Friday, October 31, 2008

Busy Day

We went to the Dr's rounds this morning to hear what the Dr's have to say about our daughter and her progress. Funny enough and considering it is halloween, most of the Dr's in the meeting at least had some kind of ear like costume things on. The lead Dr, had a full Winnie the Pooh suit. We couldn't resist taking a picture. The Dr's are going to increase Nayeli's food intake from 24 to 30 cc's, which gets her half way to the 60 cc's they want her eating before we leave. In addition to the food, we will have to give Nayeli other special nutrients to promote healing and growth as she gets older. The Dr's also decided not to put Nayeli on a c-pap and have also decided against a permanent tube for now. Instead, starting today, they are going to give her Lasics. If you dont know, Lasics is used to make Nayeli urinate more in hopes it will keep her fluid down and even better, ultimately get rid of it forever. So, for now, it is a test to see how it goes.

During the day, the Dr's decided Nayeli did not need to be in her radiant warmer bed. This bed maintains her temperature for her, but since she is doing well, they decided to try her in a regular crib. This will force Nayeli to regulate her own temperature, which is an added stress and more burned calories for her. They tested her for several hours in the radiant warmer (with it off) before moving her and she did fine. So, our baby girl is now in as normal a baby bed as one can get in a hospital. While Nayeli's primary care nurse Mardi got the new bed ready, I got to hold Nayeli for only my second time. I love holding her! Liz also held Nayeli today. Liz was pretty good on reading Nayeli a few times today. Nayeli wouldn't stop crying. Liz checked her diaper three times and those three times Nayeli had either peed or pooped.

Liz's dad brought Twinkie and Molly for a visit with Mom and Dad today also. It was great to see our "other" babies and very therapeautic for us. We only got to see them for a short time, but it was awesome as it feels like we have not seen them for months. As you could have guessed, Liz started to cry when her dad was putting them back in their crates to take them home.


Look at me I am a burrito for Halloween

Daddy I am going to cry no matter what you say!

Goodbye Radiant Warmer Bed!

Check out my new crib!

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Nayeli's First Bath

Yesterday they increased Nayeli's feeding from 16cc to 24cc every three hours. She has anywhere from 1cc to 3cc of residual but is doing fine on her feeding otherwise. One of the Drs. told us yesterday that they were thinking of putting Nayeli on a Cpap breathing mask to help her with her breathing. By the end of the day the Dr. decided not to because they think Nayeli is would just take it off. Usually the Cpaps are used for premamature babies. The Dr. also told us that they were planning on putting a permanent tube in her chest to drain out the fluid. The Dr. told us that the fluid is not milky and it's nothing to be concerned about. Later on the day the Drs. decided not to put the tube in her chest.

Her breating rate is still the same it can go from 45 breaths per minute to as high as 145 BPM from the average of what the machine multiplies it by. It's complicated to explain. The Dr's have told us it's the norm for all CDH babies and we are aware of that. Yesterday Shane and I took turns reading the Jungle Book to Nayeli. Shane also sang the song "Sailing" by Christopher Cross to her. Shane's mom played this song for him when he was a baby.

I got to hold Nayeli skin to skin yesterday also. It was an incredible feeling and bonding experience. Shane and I got to give Nayeli a bath for the first time. Nayeli was not liking it at all. She just had a dose of morphine because she was crying for over two hours. The calming effect Shane and I have on her feels awesome. When Shane and I walk in the room and she is crying, we talk to her, touch her, and give her a binky and she almost always stops crying. Shane and I are learning to read her wants and needs every day. The nurse thought giving her a bath would be calming. It was making Shane and I nervous and we were sweating alot. I also starting to leak alot of milk from hearing Nayeli cry. After we got Nayeli dry in warm blankets she stopped crying. We are praying each day that she gets better and her fluid in her chest dissapears.




Like father like daughter....note the hairstyles



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Wednesday, October 29, 2008

Family Meeting

In the midst of all the excitement, we forgot to mention both of our parents are gone. My parents went back to Buffalo, and Liz's parents are back in Southern CA. My mom plans to come back some time down the line. Liz's dad will be back Thursday night and will continue to help us out and bring our mail and some yummy home cooked food. Liz's dad is also taking care of Twinkie, Molly, and Max. We also want to thank Abe Teng for checking on Max while Liz's dad is back in LA.

Today, at 2pm, we met with the Dr's, Nayeli's primary Nurse Mardi, and the hospital Social Worker. This meeting was set up by the hospital staff to go over how our daughter is doing overall, and to discuss any other questions Liz and I have. Right before the meeting, we learned they had just done an x-ray on Nayeli because she was breathing pretty heavy. They discovered Nayeli had more fluid in her chest and they had to tap her chest again. The nurse told us they removed 40 mils of fluid from Nayeli's chest. It was obvious she was breathing a lot easier. We had noticed her breathing heavy last night and mentioned it to the nurse. The nurse thought it was normal because our daughter had just come off the vent. I was a little upset about this and felt our baby girl was suffering all night due to this fluid. We had asked them if they were going to increase their x-rays to stay on top of the fluid build up and they said they already did it once a day. This was not what I wanted to hear going into our family meeting. Liz had to calm me down before we went in there.

So, the meeting. As mentioned above, we first talked about the fluid situation. The Dr's still swear it is not a concern to them and is normal after a surgery. They said there is still a gap in Nayeli's chest created by the surgery and this area almost always fills with fluid. The question still remains, is the fluid lymphatic fluid caused by Nayeli's diet, or is it post surgery fluid. The Dr's said they are not sure and it will take more time to tell exactly what it is. They assured us it is not a concern and said they will closely monitor it.

