t h e m a y f i l e s is foremost a family blog, chronicling everyday life. Life including natural, healthy eating (with recipes thrown in at random), home educating (with ideas popping up sporadically), an attempt to homestead on .2 acres (with very meager yields), raising 3 of 4 children with a rare genetic disorder, and lots of highly personal family triumphs and failures. You may also find an eclectic array of musings on politics, exercise, sewing, emergency preparedness, backyard chickens, and religion. This blog isn't a campaign to glorify anyone or anything. Just simply a record.


Sneaking a Peek

This is the way the children have been enjoying their sister the first few weeks of her life.


I have to say I am quite fed up with Berkeley's doctor. I have tried to reach out to him and be friendly but he seems to be deeply resentful of me and my child. He continues to make vague promises of talking to pulmonologists and making referrals. He told me he thought her congestion was clearing up, when it is completely obvious to every nurse and caretaker she is full of gunk. This was after he didn't pick her up, just listened to her lying there sleeping. Sleeping is never the problem for my kids. Their noses don't run and they don't cough at night.

He keeps pushing Berkeley so hard and her oxygen needs increase and she becomes so exhausted she can hardly open her eyes, let alone get a full feeding. He tells the nurses that we better not be here when he comes back in 3 days. He wants her off oxygen when she gets home. I don't see how that is possible since this morning she de-sated in less than a minute and started to get dusky when they tried her on room air.

I want to get home too!!! I want my baby home! But I also want her home when she isn't going to wither away, or have brain damage from not enough oxygen.

It honestly feels like he is having some sort of power struggle with me. I feel like it is really working against the kind of care that Berkeley is recieving. I will continue to try to be kind and friendly and respectful to him. I also have tried to build his ego, and let him know I am baffled about the eating situation. I need his expertise etc. But I can't tell him I baffled about her secretions.

I called our ENT and set up a consult about Ellery and Berkeley. She is out of town at continuing education classes. But she had just called her nurse, excited. She thought maybe she had run across another possible explanation for my children's symptoms. My call was timely. When she returns we will meet with her. I am anxious to hear her ideas. She is one doctor who is thinking at least about her patients, and trying to figure out things she doesn't understand. I appreciate it so much.

We are starting a 24 demand trial. She doesn't have any minimums, she just can't lose weight. She is 5 lbs 13 oz. If we make it, they will remove her NG tube tomorrow morning and then we will have a 24 request period with no test weights. Finally we will have a rooming in night, on the home oxygen equipment and monitors. If all goes well we could be home Saturday morning, or maybe we could combine the 24 request and rooming in and come home Friday.

I came in this morning and Berkeley's nose was all bloody, the nurse last night seemed to do quite a number on her. We have had some absolutely fabulous nurses in Nursery B, it makes such a difference. But then we have some which unfortunately seem almost incompetent. Of course I am very fussy, it is my baby. I want to be caring for her 24 hours a day!


So Pretty!

The green Hawaiian sundress you see popping up in all the photos recently of Callista has caused quite the stir. When she put it on for the first time this summer (a few days ago) Emmett was enamoured.

"Ohhh Nanni! So pretty! So pretty. Ohhhh!"

Both Callista and I felt our hearts melting. She kept saying thank you Emmy and he just kept smiling and touching her and telling her how pretty he thought she was in her green Hawaiian sundress.

Emmett, bless his little heart is very particular about clothing. In fact, the most fussy of all my children. He searches through his closet for his very favorite outfits, and wishes he could wear his clip on tie everyday of the week, because he is so handsome in it.

Brent thought it would be fun if the children pretended they were monkey's and hung out in the apple tree. Ellery was the only one semi-brave enough to try.

Briar Rose

Too tired even for the bottle now???


I had to relinquish my golden key. Back home.

The Golden Key

Berkeley's Room in Nursery B, The Feeder, Grower Nursery

We are getting closer, I hope. She does seem to be waking up a little more. It is possible she is finally feeling hunger cues. Yesterday my dad suggested a name change "Aurora." She is a princess and a sleeping beauty at that.

