Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

Daisypath Anniversary tickers

Daisypath - Personal pictureDaisypath Anniversary tickers

Lilypie Second Birthday tickers

Lilypie - Personal pictureLilypie Second Birthday tickers

Lilypie Pregnancy tickers

Lilypie Pregnancy tickers

Saturday, July 31, 2010

What does Kaholumehekainani mean?

Our daughter has a special Hawaiian name, Kaholumehekainani, which forever will be a family name. As Alicia mentioned before, having the stress of having a baby we love so much be subject to such a horrible condition, the name we originally picked out didn't quite seem appropriate anymore. We originally had the name Ka'imilani, which is a popular Hawaiian name which means "one seeking heaven". This was and still is a beautiful name and we chose it because we desired her to live a life that would lead her back to heaven. When we realized that Whitney had a serious life threatening condition, a new twist to this phrase, "one seeking heaven", started to intrude into our minds, that perhaps Whitney was wanting to leave us so soon to return to heaven. Whether this is fact or just our imagination, the meaning didn't bring the same peace to our minds anymore and the name had to go.

I sought help in finding a name from my family back in Hawaii, specifically from my dad and grandmother in Hawaii. They suggested some names to me, mostly some of which are family names. I won't mention them because perhaps someday we will use those family names, but my dad suggested doing research online to find some names that we felt were appropriate. I decided to do just that. I looked through a long list of names, most of them again were just popular Hawaiian names with pretty meanings. Still, I felt that our daughter deserved something more meaningful.

Looking in my personal Hawaiian geneology charts, I saw that many of my ancestors had long Hawaiian names that often had special meanings. This is what I wanted. I talked with Alicia and we both looked at some of the names that were used in my family history, and while we wanted to use a family name, we wanted the name to represent how we felt about our daughter, and a name that she would be able to strive to live up to.

I asked Alicia if she could think of a phrase that she felt would best describe what we wanted for Whitney. Alicia instantly responded to me saying, "Strong and beautiful like the ocean". I don't if this was an awe inspired moment for Alicia to say that or if that phrase was premeditated in her mind, but when I heard her say it, I felt a really good feeling inside.

Finding a literal translation for this phrase isn't as easy as looks, but I feel that Heavenly Father helped me find the perfect combination of words, flow of syllables, and meanings to do her justice. The name I came up with for our daughter is Kaholumehekainani, which to Alicia and I means strong and beautiful like the ocean.

Ka-holu-mehe-kai-nani (All consonants and vowels are sounded. The vowels are pronounced the same as they would be in Spanish.)

Ka - this is a prefix commonly attached to a name. It means "the" or in the case of a name it means "One who is..."

holu - this means "resilient", used to describe something that is pliable but is able to restore itself after enduring stress or pressure. In the Hawaiian language, "holu" is sometimes used when referring to the waves of the sea, which never fail to rise up again and again even after falling upon the shore. It is also used to describe the swaying of palm trees, which are strong enough to rise up tall even after being blown by strong winds. To Alicia and I, this means "strong". Our earthly desire is for Whitney to be strong, to be resilient, to be able to withstand and endure this world's trials like the palm trees endure the strong winds, but at the same time to be able to recover quickly from stress, pressure, and failures when she inevitably falls like the waves inevitably fall upon the shore.

mehe - a preposition that means "like", "as", or "as though".

kai - this means "Sea", referring to the ocean. In context it also refers to the seashore and the tide.

nani - this means "beautiful" or "glorious".

When you put the whole phrase together it literally means "One who is resilient like the beautiful sea". Whitney is our eyes is the most beautiful baby we've ever seen. We desire that she continue to be resilient and bounce back from her surgery so that she may have a chance to be able to lead a full life.

So the next question people will ask is, "Will you really go about calling her by that long middle name?" The answer is...sort of. I will call her by the last part of her middle name, Kainani, for short, and thank goodness for pronouns.

Update on Whitney's condition

First off, a quick update on Whitney. It's now been about 40 hours since her surgery and she has been doing just fine. She's been stable ever since they put her on the oscillator after the surgery. The oscillator is pumping 480 tiny gentle breaths into her lungs a per minute. They are keeping Whitney medicated to relieve her of pain and to keep her calm and sedated. Throughout this next coming week they are going to try and wean her off the sedation medicine if possible so that she can start feeding her tiny amounts of breastmilk hopefully shortly after that. So far not much drama since the surgery, for which we are greatful. We visited Whitney late last night around 11pm, we were away from the hospital the whole after noon and evening, and we wanted to say a quick goodnight to Whitney before heading back to our friend's place to sleep.