The Dr then talked about how long they think Nayeli will be in the hospital. At a bear minimum, we are looking at at least one month. This will depend on how Nayeli is doing with her breathing, and how soon they can wean her off of oxygen all together. Another factor is her feeding habits and how much food they can get her eating. Right now, she is eating 16 cc's every three hours. This is up from 8 cc's a week ago. Liz is breast pumping like a champ and is having a hard time keeping up with Nayeli. We are hoping her milk production improves with Nayeli's appetite. The Dr said normal children eat between 50 and 60 cc's a day. We are still a ways from that. Another goal is to get Nayeli breast feeding and taking a bottle if I feed her. The Dr said there is chance Nayeli could go home with us when the time comes, with a feeding a tube. If this were the case, she could have this tube up to the first year of her life. The Dr said this would not hamper our daughter or her activity. The Dr mentioned that all CDH babies have difficulty eating and it varies case by case. He mentioned that when the intestines, bowel, and other items in Nayeli's chest are pushed down during the surgery, they typically do not end up where they are supposed to be. This causes the feeding, peeing and pooping issues. On a great note, Nayeli took a poop today that was mixed between the mincomium poop and a regular poop. This is very important as it shows she is eating and processing her food.

We then talked about Nayeli's breathing. The Dr said a normal person functions at 21%oxygen. Right now, Nayeli is being given between 28 and 30%, which is pretty good considering. Their goal will be to get her to 21% and off of all oxygen support. We then discussed Nayeli's rate of respiration (breaths per minute). Last night, Nayeli was breathing between 110 and 125 breaths per minute. This is pretty high, but she was handling it well. A typical baby breaths 40 to 60 breaths per minute, and the average CDH baby breaths between 60 and 80 breaths per minute. The goal would be to get Nayeli's breathing rate slower, but the Dr said her rate may faster than the norm. They will monitor this and try to figure out what Nayeli's norm is. On a side note, I went and checked on Nayeli after our meeting to see if the fluid drain helped her breathing rate. I noticed it was fluctuating between 89 and 110 breaths per minute. Better, but still a bit high so we pray this improves.

Nayeli had an echocardiogram yesterday and this also came up in our meeting. The Dr said Nayeli has an expected amount of pulmonary hypertension (PH) as "all CDH babies have some level of this." The echo measures the lung pressure of the "good lung," which is Nayeli's left lung. With CDH, this pressure increases as the baby works a bit harder to breath. The Dr said they are not concerned with Nayeli's level of PH right now and as with all the other stuff, they will continue to monitor it. The Dr added that if the PH gets more noticeable, they may have to give Nayeli Nitrious Oxide (N-O) or a medication that sometimes helps this. We pray for the best with this and also hope Nayeli does not have to take more medication.

Regardless of where this road leads us, we love our daughter so much and we will do what it takes to care for her. We thank you all for your continued prayers and support. It is very uplifting and keeps our chins up in this fight. We love you all!

The nurses can be kinda loud.....shhh keep it down I am trying to sleep


I am hungry.....and I am going to cry until someone gives me a Big Mac!
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Happy 1 week Birthday Nayeli!


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Tuesday, October 28, 2008

I AM THE BOSS!

The night before last night, the social worker allowed us to stay in a waiting room about 20 feet away from the area our daughter is. The social worker told us this room is rarily used for sleeping and we needed to vacate the room by 0900 am. Yesterday afternoon, I went and talked to the social worker and begged her to let us stay in the room at least the rest of the afternoon because we had a pretty sleepless night (last night). The social worker allowed this but didnt prefer us to sleep in the room overnight. We did it anyhow, but woke up really early and I cleared everything out of the room so it looked like we just showed up early and didnt sleep there. We are having a hard time leaving the hospital. It will get better for us in time.

So, this morning, we woke up and went to visit our daughter after I put everything in the car. When we walked in the room, the nurse asked us if we noticed anything unusual about our daughter. Liz immediately noticed the vent was off of Nayeli and she started to cry. The nurse told us our baby girl had pulled her breathing tube out a while before we came in. As mentioned in a recent post, we were trying to keep her hands away from the breathing tube because she kept touching it. Nayeli is indeed boss and the boss said she was sick of being on a ventilator. Initially, we were both scared and asked if she was going to be intubated again. The nurse said the Dr was aware of what had happened sand said she was doing just fine without it. So, at this point, they have decided to leave the vent off to see how she does. We were so happy we both started to cry. It was also awesome because we finally got to see her cute little mouth and chin. They still have a breathing device on her nose giving her some nice rich oxygen, but she is now breathing on her own! We thank God for this blessing and ask him to make it be forever.

So, after this discussion, the Nurse said, "Would you like to hold her?" I looked at Liz and told her to go first as she obviously earned this right! I am so thankful for my warrior queen and princess, they are amazing girls. Before we could hold her, several Dr's came in and said we would need to step out for a bit so they could do xrays and an echocardiogram to see how Nayeli was truly responding to being off of the vent. We were dissapointed, but I did take a quick video of her off of the vent.

We finally left the hospital and went to a place Alex Hidas arranged for us. We are so thankful this opportunity presented itself. I went there to meet Alex's "brother's mother" (who owns the home) last night. I hugged her and cried when she told me, "I know your situation, years ago when I came to this country someone helped me and now I am going to help you."

