Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Sunday, August 29, 2010

Nothing Could Be Sweeter!

Whitney turns 39 days old today!

This is Thomas writing, instead of writing paragraphs, I thought today I would just post some pictures and comment on them. Summary: Whitney is doing fantastic, and we can't wait to be able to take her home. All she needs to do is take all her feeds through a bottle and then she's all ours!








This is the last picture we have of Whitney before they took off her nasal cannula. The nasal cannula at this point was on a very low flow and was not giving her any oxygen support, just helping Whitney open her lung up all the way when she took in each breath.




Here she is the very next day! The only thing left on her face is the feeding tube in her nose. It was so amazing being able to see her face for the first time without any beathing assistance. She is even more beautiful than I imagined.




Whitney and mommy posing for the camera. My two favorite girls!




Having had tape and tubes plastered to her face for a month has left a little redness on her cheeks, but that goes away with time.




Playing with Whitney seeing her big baby brown eyes looking up at me is most fulfilling. Sometimes it looks like she is smiling, but she hasn't yet given us a true smile. Just something to look forward to.




Whitney is fast asleep in mommy's arms. Bonding with Whitney like this is very theraputic in nature and helps us as parents heal from all the stress and anxiety that once plagued us every day.




Whitney sometimes falls asleep with a worried look on her face. I haven't quite figured out why. I hope she is comfortable.




On August 23rd, Whitney experienced her very first BATH! She was wailing and crying the whole time... so it wasn't the funnest thing she's ever done. She has had a second bath since this photo was taken and from what I was told, she tolerated it much better the second time.




All that beautiful hair being matted down from the soapy water. I was holding the camera while Alicia and a nurse bathed Whitney. Whitney kept looking at me as though to say "Daddy! Save me from this wet torture!"




Dispite that this picture was taken a day after her bath, her hair pretty much sprang straight up just like this as soon as her hair dried out after the bath. Her hair just can't be tamed. Whitney gets lots of compliments on her long dark hair.




Whitney can always depend on mom being there to hold her. Whitney loves mommy!




We got to dress Whitney up in a pretty sweet outfit. Some outfits we give her last a couple days, while others have only lasted a few minutes before needing to be replaced.




Back at home we have set up her brand new crib. Its a dark brown color. We got it online from Walmart.




Here's another angle. We have "Christina" (the doll) saving Whitney's spot for when she comes home. In the background is a dresser/closet full of Whitney's clothes, toys, blankets, and other miscellaneous stuff we received from Alicia's baby shower.




Here is another top view.




You might have spotted it, but we have a video monitor so that will be able to both hear and see our baby girl when we're not by her side.




The video monitor is a handheld device that you can clip to your belt or put in your pocket. It has a decent size screen that displays in full color. When the lights go out, the camera shines an infrared light on the baby so we can still see her at night time on the monitor.




It kind of looks like a cell phone. The box says it was designed for tech-saavy parents. For our baby shower, Alicia's co-workers chipped in together to get her a video monitor, but it was broken when we opened it, so we returned it, and exchanged it for this one instead.




Whitney here is showing us her cute pink tongue and is holding her first toy, which is basically a set of multi-colored rings with different textures. Whitney likes to stick her tongue out every once in a while for everyone to see.




Here is another outfit. Alicia really likes this outfit. I took this picture as soon as we got it on her, which is a good thing, because this is one of those outfits that didn't last very long before it needed to be changed. :)




Here is her Soothie that is sewn onto the beak of a stuffed duck animal. This soothie works miracles. She will be crying and crying as though she's in pain, but as soon as we stick this thing in her mouth, she starts sucking away at it, and she looks as content as ever.




Alicia and Whitney bonding. I also get my fair share of bonding time, too.




We are using the Dr Brown bottle system. A number of nurses including the Speech Therapist highly recommended this bottle for Whitney since she is learning how to feed from a bottle. I don't know the science behind how the bottle works, but we have seen positive steps in the amount that she has been taking in ever since we started using this bottle. The goal is for her to take in 85 mL of formula at each feeding. She is currently taking in between 30-60 mL during each feeding. Once she has taken her feeding completely by bottle several times in a row, they will discharge her from the hospital! Some nurses are optimistic that she will be home in a week, while others are not so sure. The nurses all agree that its up to Whitney when she's ready to come home.




Whitney has been our little drama queen. I think this photo is so adorable.