We got to the hospital and found that there was a new nurse we hadn't yet met working with Whitney. This nurse was pretty cool, she is a neat freak, which is not a bad thing. Whitney's bed setup never looked better. The linens were folded up so perfectly and the bedding was completely symmetrical, and Whitney was resting on her back and looked so comfortable. The new nurse introduced herself and she was very nice and personable. We liked her immediately.

Again, we only went there to say goodnight, but lo and behold Whitney decided to wake up and show off her adorable eyes again to us. It felt like we were only there for 20 minutes, but we looked at the clock and before we knew it, it had already past 1am. We were probably being naughty for keeping our baby up for so long, especially since the nurse did mention that Whitney needed lots of rest to recover from her surgery. We just couldn't part from her.

Whitney had a cute eye mask that we had gotten in a donated NICU tote bag and it worked really well, but sadly it was probably tossed in the hospital laundry with all the old bedding that Whitney had. The nurses felt bad that they lost the eye mask and one of the cut out a new eye mask from some sterile cloth material and drew a two sleeping eyes on the mask. It's not as cute as the first one, but it serves the same purpose and it still looks good.

My dad (first-time grandpa Montgomery) Bill Montgomery, flew down from Hawaii and arrived here in Arizona Thursday morning at about 3:15am. I picked him up from the Sky Harbor International airport and we drove straight to the hospital to see Whitney. My dad wanted to see his first grandchild in person before she went into surgery, and since the doctors (and Whitney) are always surprising us, we decided to be on the safe side and see Whitney right away (just in case they had decided to change up their schedule and do surgery in the morning). I'm so glad dad was able to see his granddaughter in time before the surgery. If he had flown in one day later, it could have been too late. I'd like to give a quick shout out to grandpa Montgomery's work for making his short but very positive visit possible.

Friday, July 30, 2010

Life After Surgery..

Life after surgery has yet to be written because Whitney made it through just fine and she is stable. They put her on an oscillator, which is the breathing machine they had her on before ECMO. She indeed has some functional right lung tissue. They found that she was missing roughly 75% of her right diaphragm and had to use a patch to cover the hole as it was too big to sew together. Whitney is hanging in there. More updates to come.

Thursday, July 29, 2010

Video: Her Beautiful Eyes

Here is a quick video we took, again with her eyes open. This video was taken just minutes before they took her off ECMO. She decided to be really cute right when we had to leave so that the surgeons could sterilize the room.

As I write this, Whitney is now undergoing her CDH corrective surgery. She is in the hands of the surgeons now.

Whitney's off ECMO, and Today is the Surgery

Yesterday at first was looking to be a pretty predictable day. We were going to go to St Joseph's Hospital and visit Whitney like we always do, enjoying her spirit of life and adoring her beautiful little body. The doctor's had tried to ween Whitney off the ECMO machine the previous day or two, but she didn't tolerate being off ECMO too long, so they increased the ECMO support and decided to wait a little before trying it again. We called the hospital yesterday morning and they said they confirmed that they were going to try and ween her off again that day. We brought some parents with us to also visit with Whitney. We got to the NyICU at about 12:30pm and they let us in to see our daughter. We weren't by Whitney's side for more than 30 seconds when the Neonatologist doctor came up to us wanting to talk with us about Whitney...

The doctor said that they tried to ween Whitney off during the morning, and it was amazing successful with no complications. So the doctors said that they were ready to take off the ECMO machine that very same day, in fact they had it planned for a 3pm removal. Again, not a minute or two after he said that, the surgeon walked into the NyICU and said that they were actually ready to take it off NOW, and they asked that we leave the NyICU so that they can create a sterile environment to perform the ECMO removal surgery at once. We were really surprised, and we were like, "Really?! So soon? Is it safe to do it now? Is Whitney ready?" Everyone there pretty much had smiles on their faces and said that while this is a surprise, this was a really good surprise, not an unwelcome one.

We left the NyICU and sat in the waiting area. Everyone else who had babies in the NyICU also got booted out with us in order to ensure they had a sterile environment to remove the ECMO. We were really nervous, but an hour later, the surgeon walked into the waiting room and told us that they completed the procedure and Whitney was officially off ECMO and that she continued to be stable. Actually, she seemed more stable off ECMO than she was on ECMO at this point.

