Thursday, November 27, 2008

Nayeli's First 36 Days of Her Life

We found this new song by Kenny Chesney on his latest album. This is an amazing song and we feel it embodies our baby girl's life journey at this point. We hope you enjoy this video, it is a real tear maker!

Wednesday, November 26, 2008

Lord, Thanks (for) Giving us Nayeli

Princess Nayeli gets a modeling lesson from mommy.

Princess Nayeli is tired from the lesson and falls asleep next to mommy.

Nayeli's Southern CA Grandma Victoria and Grandpa Telly.

This whole journey up until this point has felt like ions for us. From the day we went to UCSF, the whole labor process, and intensive care stay, and OUR home....with our beautiful, blessed daughter.

Thirty six thankful days we have had with our daughter now! We continue to be thankful for each of these days that passes and do not take one minute for granted. Nayeli is a lesson to us all in our daily life battles....babies like Nayeli make the world and it's problems seem so small and unimportant. I think if Nayeli could talk right now, she would ask us to remember to be thankful for great friends and family, for whatever we have in our lives in general. We are all fortunate to be here, alive......breathing itself a blessing. We thank Nayeli and all these other beautiful CDH WARRIORS for their life lessons to us, as parents.

These days with Nayeli home have been wonderful, memorable, and ofcourse, trying at times as is with any newborn moody gassy baby. Each day, we think we get closer to pin pointing Nayeli's SOP (standard operating procedures) and she then throws a curve ball and changes things up. Last night, she kept us up most of the night with gas issues. Poor thing, we could hear her tummy rumbling. She of course answered this up with several straight diaper changes. Overall, she seems to be eating better day by day, she latches onto Liz better each day, and she gets more and more interested in the world around her. She is amazing and fun to watch grow, in such a short period of time. Friends and family were not joking when they said these munchins grow fast! We are enjoying everyday, regardless of screams and poops in the wee hours of the morning!

We thank you all for your support through all of this. Through your support and Gods guiding strength we have gotten where we are now. We pray you and your wonderful families have a blessed thanksgiving day. Take a moment to be thankful for your ability just to breath, let alone walk this wonderful earth each day.

Happy Thanksgiving!

Tuesday, November 25, 2008

Nayeli tests Mommy and Daddy

We had a little scare from our baby girl the other day. It was our first of we assume, several more as the years pass us by. Early in the afternoon, we noticed Nayeli was not peeing and pooping on a regular basis. Having got some of her routine stuff down pact, this was not like her to do this. To add to this, she was eating normally and had taken three full feeds of 60 or more ML's. Normal routine for our baby girl is a good pee or poop or both about and hour or so after she eats. She falls asleep after....she eats, and wakes to a few good screams demanading a diaper change. So, by the evening time, we had seen a few "chards" and some real small pee pee's but very abnormal for her.

Of course, being paranoid we though the worst and thought she may be blocked up in some way. We called a Nurse friend and explained the situation. The Nurse friend recommended calling our regular advice nurse. We did this and the pediatric advice nurse told us to bring Nayeli to the ER. Well, after nearly five hours, a sonogram, blood tests, and several DR checks, Nayeli suddenly decided to go poop and pee. The DR told us all tests looked normal with the exception of the fact her glucose was a little on the high side. The DR said the glucose level was not at an alarming level, but the info would be passed on to our Pediatrician for follow up.

So, Nayeli gave mom and dad our first scare since we have been home. It made us realize that even though the DR said to treat Nayeli like a normal baby, we do know there are a lot of little things that can go wrong (based on her condition) in addition to the normal baby issues. We are thankful to God he continues to watch over our baby girl and made sure nothing was wrong with her bowel and bladder function.

We hope everyone is doing well and we extend our thooughts, prayers, and blessing on you all this Thanksgiving day as we spend time with our families. It is a good day to be thankful for the many miracles and blessings God gives us. We hope you all remember this on this special day. We know we have a totally different appreciation for this.

Saturday, November 22, 2008

Little Angels

I wanted to put this up for Nayeli's birth defect awareness. My friend Terri, Ava's mommy put this together a few months back. Terri and her sister Tamra wrote the song played in the video. The name of it is "Little Angels." Some are here on this earth with us. We call them Earthly angels. The ones that God couldn't let go of are called our Heavenly angels. I want to honor our little ones that were affected with Congenital Diaphragmatic Hernia.