Nothing could be sweeter than seeing our baby girl breathing on her own, and doing so well. She has fought so hard and has been aided by the healing mercy of our Heavenly Father. Thanks to everyone who has donated their faith, prayers, time, talents, and gifts. You have all been answers to our prayers and while we may or may not be able to repay the favor, I can tell you that we will never forget your kindness. We will never forget you and what you have all done. Everyday I thank God for what he has done. Let's not ever forget Him either.

Tuesday, August 24, 2010

More Milestones!

Alicia writing! So yesterday, Thomas calls the NICU and they just say stuff about her feedings and we say we're coming in later. Thomas's sister made us some yummy enchiladas and comes with us to see Whitney. So I go back there with her, and a nurse says that 'Whitney's nurse is on break do you have any questions?' I look at Whitney and say 'huh, yeah, Where's her nasal cannula!?'

The other nurse checks some notes and said that they took it out at 8AM, Monday, August 23, 2010, 4weeks and 5days old! Oh my gosh! So freaking excited! They didn't tell us that over the phone! Huge blessing! Thank you Heavenly Father! That's when it all sinks in... my baby can breathe on her own! Whitney's lungs support her life! Nobody ever thought this was possible! Such a miracle! Whitney has progressed so far and so fast! I love her so so much!

The Occupational Therapist came by before her feedings to teach us about how to stretch her arms and hands and a bunch of stuff. Thomas fed Whitney at 4pm. She took about 20mLs from the bottle then 65 from the tube. They said we would bathe her tonight (yesterday, Monday) at her 8pm feeding time! Later the nurse says that they are going to move Whitney down to the 1st floor NICU Annex! Two huge steps in one day!! She doesn't need to be constantly looked at by the Neonatologists. All she has to work on is feeding from a bottle now. I want her home so badly, but Hopefully not with a feeding tube. My poor baby has been though a ton to much.

My dad came by after work and just in time to follow us down to the NICU ANNEX. He saw her new setup and hung out. It is so big down there and quiet! I think Whitney will like it when she gets use to it. Some of her old nurses came down to say hi and congratulate us and were so surprised Whitneys doing so well! Around 8:30 I got to help bathe my daughter. This was her first bath! She's had sponge baths before (that I never got to see) but this was the first tub bath. Poor thing was crying the whole time, I think because she was mostly hungry. Then we dressed her in a yellow dress, swaddled her up and I fed her this time and cuddled her. We spent a good 7 hours with her that day!

Today was a really busy day for us. Thomas and I picked up Whitney's crib from Walmart. Returned a video monitor that didn't work for a better video monitor at Babies R Us. Finished some laundry. Got to the hospital around noon. We changed her diaper and I fed her and cuddled her for like 4 hours. My mom hung out with us today and my sister! It's really nice to have 3 people in at time instead of just two. Now we can both stay with Whitney and have a friend!

Thomas Taking over now in writing. We're still hunting for a Pediatrician, and based on referrals, I called up a place called Pediatrix located on Happy Valley Rd, spoke with a receptionist there and asked if we could tour their office and chat with Dr. N. this lady said she'd have the doctor's scheduler call me back to set up a date and time. That was yesterday early morning and they still haven't called me back... Today 8/24 we went to tour the Northwest Clinic for Children and got to meet with Dr Ka. We were the only couple there at the orientation that weren't pregnant. Overall it felt pretty good there. Dr Ka was very pleasant to talk with. When the clinic tour was over and everyone left, we got to talk one-on-one with Dr Ka about our baby Whitney and her condition with CDH. We were pleased to learn that she and her colleague, Dr Ke, have both dealt with children who had recovered from CDH. She knew exactly what ECMO was and made us feel very reassured that she'd be in good hands if we decided to use this clinic. They have separate sick/well waiting rooms, a separate waiting room specifically for parents with baby infants, and they even give you the option to just sit in your air conditioned car in the parking lot and they will call you on your cell phone when it's your turn to be seen. So they scored better with us compared to both the Cactus Clinic and Pediatrix and Great Destinations in terms of first impressions. I still have to check with my insurance company to see if Northwest Clinic is in network or not.