The Neonatologist ordered a X-Ray on Whitney's chest, and yet again the results from the X-Ray were nothing short of miraculous. The doctor showed us side by side images of the her X-rays from previously and today. Before, she had very little left lung capacity and no sign of a right lung at all, yesterday while she was on ECMO her little lungs were collapsed and there was no air inside them and so you couldn't see them at all on the X-rays, they were collapsed mostly because she was on ECMO and she wasn't really using her lungs all that much. But then today after they removed ECMO and put her on a normal ventilator, the X-Ray showed that she not only had some left lung, but that it looked like she had a NORMAL size left lung for an infant! The X-ray also showed what might possibly be a bit of inflated right lung as well, althought they can't confirm that for sure, saying it might actually be the left lung protruding into the right chest cavity. They will be able to confirm how much right lung she really has if any when they perform the corrective surgery.

We've thought about it long and hard and have decided that a miracle has been wrought here. Her ultasound pictures showed (and I quote) "a bad left lung, and a worse right lung." This dismal picture was also confirmed through an MRI scan. And now the X-rays show a normal looking left lung, and possibly just maybe some functional right lung tissue. This is wonderful news, but how did this happen?! The doctor couldn't explain it, but says that they so far have been blown away by how well Whitney has been fighting. I've no doubt that Heavenly Father is aware of Whitney and his inbox is being flooded with prayers and faith for Whitney's recovery.

The doctor that is normally all about gloom and doom is now very optimistic for Whitney. He originally kept reminding us that these babies only have a 20% chance of survival trying to prep us for a sad ending. But now this same doctor is talking about what Whitney's FUTURE may be like. It was SO nice to hear this for the first time. Nobody has ever mentioned anything about what might be in store for Whitney's future simply because they didn't think there would be one. He explained to us the challenges up ahead in regards to feedings, explaining that ECMO survivors are sometimes able to lead normal lives. He said that since one lung was bigger than the other, that pressure on the spine may be uneven and that when Whitney reaches her teens, she might develop scoliosis. He explianed that since ECMO is a relatively new procedure (its only been around for about 40 years or so), they obviously don't know what the long term effects are or what the expected life expectancy is, but that they oldest ECMO survivor to date that had it as an infant is now either in her late 30's or early 40's.

As we listened to the doctor explain all these things, all we could really hear was "you'll be able to feed her," "she'll live through her teens," "she might be able to live a normal life," "She may live to her 40's and beyond." We understand fully that she won't the most healty girl ever, but now we have hope of raising her. The nurses are very careful not to give her too much artificial oxygen so that she doesn't go blind, and they didn't see any bleeding around her brain so hopefully she won't have mental handicaps.

Of course, she still has many hurdles to jump over before we are in the clear. The surgeon made it clear to us that although she looks great today, she could decline, deteriorate, and die at any time due to a number of complications. Again, a little gloom and doom there, but talking with the nurses that take care of all the NICU babies says that ANY baby could deteriorate any any time and that ours isn't at anymore of a risk of that happening than any other baby now that she's off ECMO. I hope that's true. Her next big hurdle is the CDH corrective surgery. This is scheduled for today (7/29) tentatively at 7:00pm Arizona time. Even being off ECMO (which is a 100% better compared to being on it), there is still a significant risk of not surviving the surgery. So Alicia and I are still scared because it indeed would be very sad for us if she got this far only to return back to heaven from this hurdle. Of course we acknowledge that the Lord has his timing and his purposes already set in place and we are at His mercy. But we are REALLY praying hard that Whitney can make it past this surgery. We love her so very much and she is and forever will be a member of our eternal family.

Whitney has already received a Priesthood blessing (some people were still wondering about that) and so all Whitney needs now from everyone is their continued prayers and faith.

FUN FACT: Whitney is the 367th patient at St Joseph's Hospital who has ever received ECMO treatment since 1987 (which is when this hospital started doing it).

Tuesday, July 27, 2010

Video of Whitney Awake

Photo Log: Day 5, July 25

Behold the professional talent of Leslie Styler (www.lesliestyler.com). Please keep in mind we only had about a 6' x 6' (maybe even smaller) space to work with the entire time due to the cramped work environment in the NyICU. You can click on the photos to see them enlarged and in more detail.


This was the original photo.




Leslie Styler was able to edit the photo to make Whitney look much more clean and confortable. Can you spot the differences? Amazing, huh?!




Add a little Black/White effect and the picture becomes timeless.




Whitney and Daddy's hand.










Whitney and Mommy's hand.






















Whitney was born from our love.
















Whitney and Mommy's hand.