I watched this video for the first time when Nayeli was still inside of me. I didn't know what was going to happen to Nayeli. This video gave me hope. I cried my eyes out when I first watched it. I still cry watching it. Get tissue.

Tuesday, November 18, 2008

Nayeli's First DR's Appointment

Nayeli put on her "Im a princess" gameface before we even arrived for her check up!

Nayeli kept her gameface, even durng her exam.

Nayeli was then tired from faking her annoyance with being poked and still, slept in Liz's arms.

Today, Nayeli had her first Dr's appointment, back at Kaiser. We all met her new Pediatrician and liked him. The DR checked Nayeli's post surgery scars and thought everything looks great. He also did an overall exam of her and noted nothing of concern. The DR said Nayeli's primary DR at UCSF called him and updated him on everything Nayeli has been through. Not a surprise, as Nayeli's DR is very detailed oriented.

Nayeli is 21.5 inches and weighs 8 pounds and 4 ounces. This is up from her birth weight of 6 pounds and 15 ounces and shows Nayeli is eating well, gaining weight, and growing overall.

After Nayeli's DR. appt, we went and Visited DR "M" and his wonderful crew of Nurses. DR "M" was our DR before Nayeli was born and was very emotially attached to our situation. DR "M" is also a great DR, as well as all of his staff members. They were all very happy and pleased to meet princess Nayeli in person. It was an emotional moment for all of us. Nayeli was a total princess throughout the DR appt and when we went to visit DR "M" and his staff members. We were both baffled by this fake "I'm a princess who never crys" attitude displayed by Nayeli. We both know Nayeli will be a handfull as she grows. Shane is already plotting his workout and has started shadow boxing in preparation of defending our daughter. As any hockey player would say, we hope he doesnt have to "drop the gloves" when Nayeli's first boyfriend comes over.

DR "M" and his crew! After much persuasion, DR "M" got to hold Nayeli, even though her head is sideways.....hahahahaha....Nayeli told us she put her head sideways so Daddy could be in the picture!

As usual, we thank everyone for following princess Nayeli and our journey. Please keep the positive thoughts, prayers, and nice comments coming.

Saturday, November 15, 2008

Our Home Sweet HOME

Wow. What a journey so far. It is almost impossible to put our feelings into words. Again, we cant help but have the word "Miracle" in mind. Both of our emotions are flying so high, pulling up to our home.....Nayeli's home. When we got home, we carried Nayeli inside in her car seat. She was so precious and passed out at the moment.

So, before we get to all of this. We met with Nayeli's primary DR. He is a Kaiser DR but is doing a stint at UCSF. We want to extend our deepest, heartfelt thanks to the DR's, nurses, social workers, food workers, and every other staff member in that building that was a part of our daughter's and our life. What a first class great facility with unbelievable staff. Our heart tells us to thank individual people for individual efforts....and there were a lot of them....but we would be here forever doing that. Every person there played a roll in saving our daughter's life, comforting us, and even feeding us. THANK EVERY ONE OF YOU and may God bless you and your families.

Home with our baby girl. We are finally getting the feel of parents with a new born baby..a hungry....pooping....crying when she poops or is hungry new born. And guess what, we love it! We feel so fortunate and blessed to have each and every minute, hour, and day with Nayeli, so we take the late night wakes and crys with smiles and droopy eyes. She is so strong, aware, and interested in her surroundings. Twinkie, Molly and Max seem not to be too bothered by Nayeli. Well, at least Twinkie and Molly. Max runs when Nayeli screams and has recently taken to sleeping downstairs on whatever couch the dogs are not on. Get he is getting older and needs his beauty rest. So, we are adjusting to now actually getting to be parents of a child away from the NICU...the beeps, scampering DR's and Nurses, and wires and hoses. As a recent post said....our little "wireless" Nayeli.