In an effort to get her home, we are now supplementing her with a bottle to finish off her feedings, if she will take it. She is still getting breastmilk and they assure me she won't become a bottle addict. I just dread thinking of nursing, pumping, sterilizing, feeding...more than I feel equipped to handle. Hopefully once she is home she won't need the bottle. She just putters out after a few feedings. I will be at the hospital at least the next two nights. Here is a picture of the girls coming to visit us in my room. They bought the little dolls you see with their own money in the gift shop.

They have little rooms for breastfeeding moms, and for "rooming in," (spending the night with your child if they are coming home on oxygen). They gave me the "golden key" three nights ago, and I won't relinquish it.

Yesterday my sister came down with her family to see little Berkeley. After she and I held her for a couple hours, it was time to leave. I walked out, kissed her, and left her. My sister commented on how she couldn't believe I had to just leave her there. Leave my baby in the care of strangers with no one to snuggle with, hold and smell... I began feeling horrid inside. What has become of me, how I just can walk away and it feels normal now. It wasn't a good feeling. I started to break down and think about my first 3 weeks with my other children, how much I am missing, how much she is missing. I am ready for this to be over.


Seems like this will be my home away from home for a couple more nights.

Didn't quite make it. She lost too much weight. We will try it all again. Patience is truly a virtue.


On Track at Last!

Like a little miracle, Berkeley started eating today (her 17th day on this earth).

She has only been eating for about 5 minutes at each feeding, but she has proved to be quite the efficient little machine, getting everything she needs in just a few minutes. What a blessing given her leisurely personality. The doctors put her on the super fast track for home. If she continues as she is, we will be home Monday afternoon! Hooray.


Tonight I twisted kleenex after kleenex into Ellery's ear (while she cried because it hurt), and pulled out thick, bloody, infected fluid, I couldn't help but feel my heart sink. My Ellery is such a trooper. Sometimes I wonder what it would be like to live in her little shoes.

Berkeley will know too well.

I wish it wasn't the path set for her.

I was so disappointed today, we tried a 12 hour on demand feeding today. Berkeley did two feedings in a row and then just tuckered out and wouldn't eat a thing.

I asked the doctors and nurses to stop using the BBG on her. How will I know she can survive at home, if they are using a tool I don't have access to? We will see how she does. Her oxygen needs seemed to be rising through the day, but maybe they will come down again.

The "chart note" doctor was very evasive with me. He can't seem to admit that he didn't understand her completely when he admitted her. He is on again tomorrow. I wish he wasn't. I appreciate the candor of the other neonatologists.

I do feel like we will slip through the cracks again. It doesn't appear they will follow through. I hope I will be proved wrong. I will continue to push for them to make contacts for us.

Berkeley had such a great nurse today. It makes all the difference. She helped me deal with everything so much better, even emotionally. I was very appreciative of her and her care and communication.

It has been fascinating to see the fluctuation in my pain tolerance move in sync with my emotional stability. A weak emotional day like yesterday, left me with more pain in my incision than I have felt in some days. Today, stronger emotionally. Stronger physically. Another testament of the power of the mind/body connection.

This is Berkeley at feeding time.

This is Berkeley at another feeding time.

She is in big trouble with her mom! We want you home peanut!


Not Alone

The neonatologist just called.

He said our family shouldn't have to do this alone. We shouldn't be having to try and diagnose and treat our children without support. We need to find out do they have PCD, and if not, what is it and how do we move forward. He said this isn't their specialty but they will make some calls to help connect us.

No doctor has ever said that to me. I sincerely hope they will follow through. It would be huge burden lifted.

As anticipated, they called, Berkeley failed the in depth hearing assessment. Her ears are full of fluid.

They are concerned she may get pneumonia again. Her oxygen and air flow needs are not improving.

Little Berkeley hang in there sweet pea, we will get you home.


An afternoon in "Heaven" with Papa, Kyle, and lots of matchbox cars and warrior bands (bandaids).

An afternoon "in the Heavens" at the BYU planetarium with Mimi, Christy, Katie and Abby.

We wouldn't be surviving without the support of all our friends and loved ones. A little piece of Heaven.

Berkeley remains stable. Blissfully dreaming away in her own Heaven. We wish she would come back here to earth to hang out with us a bit more, because home can be a Heaven on earth.