In closing, it took us a while to update this because we have been taking turns holding our daughter all day. What an amazing feeling. I cried when I watched Liz hold her, and she cried when I did. Very emotional day for us. We are so thankful....God is really watching over us and our daughter. We will continue to pray that things continue on the path of recovery for our baby girl. We are so thankful as the only person that can give us these gifts and the miracle of our little girl is God.
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Pretty in Pink

Yesterday, Dr. in charge of the NICU met with us. The Dr told us our daughter is doing well and continues to be stable. The Dr said Nayeli still has some fluid in her chest and he said it is still considered normal due to the surgery. He said they are monitoring it and it is not affecting Nayeli's breathing or stats in general. They are hoping the fluid disapates in time and that they do not have to drain her again as this is a very painful procedure for our baby girl. The Dr said they are now feeding Nayeli 8cc's of Liz's breast milk every three hours. Nayeli has a tube inserted in her mouth which runs down to her tummy. The tube is raised above Nayeli's head and there is a food basin attached to the top of the tube. The nurse pours Liz's breast milk into the food basin and it drops into Nayeli's belly via gravity. Feeding is going ok, but the nurse said there is still quite a bit of food in her belly a while after feeding. So, they have been either suctioning the food back out and re-feeding her the food, or just feeding her new milk. They say this process can be slow but Nayeli is definitely eating portions of the food. Along with this, Nayeli is starting to take poops on a regular basis. These poops are of micomium variety and they expect these poops to turn to normal poops soon. At one point, the nurse had Nayeli's diaper off. Nayeli started a mincomium poop, which looked like a huge bubble gum balloon. The balloon expanded to to about an inch and popped like a poop balloon. Pretty funny stuff. Liz tried to get the camera to take of photo of the poop balloon, but it popped too fast.

The nurse also said Nayeli is starting to pass gas, which is also a good sign. Godfather fart master Alex Hidas was very proud of his god ddaughter's farting skills. The nurse was going to give Nayeli a bath last night. We were very excited and had the video camera rearin to go. The nurse said there was a slight split in Nayeli's blood gases (oxygenated blood). They monitor this by putting a device on her foot and hand, and measure the split between the two halfs of her body. The Dr came in and talked to us about pulmonary hypertension. We are very familiar with this term and it scares the crap out of us. The Dr said Nayeli has a very small amount of hypertension and they are not concerned about it at this point. As with the fluid, it is something they are monitoring. Based on this, the nurse decided not to give Nayeli a bath. We are hoping this happens tonight!

On another good note, nurse "Kim" this morning said Nayeli only needed two doses of .32cc's of morphine last night. This is very little and shows Nayeli is healing well and her pain appears to be diminishing. Our baby girl is quite the fighter and demonstrates this daily. She has started trying to pull at her ventilator tube. Last night, Liz and I were holding Nayeli's feet and also took turns putting our hands between Nayeli's right hand and her ventilator tube. Nayeli started hitting our hands because we were blocking her from getting to her ventilator tube. She is so strong and is able to knock our hands awayb with both her feet and hands. It was obvious she was getting pissed off at daddy and mommy and she started making her well known boo boo face. When Nayeli pulls at her ventilator tube too often, the nurse has been authorized to give her a small amount of Adavan to calm her down. We do not want our baby girl pulling her breathing tube out.

Liz and I decorated Nayeli's bed with all kinds of pink stuffed animals to include an elephant, a teddy bear, and a kitty cat. Breath of Hope gave us two pretty pink blankies and Liz was very excited to put the blankies in Nayeli's bed. One blankie is in the bed, and the other covers our baby girls feet and keeps them warm and snuggly. Cassi and Brian (Angel Elli's mommy and daddy) gave us a beautiful crib cross. The cross has a cute pink bow and asks God to protect our baby. The cross has been hanging in Nayeli's bed since day one! Thank you Breath of Hope and Cassi and Brian for the beautiful gifts we used to decorate our baby girls bed. I took a video of our latest nursery decor.

We will be going to the morning briefing pretty soon and will give you an update. Keep the prayers and support coming, we really need it as this is totally effecting our sleep. Several people have pointed out that we both look very tired.

Nayeli's surgery site

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Monday, October 27, 2008

Our Little Princess


Last night they did the ultrasound on my leg and the Dr. said there was no blod clot. Shane and I were so relieved to hear this. We were anxious to see Nayeli so we took my parents with us. She was moving around and looked comfortable. They took the IV out of the side of her head and tried to put it on the other side of her head. It didn't work so now she has two little bald spots on the front of her forehead. I put a turqouise bow on her head for a minute to take a picture. She looked adorable with her little bow. She is so beautiful. Our little Princess. The nurse told me I could leave the bow on but I decided not to, I dont want it to bother her. The turqouise ribbon is symbolic of the Offical CDH awareness day, which is on March 31st every year.

We asked the Dr. lots of questions about the fluid. The Dr. said they would take another x-ray in the morning since she is doing fine right now. I asked why we should wait until tommorow because I am concerned she has more fluid now. The Dr. said it would show on her stats and she would make her boo boo face if she was uncomfortable. The Dr said they are relying on our daughters actions to tell them what to do. The Dr. said they would take another xray first thing in the morning.

About 7am, the Dr came in to talk with us about Nayeli. I aksed the Dr. if they had taken an xray of her yet and she said no. The Dr. said they would soon. It is now 7am and still no xray. I am getting impatient. This is hard for us to sit back and not know what is going on with the fluid. They did tell us not to worry. That is extremely hard to do.