From a "medical" standpoint, Nayeli is eating well and often. She is pooping and peeing like a "normal" baby also. With her CDH, comes the gas and ocassional vomiting. With this being said, we have to move Nayeli very minimally and slowly after she eats to prevent her from vomiting. So far, we have done fairly well with this task. Nayeli takes 4 different medications for her tummy, acid reflux, gas, and a vitamin enhancement. We also add a small scoop of Similac to each of her meals to further fortify Liz's breast milk to help Nayeli grow faster.

With all this being said, we want to thank everyone for the great home cooked meals, especially with us now being at home. We thank you all for your continued support and prayers. It means so much to us and reminds us of all the wonderful friends we have. We are a very lucky and blessed family based on everything mentioned in this blog. Please keep the support and prayers coming as we deal with gassy (due to her condition) baby Nayeli.

Thursday, November 13, 2008

Nayeli's First Slumber Party

Nayeli's bed nestled between our world famous UCSF couch beds we have come to love.

Yesterday the Dr's told us we would get to stay and board at the hospital over night so we could have Nayeli in our room with us. No more tubes, no more monitors, and no more beeping. First thing this morning we packed our belongings at our friends Tom Hidas house we were staying at in SF. Shane and Telly went there this afternoon and packed everything so Telly could take it home. Telly also brought us Nayeli's car seat. We were so excited to be spending the night at the hospital with Nayeli.

The Dr's told us during their rounds that Nayeli is great and we should look at her as a normal baby (the DR said this at least three times). We were so happy! I started to cry and hugged each Dr. and thanked them. Shane got teary eyed and held back his tears of happiness.

Nayeli had a great day. I breast fed her and also bottle fed her. She was waking up every 2 1/2 hours and asking for more food. She has a good appetite and we are so happy! She also keeps her food down well and we hope this stays this way. Spitting up food is very common for CDH babies. This is yet another blessing we have had minimal issues with.

Shane and I went out to a nice dinner over looking the beach in SF. We took this advice in having a date night from Nik and Megan's blog. We went to the Beach Chalet restaurant near Ocean Beach. We have gone to this restaurant in the past and love the area. Great food and good service. We had a nice dinner and talked about how blessed and fortunate we are. We are both still in awe at the fact that we will be home with our baby girl in less than 24 hrs. It feels like we have been here forever and we cant wait for Nayeli to meet Max, Twinkie, and Molly. Telly (Liz's dad) took some of Nayeli's cloths home today so the dogs and cat can get a sniff of our newest family member....Warrior Princess Nayeli!

We want to thank our Kiwanis friends, the Bonn's, Collelo's, and the Goldsteins for the great food. Thank you Marge for taking the time in getting the food for us. This, along with your wonderful comments and support, has sustained us. We are very greatful for everyone in our lives. We are blessed with wonderful, caring, supportive friends.

One of Nayeli's many favorite UCSF Nurses...Nurse Kim!

I get sleepy when mommy holds me.

Why did you just wake me? I was having a dream about meeting Molly, Twinkie, and Max.

Wednesday, November 12, 2008

Homeward Bound!

This morning the Dr's told me during their rounds that we are ready to go home and being discharged on Friday.

Nayeli was sleeping in my arms and Shane had just left to get us breakfast. I wanted to scream and I had tears of happiness. I can't believe that our little girl is coming home with us. June 4th was the day we found out about Nayeli being diagnosed with CDH. From that day on we prayed to God to give us the strength each day to get us through this CDH battle. Our prayers have been answered and we are so grateful and thankful. We know miracles DO HAPPEN. Holding our baby girl in our arms is the best feeling we have ever had. She is truly a miracle. When we thought there were days we couldn't go on we prayed and didn't give up faith in God.

The Dr's. said that the x-ray from yesterday came back and there was no fluid in Nayeli's lungs and there is a just a little fluid in her chest between her left lung and heart that they are not worried about (normal for the space in her chest). They told me that it looks like it's going away on it's own. I was so happy to hear that and couldn't wait to tell Shane. Nayeli's left eye cleared up and looks great today also. The Lord truly does make miracles happen.

I called up my dad who is staying at our house and watching our dogs and cat. I told him the good news and he is bringing Nayeli's car seat tommorow that we got for her from our baby shower gift money. We are so excited!