Whitney's Eyes Are Open

Thomas again. Let's see, last I updated was Saturday. What's happened since then... a lot, but nothing bad, thank goodness.

We feel so blessed to have so many people thinking of and praying for Whitney, Alicia, and I. Perhaps its because of all of you that Whitney has been doing so well for so long. As we've had more and more time to get to know Whitney, our love for her only gets deeper and more profound, which we think is a good thing, no matter how things turn out in the end. So many of you have offered your help and services, even from complete strangers. One such good Samaritan is a professional photographer who offered to take professional pictures of our baby for us at no cost. The walls of the NyICU are lined with beautiful pro photos of recovering babies and Alicia and I have thought of maybe getting some someday but with being so busy it wasn't going to happen. When this photographer offered her service, it was like a prayer being answered and she came over that very same day (Sunday).

The photographer is Leslie Styler from the East Valley here in Arizona. You can visit her website at www.lesliestyler.com. She did an incredible job and the finished product nearly put tears in our eyes because they were so beautiful and bittersweet. I'll be posting some of the photos today.

Sunday night was our last night that they allowed us to stay in their Koala Bear Room, which is a basically just a room they allow parents of critically ill babies sleep in so they don't have to travel from home. It was sad to go because now we can't be just 30 seconds away from our baby, but because God loves to answer our prayers, we were able to stay with nearby friends that live only 10 minutes away from the hospital.

As we've been fairly regular patrons at the NyICU, we come to get to know most all of the nurses that take care of Whitney. All of the nurses absolutely love Whitney (with the exception of one of whom I will not say more). We were bedside with Whitney yesterday evening (Monday evening) at 7pm, which is when the daytime and night time nurses hand the shifts over to the night time nurses. As the night time nurses came, two of them were begging to be Whitney's nurse for the night. One said to the other, "I called ahead so that I could be Whitney's nurse." And the other would respond, "But I took care of her last night and I know her so well!" Alicia and I know both nurses and they're both really good, so it was funny, even heartwarming to know that Whitney is loved so much.

This morning, Alicia and I returned to the hospital and to our surprise, we found the nurses all gathered around Whitney. Nobody had worried looks on their faces, but just a little concern because for the first time Whitney was wide awake! For the first time we got to see Whitney conscious and awake with both eyes open. The nurses explained to us that she just woke up less than an hour ago. They were concerned because if Whitney was awake, then it probably meant she was in pain which lifted her from her sedation. We were there for at least an hour trying to get Whitney to "sleep" again (they increased the sedation medicine and gave her some more morphine). But after continued monitoring the nurses were amazed, saying that Whitneys vitals looked better when she was awake than when she was fast asleep. They said that that's just the opposite of what they would have expected normally. And just to be on the safe side, they wanted her resting again.

But while Whitney was awake, Alicia and I took full advantage of it. While awake, Whitney wasn't so agitated by physical touch, so we got to hold her hand and arms, and touch her legs, feet, and her head, and give her a kiss. We took lots of pictures and video for keepsake. Whitney was aware that her mom and dad were right beside her. Whitney took turns looking at mommy, and then back at me. We softly sang to her the Hymn "Families Can Be Together Forever", and that seemed to calm her down quite a bit. We eventually got her rested up and back to sleep. It was a moment I'm glad I didn't miss.

Saturday, July 24, 2010

Photo Log: Day 4, July 24



I got up early to see Whitney and found the nurses paired her up with her new friend, Funky Bear.




She still has her purple bow and awesome hairdo.




Funky Bear! Alicia's has had this bear for many years.




I liked it so much, I couldn't stop taking pictures!




Okay, I swear this is the last one. How cute!




Later on they did a head ultrasound to check if there was any bleeding around her brain. The results came up clean, but the ultrasound gel messed up her awesome hairdo, so Alicia gave her a Flamin' rockstar hairdo.




Whitney resting peacefully with her two guardians, Funky Bear and Birthday Bear.




Mommy and Whitney.




Daddy and Whitney.




Alicia and I went to see Whitney again tonight and found the nurses constructing a shoe-string-like set-up with the ventilator tubes. They set it up this way so that the tubes didn't rest on her chest. Any little thing to help reduce pressure of her chest helps.




Mom and Whitney holding hands.




I like the detail in this photo, just precious.



ECMO Treatment

Hello all, this is Thomas writing again. Alicia likes it when I right.