At 0900 everyday, the Dr's have meetings and discuss each baby. Perhaps a weird coincidence, but right when we walked into the NICU, they were talking about our daughter. The Dr's said our daughter is stable and doing well. They said she is still taking morphine as needed through an IV line, which is given by the nurse when Nayeli tells her she isnt feeling good. The Dr's said they did an x-ray this morning and there is still a small amount of fluid in Nayeli's chest. They said they are still not concerned about this fluid and will continue to monitor it. They said if it builds up again and presses on her heart and lungs, they will drain her again. Based on this, we assume the lab results have not come back. They said the x-ray did not show a substantial increase in fluid build up and it looked the same. The Dr said they expect this fluid build up after any type of surgery. They explained that there is a small space in Nayeli's chest after the surgery due to the digestive things being moved down. The Dr said that when there is a space such as this, the body feels the void and will fill it with fluid.

Dr's said they plan to slowly wean Nayeli's assisted oxygen with the ultimate goal of getting her off of the oxygen machine.

The Dr said they will also start feeding Nayeli small amounts of my pumped breast milk. The Dr said they are going to start by giving Nayeli a tablespoon of mommy's milk to see how she responds to it. Dr's also said they plan to give our daughter a PIK line. A PIK line is a more permanent IV so they dont have to keep poking at our baby girl on a daily basis to give her needed meds and nutrients, etc.

Lastly, the Dr informed us that Nayeli is peeing regularly, and has now taken several poops. The Dr said this is good news because it shows that her body is functioning properly.

We will keep you all posted as stuff comes up. We thank God for giving us good news today. We pray that he will continue to help Nayeli get stronger and continue to fight. Keep those prayers and support coming. We love you all for this.

Bad Hair day

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Sunday, October 26, 2008

Nayeli update

Nayeli is our precious little warrior and one heck of a fighter.

We went to visit our daughter and the Dr. came in to speak with us. The Dr. told us Nayeli is doing just fine. The Dr again said she is not concerned with the fluid in Nayeli's chest. She said they drained three tablespoons from her chest, and left about three tablespoons still in her chest. The Dr. said they left some of the fluid in her chest because they didnt want to shock her too much by taking it all out at one time. We personally do not care for them leaving fluid in her chest as it is still pressing against Nayeli's lungs and heart. We understand though why they didnt drain it all at once. I asked the Dr. if they are going to increase their amount of x-rays to make sure the fluid isnt building up faster than they anticpiate as we do not want more pressure on our daughters heart and lungs. The Dr. pretty much said they do x-rays every day and that our daughter will tell them if she is having an issue by her stats dropping. I dont care for this approach, but again, she is the Dr and she knows best. All in all, Nayeli seems back to her normal self and is making less boo boo faces. As soon as the Dr's give us a definitive answer, we will let you all know.

We thank everyone for their support and prayers, we are still pretty stressed about this situation. To boot, Liz was supposed to be discharged today and the Dr. became concerned about leg pain she was having. The Dr said she may have blood clots in her legs and stopped her discharge and ordered an ultrasound. Liz just had the ultrasound and we have not got a confirmed response yet. The ultrasound tech did say the ultrasound looks negative.

More to follow.

Urgent Update

Our morning started off great spending some time with our baby girl. She is such a beauty!!! Nayeli is doing great, they are planning on weaning her off of the ventilator in the next day or so. They also stopped her morphine drip and are now allowing Nayeli to tell them when she needs some medicine by making her "boo boo" face. She ended her morphine drip on the lowest setting, at 7 mcg. Now, when she needs some medicine due to expected surgery pain, the nurses are giving her .32 mcg. This dosage is given to her every 4 hours.

While I was typing this, one of Nayeli's Dr's came in and she looked pretty serious. Both of our hearts stopped because we have became familar with this "medical facial expression." She told us Nayeli has fluid in her chest between her lungs and heart on the left side of her chest (surgery side). She said they do x-rays almost every day and noticed this build up today. The Dr. said they suspect the fluid is one of two types of fluid. The first, and likely the cause, is fluid from the surgery. The second, could be a form of lymhpatic fluid that builds up due to nutrient "fluid diet" they are giving her. One way or the other, they have to tap her chest, take the fluid out, and send it to the lab for testing to determine what type of fluid it is. If it is surgery related fluid, they will monitor it and drain as needed. If it is caused by Nayeli's diet, they will change her diet to make the fluid build up stop. The Dr. said they have to determine if Nayeli needs a permanent tap until further notice. The biggest concern, which scared us both to death, is that the fluid started pushing on Nayeli's lungs and also started to push her heart back to the right side of her chest. The Dr. said she will tap Nayeli's chest and continue to monitor her. She said she will have more answers for us in a few hours, and at the longest, definitive answers by tomorrow morning. Lastly, the Dr. said she was not worried about this and said it is common and easy to deal with.

Please pray this doesnt become more serious than it already is. Liz and I are now on pins and needles even if the Dr. said she is not worried. Luckily, the hospital found a room to board us in tonight so we can stay as close as possible to our daughter.

More to follow.

She is so Beautiful





Saturday, October 25, 2008

BIrth Weight 7lbs and Height 21 inches

She is our ..........Brown Eyed Girl!!!

Last night I finally got some sleep. The nurse gave me ambien and I was out in 30 minutes. Shane checked on Nayeli at midnight and they were washing her hair for the first time. She has an adorable full head of soft chocolate brown hair! Shane got to see her eyes open while he was there. I am so glad I took the ambien because it was getting late last night and I still couldn't sleep. I wanted to get up to breast pump because I am supposed to do it every three hours, but the nurses told me one night is not going to hurt. I woke this morning feeling great!