It was a day full of little disappointments for me and for little Berkeley. The nurses happened to mention in passing she had failed her hearing screening. Audiology is there now doing a more intensive screening. I should receive a phone call soon. I am not hopeful. It seems like we start the "glue ear" road again. It isn't like we haven't been here before, I just was hoping we wouldn't come back. At least this time I am not panicked about her actually being permanently deaf, which is what we feared with Ellery for almost 2 months.

I have tried to secretly do the clap test around her to see if she startles. She doesn't. But maybe I am wrong. Maybe she just had wax in her ears when they tried before.

I know there are so many more truly awful things in life. At least I am seasoned in dealing with Berkeley's little issues.

We tried to be a bit more aggressive with Berkeley's eating, to see if we could maybe jump start her a bit. I mentioned, maybe she would want to eat 5 minutes every hour or so, and end up with the same cumulative amount of milk. Because she is almost 39 weeks, they gave the go ahead.

This morning at 10:30, she only had a half feeding, but they didn't gavage feed the rest. The idea is that she would be hungry and anxious for her next feeding. I stick around to respond to her hunger cues. At 2:30 she was still completely disinterested in eating and showing no signs of hunger. It was disappointing. The nurse keeps reminding the rough go, she has had the last 14 days, and to be patient.

This learning to eat isn't a problem. It doesn't signal any issues. It is just a waiting game. But it is very unusual given her gestational age.

When will I finally learn this patience lesson? I am feeling impatient about it. I just want my little baby home and healthy.


First "Tubby"

Berkeley had her first "tubby" last night. Let me tell you, it was a true spa experience. These nurses know how to do it! I thought I knew how to bathe a newborn, but I had no idea.

We start by wrapping up in a blanket, and immersing in warm water. This eliminates the flailing arms, and exposed limbs. Each little arm or leg is taken from under the blanket, separately and washed, rinsed with pouring of warm water, and replaced.

She was then wrapped in another warm blanket, outside of the tub, as we washed her hair. Her head received yet another warm blanket, and we were finished. That is about a full load of wash per bath, but Berkeley appeared to be in heaven throughout.

Berkeley also received a special visit from Mimi, who is in town for the remainder of the week. Without her two Grandma's we would be lost.

Two big milestones today: back to birth weight and a full feeding.



Could someone please help me get these tubes out? Enough is enough!



I was reading a message board from parents with children diagnosed with PCD. They sound far sicker than my children. In the hospital constantly. Forever on antibiotics. Maybe I am wrong. Maybe something else is going on. Maybe I should just forget about it and live my life and just let my kids "cough it up" and "blow it out."

Maybe I am just neurotic like all the doctors thought.

Maybe it is just a daily nuisance which will cause no problems during my children's lives.

It seems also, maybe only the most severe cases are diagnosed, and those with organ reversal, because it is a reason to look? I don't know.

A Room with a View

Berkeley moved rooms today. (My heart dropped when I walked in and didn't see her. Luckily the nurse found me quickly and sent me in the right direction!) She now has a great view of Provo. We made a decision yesterday to hide these very specific posts on Berkeley's health and our hospital experiences. It was the recommendation of the Geneticist and my mom, and what Brent and I felt best, to keep things a little more private, as far as our children's health is concerned. I also do not want to jeopardize Berkeley's care with any of the emotional things I say on my blog about the hospital personnel.

Because we now, are fairly positive the three children do have PCD, we have to try to understand everything we can. But we also don't want the children stigmatized in anyway. Because the condition is rare, we don't have a lot of answers and it has been quite upsetting to me. And maybe, just maybe we are wrong. The children don't have any other genetic abnormalities which can present themselves with this condition. I just don't have any other possible explanation which comes remotely close...

Last night I had another emotional breakdown. In my mom's words, "I was climbing the inference ladder." The doctor and the literature she gave us, seemed to be saying, children thrive after the newborn period and through childhood. When adulthood hits, things begin to go downhill with recurrent pneumonia which can cause permanent lung damage. I was panicking, because I always thought my children were mild, and this information made it appear to me, they were following the classic progression of the disease. So I was falling apart in the wee hours of the morning, Brent was fervently searching for information to get us in contact with someone who actually understands this condition.

