Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Monday, September 27, 2010

Lovin' Home!

It makes me so sad to read about the Cherubs who lost their battle with CDH. And sad for the babies who are still fighting. Sad for the parents who have to go through what I did. It is so real to me and hopefully you too from following Whitney's journey of survival. http://www.cdhsupport.blogspot.com/






yesterday I was visiting some friends and I came home to an amazing gift from a family we know from church. God still answers prayers, even worldly needs like money! We are so so grateful! Thank you everyone and I promise after this, I'll vacuum, and finish writing my thank you notes, just because I have them and want to personally thank all. Whitney got some new cute clothes as well from friends and family!

Bottle feeding is expensive, and now there is a recall on the formula we use! That was Frustrating! Whitney is on a special 24 calorie diet (compared to normal 20 cal.) So we have a recipe to get the added calories. Now we have to buy the concentrated liquid and add water. ($5 a day). Luckily Thomas went back to work and now we can pay some med bills!








i did a little Turbo Jam with my mom this morning! yay! It's fun stuff to exercise! Whitney had just eaten and was sleeping on her belly on the floor. And I still have to shower and make some phone calls to some doctors! Oh and go to the bank! Wow, never knew there was so much to do!
Also I need to get more pictures printed for the photo album, I'm way behind on that because we are waiting for walgreens to do 10 cents a print and we do like 100 at a time (we have a million!)


Whitney went to the Pediatrician the other day (with the help of my mom) and got a couple of shots. We feel that she does need to be vaccinated but spread out as much as possible and only the important ones first! She's not going to be exposed to Hep B or Polio any time soon! So they will all get done eventually. I also have to give her multivitamin with Iron due to ECMO stuff. She cried more with that than the shots! Speaking of shots, I have to go the dentist next week, blah!






also the other day my mom was talking to my aunt whose sister is a sonographer (ultrasound tech). My aunt shared Whitney's story with her and she said that in her 20 + years, she has never seen a Right sided (liver up) CDH baby live! I know there HAVE been survivors but it's just another example of how rare it is and a testimony builder of faith and priesthood power!


Whitney is really enjoying her baths these days! So cute and free and clear of nasal cannula's (only for the bath).


Chunky Monkey bouncer!




Also the other day, when she was sleeping on the activity mat, I put some pony tails in her hair! Yeah, it's that long! I could probably do four or five at a time, but only when she's asleep!





Sunday, September 19, 2010

5 Days Gone By!

Whitney is 60 days old or 8 weeks and 4 days.

Alicia, mommy to RCDH & ECMO survivor Whitney Kaholumehekainani, writing here. These past few days have been crazy and amazing having my daughter home. First off thankyou all for you comments and love and support and for reading my blog about us and Whitney's journey to survive. She is thriving here at home! My mom is obsessed with her, in a good way, and helps out so much. My dad also loves her to pieces. My brothers think she is fun but don't want to hold her yet :)

Last night we were worried that she wasn't getting enough to eat and that something was wrong because she was screaming when we tried to feed her. So Thomas called our pediatrician and all they say is take her to the ER. So even though we really didn't want to we, wanted what was best for Whitney. So we packed our daughter up, which means taking her portable oxygen tank, the pulse oximeter, her binder of records, her diaper bag, and of course Whitney! We made the 30 min. drive back to St. Joe's. They drew blood (I couldn't stay in there for that because I was bauling), did an ultrasound of her chest, and took an xray, and weighed her. Everything came back normal and she gained weight. The Dr.'s say as long as she is urinating and gaining weight she is getting enough to eat. We were just kinda focused to much on numbers. All in all we were there for a very long time and didn't get back home till 5am this morning. Whitney is thriving.

The day she came home was the happiest days in my life! She is my little (big) miracle! I love being a mommy! So we will see what life challanges brings us this week when my hubby goes back to work! I'll be a true stay at home mommy, or as I like to say a domestic engineer! Trying to keep Whitney as happy & healthy as can be!

Wednesday, September 15, 2010

Whitney is HOME!

Happy Day! We are thrilled to announce that on September 14, Whitney left the hospital and has come home! After nearly 8 weeks in the NICU, she is now where she truly belongs!

We slept overnight at the NICU the night before she was discharged. The nurses and doctors agreed that because she is feeding enough through the bottle, she should be fine at home. They still want her on the oxygen, low flow at 1/4 Liter. So although she is free from the hospital, she is still bound to being connected to both an oxygen tank and a pulse oximeter (which reads both her heart rate and blood oxygen saturation.