This morning when were visiting Nayeli the nurse told us Nayeli is getting 10mcg of morphine instead of 15mcg and they took her off of Pavilon which makes her not move or open her eyes. We saw Nayeli open her beautiful brown eyes today and she wiggled her hands, feet and toes. We even saw her make a boo boo face (as Shane calls it). The nurse showed us how to take her temp, and put ointment on her dry feet, chest and lips. I was so excited to do it that I forgot about my surgery discomfort. Nayeli opened her beautiful brown eyes for us a couple of times. It was the most precious moment for us. We are so happy to see her take these steps forward. We continue to pray that our baby girl continues to fight this battle against CDH.

Mommy and Daddy with me after a good nights rest.

Mommy giving me a massage with ointment for my dry skin

Daddy and I have matching piano toes

Stop messing with my hair!

Mommy....Daddy....What are they doing to me?


Yesterday, I met with the hospital social worker Stephanie. She introduced me to a fire fighter and his wife, who were from out of state and were here for a check up on thier son. Their son is now 6 months old and had a pretty severe case of RCDH. He was still on oxygen which simply keeps his C02 levels high, and he is doing wonderfully. I was happy to see a baby that successfully fought CDH. I shared it with Liz and she was happy to hear the news.

Friday, October 24, 2008

Nayeli is out of surgery

Dr. Mckenzie came into our room around 330pm and told us Nayeli's surgery went well. Nayeli didn't need a gortex patch for her repair surgery they stitched her up using some of her muscles. Dr. Mckenzie showed us pictures of her right and left lung and also where they stitched the repair hole. Nayeli had her stomach, intestines, colon and spleen up in her chest no liver. The Dr. said that in her utero ultrasounds it showed part of her liver was up but that wasn't the case. We were so happy to hear this. Shane and I held hands as we were listening to her give us all the news. We were soaking it in. Dr. Mckenzie the next 5 days are going to be like a roller coaster. Nayeli will have good days and bad days. I asked when would Nayeli be out of the danger zone. Dr. Mckenzie said after 5 days. We are praying for Nayeli to remain stable and have a good recovery from her surgery. As the Dr. left the room I wanted to scream and yell at the top of my lungs THANK YOU GOD! I don't have much of a voice from sleep deprivation so I did it anyway. I asked the nurse if I can get something to help me sleep. She said she would get the Dr. for me. I need sleep and I can't seem to be able to get any with all my emotions. I have never had a problem sleeping. I want to get my rest so I can be here for Nayeli. Shane went to grab our parents that were waiting in the waiting room brought them. Harris was also visiting and we shared the news with them.

This has been a good day and I am taking the good news and will continue to pray for my preicous Nayeli. We are so grateful for everyone who have been supporting us, through emails, phone calls, and on the blog. We couldn't do this without you. We love you all so much. It brings tears to my eyes reading all of your comments for us. We feel so loved by all of you and we appreciate you being here for us. Thank you to all and please keep praying for Nayeli. She is going to kick CDH booty, I just know it!!!

Nayeli is in Surgery

We went to see Nayeli this morning after only having three hours of sleep. We were up with Nayeli til midnight last night. I am so tired but can't sleep. Shane is also having a hard time sleeping. When we were with Nayeli this morning the Doctors were doing their rounds and told us that Nayeli would be having her surgery today and they would call us when they were ready to take her. We got the call around 11am and they said around noon today. We went to go see Nayeli before they took her to surgery. We were both trying to be strong. I bursted into tears and Shane was so strong. We held each others hand as they took our baby away. They asked if I wanted to give her a kiss. I dont know how I did it but I am not tall enought to lean over on her bed she is on. I leaned over my surgery area and kissed my baby girl. I held the three rocks our Pastor Coli gave to us and I prayed for God to watch over her and give her the strength during her 3-5 hour surgery.

Dr. Mackenzie seemed very optimistic and said Nayeli was very stable. Based on this, they decided to take her to the operating room downstairs instead of doing the surgery in NICU. The Dr. said they only take the most stable babies down to the OR, but like to do this because they have access to more equipment. The Dr. said they are very pleased with how Nayeli is doing, and after reviewing x-rays and her echocardiogram, they feel her CDH may not be as severe as originally diagnosed. So, they will first use a camera system to attempt to fix Nayeli's CDH. They suspect the hole in her diaphragm is smaller than expected and this allows them the opportunity to do a less intrusive surgery. The Dr. said that if this does not work, they will have to do the normal surgery by making a larger incision in her abdomen. This was great news to us and we pray the lesser instrusive surgery works. After they took our daughter to surgery, we went back to our room and have been trying to relax, while anxiously awaiting a call from Nayeli's nurse or surgery team. Nayeli's nurse, Mardi, said she would call us as soon as she heard something. So for now, we have to wait. We are both very nervous and worried about our daughter. Please pray for, not only for our daughter's surgery taking place right now, but also for her recovery as this will be a very delicate time for her.

Thanks for your continued support. It means so much to us.

Daddy holding Nayeli's hand

Mommy holding Nayeli's hand

Mommy kissing Nayeli before she goes into surgery

Nayeli being taken into surgery

Nayeli's grandparents visit!

Yesterday afternoon Nayeli's stats went down. Mardi Nayeli's daytime nurse said it was because Nayeli didn't like being suctioned. We asked a bunch of questions. I started to figure out what each beeping or alarm sound was for. I was a bit freaked out at first but Mardi said not to freak out unless I see her freak out. Mardi said if for some reason her stats are not well the Doctors would wait to do the repair surgery for a day or two.