Nayeli had a good day today. She got fussy at around 5pm. We gave her a bath and Shane held her and that calmed her down. She is daddy's little girl!

God always finds a way to remind us of his strength and presence among us. As we have mentioned before, we believe the only one that could have blessed us with this miracle is the Lord. With that, this is one of our many favorite versus in the bible, and is a good description of how blessed we are and feel!

Chronicles 16:8
Give praise to the Lord and CALL on his name
Make known among the nations WHAT HE HAS DONE
Sing to him, sing praise to him
Tell of all his WONDERFUL ACTS
Glory in his holy name
let the hearts of those who seek the Lord rejoice
Look to the Lord and his STRENGTH
Seek his face ALWAYS
Remember the WONDERS he has done,
and the judgements he pronounced....
He is the Lord our God
and his judgements are in all the earth.

Tuesday, November 11, 2008

See Yah Later Feed Tube

The DR's did their morning rounds pretty early today, must be a Veteran's Day holiday thing. Happy Veteran's day to any Vets reading this, we all served our Country honorably!

So, we managed to catch one of the DR's before they left Nayeli's new stomping ground. The DR said they planned to remove the feed tube today. With this, they want Nayeli to eat all of her meals "ad lib," as mentioned in the previous posting. They also want Nayeli to eat all of her meals via breast feeds, and then by bottle at the tail end if necessary. The goal is to start building our baby girl's princess warrior stamina! With that being said, today was a very trying day for us. Nayeli was great this morning, had a great feed and took in at least 60 cc's, mostly from the breast. We were pretty excited about this. We figure this feed tired her out the rest of the day though, because they rest of Nayeli's day was up and down, lots of crying, and she had a tough time staying latched on. We have a feeling she did not take any full feeds today and chances are she will likely lose a little weight. She was also extremely gassy today via her mouth and tushy. It seemed no amount of patting and burping would give her relief and this probably was the cause of a lot of her crying. This is an inherent problem with CDH babies. We have a feeling Nayeli will have many gassy years before the whole CDH thing rights itself as she grows. We know there will be days like this, but this was one of the tougher ones. We pray God gives our baby girl the strenght to feed better each day.

The DR's did an x-ray yesterday on Nayeli's chest and lungs to check on the previously mentioned fluid. The results are not back yet. We have been ever concerned about this fluid situation, and truly hope tomorrow morning brings good news and little or no fluid at all! The DR's also took a sample of the fluid coming out of Nayeli's left eye. Those results have also not come back. Her eye is still leaky, but has not gotten any worse. We are very happy about this.

Good news is, Nayeli is finally tuckered out from all her fussiness, she is asleep at 7pm and probably only slept about an hour today on our shoulder. Hope she has a great night of sleep and wakes refreshed and less gassy! Thanks, as always, for all of your support and nice comments. It continues to give us strength, as does the Lord.

Monday, November 10, 2008

Movin on UP...closer to Movin out

Nayeli's new view!

You are not going to believe this, but we went to the DR's morning rounds again. We will do this until the day we leave...we will stay by our baby girls side and make sure she knows we are there supporting her.

The DR's have raised Nayeli's feeds to 70 cc's a feed and they have stopped giving her Lasics. They plan to do an x-ray in the next couple of days the see what the fluid level is. They are still thinking it is surgery related fluid and suspect it will be gone or close to gone on the next x-ray. We really hope this is the case.

Today, we noticed Nayeli had some yellowish fluid around her left eye. It does not seem to be bothering her, but as you all know, as parents, it is driving us nuts. The DR's looked at it and gave us several different answers about what it could be. One said it could be conjunctivitis, a viral infection that could be treated with an ointment on the eye. Another idea is it could be a clogged tear duct and will either right itself or we would have to see a specialist down the line. As of now, they are just cleaning her eye with water and monitoring it. We are a little confused by this and since it does not seem to be bothering her, we will wait to ask the DR's more about it tomorrow morning unless it gets worst tonight. Pray this is nothing and it goes away soon.