A lot happened yesterday as we packed up our things and started the trek back home and it was very overwhelming, in a good way. It would take me forever to write in detail all the things that happened, but the main thing that's important is that our baby girl, Whitney Kaholumehekainani Montgomery, is a right sided Congenital Diaphragmatic Hernia survivor. She is an ECMO survivor. She is our little miracle. Now we get to finally worry about other things other than if she will ever get out of the hospital. Our hearts are full of joy, of praise, of thanks. It feels so good to be able to hold her in our home, in our room, to put her in her crib, to be able to get to know her and see her grow. Feels oh so good, just it should. We are parents who have a baby living at home!

Here are some pictures!

BEFORE (HOSPITAL)






AFTER (HOME)









Monday, September 13, 2010

Maybe This Week

Thomas writing.

So another week has gone by and Whitney is still in the hospital. She has been feeding very well. In fact, she's fed so well, that we can't really see any reason why to keep her at the hospital longer. She's been needing to feed at least 90 mL every 4 hours by bottle, and she has taken at least that if not more for the past 2 or 3 days straight. So we are expecting to have Whitney home this week. We've discovered that the only reason that Whitney may not have taken the full 90 mL before was because some nurses that took care of her would quit trying to feed her after 30 minutes, they would simply give up on Whitney early because they were too busy with taking care of other babies in the NICU. Our weekend nurses (both day and night nurses) are very experienced and have been excellent and understand that Whitney may need a little more time than 30 minutes to be able to finish her bottle. So the weekend nurses say they will make sure that the weekday nurses and doctors understand this so that they don't quit on Whitney prematurely.




We're starting to be able to play with baby Whitney! And I mean actual playtime, where we're not just looking at her in her crib and commenting about how cute she is, but rather taking her out of the crib, putting her on blankets on the ground and having some real interactive hands on playtime. She's getting tummy time and stretching excercises, too. Whitney is starting to be able to hold her own head up by herself as well and looks around. I just noticed that she was able to do this yesterday!




My parents came over yesterday and were finally able to hold Whitney in their arms. We let Alicia's parents hold Whitney a couple weeks ago, and have been wanting my parents to get to hold her as well, but every time they came over, Whitney was sleeping. We don't bother Whitney when she's sleeping because she needs the energy to be able to take a full feeding.



With Grandma and Grandpa Holmgren.




With Grandma and Grandpa Patterson.




Whitney holding onto her bottle as she eats her food.




Whitney on the floor doing some tummy time.




Daddy and uncle Clayton playing with Whitney on the floor.




Eating a delicious cupcake!




The young "Achievement Day Girls" (under age 12 girls) in our church held a fundraising event call "Cupcakes for Whitney", selling cupcakes for $1 each to help us cover some of the costs associated with Whitney being in the NICU. They did an excellent job and their efforts and contributions are yet another prayer answered to our small family.




Whitney in her Boppy pillow!




Here's a shot right after we got Whitney's hair wet and matted it down.

Tuesday, September 7, 2010

ADORABLE!

Thomas and I and the Nurse's are all helping Whitney eat. But Dr. L. says she needs to eat better! I don't know. She is drinking from the DR. Brown bottles using a Preemie nipple, soon we'll try Level 1.




And we burp her really well so she doesn't spit up alot. Just love her face! She is on the nasal cannula here now to help with pulmonary hypertension. It it better now and helping her eat.



Whitney chillin in her crib waiting for mommy and daddy to play with. She still has the feeding tube in this pic but it's out as of Sept. 5th. Makes me wanna drive 30mins to just go hold her right now!




Whitney in a bouncer seat at the NyICU. They have some stuff like this for the babies to use. She's in a new outfit I bought her and holding one of the rings I bought her.


So I left her for just a minute, all wrapped up. I came back and she kicked herself out of her blanket! So funny. She really loves to kick and she's really strong. She needs one of those things that light up and plays music when she kicks it! ;)




Here a few pictures from today! This was her very first time in the car seat! They do a car seat test just to make sure she does well in it for an hour. Normally they just do it with preemies but wanted Whitney to do it too. I loved seeing her in her car seat!



Thomas is such a good daddy! She was crying a little and he just got right up and picked her up to calm her down! Wonderful! Whitney loves her daddy too! Thomas doing well in school so far.





