Cute Pics (2 in Bumbo seat and 1 with Dad)

Friday, June 29, 2007

Our PT let us borrow a Bumbo seat. The seat supports the rest of her body, so she can just concentrate on balancing her head (for Caroline, balancing her head on her own is like trying to balance a bowling ball on a pencil). She has done very well with this seat, and she looks so cute in it.

Love this Picture:

She's Drinking More!

As I mentioned in the Speech Therapy post, Caroline hasn't been drinking a lot on her own lately, on average about 5-10ccs (1-2 tsp.) per feeding (the total she needs to take in is 80 ccs per feeding). It has been especially frustrating because, in the weeks following her arrival home, she was progressing well with her feedings - even getting to an average of 20ccs per feeding and a few times even drinking 35 ccs at once. We thought she'd get to full feeds in no time. Then about a month or so ago, her numbers started to drop off - some days averaged < 5 ccs.

But, good news, in the last few days, she has picked up significantly (strong 10s and 15s each time) and tonight she drank 25 once! Many things could've contributed to this (we went from an Avent bottle to a Dr. Brown bottle, we've been doing the exercises her speech therapist has taught us, Bryce was feeding her [she always seems to drink more when Daddy holds her]). Whatever the reason is, we're excited about the progress.

Here's Bryce checking the amount:

I'm already a Soccer Mom?

Wednesday, June 27, 2007

Well, I basically am, except I'm more like a "Doctor" Mom. We've had 5 appts. in the last three days, with 3 more before the end of the week. Here's my vow though...I won't go Minivan! This could be my very own "Read my lips..." statement, but I'm going to try to stick to it.

Some highlights:

PT - Caroline gets better at tolerating therapy with each appt (not as much crying or tensing up) and the PT noticed improved head control. That's because "we" (i.e. Bryce) worked with her so much over the weekend - he's a dedicated dad!

OT - The OT worked with her a lot on holding her hands to her mouth and body awareness. The OT told me that, when babies are putting their hands to their mouths, that action of course teachs them to self-sooth, but it also strengthens their eyes' ability to focus straight ahead.

Cardiologist - Her ASD (Atrial Septal Defect - hole in heart) has gotten bigger (from 5.6mm to 6.3mm). The doctor didn't actually seem too concerned about that. He was more concerned about the placement of the ASD. At the last appt., he talked about fixing the ASD with a non-invasive catheter surgery. However, after reviewing the EKG, he believes the location and size of the ASD makes fixing it without open-heart surgery much more difficult. He did say that we may be able to delay having the surgery for a very long time, maybe even avoid it completely, if the ASD doesn't seem to contribute to other problems in her body. Hopefully, we'll be able to avoid that one!

Looking Forward to This...

Tuesday, June 26, 2007

I found a new magazine coming out in July called Organize, (the link is here). I love to organize and am always on the lookout for new ideas. This magazine looks similar to Real Simple, except that organizing is its prime focus.

Caro Laughs

Sunday, June 24, 2007

I think I heard Caro laugh for the first time on Friday afternoon. It was the best sound in the world!

I was holding her on my knees in front of me, and she was smiling a lot. I kept talking and smiling back at her, and then I started tickling her underarms. All of the sudden I hear this little "heh, heh, heh, heh" - so I try the tickling again, and she chuckled again! She did it several more times after that.

She hasn't done it since (we've tried but she hasn't been in a good enough mood), but we'll keep you posted.

Second Time at Church

We went to church together today - it was great again. Caroline was good, although a little more fussy this time.

Lots of people came up to her afterwards. We really had to fend them off! Bryce explained to people that, although she's at church we're still not allowed to have her too close to others.

Because the pediatrician stressed last Monday that Caro really cannot be too close to people, especially kids, we decided not to go to Sunday School or third hour because there are babies in the ward that would be in those rooms with us.

Sleep Study

On Friday night, the three of us spent the night at a Sleep Disorder center, where Caroline got a sleep study done. Frankly, it was a very hard thing to do - both physically and emotionally.

The pulmonologist (lung specialist) ordered the sleep study to get more information on Caroline's breathing problems (labeled as "chronic lung disease"). The results from the sleep study are supposed to tell us how her brain is working while breathing, whether or not she desats* at night, whether or not she has "centrals" (apnic** episodes that aren't long enough to set off the monitor we have her on nightly), and other things.