The medical bills are starting to come in. It hasn't yet reached the overwhelming threshold, but its getting dangerously close. Even with insurance paying a large percentage of everything, our personal liability for just Alicia (all prenatal care all the way up to the labor/delivery) is somewhere in the vicinity of about $3000, give or take a couple hundred as we're still working out some billing errors made by the hospital. We've been trying to pay the bills as they came in, but ever since the hospital messed up in their billing, we haven't given them a dime until they fix everything. There might be more bills to come, too. I'm not sure if all the claims have been processed yet. Just a fun fact: If Alicia and I were uninsured, our medical bills (not including Whitney's NICU time) would be in excess of $36,000. This includes every visit from the day Alicia got her first prenatal checkup after finding out she was pregnant, all the many numerous visits to Perinatologist, an MRI scan, fetal heart doctor visits, surgeon consultation, neonatologist consultation, 3 day 2 night stay at the hospital, and an operating room delivery. This does not include any of the NICU stuff.

So baby Whitney has been in the NICU for 34 full days as of today, underwent ECMO surgery, spent 6 days on full life support under ECMO, then had CDH repair surgery, and has ever since been given 24 hour attention by the doctors, nurses, and a team of therapists. And it seems to have all paid off in the end because Whitney is doing great! But how much does all this treatment cost money-wise? I don't really know... I know my insurance covers a large portion of it, but what about the rest? We were hooked up with a social worker who basically assisted us in signing up for an Arizona state program that helps pay for most and in some circumstances pays for all of the out-of-pocket expenses that are not covered by insurance. We're still working out the details.

Anyways, I'm going to stay up all night assembling Whitney new crib! Wish me luck!

Sunday, August 22, 2010

Accomplishments!

ALICIA :) I don't really have time to blog but I will anyway because I want to keep everyone updated. Having a baby in the NICU leaves not time to do anything else! Our day basically consists of sleeping, eating, checking email, paying bills, driving, and visiting Whitney. We'll hang out with our families but don't really have time to hang out with friends. We are so grateful to be living with my parents! We are grateful for a good, working, reliable car. We are so grateful for all the prayers and support we have received. We are so so grateful for our daughter Whitney.

Alrighty, so yesterday Whitney got the Broviac line out of her leg! That means that she is tolerating full feeds and does not need the TPN anymore. She's gaining some weight so that's good. Every four hours she eats 80mL's of formula. First they bottle feed her and she does okay with that. She took 30mL's from Daddy today! Then the rest of it they 'force feed' her through the tube.



Yesterday they put Whitney on a low flow nasal cannula. It's the same one but there are a bunch of differences the nurse rattled off. All I know is that she's getting better! Whitney's other huge accomplishment is that the dr.'s said she is officially at Level Two acuity! She is still in the Level Three Nursery, and probably won't be moved (to a different nursery) so that the Dr.'s can still keep a close eye on her.

Whitney is now seeing a Speech Therapist! No, she can't talk yet, they help her with bottle feeding. She was evaluated and then they try lot's of different things to try to help out so that she can take a full bottle feed. Whitney is on her way! Just a repeat of an earlier post, Whitney and I will stay indoors for the entire Flu season! And only Immediate family with no signs of sickness, can hold her when she is home.



We are so glad that my brother and his wife could drive down here and see Whitney. They hung out for a few days. It was also fun to see their son! When my bro. was with me and Whitney, we were taking pictures right after she finishing feeding. I guess I moved her around a little to much and she threw up all over me! I felt really bad for her, but it was exciting to have my first spit up, I mean she spewed! It was a ton, my poor baby. Fun stuff.



Whitney still wears the splints on her hands to keep her from clenching her thumb under her fingers. Also, today Thomas and I got to dress her! Well, the other day we did put a oneise on her that Brianna had made, it had Whitney's initials and a big sunflower! I decided that her first outfit would be the adorable dress that my good friend Sara gave her. And wow, did she look so cute! (hopefully it's not covered in poo or spit up by now or even lost). Well, we look foward to another crazy week in the NICU.






Friday, August 20, 2010

Best Feeding Ever!

This is Thomas still writing. Over the past few days we've been working with Whitney on a few things. First and foremost is training her to feed. As mentioned previously they've been trying to bottle feed her, and she is slowly getting better at it. Sometimes she drinks the formula, and sometimes she doesn't, sometimes she digests its well, and other times she pukes it right up. We just need to be patient with her. I have to brag that the first time I got to do the bottle feeding, Whitney consumed the most milk orally than she ever had before! She drank 43 mL of formula and didn't throw it up! I tried burping her but she either didn't want to burp, or just didn't really have any air in her to burp up, but that was a neat experience too.



