Mealtime Progress

One of Brianna's challenges has been feeding. She has struggled to gain weight since she was three months old. I found out when she was six months old that she had a weak suck, which was making it difficult for her to draw milk from me. On top of that, she has a severe gag reflex that prevented me from supplementing her with pumped milk or introducing solids to beef up her caloric intake.

So we seem to have been successful in getting her to be able to nurse better. I believe part of the problem is her sensory issues. She is very sensitive to her environment, and I believe that the energy level at my sister was so high that she couldn't relax, and she was also feeding off of my stress. Since we've moved into our condo, she really seems to be thriving. Between increasing my supply and the relaxing environment, her weight gain seems to be picking up. She really seems to have made some big leaps in her development since we arrived here as well.

We've also embarked on the world of solids. She still can't work food to the back of her mouth, but she's started accepting a spoon in her mouth for a brief period of time, and so far has tasted rice cereal mixed with expressed breast milk and mashed avacado. I wish she had the motor skills to pick up food because I think she would figure it out much better if she could self feed. But she's not gagging as much unless I miss her STOP cues (watery eyes and drool) that indicate a spew is on the way. Today I used the babyfood book my mom got me for Christmas and made some pureed roasted sweet potato. I tasted it and it was yummy! Which meets an important rule I've made - not to make my children eat something I wouldn't eat myself (I made an exception for the rice cereal...) My next endeavor is pureed sweet peas. And while I hate peas, my husband loves them, so I figure that's okay under the rule.

Here's a picture of Brianna sitting in her high chair getting used to her spoon.

Garin wanted in on the picture action too - he's eating his oatmeal (I mix in natual peanut butter and wolfberries YUM!)

I also made the orange puree that the sneaky chef uses. It's a good way to get some added veggies into our meals. It's made of sweet potatoes and carrots. I like to mix it with pasta sauce. It's great with a ton of things though. Mac & cheese, cheese sandwiches, etc. There's also a green puree (spinach, broccoli and peas), a purple puree (spinach and blueberries), a white puree (zucchini and cauliflower) and white bean purees. It's an easy way to get all those extra vitamins and antioxidents and such.

I also wanted to throw in some pics of us breastfeeding, since this will be the most important and her primary source of nourisment for probably at least the next year.

Videos!!!

Here are some videos I took the other day!

Brianna Squealing in delight at her brother

Garin Showing Daddy how much he loves him!

Conversations with a 2-year-old

Brianna is rolling over – and not happy about it!

Garin is trying to figure out what everyone’s name is – and no, Brianna’s name is not “CRY?!”

Garin is sitting on his sister!!! But she thinks it’s funny

The babies are being NOISY!

Garin is stuck!

Another video of silly Garin

Garin trying to “help” Brianna roll over

Just playing with Brianna

Easter Pictures

We had a pretty uneventful Easter Day with just the three of us. I knew if we were going to be able to go to mass, it would have to be the 7am mass. So as soon as Garin woke up I got us ready and out the door. We were only 15 minutes late, mostly because I missed the exit AGAIN and added 10 minutes onto the commute time. The service was PACKED but some kind soul gave up their seats. The kids did pretty well - I never know when I go to mass how I'll be able to handle it if I have Garin trying to run off while Brie is nursing, and there's no nursery. But it went smoothly.


We came back, had some brunch and the kids went down for their naps. I took that time to make Easter dinner. Of course I was the only one who ate any, but it was yummy and I have lots of leftovers to make meals! I made an 8 pound ham, roasted some acorn squash and asparagus and made some steamed baby carrots with a brown sugar glaze. Yummy!


Here are some pics of the kids in their Easter attire. It wasn't fun trying to get crazy Garin to settle down!




No! I don't want to take a picture!! (Brianna kept reaching for him and he was trying to get away, and then she'd cry because he pulled away from her...so sad) =)



Feeling a bit crowded?


Aww, look how sweet we are!


Mommy! Look what I found in the closet!

Mmmm, Easter candy

Brother and Sister

I am constantly amazed by how Garin acts towards his sister, and her response to him. He is incredibly gentle with her. I've tried to instill in him from day one, the importance of being a big brother, and that he needs to cherish his sister and take care of her. I know I'm instilling in him the lessons of how he is to treat women.