There is always a chance we are wrong about this. But it doesn't seem likely.

Brent spoke on the telephone with the founder of the National PCD foundation. She was very helpful and had some interesting things to say. Her daughter is 26 years old with PCD. They have spent quite a bit of time in hospitals for treatments similar to cystic fibrosis. But in her own daughters opinion the most effective therapy is her running. She is an avid runner. She sent us a bunch of information and put us in contact with some specialists. It is comforting to be in contact with someone who is familiar with PCD. Information was what I was crying for last night. What I have been crying for, for 7 years. I couldn't handle one more (extremely well intentioned) person telling me everything was going to be "okay" and that they will be "fine." How do I know that unless I have information? I need to have the details in front of me. Information so I can understand the best way to care for my precious children. That's why I was falling apart last night. But today, I think we are getting there.

I think our family is quite uniquely equipped to handle a genetic condition most easily cured by running or other vigorous exercise. A disease so critical to keeping your body in the best condition possible. The Lord truly guides our steps and prepares us uniquely for the challenges he know we may face in this life. I don't want my children to be spending a bunch of time in the hospital with physiotherapy, when exercise is just as effective. The mental damage a hospital could cause is significant in my opinion.

I have decided to finish Emmett't immunizations for any lung or respiratory disease. Berkeley will also have all the immunizations against these same diseases. I now am convinced the benefits for my children are crucial and outweigh the risks.

So how is the little Berkeley doing? Her cough continues to strengthen and become more productive. Yesterday they had to suction her 3 times. Today only once. Her oxygen and flow rate have remained the same. Unfortunately she did not eat well today. In the picture above, I was doing everything I could to make her somewhat coherent of what was going on around her :) She did pretty good at our 10:30 attempt (about 25 ml) but completely slept through 4:30. I will go back and see if she is awake tonight at 10:30.

She is quite the heavy weight in the NICU. Most of the babies are far under 5 lbs. She is still not back up to birth weight, but grew 2 inches in length. The doctors increased her feedings to 50 ml each time to try and increase her weight and build her strength and stamina.

It can be discouraging. Everyday I seem to think, oh one week from now we should be home. Then the next day comes and I think the same thing. And then the next day. No matter what day it is it seems to be one week out.

Berkeley is 38 1/2 weeks now. She will be 12 days old tomorrow morning at 7:03 am. When Dr. Johnson came to me at about 10:30 that morning and told me she was on CPAP, they were giving her surfactant for her lungs, she looked to be only 34 weeks old, and she might be in the hospital several weeks, I didn't really believe him. I thought we would be home in a week or so.

The little knot in my stomach remains. I am hoping this is all worse for little Berkeley because her body is weaker to begin with, and not because the disease is more severe. If it is, we will deal with it.

Berkeley is a dozing diva for certain. She is doing great.

We have removed the previous posts for our children's privacy. Thanks for understanding. We don't mind a telephone call if you would like the nitty-gritty details ;)


Berkeleys Bedroom

Lots of good news. Berkeley finally had a great feeding. She drank 35 ml this morning. (They weigh her before and after the feeding.) Last night was 5 ml and this afternoon 12 ml. She should be getting 50 ml at each feeding. After she does that twice a day, we get to move up to trying feeding 4 times a day. In the picture below, of her little "bedroom" you can see the syringe sitting on her bed, full of my breast milk. It is pumped into her through her NG tube.

She is hidden under all those blankets in there. They keep them quite snuggled in. With all the frequent suctioning she seems to be doing much better. Today they decreased her flow down to .5 liter again and her oxygen demands remained stable between 24 and 30%. This was all great news. She still retracts on and off, but the suctioning seems to ease her effort of breathing.

It seems all the nurses, doctors, respiratory therapists and occupational therapists and quite intrigued by her, and PCD. The occupational therapist last night confided with me, how she wished doctors would listen more to parents. She said I was teaching all these doctors and nurses a thing or two. She felt they would be able to identify other children suffering from the same condition in the future.