Whitney is also seeing an Occupational Therapist and a Physical Therapist to help her out with movement. Both of her thumbs are almost perpetually clenched tight to the palms of her hands, and so they are alternating putting a splint on each hand between her thumb and pointer finger to try and relax her thumb so it isn't always so tight.

Everyday we can tell that Whitney is getting more and more ready for that day when she can finally come home! The only thing right now that is keeping Whitney in the NICU is her feeding. Once she learns how to completely feed orally, they will have no other reason to keep her in the hospital. She is still using a high flow nasal cannula, but they will be taking her off that very soon, to use what I presume is just a regular nasal canula. Whitney is either on zero oxygen support, or very low oxygen support. The nurses say that she needs so little help on her breathing now that they don't really need her in the hospital for breathing anymore, its just the feeding they are focused on now.

Our hunt for a Pediatrician has begun. The doctors advised us to look around for a good Pediatrician that perhaps has experience with working with kids who have had CDH. The hospital recommended a few doctors near where we live, and we called some up, but none of them allowed us to even talk with the doctors! The receptionist people were like, "You can meet the doctor on the baby's first appointment." The only problem with this is that we don't even know if we like the doctor enough to want to bring our daughter there to begin with. Other Pediatrician offices had an automated menu with a huge web of selections we had to choose from. Alicia tells me for one office she had to choose from 11 different menu options before she actually was able to talk to a real person! So finding a Pediatrician is actually turning out to be more frustrating than we originally thought. We've gotten some good referals from friends and we called up a place called Northwest Clinic for Children which was a close by place that was referred to us. We called and immediately were able to talk to a real person who sounded very caring, we were able to set up a time when we could see one of the doctors, scheduled a tour of their facility, they asked about Whitney's condition and seemed overall very helpful. It was actually a very easy and reassuring phone call. So we're looking forward to checking out this Pediatrician office to see if its right for Whitney and us.

Enjoy these photos!



Whitney got a new Beanie Baby friend named "Hope"





The bottle used to be pretty full.





Daddy feeding Whitney.





We turned the overhead lights on when we need Whitney to be awake, especially for feeding. Whitney's eyes open up wide when she gets used to the light being on.





Family Photo!





Alicia holding Whitney





How can you say no to a cute face like this?





Daddy and Whitney singing together!

Tuesday, August 17, 2010

"You got a little spit right there"

Thomas still writing.

Okay, so Whitney spit up a lot of formula yesterday early morning, and I do mean a lot. They even gave her a bolus of saline to keep her blood pressure up. But no big deal. They did say that they were rapidly increasing the amount they were feeding her rather quickly (adding an additional 5mL every 12 hours to her feeds), just because Whitney seemed to be doing just fine, but after this huge puking session, they decided that they will take it a little slower. Again, no big deal. We just have to be patient.

She's still doing really great on her breathing. Her high flow nasal cannula is pumping in 2 Liters per minute, which they say is really good compared to the sometimes 5 or 6 or 7 Liters they have to pump into other babies. So that's good to hear.

Whitney was fast asleep the last couple times we saw her, with the occassional heavy eye lids opening to take a peak at who's touching her. I still can't believe how beautiful and amazing my little girl is. I love to see her looking around, and she has that purely innocent look on her face, full of curiosity as she explores the world around her crib. I have to admit, she's the most beautiful baby I've ever seen. But I suppose most all dads/parents must feel this way about there own, I'm very biased in favor of my own little sweetie pie.

I have some unwelcome news for perhaps some of you. When we talked about bringing home Whitney someday, they advised us that because she has an underdeveloped lung, she is more prone to respiratory illnesses. If she catches a respiratory illness, it would be more dangerous than if a healthy kid got sick. So they cautioned us against taking Whitney out into the public until the Flu season is over, which unfortunately doesn't end until April 2011. I don't think Flu season has even started yet, but she's still going to be in the hospital for a little bit and then when we get home we still have to be very cautious about her health, and not exposing her to harmful germs too early.

So basically this means that on doctor's strong recommendations, she isn't to go out into the public, especially crowded places, including the supermarket, social events, and even to church. Basically anywhere where she would have a higher chance of getting a respiratory illness from somebody else. At least not until the Pediatrician feels its safe and okay to do so. So she'll basically be living in a bubble for a while. Sad, but at this point I'd hate to jeopardize all the progress we've made with an illness that would compromise her already fragile lungs.