The nurses say that Whitney has been pretty stable on ECMO since she's been put on it. The charts say that the exact time she started ECMO was Thursday 7/22 @ 1:13pm so that means she has been on that life saving machine for over 57 hours now. We had received a call from the surgeon saying that she seems pretty optimistic that Whitney may be ready for the corrective surgery by sometime mid next week if she continues to be stable on ECMO, but of course things could easily go wrong in a moment with ECMO, so we're still needing all the prayers we can get to ensure the machines don't fail, that the blood doesn't clot, and that Whitney herself can be strong enough to tolerate the current treatment.

The future seems a bit ominous. In the X-Rays, they can only see the left lung. They can't see any of right lung, not even a little bit. The doctor tells us that its not like she has a good lung and a bad lung, but rather more like she has a bad lung and a worse lung. This is not good, but the doctor's haven't completely given up hope yet. They even told us right up front that if they felt that putting Whitney on ECMO was 100% futile, then they wouldn't give us that option to begin with. So what I take back from that is that there still is a chance, and Alicia and I are looking toward that glimmer of light in these dark times.

The nurses change Whitney's position every 4 hours to reduce swelling. This is nice that they have to change her position so often because then we get to come back at least that often and enjoy looking at her doing a new pose. She's our little super star and Alicia and I are the paparazzi, just taking a snapshot of her at every opportunity.

Both Alicia and I have now had the opportunity to change Whitney's diaper once. Alicia hasn't seen Whitney's eyes open yet, but I've seen them twice so far, once when Whitney was just born she opened her eyes, and then again when the nurse checked her eyes and I was there alone. There's no way to tell her eye color yet, but it's probably going to be brown, just because.

Alicia and I are very much aware of all the prayers and support that so many people are expressing and giving and we can't thank everyone enough.

Photo Log: Day 3, July 23



Whitney finally was able to get her hair cleaned up! Before it was matted down to her head from birth.




We love her hairdo, it just kind of ended up this way after cleaning it. Her hairdo reminds me of those wishing good luck trolls. They had just cleaned her up and from this angle you can barely tell she has any ECMO tubes coming out of her.


Photo Log: Day 2, July 22



Alicia & Thomas with Whitney.




We can only gently touch Whitney at this time.




Mommy giving Whitney a kiss.




Watching over Whitney.




Whitney liked having her hand up by her ear. The nurses took advantage of this and put a cotton ball there like a little ear muff. This is our last picture of Whitney before they hooked up Whitney to ECMO.




Whitney on ECMO, you can see the two large tubes coming out of her neck.




This is what the ECMO circuit looks like.




Three generations, Grandma Patterson, Mommy Alicia, and Baby Whitney.


Photo Log: Day 1, July 21



Alicia and Thomas and our first moments with baby Whitney.




Hand in hand, Whitney and Alicia.




We share the NyICU with other sick babies, behind Alicia is an incubator that constantly shines a bright blue light.




Whitney has lots of dark brown hair, just like her father!




Close up of Whitney's beautiful face.




All hooked up to the breathing machine and monitoring devices.




She is finally here!