Alicia also loving Whitney! She's actually looking at Grandpa P. who came down during his lunch hour to visit, then took us out to lunch! We had our dental cleaning appointments this morning! I miss my coworkers and patients!






Well the Doc has no idea when Whitney wil be home, like it could even be next week! Sad, but we do want what's best for her, personally I think she'll do better at home. But the Doc doesn't want us to stress at home feeding her and dealing with oxygen. I'm stressed anyway and think I would be happier when my daughter is home. But for now we are following Dr.s orders and visting Whitney everyday. Thank you all for enjoying our baby with us through this blog! And for your prayers!

I can't believe it's September already, my brain is still in July. I feel like I totally missed out on summer! Owell! I did swim quit a bit though. I don't mind staying indoors all winter, it's not like it snows or anything but I just don't like the cold! Maybe people can visit me, we'll see though! No sickness or crowds please! CONGRATS to my cousin who is getting married, and my other cousin who is pregnant, and another cousin who just had a baby!

Monday, September 6, 2010

Labor Day Delays

Well, its Labor Day, and the only labor that's performed at the hospital are emergencies. So Whitney isn't exactly considered an emergency anymore since she's doing so well. In fact, she's doing so well, that she probably can come home any day now. But the only person who can make that decision is her primary doctor, who has today's holiday off. So we're waiting until tomorrow to get another update as to when they think Whitney will be able to come home. The nurses all think she will be home by Friday this week. But its never 100% for sure, of course.

The question is if she will go home on oxygen or not, we don't want her on oxygen, but if that's what she needs to stay confortable, then we'll be glad to have it. Because there is still some minor pulmonary hypertention, the doctors have been discussing if they will want to trial Whitney on an anti-pulmonary-hypertention medicine called Sildenafil. This doesn't sound so unusual, until you learn that Sildenafil is also known by its more common trade name, Viagra. So they're considering putting our baby girl on Viagra! So Viagra apparently is good for more than just men suffering from erectile dysfuntion. I really couldn't believe it, so I did some internet research and found that some babies with pulmonary hypertention have been successfully treated using this drug. Of course, when its used for pulmonary hypertention, they can't call it Viagra, instead its called Revatio, but its an identical drug. This treatment was approved by the FDA in June 2005, so its still new. It still sounds weird to me. So I'm still hoping they won't have to give her anymore medicines if they're not necessary, but this was just one of the things they were talking to us about this past week.

Today I spent the morning cleaning up our place and getting it ready for Whitney. We also painted a nice big sign that says "Welcome Home Baby Whitney!" in our anticipation of her coming home soon. We're all getting really excited for her big homecoming which we really hope happens this week!

Saturday, September 4, 2010

Feedings Are Improving

This morning we got a call from the NICU, telling us that Whitney took 99 mL of formula! This is the most she has ever taken! In fact, the bottle only held 100 mL, so she just wasn't able to suck out that last one due to the bottle. Her normal plan is to take 90 mL of formula, but she was hungry and took even more. And then on her next feeding, she took 82 mL. Basically, she hasn't had to be tube fed at all this morning! This is very very good news! Our primary day doctor says that since she's doing so much better now, they will start feeding Whitney whenever she looks hungry instead of on a strict 4 hour schedule and will monitor how much she can take over a 24 hour period. We are very hopeful that perhaps this is the start of the end of Whitney being in the NICU! Only time will tell, but we're rooting for Whitney here at home!

Whitney is slowly gaining weight, which is also very good. She is peeing and pooing regularly, also good. We are so excited for Whitney. We feel so blessed and that God is watching, protecting, and healing our daughter.

A quick update from last post: She is still on the oxygen, which is possibly one of the reasons she is able to feed so much better now. We don't know this for sure, but its a theory that seems to be working. The infection is gone around her scar area, and she is back to normal there. We have narrowed our future Pediatrician down to a couple prospects, and feel that whichever one we pick will be the right one for Whitney.

Wednesday, September 1, 2010

Back On 100% Oxygen, Infection, and more Pediatrician Hunting

Thomas writing. I hope the titled didn't scare anyone, let me explain...