I really hope I don't sound strict, but I have to be. When Whitney comes home... Absolutely nobody who has even so much as the sniffles will be allowed to visit Whitney. Any visitors will have to "scrub down" before touching her, this includes both Alicia and I. If we sound overprotective, its because we are overprotective, and I hope nobody gets offended. Even though Whitney is having a miraculous recovery, she is still considered to be a sick baby. So yeah...

PS: Can anyone guess what movie I quoted the title to this post from? (I love playing this guessing game).

Monday, August 16, 2010

Suck, Swallow, Breathe

This is Thomas writing.

It seems we've been getting so much good news at the hospital lately. And for whatever wonderful reason, the good news just doesn't seem to want to end. So when would baby Whitney be able to come home with mom and dad? I knew it was one of those questions that I know nobody can give a definitive answer to, but I decided to ask the doctor anyway to see if he would even try and guesstimate. So we spoke with the doctor, who of course said, "it depends". He said that Whitney is on very little support right now, she's mostly breathing on her own now, but with a high flow nasal cannula. So they need to wean her down on the high flow down to a normal flow. They anticipated that this would maybe take a week, maybe longer, but probably shorter than that.

The doc says that right now her tube feedings are being delivered to her stomach over a duration of an hour, and they need to shorten that to half an hour. Because it's being delivered over an hour, there is a continuous slow flow of food going into the stomach and coming out of the stomach (to the intestines). Because of this slow flow, nothing really accumulates in her stomach for too long. In real life, we eat food in half an hour or less, it sits in our stomachs to be digested before moving into the intestines. When they first tried to deliver the feedings over a half hour, Whitney couldn't hold it in her stomach and threw it up. But that was a while ago, they are going to be trying it again soon to see if she's improved.

Finally, they want to transition Whitney from tube feeding to nipple/bottle feedings. They attempted this for the first time last night. Using just 5 mL of milk (a very small amount), they wanted to see if Whitney would be able to do it. The doctor says that the trouble most of these babies have with oral feeding is the coordination of sucking, then swallowing, and then breathing. He says that a normal baby breathes at about 40-55 breaths per minute, and Whitney breathes at 65 breathes per minute. She needs to breathe a little faster because she has a smaller right lung. However, the faster breathing sometimes, with some babies, makes it more difficult for the baby to learn how to suck, swallow, and breathe in a rhythmic pattern. The good news is that Whitney didn't seem to encounter any problems with this oral feeding pattern for those 5 mL of milk. I've got high hopes that Whitney will pull another miracle recovery act on us again when she shows us she'll have no problem with oral feedings. Time will tell though.

So that's pretty much it, got off the high flow nasal cannula, reduce the feeding times, and learn how to oral feed. Then come home! They said that she can be on a regular flow nasal cannula and come home, but they doubt that she'll even need that. They can't say how long this will take, and that Whitney will set the pace, but if Whitney continues this rapid rate of recovery, it won't be too long from now. As parents, we're very excited!

This week we're going to hunt down a good Pediatrician, one who has dealt with CDH babies before. We have a list of names of Pediatricians that the hospital coordinator says that they prefer and work very well with, so we'll check them out.

Whitney is now able to wear clothes! The hospital provides "Straight Jacket" like clothing, which is cute... but not as cute as some of the clothes we have at home and some of the clothes Whitney got from the baby shower. So we're going to bring in her own clothes during our next visits and see how they look on Whitney. Photos are surely to follow soon.




Saturday, August 14, 2010

Video: Whitney's First Vocalized Sounds

Whitney's first audible cries! This was taken just a few short hours after they extubated her (took out the tubes from her mouth). If you need to compare Whitney's cry to the sound of a full blown baby cry, just listen to the crying baby in the background.

Friday, August 13, 2010

Good News: Extubated

Whitney Kaholumehekainani Montgomery is 3 weeks and 2 days old.

We called the NYICU (Nursery Intensive Care Unit) this morning when we woke up around 8AM, and they said the nurse was on break but Whitney is doing good. We needed to bring in my breast milk for Whitney so we left for the NICU around 11:30AM. Thomas called again just to let them know we were coming with it and to visit her. The nurse said that they EXTUBATED her! At 9:15AM. That means they took her off the ventilator and put her on the high flow nasal cannula! They didn't say that this morning when we called so I was very surprised. I wish I were there for it because this is an amazing step toward getting all better. I feel like I'm missing a lot of achievements and cute things she does. Whitney looks beautiful and is doing fantastic! It was amazing to see her this way! We are so happy.