It fills me with love and humility when I see how he treats her. When she cries, he gets upset, and says "cry?!" in a really sad voice and points at Brianna. Sometimes he goes and tries to pick her up! When she's doing tummy time, he lays down beside her and talks to her. She thinks Garin is the funniest person alive. She breaks out in a big grin whenever she sees him and laughs at whatever he does. When I'm holding them both, she loves to reach out and grab him, which he thinks is funny, and they both end up breaking out in giggles. He has such a big heart, and she ADORES her big brother.

So today I just wanted to share some pictures of my babies together.

Garin and Brianna the day after she was born:

Garin and Brianna...November 6th
Garin and Brianna...November 13th

Garin and Brianna (December 5th)
Garin and Brianna...December 5th

Don't mess with my sister... December 6th

Me and my sis... December 8th
What IS that face she's making? December 13th

Bathtime fun! January 27th

Helping sister with tummy time...January 5th

Upset because Brianna's in "his" bumbo seat...Jan 7th

Giving Brianna a hug after mommy explains that he needs to share

"Reading" a story to Brianna...Jan 23rd

Giving Brie a hug...March 3rd

Hanging out with sister in our new place...March 31st

Brianna has to make sure she has a hold on mommy AND Garin...April 6th

Making Brianna laugh...

Giving Sister a kiss...

Hanging out... April 9th

Brie laughing at Garin...yesterday

Phew, so NOW where are we?

Okay, needless to say, a lot is going on.

I'm ECSTATIC about being in our own place. It's a furnished apartment, so it's not REALLY my own stuff, so I'm not feeling totally settled. Still, it's nice that Garin has his own room to sleep in. Not a storage closet. And I know Heather is jubilent to have her space back. And man, I couldn't believe how much stuff I had there! Good thing my current place has a garage to keep it in until I can figure out what to do with everything!

The kids are really settling in. Garin loves sleeping in a real bed, not in a crib. The transition went really well. He goes into his bed and lays down and goes to sleep without a hitch. Occasionally I have to go in to tell him to lay down and stop looking out the window, and then he's usually asleep within minutes.

I think it's doing Brianna a lot of good as well. I can really focus on nursing her and helping her get more to eat. And spend time with her and her motor skills. She rolled over for the first time a few days after we moved in. I was so happy! She can't roll from tummy to back yet, but she's managed a way to get from her back to her tummy. Her body kind of stiffens up and she jerks her head around until she gets there, and then works her arm out from under her (it took her about 3-4 days to figure out how to get her arm un-stuck). For a few minutes she can actually look around, push up on her chest as well. She gets frustrated, though, because she can't get anywhere, and can't even roll back over onto her back. And her neck gets tired and she eventually plops back down (after about 5 minutes at the most) and she kind of lays there and cries. But it's a huge progress from where she was.

She lasts a bit longer with the exersaucer. It seems she has less trouble holding herself up when she's being held upright. She actually seems to enjoy herself there.

So we're still in the midst of the diagnostic process for Brie. She met with her new peditrician, Dr. Nguyen last week (or was it the week before?), and he seemed pretty competent and knowledable. And YOUNG. It's weird seeing doctors younger than me. But I guess I am getting older. =) Dr. Nguyen gave us all the refferals we needed. He dod a thorough examination of her. He noted that when standing she has an unusual stance and her legs seemed to be hypertonic (stiff).

I cued in on this right away. These are key words that you find in the symptoms of cerebral palsy. She has her MRI on the 20th. We'll meet back up with Dr. Scurry on the 25th to get the results. I'm about equally terrified and at peace, probably with a good dose of numb thrown in. I don't think anything will really sink in until we get a diagnosis, and there's a decent chance we might never have a cause, just a list of symptoms to address. That's the way it is with theses things sometimes, I guess.

I have a feeling that she has CP. Sometimes it doesn't seem possible. But sometimes it seems glaringly obvious. It just depends on hoe she's doing. But it doesn't really matter because I know who she is. A sweet, sensitive, baby girl who lights up the room with her smile. And it doesn't matter what the diagnosis is - THAT will never change.