Last night, our baby girl was stable enough for her grandparents to briefly visit her. Here are the pics
Shane with Grandma Darlene

Grandma Vicky and Grandpa Telly

Thursday, October 23, 2008

Surgery day set

Today, one of UCSF's surgeons came and spoke with us about Nayeli. She said Nayeli is very stable and doing a lot better than they anticpated based on the charts they looked at before she was born. Based on the fact Nayeli is doing really well, the staff has decided to perform her CDH repair surgery tomorrow around 1 or 2 pm. The surgeon said Dr. Farmer is going to perform the surgery. This makes us very happy as Dr. Farmer is very reknown in this field and has done many of these surgeries.

If you haven't prayed for us yet, now is truly the time to do so. The first three days after Nayeli's surgery will be critical and could be a roller coaster ride for us.

Thanks for all of your kind words and support. It is very appreciated. We read your comments daily and it gives us the strenght to go on!

Nayeli is stable



Yesterday after we went to see Nayeli's nurse Anna. She is very nice and told us the Dr. would come and talk to us in a while after he was done doing rounds. I was trying so hard to go to sleep so I can meet with the Dr. but I guess I was too stressed and excited over Nayeli and what the Dr. was going to tell us. I couldn't sleep. I had nurses and Dr's checking in on me as well, so it made it hard to sleep anyway. I guess I was trying too hard to rest. At around 2pm the Pediatric Surgeon came and talked with us for over an hour and told us that Nayeli is doing well. He is very happy how she is doing. They have her on the ventilator set for 20/3 and she is taking 56 breaths on her own. Her heart rate is at 135 and stable with no signs of pulmonary hypertension. The Dr. said that if Nayeli is doing this well in the next day or two they will do the repair surgery. The Dr. told us that things can change and we know and are prepared for that. The roller coaster ride is just beggining. The Dr. called it the honeymoon stage.

The breast feeding nurse came in around 3pm and showed us how to pump milk. Shane likes this because he gets to pump me for milk. We enjoy doing this together.

Our parents came in for a visit at 5pm. I ate dinner and finally fell asleep for 2 hours until the nurse and Dr. came back in to check in on me. We went to visit Nayeli for a couple of hours and I sang with my hoarsy voice and shane talked to her. Nayeli's nurse told us Nayeli was doing fine. I had to go back to the room for the Nurse to check me. I slept for 6 hours and feel better today. We are waiting to hear fron the Dr. and I am waiting to get the cathether remnoved along with my oxygen so I can go spend the day with Nayeli.

Pics

Shane gets ready for Liz to go into surgery


Nayeli before she goes to NICU


Mommy holds Nayeli's hand before she goes to NICU


Firt Family Photo (Liz with only 4 hours of sleep in 2 days)

Wednesday, October 22, 2008

Nayeli has arrived!

After 20+ hours of labor and over 4 hours of pushing. The Drs. told me that Nayeli was not going to come out vaginal birth. They wanted the position of the baby to be at a 5 and she went from -1 to a 0 in those 4 hours. The Drs. didn't think there was going to be much of a change. I asked at this point what is the safest for our baby and me. They said C section. I didn't want this but knew if I didn't Nayeli could face complications and I could get complications too. During the pushing Shane didn't leave my side and was such a great coach. I think I squeezed his hand so hard that he didn't know what to do. He was by my side, I am so lucky to have such a wonderful husband.

At 6:54am Nayeli arrived. Shane was by my side during surgery. We heard Nayeli cry and we know this is a great sign. I bursted into tears and all of the physical pain I was enduring disappeared. The pediatricians were waiting for Nayeli. They quickly stabiilized her. They brought her back in for me and Shane to see her. We were both so happy. Nayeli is a miracle! Thank you God for giving us this miracle. We know the storm isn't over so we are praying that God gives Nayeli the strength she needs to fight CDH. We are waiting to hear from the Doctors about Nayeli's update.

We were waiting in the recovery room to hear if we could go visit Nayeli. The nurse told Shane he could go but I couldn't because there was not enough room for a gurney in the NICU. I told the nurse I could go in a wheelchair. The nurse thought I was crazy. I begged! She said not until tommorow because of my surgery. I begged once more. She said if I got dizzy or sick that would not be good. She also said I would have to stand on my own. With only four hours of sleep in two days. I prayed for God to give me the strength to see our baby. Once I see her I will try to sleep and rest. I got the strength not get dizzy, sick and stood up to go in a wheelchair. The nurse told me she has never had anyone do that 3 hours after an abdominal surgery. My love for Nayeli and with God giving me the strength I did it! I am now going to rest and get some sleep. Shane will too. He has been taking care of me and he has less sleep than me.

Thank you for your continued support prayers. I would post pictures but I am not allowed to get up and Shane stepped out. We will post soon and update on Nayeli.

Tuesday, October 21, 2008

Ever closer

My beautiful wife is sleeping peacefully right now. It is much needed sleep for her as she has already been through so much. As for me, having a tough time sleeping. Just took a nice hot shower and I am having a Miller light. Hopefully this will relax me enough to get a little shut eye.

The Dr's just came in and checked Liz's cervix again. This, comes an hour after the Nurse set Liz's Pitocin input to max again. Apparently this worked as Liz is now dilated to 10 cm. Our daughter still has not dropped all the way. She was at negative 1, and the Dr's want her at plus 5. They said they could manually get her when she is at plus 3, but Liz and I dont want them to pull her out for fear it could hurt her or cause more stress. So, the Dr. assured me she will not manually pull Nayeli out unless she sees a medical reason to do so.