July 23, 2010

This is Thomas writing. These past couple days have been very crazy. But alas, we can proudly announce the following news: our baby girl has been born. She was born on Wednesday, July 21, 2010, at 3:09 Arizona time (MST). She is 6 lbs, 10 ounces and 19 ¾ inches in length.
-
Our birthing story began on Monday morning, which was the original induction date scheduled. The plan was to go to the hospital with all our stuff ready in hand for a hospital stay. Dr G did an exam on Alicia, and nothing had changed and said that Alicia’s cervix wasn’t ready yet. Dr G decided that Monday wasn’t going to be the day that Whitney would be born, and we were sent back home after having been advised that they would call us as soon as possible and set a new induction date. We were called early the next morning by the nurse from Dr G’s office saying that they wanted to go ahead with the induction process that evening at 5pm. We showed up at St Joseph’s hospital again, but this time instead of going to Dr G’s office we were told to go straight to Labor and Delivery.
-
We showed up with all our gear and we were immediately admitted in and placed in a birthing room. As the doctor had warned and as we expected, there initially was some confusion with the nurses about what our birthing plan of action was going to be. It actually took a little while before we felt comfortable that all the nurses fully grasped what was going to happen. The plan was to progress into the labor in the normal birthing room, but when Alicia was ready to push, they were going to cart her off to the operating room where a whole team of doctors would be ready for the actual delivery.
-
On Tuesday evening, they checked Alicia’s cervix again, and it was still firm and not very “ripened” yet. They used Cervidil, a cervix ripening agent, in order to soften up the cervix before sending the Pitocin through her blood to induce contractions. Alicia wore the Cervidil for 12 hours (overnight at the hospital) and then they removed it and checked her cervix again. This time it was nice, soft, and ready for baby. They started the Pitocin at around 10am Wednesday morning.
-
Alicia started having noticeable contractions a few hours later, and they started to get progressively stronger and stronger. Alicia had already decided she wanted an Epidural, and at about 2pm she was dilated to 4cm and the pain was getting more intense. She got the epidural at that time and she instantly got less cranky when the medicine started to kick in. I was pretty happy about that. While she was getting numb I decided it was about time to get a quick bite to eat since I hadn’t eaten lunch yet. The delivery rooms are on the 5th floor, but I ate on the 1st floor because Alicia wanted absolutely no food smells in the delivery room. I was gone for maybe 10 or 15 minutes eating and when I came back, Alicia said to me that her water broke while I was gone. The nurses came in the room and was going to put a urinary catheter into Alicia, before the nurse was even able to put in a catheter, she said that the baby was “complete” and was ready to come NOW. Only an hour after the epidural!
-
It was very emotional for Alicia, mostly scared because we didn’t expect it to come so quickly and suddenly. We were told that it would probably take a few more hours, but now we were suddenly being carted off to the operating room (O/R). I was right alongside Alicia as we were wheeled off to the operating room, also helping to push the bed along. I had to put on a sterile suit, shoe covers, head cover, and mask. I sat right at the head of the operating table with Alicia, surrounding us there were 8 or 9 people, a combination of nurses and doctors from both labor/delivery and from the Nursery ICU. There were so many people there within minutes of Alicia arriving. Only I was able to come with Alicia into the O/R helping to coach her and support her head as the nurses and doctors instructed her when to push. From the time Alicia and I got into the O/R to the time when baby Whitney entered this world was a record 15 minutes. The first 5 minutes were spent waiting for the right doctors to get there. The other 10 minutes were pushing. When baby Whitney came out, she was just beautiful! She had lots and lots of dark brown hair on her head and she came out pink. I was able to cut the umbilical cord and then they immediately put a breathing tube down her mouth and put her in a mobile incubator. They moved the incubator right next to Alicia where she was able to touch Whitney for a second or two before they rushed Whitney to the NYICU (Nursery Intensive Care Unit). They allowed me to follow them all the way to her station in the NYICU, but I shortly thereafter had to leave to let them do their thing to connect Whitney to all the monitoring devices.
-
Sadly due to the sudden rush of events, I forgot to snatch up my camera before being whisked away to the O/R, so I was only able to take a couple cell phone pictures. When Whitney got all cleaned up I came back and took lots of good photos.
-
That evening all the family was there and despite how tired and exhausted both Alicia and I were, everyone wanted to see the baby. The NYICU is very small and they have lots of babies in there. Due to the crammed space in the NYICU, they have a rule that you can only have 2 visitors with the baby at a time, and one of those visitors must either be the mom or the dad. So essentially we had 6 family members just dying to see the baby and we’d have to go back one at a time. I just wanted so badly to send everyone home and tell them to come back the next day because we were so exhausted, but at the same time we didn’t know how critical Whitney’s condition was or if she’d survive the night. We wanted everyone to see Whitney while she was still with us, so we took everyone back one at a time.
-
That night they moved Alicia from the birthing room to an Antenatal room, and I was no longer allowed to sleep in the same room because this Antenatal room is a shared room with another recovering mother. I had to leave the hospital. Thankfully we have a couple incredible friends who live just a couple miles from the hospital and they were so kind enough to let us know ahead of time that if we needed, we could stay in their guest bedroom in order to be close to the hospital. So I stayed with them for the night. I can never thank them enough for this selfless service.
-
I got back at the hospital the next day, Wednesday July 22, 2010, and as I walked toward Alicia’s room, Dr H came out with paperwork that Alicia had signed giving consent to put Whitney on ECMO. It turned out that through the night, Whitney’s lungs were not absorbing enough oxygen into the blood even with the oscillator breathing in 100% oxygen. Whitney’s oxygen levels were dipping far below the minimum target level and we had to make the decision about doing ECMO much sooner than we thought.
-
ECMO had been explained to us by 4 different doctors since we learned that Whitney had CDH. Only one of them seemed to have any faith that ECMO might help Whitney, and the rest pretty much felt that we ought to let Whitney go peacefully rather than subject her to this highly risky and invasive procedure which probably wouldn’t work anyway. After much thought, prayer, and deliberation, we decided that if Heavenly Father needed Whitney back in heaven then there is nothing that we would be able to do to prevent that from happening. If ECMO works in saving her life, then we will accept the miracle of healing. If it doesn’t work, then we will grieve and (eventually) accept that it’s the Lord’s will that she not be with us in this life.
-
Whitney Kaholumehekainani Montgomery is critical but stable.