More Appointments for Brianna

The last few weeks have been a struggle. Brianna has had a whirlwind of appointments, between all of her helmet fittings, her appointments with the developmental pediatrician and her regular appointments. Some days I feel like I live at Tripler (the hospital). Last week alone I had to take 4 trips over there - 2 of which I arrived just to be sent home because her helmet wasn't finished. I don't think a week has gone by that I haven't been up there at least once. This week I will be over there at least 3 days. On the positive note, she's had all these helmet appointments because she grew out of her first helmet extremely quickly (less than 10 days after getting it right) - her head had already rounded out enough to fill the sides - which is a good thing.

Her 1st developmental appointment was difficult. It was no surprise that she was way behind on her motor development. The doctor was very concerned about her lack of weight gain and her extremely weak muscle tone (hypotonia) and wanted to talk to the pediatric neurologist about getting an MRI to determine if she had a neuromuscular disorder or cerebral palsy. He was also surprised that she hadn't had a nutritional assessment done, and encouraged me to discuss this with her pediatrician at her well-baby check-up. He found it surprising that more hadn't been done earlier to help with her weight gain and motor delays. He gave me an extensive questionnaire to take home and fill out to determine her exact abilities, and tomorrow we go in to do a full work-up to fully determine where she is developmentally. It was the first time that I really realized that she has some problems that won't be easily fixed.

Her well-baby appointment with the pediatrician at Schofield was extremely frustrating. As expected, he started with the lack of weight gain - she's officially classified as failure to thrive, it's so bad. He showed me the charts, and you could she was falling further and further off the charts (she is now well below the 3% line for weight). I expressed my concerns that supplementation wouldn't address the underlying cause of her FTT. He asked if she'd ever had a bottle. I said no, she wouldn't take one, and had severe gag reflex. I told him I wasn't sure my milk supply was a problem because she had more than adequate diaper output. He asked how much I got when/if I pumped, I said I rarely pumped, and that doesn't tell you anything about what the baby was getting anyways. He looked at me like I was crazy (I know, doctors hate having someone imply that they're wrong). I wondered about the possibility of a metabolic disorder, he said unlikely, maybe thyroid. But he believed she just simply wasn't getting enough calories, and that's why she was so weak. He said it wouldn't help to try to supplement with formula, since she'd never taken a bottle, and she was obviously not ready for a sippy cup. Then he brought up solids. He said that she really wasn't showing the ready cues for solids, because she really wasn't holding her head steady (not to mention the obvious gag reflex problem). But we shouldn't hold off any longer because delaying solid food past 6 months can cause food allergies (apparently, for thousands of years before the advent of baby food mankind must have suffered horribly from food allergies since they probably waited past 6 months). He didn't sound confident that we'd have much success with the solids, but gave me no suggestions for helping her gain weight. Apparently I'm supposed to just stuff baby food down her throat and wait to see if she wastes away or magically starts eating enough to gain weight. When I brought up the nutritional assessment, he brushed it off saying that they just check to see what the intake is, which wouldn't help with Brianna since she only nurses.

So Heather decided to take the bull by the horns and get me started doing what we can do to get more in her. I'm taking some supplements that she gave me (Fenugreek) and pumping as often as I can to up my supply We tried to give her some breastmilk by bottle a couple times (an experiment that ended with more coming out than went in, which defeats the purpose so bottles are out for now). We got a baby scale to weigh her before and after nursing to see what her intake is. We've determined that she's NOT getting enough from me - we suspect that her poor muscle tone is to blame - she just doesn't have the strength to get out the milk that she needs - as a result, my supply dwindles to her "demand".

I went on Monday to sign the lease for our condo. It's beautiful. Only a half mile to the beach, the 2 bedroom condo is very nice sized and comes equipped with everything we need, including a garage to store all of my extra stuff in. We're planning on staying there until after Brant gets back (sometime in June, most likely) until we figure out our permanent housing situation. I called the early intervention people and set up a referral with them. They will be coming over on Monday to our place to evaluate her and get her started on her Physical Therapy (PT) and Occupational Therapy (OT). The OT will hopefully help address her gag reflex issues.

Then Heather and I headed to her developmental pediatrician appointment. Watching Brianna through his eyes was heartbreaking. As I saw him take her through the tests to see where she was, I was faced with the reality of how many problems she has, and on the long road ahead of us. She's almost incapable of raising her head when she's on her stomach. She makes no attempts at rolling, even when given assistance. Her muscle tone is incredibly weak. When supported on my lap (I have to support her back, she's not even close to sitting alone), she does reach for the toys he placed in front, but it's very clumsy and not deliberate. She can kind of grab the toys, but not very well. When noises are made to the sides of her head, she doesn't react (doesn't look in the direction of the noise). It was breaking my heart to see just how little she is able to do.