We arrived at the Sleep center around 8pm. The test technician guided us to our room (basically a full-size bed [aaagh!], a sink and some cupboards) - I told Bryce that it was our first camping trip together :).

The tech kept talking about how we'll see from this test if C can come off of oxygen. I knew that she was not at all ready to be taken off of oxygen and that was not the purpose of the test, but it still got my hopes up.

Around 10pm, Caro started to get sleepy, so the tech began to hook her up to tons of monitors: EEG-type nodules on her head, straps around her chest and stomach, a snore microphone taped on her throat, leads on her chest, and CO2 monitor. The tech watched the data from these all night, and she also watched Caro sleep through an infrared camera they had on the crib (the crib by the way was I think from 1965).

The tech took a poloroid of Caro all hooked up - this is a picture of that picture because I am too lazy to scan it in.

When the tech was almost finished strapping on everything, she took Caroline off of oxygen completely, so the first few hours of the test would test her off of oxygen. The tech kept telling us not to worry unless the oxygen saturations went below 90%.

Before the tech could even officially start the test, Caro dropped to 71% saturated (the lowest she got), and the tech had to get her back on oxygen right away (it took Caro about 10 min. to get back up into the high 90s). Thus, no data could be recorded about what she's like off of oxygen. It was scary to see her dip that fast, especially when she had all of those wires sticking off of her.

Of course, Caro was snoozing away - the tech said "oh she must be used stuff like this." Doctors and nurses say that to me all of the time and that makes me so sad because yes, she is used to being poked, prodded, and studied. No baby should be used to that. We just try to have hope that she forgets all of the hard stuff quickly and will still learn to trust the world and us. Anyway, what little hope we had that she would do well off the oxygen quickly left. Her sleep study then started.

After a restless night of sleep for me, and a ok night for Bryce, the tech came in at 6am to wake us up. She told us that she couldn't officially give us results, but, of course, she let a few things slip. She told us that she didn't take C down to room air again, although she did try to lower the amount of oxygen C got but had to raise it back up again after only 15 minutes. She also told us that Caro had several centrals (short apnic episodes).

On top of all of that, the different cords and leads had to be removed, and, unfortunately, taking some of those off really hurt Caro.

It was a rough night - hopefully, the doctor can give us a more accurate prognosis because of it.

*Desats: Short for oxygen desaturations - most of us have an oxygen saturation level of 95-100% - when you "desat," it means your body isn't saturated with the oxygen it needs (lower than 85-90% is the typically considered a desat).

**Apnic: adj for Apnea - a condition where your body forgets to breathe

Speech Therapy and Sign Language

Thursday, June 21, 2007

Here's Caroline in Daddy's arms tired out from a long day - see why below:

Today, Caroline had her first private speech therapy appointment and another physical therapy appointment. They both went very well. Her speech therapist (yes, speech therapist - they handle feeding too), Alice, seemed very nice and knowledgable.

Caroline has needed this therapy for a long time. She only takes about 10ccs (2 tsp.) by mouth per feeding, then the rest of the milk goes into her g-tube. There could be several reasons for this: low muscle tone (she works SO hard to get those 10ccs), weak lungs (drinking too much may get in the way of her breathing), her brain just not allowing her to coordinate eating, or all of the above. We're hoping the speech therapist will teach us techniques to help Caroline eat more by mouth. We pray that someday something in her brain will click and she will be able to eat everything by mouth.

Anyway, she watched as I fed Caroline; then, she took Caroline and fed her too. She observed how C coordinates sucking, swallowing, and breathing (she thought C has some good strengths and habits to work with). She then used different tools to stimulate C's mouth muscles like a little stick with a honeycomb-like textured end and also with a finger glove that vibrates. Caroline seemed very interested in those new things. The ST also taught me some massage I can do around her mouth to strengthen her muscles. It was a good visit, and we will see her one to two times a week.

We then went to see our PT. She worked with Caro for about 45 minutes (C tolerated the therapy very well - they were only expecting her to last for 30 minutes). She did many new exercises with Caro that I learned as the PT did them with her.

She also started doing infant sign language with Caroline. I learned 7 signs I can do with Caro ("more" "all done" "hooray" "yes" "no" "milk" and "I want")! I've always wanted to do that with her but I thought it would be a huge project to get into. It wasn't at all - I was intimidated for no reason!