Suspicious Chart Note

My nurse then admitted, the neonatologist who had Berkeley transferred to UVRMC, put a note on her chart to "Ignore the parents. They are self diagnosing." This was also the same doctor who assured me she had pneumonia and her secretions would be gone by now. (I understand we had to treat for pneumonia no matter what. If we didn't and were wrong it could have been disasterous. I was just concerned they were missing the underlying problem.)

The neonatologist who is a geneticist is certain PCD is the proper diagnosis. Now there is a thick packet sitting in Berkeley's bedroom for all to read up on, and every time the doctors or practioners call to update me, they ask if there is anything else I recommend.

I understand there are crazy's out there trying to tell doctors what to do. And admittedly I suffer from that syndrome myself. However, I am also an extremely careful researcher, and I would never try to make my children appear to be sicker than they are. The last thing I want to do is improperly label or treat them.

But when it was clear to me, the path the doctors were using to help Berkeley was ineffective I had to continue to speak out, for the sake of my child. If I am not her advocate who is?

We still have no timeline for when she can come home. But hopefully she continues to progress forward. Her cough is getting so strong and productive. You can hear it echo through the NICU. It is quite impressive. And little Berkeley gets all sorts of cheers when she coughs. They are all so proud. It means she is starting to manually clear all the junk that has been clouding up her lungs.


Berkeley's Personal Protocol

I mentioned yesterday my frustration was mounting with this hospital and NICU. It seemed every time I went to visit my baby she was in some sort of distress the nurses weren't recognizing. Last night, when Brent and I arrived at 10:30 pm, she was de-sating, and respirating quickly. Her oxygen level had been turned very high and the flow was up.

I patiently asked the nurse how she was doing, trying not to do her job for her. Oh she is doing just great, was the reply. I unwrapped her blanket, and lifted up her onesie. She was severely retracting. As patiently as I could, I called her back, and told her maybe I was just an over-reacting parent, but it appeared she was really struggling to breathe. Immediately, people started moving. The respiratory therapist was called, the doctor was called, an x-ray was ordered. She was going downhill fast.

A long story short, the neonatologists are paying very close attention now, and researching like crazy. They now realize little Berkeley is unlike the other preemie babies they see daily. She looks stable, but is actually not. As her secretions build up, her respiratory distress increases. Sometimes it happens very quickly, while she looks very peaceful lying there all wrapped up in her blankets.

After deep endotracheal suctioning, she stopped retracting and her oxygen needs plummeted. The pattern is clear. The problem is the deep suctioning is very invasive and dangerous. It can cause inflammation and make things worse. The doctors are trying to find the right balance now, by using the Baby Booger Getter (BBG) more frequently and nasal saline drops every 6 hours.

They will try to have a primary nurse for Berkeley so the care is as consistent as possible. Last night the neonatologist assured us, they wouldn't send Berkeley home until they were confident she wouldn't end up back in the hospital. They feel strongly all three children should be followed by the pulmonologist at Primary.

Although I have known for some time, my children suffered from PCD, it was difficult to hear the doctor stand there and go through the long term implications.

The Lord gives each of us different lots and lessons in life. I don't know how severe little Berkeley Rose will be. Emmett isn't as effected as Ellery, I know there is a large spectrum in this illness. We are praying, it is simply the lack of strength in her body, and not the severity of the disease complicating things for her. I treasure my children and can guarantee they will have lives full of vigorous exercise and encouragement to "cough it up."

We want them to not just thrive in childhood but thrive into old age. And believe me, Ellery and Emmett are THRIVING. At last, finally someone listened to me. Finally my children will have someone checking in on them, helping us have the peace of mind, we are doing everything we can for them as they grow older. Thank you for your thoughts and prayers. Hopefully little Berkeley can begin to move forward now that she is being properly watched and cared for.


No changes for little Berkeley today.

Antibiotic course is finished, so they did remove her IV. That felt like a good thing, IV's are miserable. I think they moved hers 5 times.

Berkeley when will you be strong enough to breathe and eat on your own?

I have to admit I really miss the small hospital. I hope I can become more accustomed to UVRMC. We may be in for a long haul. I will try to snap a picture tonight when I go back to the hospital.