So, the DR's are leaning towards taking the feeding (NG) tube out sometime tomorrow. They believe she is starting to take in enough food and want to start "ad lib" feeding otherwards, feeding her when she asks for it. This works great for us as we spend our day with her anyhow. It is very hard on Liz and the breast feeding is very tiring for her. Liz said she feels like Nayeli is sucking the life out of her. We know princess Nayeli has special powers, but we are not sure about this one.

Today, Nayeli was moved from the sick baby wing (west) to the transitional wing (north). This is a big step in the right direction for our baby girl. DR's told us they anticipate us leaving in about a week (or a bit more)! We are so blessed and happy about this news, but also pretty scared. We know this is natural, but we worry about her due to her physical issues that can arise with her known condition. The DR's also talked to us about limiting contact with people when she does go home, at least during the winter months when the flu is going around. They reminded us how dangerous it can be for her to get sick because her lungs are smaller than most babies. They said that as she gets older, her lungs, and obviously her, will get much stronger and this issue will not be such a big deal. We are already talking about installing the same type of hospital grade hand cleaner dispensers at our entryway, and on the hall outside Nayeli's room.

Back to Nayeli's new room is so quiet in there. We are hoping this is the change she needs to start feeding better. We are thinking there were too many distractions and noise in the old ward.

Right when we were leaving, the DR's brought a new baby in. There were at least 15 DR's swarming around. When we came into the the hall, we saw the Father of the baby pacing. We looked at one another and remember this feeling of helplesness. We felt terrible for him and asked him if we could get him anything. He said no, but we brought him some ice water anyhow. Please pray for him, his baby, and his family for strength, courage, and the faith to overcome whatever is going on with his baby.

More to follow.

Sunday, November 9, 2008

Sweet Dreams of Going Home!

Nayeli has a strange sleep pattern right now. She is like daddy.....a night owl. The last few days, she has spent a greater part of the day sleeping. It seems like the hustle and bustle of shift change between 7 and 7:30pm wakes her and she gets moody. We usually manage to calm her down before we leave in the evening, but nurses tell us she gets pretty moody at night.

We are still having some difficulty getting Nayeli to eat a full meal at each feed, at least by breast or bottle. She continues to get frustrated, her respiration rate goes up a bit and she then doses off. I think the best we have done is about 45 cc's combined between breast feeding and bottle feeding. The lactation nurse told us that once Nayeli starts to dose off or gets frustrated, we need to take her away from breast feeding because she will start to except this as her "comfort place." So, for now, the feed tube remains to finish off her feeds. Nayeli is still working at pulling it out. We are praying and hoping her stamina increases so she eats more and they are able to remove the feed tube. We suspect she will eventually go home on mostly bottle feeding, we just do not want to go home with the feed tube still in place.

Nayeli is also doing great breathing room air on her own with no added oxygen. Looks like the DR's will leave this off unless something changes. DR's do not anticipate any changes at this point and took the machine away yesterday. There's now so much space around her bed. We pray Nayeli continues to improve her strength and breathing.

We were reading the bible the other day and found a passage that moved us and reminded us of the power of prayer and faith in God. As we have mentioned before, we believe there is no other explanation for God's miracle with our baby girl. All of your prayers, as well as our own, have no doubt helped our daughter's situation.

2 Corinthians, 1:10
On him, we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many give thanks on our behalf for the gracious favor granted us in answer to the prayers of many!

We thank everyone for their continued prayers and support. It means a lot to us and we read every single one of your comments!

On a side note, if there is anyone out there who likes to cook, we are dying for a home cooked meal once in a while! We are burned out on cafeteria food and do not leave the hospital as we spend our precious time with our daughter. We only leave to go sleep for six hours. Alex Hidas and Amy Harris have graciously brought us out home cooking and we loved it. If you are interested, we can make arrangements. All our love, the Nelson family! A special thanks to Alex and Suzzanne, Harris, and Marge Jensen for the great food, we loved it!

Hi Grandpa Telly Check out my view! If you look closely you can see the Golden Gate Bridge

Friday, November 7, 2008

Look Mom and Dad, I'm totally breathing all by myself!

Nayeli gives life without the high flow nasal cannula a siskel and ebert big thumbs up!