Thursday, July 22, 2010

I know what everyone is thinking...

We were just moved from one part of the hospital that had no internet to a room that has excellent internet. So we'll be able to give everyone a big update pretty soon.

Sunday, July 18, 2010

Grandma P.'s Perspective

Hi everyone. This is Whitney's grandma, Brenda Patterson. With permission from Alicia and Thomas I am adding a few of my thoughts and feelings to their blog.

On Monday Alicia will go to the hospital to give birth to baby Whitney. She has nourished, loved, and felt, this baby for 40 weeks now, the time has come, she can no longer stay inside of her where she is safe and healthy. The time has come for us to let go…..to put her into the hands of doctors and nurses… and always in the hands of our Heavenly Father.




My first baby girl is now having her first baby girl. We are strongly connected, the three of us. My emotions are so close I feel like I am living the birth of Alicia once again, so much anticipation, joy, and excitement, knowing I will soon have a sweet baby girl. I love this baby as if she was my own, she is my own, my own grandbaby… The honor of giving life… I would do it all over again in a heartbeat - a heartbeat - Whitney’s heart is so strong, so perfect, I pray it will not be stilled. I pray to one day be able to hold her, to let her know how much I love her, that we may keep this gift on earth for as long as possible. It's all wait and see... which I think, is the hardest part. What a blessing to know that Families are Forever.

“All things are possible to him that believeth. Therefore, I will… doubt not, fear not”

Dear Heavenly Father, we let go of her now and place her existence into thy hands. Please take care of her - whatever thy will may be, we do have faith and trust in thee, we love her, our baby Whitney. I feel comfort and peace in knowing the love you have for this baby, her parents, and for all of us who care about her. Please watch over her and give her comfort through all she must endure.

"We are faced every day with situations that require courage and strength. If you turn to Heavenly Father, He will not fail you! He will bless you with the strength and the courage you will need to complete your journey back to Him." ~Ann M. Dibb

I love you baby Whitney, be strong, be brave, you may have challenges ahead, we are always here to help you. I know God has a plan for you and that you are an incredible special spirit.

“Don’t you quit. You keep trying. There is help and happiness ahead. Some blessings come soon, some come late, and some don’t come until heaven. But for those who embrace the gospel of Jesus Christ, they come. It will be all right in the end. Trust God and believe in good things to come.”

~ Jeffery R. Holland


We sincerely appreciate all the support and prayers for this new little life. We feel strenghtened through the love and concern of our family and friends.


Saturday, July 17, 2010

Not Yet!

No, she's not here yet. But I just wanted to write, even though I should go to sleep being 4 in the morning. I woke up today at 4PM. I think she'll come soon (obviously) because I'm 'nesting' and now I feel her on my hips! I hope she come naturally this weekend. If not they will probably induce me on Monday the 19th. So mark your calendars Family! And get ready for THE phone call.

We haven't picked a middle name yet but we did get some suggestions from Thomas's Dad that we might go with or it inspired us to make one up.

Just to make sure everyone is one the same page here. Our daughter, first child, Whitney, has severe Right-sided Congenital Diaphragmatic Hernia. Basically where her (every case is different) intestines & liver are in her chest instead of her stomach area, compressing her lungs due to a hole in her diaphragm. She will need surgery, after she is stable, to push the intestines back down, and her liver, which is very difficult because there's not much space and that's where it grew. She will need to be on some kind of life supporting Oxygen for a long time because HER lungs cannot support her in this world.

Apparently CDH is one of the most common birth defects in the United States. When bringing home a baby with CDH, they have many special needs. They could require oxygen at home, requires tube feeding, and need lots of different medications, physical and/or occupational therapy. Hearing Loss is very common, also breathing issues, feeding problems, delayed growth, and low muscle tone. This is all stuff that I have read on various websites, and not really told by my DR. Most of these are not permanate and they grow! I am very determined to bring home my baby.

I am so grateful for all the support we've gotten, even from people I've never meet! It helps a lot, seeing others (very unfortunately) go through this. I've even gotten flowers from a good friend far away!