Berkeley's oxygen and flow needs have increased again. But she isn't on CPAP or high flow.

Still too exhausted to eat.

One more day of antibiotics.

Still has a cough, but doesn't seem to be rattling.

Ellery told me "Mom your parts are huge!"

Brim jumped on my incision.

I went into a store and a gas station for the first time in almost 2 months.

I played barbies with el and pip, we made elaborate kleenex clothing.

I read mother goose to emmy, his favorite book, I think he is having withdrawals from the 10 times a day we did on bedrest.

Emmett has taken to calling me grandma. I am trying not to get emotional about it.

Callista learned to float on her back in swimming lessons, which I got to walk over and see.

I am almost weaned off of motrin now, I am healing so quickly and well.

Emmett can ride the zipline its entire length.

I walked into the NICU today, and at the security rotunda a nurse was on the phone: "Get the parents back quickly to the bedside, their baby is crashing." Immediately I was overcome with emotion. I walked in and it seemed every nurse and doctor were surrounding this little gift from God. The mother was wheeled in, in her gown, pushed by her husband. I can't describe the look. I had to look away. I heard them draw the curtains. A few minutes later my nurse came in. She tried to brush the tears away before I could see them. When I left the baby wasn't there anymore. I don't know what happened. But I am counting my blessings, offering selfish prayers of thanks that the phone call wasn't for me, and you can bet I held Berkeley a little tighter and gave her peaceful little head a whole lot of kisses.

Every time my phone rings my heart skips a few beats.


Berkeley Day 7

Berkeley had a great day yesterday with lots of improvement. Her flow is down to .5 L and the Oxygen level today is down to 26%, with yesterday up and down but mostly at around 50%.

With her flow level down today I was able to try to feed her again. Unfortunately she is interested, but still very weak and tired to suck for more than a few sucks at a time for a couple minutes total. I was so hopeful with a few days off she might be vigorous this time. But these have been a rough few days. This will just take time.

This morning when I got to the hospital she had a little outfit on. It was very fun to see her dressed for the first time.

The antibiotics for pneumonia will continue either to Friday night or Sunday night. Her cough should clear by then, is what the doctors told me. Wouldn't that be a miracle! I am just trying to go with the doctors diagnosis of pneumonia, and ask for answers based on that. When I pressed them about if cough persists after pneumonia has cleared, they said maybe for a couple days.

It is great to be moving forward. We are almost back to Day 2 status :)

Unfortunately the lactation specialist says I should have about twice as much milk as I currently have. So my life will now be even more consumed with pumping. I am producing enough to feed her through the tube, but It was depressing that when I look at the pump my milk lets down. I am trying to pump at Berkeley's bedside as much as possible. Hopefully my body won't continue to become connected to the pump!

Emotionally I am much stronger today. It seems unfair to throw so much emotional stress on a person recovering from major surgery and with completely out of whack hormones. It just makes everything so much more of a roller coaster.

I can't say how wonderful the emotional support has been from my neighbors and friends. The emails, comments, conversations, telephone calls mean the world to me. It is very cathartic for me talk through (or write about) what is going on. I'm sorry I haven't had a chance to call everyone back, but again it means so much to see your names pop up on my phone.

At one particularly difficult moment, I was sobbing and Brent was holding me. I couldn't stand leaving Berkeley in the hospital, alone, with so much noise, equipment and sterility. It was then Brent said, "Rebecca she isn't there at all. She is surrounded by those who love her at every moment. Our Heavenly Father doesn't leave his little ones alone at a time like this. She is on a little vacation, with angels and loved ones passed on to care for her." This has meant the world to me. I know now, Berkeley isn't alone when I leave but is encircled with love and care from those beyond the veil of our knowing.

Berkeley just hours old. I get vicious when they try to keep me in a hospital bed and not see my babies. The nurses always gasp that I can get in the wheelchair after just a few short hours.


Berkeley's Big Ride

Berkeley had her first big ride last night about 9 pm. We didn't have our camera so we couldn't capture the amazing contraption which nested her snugly inside the ambulance. But she did get a souvenir!