At the end he told us he was going to get all the information together and do the analysis, which he will go over with us on Friday. It is likely that she'll be referred to the pediatric neurologist (to evaluate her to see if there's a neuromuscular disorder or CP), the audiologist (to evaluate for a hearing problem) and the pediatric ophthalmologist (to evaluate her for vision problems).

Upon leaving the developmental pediatrician we went to her plastic surgeon, Dr. Helling, to get her helmet checked on. She's doing good with that (her head keeps getting rounder and rounder, YAY!), but he prescribed an antibiotic to help with a spot on her incision that keeps acting up, where one of the dissolving stitches is trying to work it's way out. Next problem - how on earth are we going to get an oral antibiotic in her when she gags and spits up anything that's put in her? So Heather told me we were going to visit the Lactation consultant. Thank goodness she did.

We went down there (they're located in the Pediatrics clinic at Tripler), they were able to get us in. We sat down with the LC to explain our dilemma, and how no one seems to be able to answer the question - how to get more calories in Brianna? She watched me nurse her and said that she doesn't have a problem with her latch - the problem is that she's just not sucking enough to get an adequate amount of milk out. She says that is very common in infants with neuromuscular problems and other conditions (such as CP, Down's Syndrome etc), because their poor muscle tone keeps them from being able to suck enough - whether it be from a breast or bottle. We told her about her severe gag reflex and not being able to bottle feed her as well. She then went to evaluate her gag reflex, sure enough, she barely stuck her finger in Brianna's mouth and she gagged and threw up a very large amount. The LC said that Brianna had the worst gag reflex that she had seen in a long time. We tried the supplemental nursing system (SNS) - but it will probably not be enough because her poor suck means that a lot of the liquid she intakes comes out the other side of her mouth - a problem that in retrospect I realized she had when nursing. The LC told us that she was probably going to need a feeding tube. She is going to talk with the pediatricians at Tripler about Brianna and get with us to figure out what the best course of action will be. Meanwhile I'll be pumping to get extra milk, and nursing Brianna while using the SNS to get extra milk in her. Thankfully Brant's mom came out on Tuesday to take care of Garin while I focus on Brianna until we can figure out what we need to do to get her gaining weight. And helping me keep my sanity.

We are so lucky to have such amazing family, with mom coming out to help during Brianna's surgery, Heather (and Shawn and kids) being here through all this and taking care of Garin and helping me find solutions when the pediatrician wouldn't, and now Brant's mom coming out so I don't buckle with all of this weighing over me and so Garin doesn't have to figure out how to cook his own meals.

On Thursday a physician from the NICU called. The Lactation Consultant had talked to her about Brianna's situation. So I went over everything with her - she was amazing. I felt less emergent about her weight gain issue - it's definately a problem, and she may need a feeding tube, but it's not dire because she is getting some intake and growing, though slowly. She went over the lab results with me that had been taken last week. Some of her levels were low (not surprising if she's not getting enough to eat), and one of her Thyroid tests has to be redone, so those are things that will be followed up on. She recommended seeing a speech pathologist - because they can help with Brianna's gag reflex.

I have an appointment on Monday with her NEW pediatritian, who is located at Tripler. I'm feeling a lot better that she's going to get the help she needs. With the new pediatritian (Dr. Nguyen) I'll discuss her weight gain and get referrals to the speech pathologist, the pediatric opthomologist, and the nutritionist (to figure out what we should do with getting her on solids). She also has a referral in for an MRI, which she should get at the end of April. So hopefully we'll have answers soon.

I'm realizing that it's not going to be a simple solution. That there's no easy answer to why she isn't growing and developing the way she should be. It's hard not to question my decisions, and to not beat myself up for not insisting on getting answers sooner. I was so sure that she was just a little behind, that she would catch up, and meanwhile she was just getting weaker and weaker. It was just so hard to even begin to imagine that there was something wrong with our precious, beautiful baby girl. When the craniosynostosis was diagnosed, it seemed like there was an answer, and that things would begin to look up, even though it didn't really explain all the difficulties she was having. When she continued to decline, I began to realize that we needed to get some more answers.