So, the Dr. is going to give Liz another hour to sleep and will come back between 11 and 11:30 to check Nayeli's location. If our daughter had dropped, the Dr. plans to have Liz start pushing in our room. As Nayeli gets closer, they will move Liz to a different room and finish the birthing process. I asked the current Dr. staff about being able to cut our daughter's cord and take a photo of her. This Dr. didnt seem as enthused as the earlier Dr. that said this could be a distinct possibility. I am hoping this all happens, but I understand if it doesnt.

Thanks again for the continued kind words and support. We are truly thankful and love you all! Also, thank you to UCSF staff, they have all been amazing!

More to follow!

Motivation

While reading the bible today when Liz was napping, I found this verse and I have been reading it off and on all day. Liz and I also made a little shrine in our room. The stuffed animal is a beanie babies Daschund ofcourse. This will be Nayeli's first and very own Doxie!

2 Samuel 22:29

You, Lord, are my lamp
the Lord turns my darkness into light
With your help I can advance against any troop (or battle!)
with my God, I can scale a wall.

As for God, his way is perfect
The Lords word is flawless
He shields all who take refuge in him
For who is God besides our Lord
And who is the rock besides our God
It is God who arms me with strength
and keeps my way secure
He makes my feet like the feet of a deer
and causes me to stand on new heights.

He trains my hands for battle
my arms can bend a bow of bronze
You make your saving help my shield
Your help has made me great
You provide a broad path for my feet
So that my ankles do not give way!

Terri, just wanted you to know Liz and I have been keeping up with Ava's latest journey. This bible verse made me think of you and Brian.

20 Hours and counting

Not too much going on. Liz is finally getting some sleep and I got a few naps in myself. Sleep was awesome. As for our precious baby girl Nayeli, she wants to stay in mommy's comfy belly.

So, the update. Before the pitocin was started, Liz's cervix was dilated at about 2 or 3. After a night of pitocin, the Dr. checked her cervix again and said it was dilated to 5. This was after about 9 hours. Dr's thought this was a a little slow and they hoped it went faster with the introduction of pitocin. So, they upped the pitocin and after several hours, Liz was dilated between 8 and 9, pretty close and we were hoping it would not be much longer. But, for whatever reason, she stopped dilating. So, the Dr's had to do some other tests and said Liz's body must have adjusted to the pitocin and she stopped dilating. So, they lowered the pitocin dosage and let Liz's body recover, then upped it again in an effort to try and get solid contractions going again. To boot, since Liz has been in labor so long, she got a little fever. This has since been dealt with and her fever is gone. The latest measurement, Liz is dilated to 9 and they have upped her pitocin more. Dr's do not anticipate Nayeli joining us today but that could ofcourse change.

We want to thank everyone for their continued support and kind words. Please know that we read this several times a day. If you have called on the phone, I appologize if I have not answered. Please take a look at our blog if I happen to not answer. Thanks for understanding!

More to follow!

"Sleepless in San Francisco"



Last night, mine and Liz's parents visited us. It must have been a good luck omen as the nurse came in and moved us to a birthing room. The room is at least 5 times larger and we have our own fridge, jacuzzi, and a much more comfy couch for me to rest on. We talked and watched parts of one of the worst Monday night football games I have ever seen. I was hungry and ordered a grilled chicken pizza from Pascuals and two Miller lights. Nayaeli's godmother Amy Harris made a surprise appearance also. It was great to see everyone and thanks for coming out.

After they left, the Dr. started giving Liz Pitocin. This is where the sleepless in San Francisco moniker comes in. What a night, Liz had terrible contractions and her water ultimately broke. We were up and down all night long and got pretty much zero sleep. I have a very hard time focusing when Liz is in pain, it drives me crazy.

So, in the end of all this, Liz's cervix only dilated to 5. Half way there but not where they want her to be after two days. So, they said they would have to up her Pitocin level. Based on all the pain Liz has had to endure already and the lack of sleep, the Dr's are concerned Liz will not be strong enough to push when the time comes. So, the Dr's told Liz the best thing for her to do would be to get an epideral at this point. She is now comfortably lying down and moments from falling asleep. They have now upped her dosage of pitocin and think Nayeli could join us sometime this evening. No guarantees, but this is the latest on our precious daughter's impending arrival!

As for Nayeli, she is responding well to medications, the water breaking, and contractions. She is very stable and her heart is doing great. Your continued prayers, support, and happy thoughts are very appreciated. Thanks for all the wonderful support and nice comments.

We will update this as soon as more news comes.

Monday, October 20, 2008

Still waiting

I had the cervidil removed and it gave me some contractions but my cervix is still closed. They started me on pitosin. I am supposed to start feeling more contractions and the Dr. hopes for me to go into labor by tommorow. Nayeli doesn't want to come out she is too comfortable inside me. The Dr. told me I am going to start feeling stronger contractions tonight so there goes another night of sleep for me. I am going to try to rest but it's hard to do if I am going to be in pain.
Thank you for your continued support and prayers. Shane and I are reading all of your messages and it makes us feel stronger.

We're at UCSF (waiting to deliver)

We arrived at UCSF last night around 8:30pm. They wanted us to arrive at 8pm. We were late because we had so much luggage it looked like we were going to Cancun for a two weeks.

It turned out to be a good thing we were late. Apparently they had a pretty hectic day and ended up checking us in around midnight. The nurse told us they had several women come in who had twins and other stuff going on that set them back. They gave Liz a hospital bracelet to get the check in ball rolling and they put us in a room (more about that later). When we got to the room, Liz looked at her bracelet and realized it said "Elizabeth Ann Nelson" with a birthdate in 1981. Good thing Liz caught this! Turns out this person was not even at the hospital, which would have been a strange coincidence. Staff just mixed the charts up. Anyhow, the staff fixed the issue and finally were able to check us in around midnight.