Berkeley was transferred to Utah Valley Hospital last night to their Level III NICU. It wasn't because she had digressed, thankfully, only that if she did AF would not be equipped to care for her. Better to transport while stable than in crisis. The neonatologists at UV felt strongly they wanted to be in charge of her care.

I experienced quite a bit of trauma with this change. Thankfully they let me hold her for 1 1/2 while still on her CPAP before she transferred. It was very soothing for both of us. Also, our wonderful nurse Julie, transferred with us, which made the transition much easier. At this hospital the neonatologists are directly watching her 24 hours a day. And the good news, she came off CPAP (Continuous Positive Air Pressure) again. She is once again on a high flow canula. She is also still receiving oxygen.

I can't begin to try to feed her until the reduce the air flow in her lungs. Right now, if she tried to suck, she could aspirate into her lungs. The neonatologist is convinced she has pnuemonia. They are treating her for that. I doubt there has ever been a mother who would be grateful if her child had pneumonia, but I would be. For me it would be a miracle if her cough and secretions disappeared in a week. I am so skeptical though.

My frustrations were high yesterday with all the doctors. I'm afraid I vented a bit. It made me so unsettled as I spoke about Ellery and Emmett and discussed similarities. They felt like a persistent, wet, productive cough could be very dangerous long term. The pulmonologist at Primary Children's who was so unkind and dismissive 2 years ago, suddenly wants to talk to us, and see Berkeley and the children.

My fear with Berkeley is that like Ellery and Emmett, she doesn't have pneumonia. All the bacteria cultures have been negative so far. I think as time passes and her strength increases she will begin to breathe on her own without help. She will learn to eat. And they will send her home with a thick, wet cough and assure me it will clear up in a week. Then it never will.

I thought I had found peace with this. But the passing comments of the doctors have raised all the same fears I have had for the past 7 years. It is a difficult time.

But on a lighter note, look at that beautiful head of hair on my little Berkeley Rose. And she is little. Still losing weight, but that should turn around soon.

We are so grateful for all the prayers and fasting on our little Berkeley's behalf. Thank you. It has been so wonderful to take a step forward instead of back!


An Emotional 18 Hours

Our poor little Berkeley Rose took a few steps backwards. I had been so emotionally strong up until this point. But to see my 4 day old baby back on C-PAP was more than I could handle.

Her retracting became very severe yesterday evening. She was put back on CPAP which inflates her lungs for her. They also reinserted her IV and began antibiotics again and several different lung treatments. The idea is to open the collapsed part of her lung, loosen the secretions and ensure that no infection develops while the fluid sits inside her.

Her lung xray looked better this morning, as did the gasses in her blood. She had a CT scan of which we are still awaiting the results. Last night was long and difficult as the contemplated transferring her to primaries for intubation. We are very grateful she didn't take a turn for the worse.

Today I was released. It was very difficult to leave her in the hospital. But I needed a break from the emotions and it has been wonderful to spend some time with the children. Please keep little Berkeley in your prayers. We know she will pull through this, hopefully we just move forward from this point.


PCD Strikes Again

Here I sit blogging, still in the hospital. Little Berkeley is well but still very weak. As the days have progressed, the fluid has begun to build up in her little body. She doesn't have the strength to move it through her. She is back on oxygen, and the respiratory therapists are helping her manually to clear her fluid. The doctors were worried she had pneumonia, because of the chest rattling and thick wet cough she has developed. I explained to them how Ellery and Emmett both have Primary Ciliary Dyskenesia and their history as babies. I was very impressed at the doctors knowledge of this rare genetic condition, and...he actually believed me. Berkeley's lung xray today showed a partial collapse (just like Ellery) which the doctor said is classic of PCD. (If only I had known what I know now, when El and Em were babes! It releaves so much stress and helps the doctors know best how to treat her.)
No timetable yet. She is off her IV (hooray) and they inserted a NG tube (from nose to stomach) and are feeding her my breastmilk. She is tolerating it really well. Still losing weight but not under 5 lbs so that is a really good thing. The waiting game is mostly when she will decide to suck and eat. The oxygen is no big deal. We can bring her home with that. We've done that before :)
Brent and I both had really hoped little Berkeley would get Callista's genes and be free from this, but we count our blessings as well. Of all the genetic conditions in the world, this one is mild and not life threatening. The most dangerous are these first couple months. But we are confident she will be as strong and healthy as her big sister and brother.
I will be released tomorrow, so will have to start camping out in the parent lounge. Thanks for all the thoughts and prayers. She will be just fine. The PCD won't be a problem and the eating will come with time.