Whitney is still working on her feedings. With regards to her feedings, she has good days, and bad days, then really good days, and then really bad days. There isn't much consistency, which is what the doctors and nurses are needing to see. While Whitney is being able to take in increasing amounts of formula by the bottle, the progess is going slower than the doctors were expecting. They had an echocardiogram done on Whitney and found that while she is able to breath and oxygenate all by herself without any additional oxygen support, she still does have some minor residual pulmonary hypertention still left in her lungs and it may be affecting her ability to eat. Lately, Whitney has only been able to take in between 25 - 45 mL of formula each feed before she either loses interest in the bottle, or just gets too tired to continue sucking and swallowing. Our primary doctor decided that since there is still some hypertention in her lungs, they wanted to put her back on the nasal cannula and provide oxygen support with the hopes that this will give her more energy so that she will not tire out so quickly during feeding times. So they put that nasal cannula back in her nose and gave her a low flow of oxygen. They set the oxygen level at 100%. When I saw this, I asked the nurse if that was necessary, and she explained that it was just fine and wouldn't hurt Whitney. Since Whitney isn't a preemie and since her eyes are already fully developed, it wasn't going to put her at risk for blindness or anything like that. I'm not a doctor and I didn't quite understand all the reasoning, but they explained that they weren't giving her the oxygen because she needed more oxygen in her blood (because she was her blood was saturating just fine), instead they were giving oxygen to help aleviate the residual pulmonary hypertension.

So she's been on oxygen for a couple days now. And whatever the logic was behind the doctors, it seems to be working. Since she's been back on oxygen, she has been taking in much more from the bottle than previously before. Like I mentioned, before she took between 25 - 45 mL on average, now she's taking in between 50 and 60 mL, one time she even took 72 mL of formula! So this is good news. The doctors would MUCH MORE prefer to send Whitney home with an oxygen tank than to send her home on a feeding tube. So we are looking to still be in the NICU for at LEAST another week or so depending on how much Whitney continues to improve.

Okay, the next thing we stumbled upon over the past day or so was an infection around the CDH repair scar on her belly. Half the scar looks just fine, and the other half started to get inflamated pretty bad. They called down the sureons who took a look at it. There was some fluid (mostly puss) that was building up around the incision site, and the surgeons had to squeeze a lot of it out, and then put Whitney on some anti-biotics to make the inflamation go away. *Sigh* More drugs, but anything to keep her from getting worse. We are just dying to get Whitney home!

One of the doctors who has been keeping a close eye on our Whitney asked us if we had chosen a Pediatrician yet. We mentioned a few Pediatricians, and this doctor wasn't familiar with who they were. The doc then advised us to take caution when choosing a Pediatrician, because Whitney has a very serious and unique case. Whitney isn't like other healthy children. So while its important to like the doctor, its even more important to ensure that the doctor has the experience and ability to do what's necessary and what's right for Whitney's unique case. Our doctor urgently recommended that we continue to seek medical attention at St Joseph's Hospital with regards to Whitney's ongoing pulmonary hypertention. If Whitney is discharged from the hospital with an oxygen tank, the NICU doctors wouldn't feel confortable letting the Pediatrician decide when its time to take her off the oxygen. The NICU would strongly prefer that our Pediatrician send a referal back to St Joseph's Hospital's cardiologists to make that determination since they were the ones who have been dealing with Whitney this whole time (even since before birth) and know her best.

Also, the NICU doctor says that if for any reason Whitney wasn't feeding fully and was losing weight or not gaining enough weight for her age, our Pediatrician needs to send an immediate referal to send Whitney to the Phoenix Children's Hospital (PCH) feeding clinic to get her back on track. The NICU doc says that this hospital is the absolute best at what they do and it can sometimes be hard to get into it because they are very busy. The NICU doctor is worried that some Pediatricians might see Whitney lose a little weight and not send the referal, but instead say for us to come back in a month or two to see if she's gained more weight. NICU doctor warned us that if we wait too long and she starts losing too much weight, her brain could be starved and become affected. The reason that its so important to make the referal early is because the PCH is very busy and early referals are needed to get into it in a timely manner.

So to recap: We need a pediatrician who is affiliated with Phoenix Children's Hospital and St Jospeh's Hospital and is willing to make the necessary referals as explained above. Our pediatrician needs to be very experienced and have a history of having dealt with children who were born with CDH. This might be a tall order, but it's needed.

I've read statistics that between 2000-2500 babies are born each year in the United States with CDH, only half survive, leaving only about 1000-1250 babies per year alive and who need a Pediatrician. There are around 800 different Pediatricians just in the Phoenix Valley alone. The chances of finding a Pediatrician who has genuinely dealt with a lot of CDH babies is probably very slim. This is frustrating just thinking about it.