Between our arrival time and midnight, I watched ESPN and we tried to take a nap. As most of you know, the hospital is not typically the most conducive place to nap. Way too much noise and people milling around. We tried to get on the internet last night but my wireless connection was being a pain. Liz also used our portable CD player to play some music for Nayeli. Nayeli seemed to like it and kicked several times.


Liz plays some relaxing music for Nayeli

So, let me talk about the room. As mentioned above, this place is super busy, as is any hospital I guess. The Dr. told us they have only six birthing rooms and then 4 post birth rooms. Apparently, the birthing rooms are pretty nice, with jacuzzi tubs and they are also pretty big. I am hoping we get a nicer room at some point. I am sleeping on this chair that turns into a cot. I have slept in dirt fox holes in the military in foreign places where people didnt like me that were more comfortable than this "cot." Anyhow, the Dr. said we will start the birthing process in our current room and as it progresses, she hopes to move us to a birthing room.

The update. Last night they gave Liz a strip called Cervidil. I will skip the details on how this was administered to Liz. What it does, is it makes her body release a harmone called prostanglanden. This hormone is a natural occurring hormone that makes the cervix dialate. It is not to start contractions, but Liz has felt a bit more since the medication was given. This medication takes 12 hours to work its magic, and then, around 2pm today, they plan to give Liz Potosin. This medication will indeed cause contractions. No idea what time our daughter will be born, but they anticipate this happening later this afternoon or early evening (or maybe even tomorrow).

To close, the day shift Dr. came in and talked to Liz and I. All along, we had been told our daughter is pretty much wisked away and we do not get to touch or hold her. This is a tough pill to swallow. The Dr. was very nice and said ofcourse we would be able to hold her, but they would take a minute to clip the cord. At this time, Liz and I would be able to get a good look at our baby girl and I plan to take a picture. The Dr. also said I can cut the cord if all is well with our baby girl when she comes into our world. These comments made Liz and I very happy.

We will keep everyone posted. Thanks for your continued support and prayers.

Friday, October 17, 2008

Three Rocks

My parents arrived last night and it feels comforting to have them here. Shane's mother and step father arrive tommorow afternoon. It will be a full house of love and support until I go in on Sunday to get induced.

We remain completely faithful to God and pray each day for Nayeli to have the strength to battle this ugly battle. We remain positive and uplifted by the Lords strength. I have some blankets washed, stuffed animals packed and some clothes for her NICU stay. Psalm 5:3: In the morning, O Lord, you hear my voice, in the morning I lay my requests before you and wait in expectation.

As Sunday fastly approaches I find myself with all these emotions that I have. The last thing I am worried about is labor and delivery. Which really surprises me. I am excited and scared. I am excited on delivering Nayeli. I can't wait to see her. I am scared about what Nayeli has to battle but I know that God will be there to carry her and give her the strength she needs. We know that Nayeli is good hands at UCSF and we pray that the Doctors stabilize her.

Shane and I have surprised each other on how strong we have been. We know it's because of God and he has helped us through the last four months. God has given us the support through our wonderful friends, family, and other CDH families and everyone else who have emailed us and commented on our blog. We are so grateful and humbled by all of you.

We were given three rocks, one for Shane, Nayeli and myself at church a couple of weeks ago by our Pastor. What this represents is that God will be our rock and he will be there in the worst storms. We will hold on to these rocks and ride this storm out. Psalm 18:2 The Lord is my rock, my fortress and my deliverer: my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold.

Last NST

Today I went in for my last NST. Kathy was so happy to see me and said today is Graduation Day! I bursted in tears. I guess I have had so many emotions that I felt the need to cry. Kathy as usual made me feel at ease and reassured me that UCSF is great place and that Nayeli will be in a great hands. My fluid was at 30 today and Nayeli looked great on ultrasound. She is facing down and we are happy about that.

Thursday, October 16, 2008

Moment by Moment

This past weekend we met with Karen who is a professional photographer and founder of Moment by Moment. Moment by Moment is a non profit organization. They have several photographers that volunteer their time to take photos of a baby or of a child with a life limiting illness. Karen took photos of Shane and I and captured our Moment with Nayeli being in my tummy. We will hold this moment for a lifetime. Karen is also going to come to UCSF and take photos of Nayeli.

Thank you Karen for opening your home to us and taking the beautiful photographs.

Tuesday, October 14, 2008

37 weeks! NST and Dr. Appt.


I went in for my NST and Dr. appt. today. I had two contractions during my NST and Nayeli's heart beat was great! Nayeli cooperated for Kathy. We think it's because of my blow pop that I have each time I come in. Dr. Maier did an ultrasound and we saw Nayeli facing down which made us happy. She weighs 7lbs. 15oz. and measures about 18 inches. My fluid level is at 30. We are happy with the good news. I asked Dr. Maier what he sees up in Nayeli's chest. He said stomach, intestines and a sliver of the liver. We always get the same response. We continue to remain positive and pray. We know that once Nayeli is born is what matters. I can't believe we only have five more days until we meet our precious little baby girl Nayeli. Thank you for your continued support and prayers.

We took a picture at Kaiser Hospital of Dr. Maier and my favorite nurses that have been there for me, Lynn and Kathy. Thank you for making me feel comfortable and relaxed each time I came in for my visits. I will miss seeing you.