Here's a quote about Infant Sign Language:

Baby signing is all about communicating with young babies before they develop speech, using sign language similar to that used by people with hearing difficulties. Children develop communication skills long before they can speak, and visual communication allows them to start telling parents what they need, or want. Much of the research has shown that using baby sign language makes for an easier life for parents and babies, because the infant doesn't get so frustrated when trying to get what they need.

Here's a little diagram of some Infant Signs

First Day of Private Therapy

Wednesday, June 20, 2007

Caroline finally had her first day of private physical and occupational therapy. Prior to this, Nevada Early Intervention Services (NEIS) has sent people out to our home once a month or so - not nearly enough therapy to give Caroline the help that she needs.

Our insurance took its time to approve her therapy. It has been unbelievably frustrating - to want to make sure our girl has the best care possible, to know that she needs it, and to know there's only so much you can do about it.

Anyway, Caroline is now getting what she needs. The Occupational Therapist (OT) saw her first. Her name is Kathy, and she was great with Caroline. She brought us back into a smaller room that had cute, baby-sized toys and a clean, raised padded platform for her to work with Caroline on.

She first held and re-positioned Caro a few times just to get a feel for her. As she did this, we discussed Caro's medical history. (PS - so nice to have her start hands-on work immediately - everytime NEIS sends people out to our home, they spend the first 45 minutes of the appt. doing paperwork and asking irrelevant questions - they barely touch Caroline - goes to show that the private sector is always more efficient!)

Then, the OT got a "baseline" picture of her - meaning, she evaluates where Caroline's developemental level is at the beginnning of therapy. She noted Caro's strengths and weaknesses: low muscle tone, ability to keep her head in midline (she can hold her head straight while lying on her back), good feet and toe reflexes, slow tracking with her eyes, beginnings of rolling over, and more. Then, she brought in the Physical Therapist (PT), who also got a baseline picture.

We talked about our goals for Caroline. They were both very positive - I heard several comments like "we'll fix this" "we can help her there a lot" "we will see big changes in her." I am elated that Caroline now has such proactive help. They also gave me homework and tips for us to do with her.

They then discussed how often they could see her. I hoped for them to get her in once a week (it took awhile to get her into this particular therapy center, due to its high demand). They told me that they'd make room in their schedules to have her come in 3x a week to begin with and have her come in 5x a week when more slots open up! I couldn't believe it - finally people that understand Caroline's needs. (Later I realized how much driving, etc. that would be for us - oh well, at least C will benefit.)

Caroline stood up to the whole thing quite impressively. By the end of the PT and OT appts, she was exhausted from her workout (picture how you feel after spending a couple hours in the gym - that's how Caro feels after a few minutes of therapy)! She slept soundly all the way home.

About the pictures - those were taken this morning before the therapy. She is in one of our favorite outfits (isn't the back part of the outfit so cute?!?)

EEG Test

Tuesday, June 19, 2007

Caroline had an EEG done today (for more information about the test click here). The neurologist ordered this test to see if Caroline is prone to seizures.

For three hours prior to the test, she was not allowed to eat or sleep. As soon as I made the appointment, thinking about today filled me with dread. No morning nap time?!? - that should be great fun!

Turns out that little Caro surprised me - besides a little fussing in the car ride to the doctor's, she did just fine. Once we got to the office, she fell asleep right in my arms (partially due to her lack of sleep and partially due to a mild sedative they gave her). After she fell asleep, the EEG technician put little electrodes all over her head and chest - 26 in all. Although the electrodes stayed on well, they weren't sticky enough to hurt Caro when taken off, so no Grandmas need to start worrying about that.

While the tech could not officially interpret the test results for me, she did say that if anything concerning occured during the test, she would get the doctor right then. Well, she never got the doctor. The tech hinted that this result makes it very probable that she does not have seizures (that doesn't mean she's 100% clear - but a very good result all the same). The neurologist will follow-up with us next month.

Since the appointment, she has only been awake for feedings. (Note to self: must get that sedative on hand ASAP - makes getting things done much easier :).

June Peds Appt.

Monday, June 18, 2007

Caroline had her monthly check-up today. The doctor said she's doing very well. She's now 9lbs. 15oz. (granted that's with her clothes and diaper on, but still...) and measures 23" long. No new concerns were brought up by the doctor and she didn't even refer us to any specialists this time!