We went to the DR's morning rounds meeting again. The DR's lowered Nayeli's oxygen input to 1%. Nayeli is now a one percenter....for those in the know. The DR's said to keep working on feeding and they beleive it will get better day by day. They still want to focus on getting Nayeli taking all of her feeds by breast or bottle. Nayeli is not there yet and still gets tired and frustrated while she eats. She is getting better, and has taken as much as 45 cc's or so between the two before having to be given the rest of her food via the feeding tube. Not much else has changed on this front and we hope Nayeli gets stronger each day and is able to eat more. Nayeli has a strange pattern going right now as she seems to sleep most of the day and is then restless at night. Most parents would complain about this, but we are just happy for every day we have with our baby girl. We are so lucky. Liz is doing a heck of a job having to wake up every three hours to feed our baby girl and keep up with her food intake. We thank God for her strength and commitment to this difficult task!

Late this morning, we were standing at our daughter's bedside wathing her sleep and make her cute facial expressions. She has such a cute personality. We noticed Nayeli's nasal cannula was completely out of her nose and her stats appeared to be the same. The DR came in and our nurse today told the DR there was really no need for Nayeli to have the cannula. Initially, the DR said to put it back in and wait one more day, but he then looked at her stats and said, "Never mind, go ahead and take it off." The staff left the equipment in the room ofcourse to make sure things go smoothly, but they do not anticpate putting it on.

All that's left now is the feeding tube and Nayeli is already working on taking it out herself. We just went in there to check on her and she had a handful of the feeding tube in her hand. We took the tube out her hand and told her to be patient because it will gone soon enough with Gods blessing.

The blessings keep on coming. We can almost taste taking our daughter home, but realize we are not there yet. A new CDH baby arrived last night, and there is another one in the room with our daughter. We remember those first few days and it feels like a year ago. We have come so far and thank God for our little miracle. We pray the blessings keep coming. We thank everyone for your continued prayers and support!

Nayeli usually falls asleep and farts when daddy burps her.

Mommy burps our little bundle of joy!

Thursday, November 6, 2008

Happy Baby

As usual, we came in early today to attend the DR's morning rounds. We are also really pushing the breast feeding now and do so every 3 hours, or so. This is one of the goals medical staff has in order for Nayeli to go home. They want her to eat 65 cc's of milk each meal. Nayeli had a great day today, with the exception of the first few minutes of her bath. Other than that, we had a hard time recalling her crying at all today.

So far, Nayeli is doing a pretty good job but she gets tired faster than the average baby due to her smaller lungs. So far, she is averaging 15 or so cc's from Liz, and we then bottle feed her the rest. The most we have gotten her to bottle feed is about 35 cc's, which leaves her a bit short of the 65 cc mark set by the DR's. The remaining amount of milk is being given to Nayeli through her feeding tube. The DR's and lactation nurses believe Nayeli is doing an excellent job and noted her respiration rate and oxygen levels are great while she feeds. They feel it is only a matter of time and Nayeli will have no problem eating her 65 cc meal.

The DR's lowered our daughter's oxygen through her nasal cannula from 3% to 2% today. She is so close to being off oxygen all together, but they want to give it a little more time. We asked the DR's if they could put a time frame on how much longer we will be here. The DR said she likes to estimate a longer period of time to be on the safe side because if it is shorter, it is always a surprise. The DR said if all goes as it has been going, Nayeli could go home in 3 to 2 weeks. The DR's are going to start weaning Nayeli off of the Lasics, and want her to take in full feeds before they release her. They said they do not want to send her home with a feeding tube and intend on taking the tube out soon.

After this meeting, I looked out the window of Nayeli's beautiful view of the Golden Gate Bridge, Golden Gate Park, and part of downtown San Francisco. Liz looked at me and asked me what was wrong because I had tears in my eyes. We are very blessed and everything that has happened for us can only be the work of God. There is no other way to explain this miracle when the DR's told us things would be tough when our daughter was born. Things have not been easy, and there have been painful, scary, and frustrating days, but the way things have gone for our daughter are nothing short of a miracle! We are so thankful to God, our sleepless nights and prayers have been answered. We pray this path continues and we love our daughter so much.

We thank everyone for their prayers, support, and overall words of encouragement. Please keep this coming. Rest assured you have all helped us through this battle and have kept us strong and faithful!