I'm beginning to realize that the answer may come with a harsh reality, that she may never really "catch up" and she may never really be like other people. And as that reality starts to look me in the face, I'm really having to lean on my faith. I don't know why all this is happening. I don't know what is in God's plan for Brianna. It's hard to understand why he allows all of this to happen to MY baby girl, to my precious little angel. Since my prenatal appointment in August, when they realized she wasn't growing right inside me, it just seems to keep coming and coming. But I know that God is holding her in His hands. And that whatever happens that He is with us. And it's going to be okay. He will take care of us, and Brianna will be okay. She really is a beautiful amazing girl. Her smile just brightens up the room, and no one who sees it can resist smiling back. I know that she's going to grow up and bless us all with her life; I have no doubt about that. I truly believe that God has a special plan for her.

Brianna's Appointments (March 11th post)

So we've proceeded on the next step of the seemingly never-ending quest to answer the question, "What's wrong with Brianna?". Her helmet therapy following her surgery is proceeding very well. It took multiple fittings to finally get the helmet right - it kept needing more and more padding on the front and back. The helmet needs to keep pressure on her forehead and the back of her head to keep it from growing in that direction, and leaving room on the sides for it to expand, so it will round out to the proper shape. Well, she finally got the fit right less than two weeks ago, and already she's filled out the sides of the helmet. Which is good, but she'll be getting another helmet fitted tomorrow. And right after I got it decorated!

Garin checkin out Brie's helmet decore:

Hearts and flowers!

Well, we had the appointment with the developmental pediatritian today, Dr. Scurry. We got referred to them about 6 weeks ago - the same time that she was referred to the neurosurgeon - because we were concerned about her poor muscle tone and her slow weight gain. So Dr. Scurry met with Brianna and I today and evaluated her. Basically, she's classified as "failure to thrive" because her weight gain is so slow. She's well below the third percentile, even for her adjusted age, wich is a little over five months. She weighs 11lbs 6oz. Six weeks ago she was 10lbs 10oz. On top of that, he's quite concerned about her weak muscle tone, or hypotonia. Basically, she's still very floppy. She doesn't have total control of her head/neck movement. She does fine for a few minutes, but she has no stamina and her strength just gives out. She can't roll over either. When put on her tummy, she might try to push up a little, but she can't get her chest lifted, and after a moment she'll just plop her head down.He said he was going to consult with the pediatric neurosugeon. The concern is that she may have cerebral palsy or some other neuromuscular disorder.

It's all a lot to absorb. And with an impending move and not knowing where we're living next just adds to the stress. It's just hard to imagine anything serious being wrong with my perfect little girl. I know whatever the problem turns out to be, she's a special and amazing girl, and God has some special plan for her, so I know it will work out for the best. Please keep our family in your prayers.

Brianna's Surgery (Written Feb 5th)

We left the house on Tuesday at about 525. The drive was a bit nerve-wracking because we hit traffic - we were supposed to check in at six, and the drive normally takes about 20 minutes. Fortunately, we arrived right before 600, and there was plenty of parking right near the entrance. Brianna had last nursed at 145 am. She wasn't supposed to nurse after 2am, and could have water or juice intil 4am, but she doesn't take any artificial nipples because of a strong gag reflex. Not that it mattered, she slept until right before we left. She cried a little as we started driving, but settled quickly. When we got there I put her in the sling and we began the check-in procedure. She did fine for the most part. She would go on crying jags when her hunger/thirst would get to her, but it wasn't nearly as bad as I expected.

At about 645 Brianna and I were escorted back to the operating prep area, mom had to wait in the family waiting room. Brianna had become almost hysterical at this point, but after a few minutes of swaying with her and singing lullabies, she finally passed out (I thank the Lord for giving some woman the wonderful idea of making and selling these slings, I couldn't imagine doing that without it.

The parade of the members of the operating team began. First was Tory, the anethesiologist - he was getting married in May, very funny and friendly guy. He explained the process of what was going to happen with the general anethesia, and the risks. He would put her under and then put in two IV lines, and she may have some bruising from that. The risks were very tiny of any complications - in the rare cases of complications it's usually when someone has other risk factors like heart problems. Then the nurses came by to go over some paperwork. They said that they would call me in the waiting room with an update, probably around 9am. Then Dr. Helling, the craniofacial plastic surgeon came to talk to me. He talked about what the procedure would entail. He commisserated about having two daughters who had medical problems, and the irony that one of them would have craniofacial problems, and how he operated on her. He said that when babies wake up out of general anethesia they are often cranky, and can be inconsolable because they don't know what's going on.