Father's Day & C's 5 Month B-day

Sunday, June 17, 2007

We decided to make today Caro's first Sunday at church. I can't even express the joy I felt being all together there. It was so exciting - kind of an unusual word to use for Sacrament meeting, but it's true.

After church, as expected, a lot of people came up to us to see Caroline - as you can imagine, we heard "look at all of that gorgeous hair" "she's adorable" "so tiny" and "beautiful" a lot! People knew not to get too touchy or too close - they were very respectful. What a relief! We only took her to Sacrament meeting this time, but, assuming she doesn't get sick from all of these outings, we'll take her to the full three-hour block next time.

See below for pics of today.

Pics from Father's Day and 5 month B-day

Caroline Outing!

Saturday, June 16, 2007

We took Caro to the grocery store together for the first time today. At first she was very calm and liked all of the new lights, sounds and colors. But, then she became the dreaded Fuss Bus, so Bryce had to take her out to the car while I checked out. Still fun to be together though...

We also went out to dinner together for the first time to the classy Round Table Pizza. Although the crowd was a little seedy, we enjoyed being out together and the pizza hit the spot. We even fed her there (first with her bottle, then with the G-Tube). One odd thing - as we were leaving, I felt a tap on my arm and a lady asked me "What's wrong with your baby? Why is she on oxygen?" We just said it was weak lungs. That was the first time a complete stranger went out of their way to ask us about Caroline. I'm sure it won't be the last, but it was certainly unwelcome.

Caroline Smiles

Great Quote About the Handicapped

Friday, June 15, 2007

"Is it not possible to look beyond the canes, the wheelchairs, the braces, and the crutches into the hearts of the people who have need of these aids? They are human beings and want only to be treated as ordinary people.

They may appear different, move awkwardly, and speak haltingly, but they have the same feelings. They laugh, they cry, they know discouragement and hope. They do not want to be shunned.

They want to be loved for what they are inside, without any prejudice for their impairment. Can there not be more tolerance for differences—differences in capacity, differences in body and in mind?

Those who are close to the handicapped can frequently feel the nobility of the spirits who are confined in differently shaped bodies or who have crippled minds. "

James E. Faust, “The Works of God,” Ensign, Nov 1984, 54

Caroline's Baby Blessing

Thursday, June 14, 2007

We will bless Caroline on the first Sunday of July. Hope you can make it!

Sunday, July 1st at 1:00 p.m.

Bermuda Ward Building
10970 Bermuda Rd
Henderson, NV 89052-8666

Letter to the Support Group for Caroline's Syndrome

Below is a letter I wrote in April for the 9p- Support Group Yearbook. It's a summary of what's been going on with our family. There have been additional developments since April that I'll post later.

Caroline was born at 10:33 a.m. on January 17th by emergency c-section. I was admitted into the hospital the night before due to decreased fetal movement and was induced, which was fine with me because she was 9 days overdue! She did not tolerate labor well at all, so my OB decided to perform a c-section. I will never forget the first cries she made – there were three of them, so precious and so weak. I still didn’t think anything was wrong, until I realized that I kept waiting for people to be happy and no one seemed happy – everyone seemed serious – no smiles. After a few minutes, my doctor leaned over the curtain and told us that it looked like she may have some kind of syndrome. I was so drugged up that I thought he was joking, but then the neonatologist came up to me and said that they were moving her into the NICU (luckily this hospital had a level III NICU). They showed her to me briefly and then rushed her away. My husband and I decided that he would go with her, while they finished stitching me up.

Based on her symptoms and physical appearance (low-set ears, trigonocephaly, eye tags, etc.), the doctors initially gave my husband the diagnosis of Trisomy 18, a fatal chromosomal disorder. At 12 hours post-delivery, I finally got to be rolled into the NICU to see her for the first time – a truly bittersweet moment. She was such a delicate, tiny little girl (born 5lbs., 13 oz., 18 inches long), with tons of red hair, just sleeping away, yet working so hard to breathe, even with the ventilator in. I could not believe that this was my baby, so sick and full of leads and IVs and on a vent, and I could not believe that she would leave us so quickly. For the first 10 days of her life, we kept getting told that our sweet girl only had a short time with us before she passed way. We kept trying to have hope, but those first few days were extremely difficult for us – the feelings of despair were almost absolute.