Tuesday, July 13, 2010

Week 39

Hopefully next time I write here my baby girl will be born! You may have noticed I deleted her middle name on the title of my blog. Thomas & I decided that that name (Ka'imilani) was not appropriate in her situation (meaning one seeking heaven). It was suppose to be more a spiritual meaning, not realistic. We want her to seek to stay on Earth! So Thomas's Dad is going to pick out a name for her! A strong family name. I don't care how long or short it is. It's a Hawaiian tradition anyway.

I just spent the last 2 hours reading other Blogs about CDH Babies. Some angels, some survivors. People had so much hope that their baby would make it. Some babies fought for only hours, some for months, but they all earned their wings. I had so much hope. Then I lost it for a while. I tried to get down on my knees again but it felt pointless, I just couldn't. Then realized that I was being selfish for not praying for my baby/family. Satan knows my weakness which has always been prayer. It's not Not remembering to pray but believing in prayer and having faith that Heavenly Father is listening. I will pray for my Whitney. She will make it.

Today Thomas & I went in for my Dr. appt. They did the BPP ultrasound. She had to buzz Whitney this time to get her to wake up a little. DR. G. did and exam and this time he did strip the membranes! It was MORE painful than last week. He said that last week he "didn't do a good job" because I didn't bleed. This time I did. That will hopefully get things moving. I haven't even experienced any Braxton-Hicks contractions yet. I'm only 1cm dilated. So if she doesn't come on her own sometime this week then they will induce me on the 19th (40 wk. & one day). I hope she doesn't come on my sister Jessica's birthday!

Nurse R. assured us that everyone, all the DR.'s, General OBs, Perinatologist, Neonatologist, & midwife's know about our baby's CDH because they all work for St. Joe's. The only people who don't know is the nurses because there are 150 of them. But when they see my chart/history, they will know what's going on and how to take care of it. And of course I will make sure everyone knows that my baby needs help.

Please continue to pray for my baby.

Wednesday, July 7, 2010

DR. Visit

WEEK 38

Not much new to say, maybe just because I'm really tired & bored. Yesterday, Tuesday, July 6th, at the DR. appt. they did the BPP. They took some 4D pictures of Whitney. Adorable. They measured her. She weighs about 6lbs 8oz. Wahoo! There is plenty of fluid, just a little on the excessive side. 27. My mom came with this time. Thomas didn't get the afternoon off plus he started the Summer 2 class at ASU West that night. DR. G. did an exam and said I'm 1/2 cm dialated so she won't come too soon. He doesn't want to induce unless my cervix is ready (3cm). I think maybe he did strip my membranes. But so far not much cramping or bleeding. I wish she would come soon! I'm excited and terrifed all rolled in to one (as my friend put it). I'm getting use to the idea that she will be in the NICU for a long time and have a huge surgery. But I would absolutley die (on the inside) if she did.

Thursday, July 1, 2010

RESULTS

WEEK 37

I was hanging out with some friends today that I haven't seen in a while, Amanda & Whitney (the Whitney :). We had lots of fun swimming and talking. They reminded to write in my blog :)

Sorry to keep you all waiting but we just learned on Monday, June 28th, that the RESULTS for the Amnio test were all NORMAL! Yay! I knew my baby didn't have Trisomy 13 or Trisomy 18 or Trisomy 21. When I went in last week thursday for the NST they said they didn't have the results yet that it's taking longer for them to 'grow' the chromosomes. So I worried about it all weekend. Some people thought this meant that Baby Whitney is okay now...NO, she still has severe Right-sided CDH. She just doesn't have an abnormality. She is very active and I know she will be a fighter.

After the nice nurse told us the good news, she told us I have the Group B Strep (GBS). Great. She said it's very light, but they have to give me antibiotics DURING labor so that the baby doesn't contract it and get sick. So it's not really a big deal and I heard that it's pretty common. I STILL have a bruise from when they drew my blood almost 2 weeks ago. Apparently that lady did a terrible job! My photographer for my modest maternity photos was like... I'll just photo shop that out.

The NST today went well. Baby Whitney is not is stress. We made appointments for the next two weeks but I am (or she is) full term. Hopefully I won't have too crazy of a birth story. Thomas and I went to the Park Central Deli...best sandwiches and they have the most delicious Chocolate cookie ever! I have a pretty busy weekend ahead of me...Patterson Family BBQ, Friends BBQ, and Holmgren Family BBQ. I love it! I love Independance Day, it has always been my favorite...Summer, Swimming, BBQ's, Family, and Fireworks! Also I love the Arizona Monsoon! It's my favorite season of the year! The dust, clouds, wind, rain, lighting and thunder. I hope it's big this year!