Now she has her feeding tube down her nose, and nothing in her mouth! We heard our sweet baby girl cry today for the first time! We heard her make a little peep when she was born. Her cries today were so sad, and soft. She basically has a very sore throat but it should get better in a few days and she'll be screaming loud and clear! I'm so excited! :) Whitney's getting 40 mL's of milk and they are increasing it by 5mL every 12 hours and weaning down on the TPN (nutrients that get to her via Broviac). Once she at 70mLs they'll take out the Broviac, and that means they get to bathe her! She is tolerating her feeds very well and I hope to someday breast feed my baby. We'll see!

Today, Whitney and I bonded. Skin to Skin. They call it Kangaroo Care. It was so nice to be able to hold my baby on my bare chest. I held her there for over 2 hours! It was such a good feeling and something I yearned to do since she was born. I love my daughter so much. I know she is doing so well because Heavenly Father is answering our prayers, every body's prayers.

The nurse told us to find a Pediatrician soon so that we're not doing that at the last minute. They gave us a list of 3 Dr.'s that they recommend. So that is what we will be doing next week. I guess we just meet with them and see which one we feel most comfortable with. And of course to make sure that they know how to take of babies with CDH. I think that after all this, I'll turn out to be one of those...'helicopter moms'.


And we bought Whitney a crib today! I found it online at Walmart, we also bought a mattress of course. It'll be here in "7 -10 business days." I could have done this earlier but had no time. I've been looking at cribs and mattress for a long time (since early pregnancy) and I'm so happy that we could get one for Whitney! I washed all her newborn and 0-3month clothes, but she probably won't fit into her newborn outfits, sad. She doesn't wear the newborn diapers anymore. Sorry for talking on and on and boring, but I haven't written for so long. Oh well, thanks for reading!

Wednesday, August 11, 2010

Sweetie Pie! ...and a nice surprise ending...

This video was taken on the evening of 8/10/2010. We got to hold her in our arms again and we love to talk to Whitney. She is very responsive to both her mommy and daddy. The ending might be a little nostalgic for some of you veteran parents out there. For us it's all new.




As far as an update on her condition: She is still doing very good. For the most part she is digesting her feedings well except for an occasional throw-up here and there (hint: see video). They are still slowly weaning her off the ventilator.




Whitney has been living in a crib now since Aug 6th, and one of the nurses found a musical toy that now sits in Whitney's crib. They also made a little tent for Whitney so that she wasn't bothered too much when she's trying to sleep.






Check out Whitney's crib!

Tuesday, August 10, 2010

Feels like we're really a family

Thomas writing!

I've never been more excited knowing that I'll get to really be a dad now, and my love for my little Whitney keeps growing more and more each day I see her. It's really starting to feel like we're a family. on Aug 6th, I got to hold my daughter in my arms for the first time. I was nervous because she still had her ventilator taped to her mouth, which was all attached to the breathing machine, but I was able to get comfortable and relax with my baby. I got to look into my daughter's eyes and she looked back up to me. I could feel the warmth of her body through the blanket that swaddled her. It was amazing! She felt so delicate in my arms. Incredible!

When Whitney was super critical and hanging on to life support, there seemed to be an invisible emotional wall between Whitney and me that kept me from feeling a strong bond with her, sort of like an emotional defense mechanism. If anything bad were to have happened to Whitney as the doctors originally anticipated, I didn't want to be a total emotional train wreck (guys CAN have emotional tran wrecks, too). I needed to be strong for Alicia, for our relationship, and for myself. I know perfectly well where ALL infants go when they pass away, and I have a strong testimony of the gospel Jesus Christ and of the plan of happiness that he has set in motion. So I didn't need to feel bad. But still, it's a complicated feeling that I think few if any of my close friends and family truly can relate to.

I remember driving to and from the hospital in those first several days. I had a lot of conversations with God during those short drives, pleading with Him to save my daughter and to acknowledge the prayers and faith that so many of you have offered. At the same I was afraid that maybe what I wanted wasn't what God wanted. And that if that was the case then I plead that I could accept His will.

