few minutes so I could see Olivia's cute little face. Her eyebrows are gone now from wearing the eye mask so much but she's still darling. She's got little eyelashes that curl upward and are completely blonde just like mine... poor thing. She also likes to sleep with one arm up next to her head. She looks like she's just chillin most of the time. Olivia gained 2 oz. yesterday and we love how chubby she is.

August 22, 2008

We didn't get much time to visit with Olivia today and while we were there she was completely sedated and sleeping. The nurses must have liked her hair because they had washed it and flipped it in a cute little wave on top of her head. It looked so cute.

Her blood sugar was up to 73 today which is awesome! That's one less thing to worry about. Her bilireuben levels are still going up but still not to a level that is a huge concern. One of the reasons it's harder to control this on her is because it usually comes out through the stool but since we aren't able to feed her, she doesn't have a way to pass things though. Hopefully that means it will just take a little longer than a normal baby but she will still be fine.

They also tried the PICC line again today but didn't have any success. Her little veins are just too small. They are going to try to do one with a scope tomorrow and if that doesn't work, they will have a team of surgeons do one with a small incision close to her heart. Very scary but they assure us it is safe.

She is still on the schedule for surgery and will probably have it in the next couple of days. They want to make sure she's stable so they aren't in any big hurry.

She looked so tiny and helpless today. I know it was because she was sedated but it makes my heart ache to hold her and comfort her. It's hard to be away from her and know there's nothing we could do even if we were there. We are continually praying for her and know that the Lord is watching over our sweet baby girl. No matter how prepared we thought we were for this, it's harder than I ever could have imagined. Our hearts are so full of love for our sweet Olivia Isabella and we have faith that she will recover quickly and we'll be able to bring her home soon.

August 21, 2008

During the night they checked Olivia's blood and found that her bilireuben levels were high so about three hours after birth they put her under the lights to see if that would help. The levels continued to rise throughout the day so she continues to be under the lights and is being monitored closely. Even though the levels are high, she is no where near dangerous levels and they hope they will decline soon.

Due to the omphalocele, they want to keep her stomach empty so they had to insert a tube in her throat and a line in her vein to give her nutrients and antiobiotics she'll need to make sure she doesn't get any type of infection. They also did an echocardiogram and and ultrasound to check her kidneys. Both came back a few hours later showing no abnormalities, which was a huge relief.

Her little body is very swollen, especially her head from going through a somewhat traumatic delivery. She has pin-pricks all over her from having so much blood taken for her tests. Her poor little fingers are covered in band-aids and bruises. Her blood sugar started out really low so they put her on some sugar water and also gave her a medication which helped it start to stabalize it. She was on the "add on" list for surgery but didn't end up getting it.

Later in the night they Nurse Practictioner came in to discuss putting a PICC Line in her and to get our consent. It's kind of scary but as she was dicussing it with us, a team was trying to get another IV in her and wasn't able to so we felt this was they only way for her to get the proper care. The team came by around 11 PM but weren't comfortable with any of the veins they found so decided to let another team try in the morning.

The nurses said she doesn't like to be touched or have her diaper changed but I was able to change it and she was just fine. I think she just wants her mom and dad around her. They keep giving her some medicine to calm her and it also is supposed to make her forget everything that's happening so she won't know what pain she's going through. I hope it really helps.

It's so hard to not be able to hold her and comfort her. We wish there was more we could do but are thankful she is in such great hands. The staff in the NICU is great and they are very welcoming and provide as much comfort as possible. It makes the situation a little bit easier to cope with.

August 20, 2008

At 9:57 PM on August 20, 2008 Olivia Isabella Woodall was born. She weighed 7 lbs. 9 oz. and was 19 1/2 inches long.

She was taken directly to the NICU via a window in the delivery room and we weren't even able to hold or see her. It was frustrating and sad but we also knew that her condition would prevent us from having much interaction in the beginning.

The transport team brought Olivia in to let us see her for a few minutes before taking her from the University Hospital NICU to Primary Children's Medical Center NICU. We thought she was absolutely darling, even with all of the tubes are wires covering her. She has a full head of hair and a darling little face. She was peacefully sleeping and we didn't get a chance to hold her because the room was too cool and the visit was much too short. Joel accompanied her to the NICU and stayed around for reports and to make sure she was ok before he came over to brief me on her status.

He said she was stable and that so far everything looked good. He didn't get the chance to hold her either but I was glad he was able to stay with her for a little while and to make sure she was ok.

Background

Olivia was born with a condition called an Omphalocele.

An Omphalocele is a birth defect in which part of the intestine, covered only by a thin transparent membrane, protrudes outside the abdomen at the umbilicus. The underlying error is a failure during embryonic development for a section of the intestines (the midgut) to return from outside the abdomen and reenter the abdomen, as it should. The opening in the abdominal wall cannot close because, to do so, would pinch off part of the intestines. An omphalolocele must be repaired by surgery.

With an omphalocele, the part of the intestine that sticks out is covered by two thin transparent membranes called the amnion (the amniotic membrane) and peritoneum (the abdominal membrane). The liver and spleen may also be within the omphalocele.

An omphalocele is caused by an error in the normal embryonic development of the intestinal tract. During embryogenesis (the time during which the embryo forms), there are initially three distinct portions of the intestinal tract (the foregut, midgut and hindgut) that extend the length of the embryo. Much of the midgut is then herniated (protruded) outside the abdomen at the umbilicus (belly button). The midgut later reenters the abdomen (belly) and the opening in the abdominal wall closes. The error responsible for an omphalocele is a failure for the midgut to return and reenter the abdomen. The opening in the abdominal wall cannot close because to do so would pinch off part of the intestines.

We found out about her omphalocele at our first ultrasound (around 18 weeks). It was very scary at first and we read a lot of things that really scared us. Luckily we were introduced to an excellent team of doctors and received excellent care throughout the pregnancy.