Finally, Tory came in to carry Brianna away to surgery. He took her in his arms, she woke up and looked at me, with all the faith and trust that a baby has, and I kissed her and he carried her away.I joined mom in the waiting room to wait. And wait.

At 9:08 the phone rang and I answered. It's one of the nurses, and she says that they've just started on the surgery and she will call back around noon. Again, we wait. At noon, Dr. Helling comes out and tells us she's out of surgery and they're finishing up the casting for the helmet. He takes us up to a conference room up in the pediatric intensive care unit to let us know how things went. He said that they ran into a small complication because the suture wasn't entirely fused - a small section in teh middle was still open. Instead of solid bone that section was fibrous, more time consuming to cut through, so it added quite a bit of tiem to the surgery. Then he told us that when tehy began cutting through the bone, of the bone drills malfunctiond. It was supposed to automatically stop cutting when they were through the bone. They noticed it didn't seem to be functioning quite right, so they stopped, saw it was sitll cutting through the bone, and continued. When they got through the bone, it gave, but didn't stop cutting, so they shut it off quickly and checked again. Apparently it lacerated/scuffed the dura (the outer protective layer that covers the brain -- there are two layers). At this point my heart dropped - I knew that she couldn't be too bad off if they had obviously finished the surgery and cast her head for the helmet. But still, at this point your brain seems to at once stop thinking and race through the worse possible scenerios. But he quickly went on to explain that the neurosurgeon monitored the situation, and concluded that there was no brain fluid leakage and it was safe to continue.

At this point we went to her bed in the PICU. My little girl was lying on her bed, hooked up to Ivs and monitors. There was a nurse holding an oxygen mask over her face and she was crying weakly. My eyes filled with tears and I hurried to my baby and laid my hand on her chest. She calmed down and quickly fell asleep. They removed her mask and checked to see if her pulse-ox was good (it was) finished their checks and left us with Brianna.

I tooke the opportunity to really look at her. It was amazing. She had two relatively small incisions (probably about 1.5 inches) and there was just a steri-strip over each incision. Already she looked different. Before the surgery she looked like someone had taken their hands and put them to the sides of her head and smooshed. It looked uncomfortable. But now, her head looked rounder already and it just liked like something had releaved that pressure – which of course something had! A good bit of the roundness was swelling, but you could already see that the shape of her head had changed.

The pediatrician came in and went over some elements to her care. Her swelling would probably increase over the course of the day and night and then get better, but they would look out to make sure the top of her head wasn’t swelling too much and look taut. Her head would need to be elevated at least 30 degrees until the swelling was gone – at least a week. When I asked when I could nurse her, he said as soon as she was ready – when she next woke up if she was strong enough.We took some pictures and made some calls. I just held my baby’s hand and praised God. He brought together this team who took care of her. His providence ensured we were in the rght place for her condition to be identified and for her to be cared for by excellent doctors. When things seemed to go wrong he guided the surgeon’s hands. As the neurosurgeon said, it was divine intervention that allowed everything to happen so quickly and for the right people to be in place to care for her.

Here are some pictures.

Right after she came out of surgery

Nursing Brianna, about 2 hours after surgery:

A bit woozy still:

About 4-5 hours after surgery, the swelling has begun:

The swelling at it's worst, but she still has a smile!

36 hours after surgery, out of the PICU and into the Pediatric ward, almost back to her usual self:

Heading home, 48 hours after surgery!

It's been so long...so very long

It's been a LONG time since I've posted on my blog! Mostly because life has just been so hectic, and I have Facebook as a crutch - I can easily put up my pictures there, so I tend to be lazy about blogging. Bad Phaedra! Well, I'm going to post up my facebook updates so I have it on my blog. So followers (Carolynn!) beware! There's going to be quite a few posts in a row and then I promise... I PROMISE, I'm going to keep up with this blog!! Especially since I heard about another website where you can turn your blog into a hardback book! Talk about incentive!