The doctors had talked to us about ECMO many times and you could tell that they didn't really want to do it because of the low success rate and the pain, discomfort, and possibly lifelong mental and physical complications it could cause to the baby. As the father, I certainly don't want my baby to endure pain, suffering, or complications, but the other alternative was "Comfort Care", which is like hospice for infants. I couldn't discern what was the right thing to do. Was there a right or wrong choice? I didn't know, and I still don't know. But Heavenly Father had a plan for whitney that he didn't want messed up by a confused dad, so Heavenly Father worked through Alicia the mom. I wasn't with Alicia when she signed the consent forms to put Whitney on ECMO because I got to the hospital just 10 minutes too late. The doctor was just leaving Alicia's room when I got there. When I saw she signed the ECMO consent forms, I felt very relieved because that decision was now behind us. Alicia was firm in her decision to put Whitney on ECMO, she's always been firm in that decision. If Alicia had put up any "emotional defense mechanisms" like I had, then I surely couldn't tell because she fought to make sure that Whitney was given EVERY chance possible to survive. In hindsight I'm so glad Alicia took the helm, because Whitney is a miracle baby and is beating Right-Sided Congenital Diaphragmatic Hernia against all odds.

The doctors said that they expect to have Whitney in the NICU for at least another two weeks or more depending on if they can take her off the vent completely, if she can tolerate feedings, and if she heals up without any complications. Two weeks would be considered a Home Run, but we'll keep our fingers crossed.

An update on Whitney as of today:

1) They turned down her ventilator to 25. Don't ask me what that number means, 0 is the best which means there is no more ventilator support needed. The ventilator settings used to be much higher than 25, and they have been decreasing the settings without interruption for several days now. They said that when they get down to around 20 they may try and see how Whitney does without any vent support.

2) Whitney is completely off Morphine (as of 8/5) and completely off the Fentanyl (as of 8/7). These are two of the pain medications she's been using, and she's been doing just great without them. There were withdrawl symptoms, so they they didn't just cut off the meds, they had to wean her off them, but as of the aformentioned dates, she's received none of those drugs.

3) Both Alicia and I have been able to hold our beautiful daughter in our arms several times and it's the most awesomest feeling in the world!

4) At first Whitney wasn't tolerating her feedings and threw up each feeding she got. The doctors figured that it was because of her surgeries and withdrawl symptoms, so they decided to let Whitney rest a couple days. They tried doing feedings again yesterday and today, and she has been digesting it just fine now that she's all calmed down and rested. They are increasing her feeding quantities from 5mL every 4 hours to 10mL every 4 hours. The rest of her nutrition is still fed to her through her Broviac catheter. Slowly but surely. When she gets off the ventilator, they will try feedings using a nipple. We can't take Whitney home until we the parents are able to feed her.

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PS: We love reading everyone's comments!

Photo Log: Day 16 - 19, Aug 5 - Aug 8


August 5, 2010
Here are some additional photos capturing Alicia's joyous first moments with Whitney in her arms. See how adorable Whitney is. I had to miss this because I was attending classes at Arizona State University. I'm taking a 16 week course condensed into a 5 week summer course, and I had already missed 3 class sessions. This is about equivalent to being absent from class for about a 3rd of the semester. I really couldn't afford to miss any more days of school.












August 6, 2010
Taken the next day, I was also able hold Whitney in my arms. It was absolutely an amazing experience holding my first child in my arms for the first time after all we've been through together.














We were able to put some socks over Whitney's feet. Behold Whitney's first pair of booties.









Of course, Alicia got to hold Whitney some more.






August 7, 2010
We invited Bishop Bird and his wife over to see Whitney up close and in person. While there at the Whitney's bedside, the Birds gave Whitney the gift of a bird, a beanie baby rooster by the name of Strut.





When we left the hospital this day we decided to take a tour of the St Joseph's Hospital grounds. We took pictures of some of the statues. Here are some pictures of St Joseph himself.








The Patient/Visitor's parking garage has 5 floors. We rarely ever park on the 4th floor and the 5th floor is barracaded off so you can't drive up there. However, the elevator still will take you to the 5th floor. Alicia and I decided to be adventurous and check out the forbidden 5th floor parking area. When we got up there we were taken by surprise by how beautiful and calming the drifting clouds and inspiring sunset were along with the vistas of the mountains behind the city skyscrapers. It was the most unusual place to find zen-like peace.











August 8, 2010
Just a couple of pictures of Whitney sleeping.