A Little Snapshot of Berkeley

Berkeley Rose
Born June 10th, 2010 at 7:03 am
17.5 inches
5 lbs 8 oz
Here are a couple photos of our new angel...she is improving everyday. Still in the NICU but breathing on her own. She is building strength and hopefully will be interested in eating soon. No long term complications at all.

We are just waiting for her to mature a bit. Her gestational age appears to be a couple weeks behind what the doctors calculated.

We love her, but I miss her like crazy in my room by myself. Rooming alone in the hospital was not something I wanted to ever do again after Ellery. But overall we are all coping well. The kids are safely playing away at Grandma and Grandpas. Hopefully there are no more chicken predators on the look out for another tasty snack :)
More details to come....


Berkeley Rose

Berkeley Rose

June 10th, 2010

17 1/2 inches

5 lbs 8 oz

We will post and let you know when our little Berkeley comes home from the hospital. Thanks for your love and support.

Brent and Rebecca

On our Way

Last profile shot. Ready for baby! Here we go.


Just in Time

Guess what bloomed just in time for little Berkeley Rose's arrival?

I love thinking that every summer my first roses will arrive just as her birthday does. Some people think the rose is a common, cliche flower. I love them. I treasure my 14 rose bushes. They seem to be the only green thing I can get to flourish.

I painstakingly prune them all summer, with scratches galore as proof. But all summer long my house smells of fresh roses. I can't wait to bring a vase full of them to the hospital with me.


A Peek

I had a fabulous doctors appointment today, with a BP of 122/68! Imagine that. Getting a reading at the doctors like I do at home. Who would have thought it possible? My doctor was astounded. We had a good laugh. The delivery is still scheduled for Thursday morning. With the protein still in my urine at above 300, they feel the risks are greater to prolong the pregnancy.

But...more importantly, I asked if I could watch the c-section. He thought that would be perfectly fine. I just need to ask for a mirror! I am giddy at the prospect. This little token, would help me feel a part of the birth. It is so difficult to feel connected when I've never experienced labor, or any part of traditional childbirth.

Brent is completely grossed out by the entire concept.

....6 hours later....

I asked the nurses in Labor and Delivery tonight while I was having my NST about the mirror. They said there is no way they could work it out. That is disappointing. I am still trying to think up something.

(And my BP was ultra low my entire NST today. Seems like I am done panicking about having a premature baby. I wonder if they will allow me to forgo seizure medication? It is definitely worth asking.)

Constitutional Disclaimer

We use Drudge, as one of our main sources for news headlines. This one I came across this afternoon was quite shocking

Amazon is selling copies of the Constitution with a, I feel highly offensive, disclaimer.

Of all the works that may need a disclaimer like this, I just can't believe the Constitution is one of them. All Americans have a duty to understand and study the Constitution. They should be able to understand and discuss it with their children and neighbors. It is neither a racist nor sexist or anything else. I am certainly no Constitutional scholar but I have read it in the last 3 months, and try my best to understand the principles upon which it is based and the intentions of the founders.


Dethronement? Not a Chance.

Of all the worries a new arrival brings, dethronement is not one I am concerned about with Emmett. He is his Father's man.

He also is an attentive caretaker. He snuggles, smooches, and cuddles his little "baby" frequently enough to melt any mother's heart. I am actually glad he is my only little boy. He is irresistible!


Joys of June

Running through sprinklers...

Emmett thinking he is ultra brave by constantly climbing up to the second story of the tree house... There is always a constant "MOM! MOM! MOM!" until I look up and acknowledge his bravery.
Getting down is a whole different story. (Brent and Ellery have recently been concocting a third story. I'm not sure how I feel about that.)

Playing "Bums Up" with Dad on the Deck...

Somehow Daddy seemed to evade the wall, hmmmm...

A new haircut for Ellery...