Luckily, we prayed for a miracle and it happened! Her genetic test results came back and showed that she did not have Trisomy 18 but that she had 9p-, with additional genetic material from chromosome 1. It was such a joyful moment for us. From that time on, we were determined to try to stay positive about any troubles ahead and just be grateful that we got the opportunity to raise Caroline.

As I said earlier, in the NICU, she was on a ventilator for the first few weeks of life. She couldn't breathe very well because of, among other reasons, low muscle tone and pulmonary hypertension, which resolved in mid- February. She had some heart issues; most are now gone, although she still has an ASD and a slight murmur. She came off of the vent at about two and a half weeks old, worked up to full feeds on breast milk through a tube in her nose, but had problems drinking enough breast milk. She has the ability to suck and swallow with a bottle, but she works very hard to get down only a little bit of food (currently, the most she has ever done is 23 ccs – then, it was more like 10ccs). So, we decided to put a g-tube in her. It was a very hard decision to make, but the doctors and OT said that it would help her get home quickly and, once there, she could safely build up strength and be nurtured properly.

Other concerns were discovered in the NICU. She had an MRI that showed that she could have some developmental problems based on possible polymicro gyria, a brain condition that could cause developmental problems and/or epileptic seizures, but they can't be sure of anything and will do another check in 6 months. In the NICU, the eye doctor diagnosed her with optic nerve hypoplasia (ONH), which she said could mean very little or it could mean she will be close to blind. Right before she was released, Caroline started to have really low blood sugar levels in the mornings. Her bolus feedings were changed from every 4 hours to every 3 hours, and that seemed to help. She also failed two hearing tests in the hospital. Finally, we learned she may have cranial stenosis; we will need to see a cranial plastic surgeon soon for follow up.

At exactly 7 weeks old, on March 7th, Caroline came home with us. What a surreal car ride home – we felt like we were kidnapping her! But, she was all ours, and we learned quickly that we were capable of caring for Caroline by ourselves – but that doing so is hard work!

Since she has been home, her weight and blood sugar have been her main problems. She came home at 7 pounds, 10 ounces. Three weeks later, she had only gained 2 ounces. Our GI doctor changed her schedule from bolus feedings every 3 hours to every 2.5 hours with a continuous drip feeding at night. That change helped – a couple weeks later her weight was 8 pounds, 2 ounces. We will soon start adding calories to the milk as well. After we’d been home for a week or so, she started to have low blood sugar in the mornings (40s), so we moved up her first morning feeding to start an hour and a half after the drip feedings end, rather than 2 or 3 hours after. That seemed to help.

We’ve also had updates from other specialists since being home. Her hearing was rechecked, and she can hear! Her right ear is normal, and her left ear may have mild to moderate hearing loss, although the doctor thinks that could resolve with time – we have a check up in a few months. Caroline can also see! However, she is near-sighted and tracks objects slowly. The ophthalmologist said Caroline may not have ONH - because Caroline is so small, her eyes may just be on the small side. She referred us to a retinal specialist for further information. Caroline came home on oxygen and theophyllin. She’s now off of theophyllin and, in May, we’ll try to wean her off of oxygen.

We’ve started using Early Intervention Services. A speech pathologist comes by every few weeks to work on Caroline’s feeding. She does pretty well; on average she now drinks about 15ccs per feeding. Some days it’s more like 20ccs a feeding, some days it’s less than 5ccs. We try to remember that our girl has been a constant rollercoaster, and, despite all of the ups and downs, she is usually making long-term progress. Soon, we’ll start her working with a physical and occupational therapist.Obviously, Caroline’s diagnosis and medical issues have been a lot for us to absorb and deal with, but I think we're up for it. We are almost starting to come to a sense of normalcy again, and there have been many hours where we can put aside our concerns and just enjoy our sweet baby. She hasn’t really smiled for us on purpose yet (at almost 3 months) – we can’t wait to see her cute smile more often. We give her baths, sing to her, hold her, and rock her to sleep. We can tell she will teach us a lot and help us become better people.

We appreciate all of the support we’ve received from the 9p- board so far. When we found out about this organization, we were thrilled to hear that, even though the doctors had no idea what to tell us about our girl, there are people out there that have been where we’re going. Thank you.

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