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Thursday, December 20, 2012

The Adventures of the Doc Band Helmet

Last Friday Livie received her Doc Band Helmet from Cranial Tech.  She is doing okay with it but today she goes in for her weekly check up so they can make some adjustments.  I put the order for the design in on Tuesday so we should have a proof in about 8 days!  I can't wait to girly it up!  She also had her follow up eye exam on Tuesday and thankfully her eyes are perfect and she does not have ROP.

ROP is: Retinopathy of prematurity (ROP), previously known as retrolental fibroplasia (RLF), is an eye disease that affects prematurely-born babies. It is thought to be caused by disorganized growth of retinalblood vessels which may result in scarring and retinal detachment. ROP can be mild and may resolve spontaneously, but it may lead to blindness in serious cases. As such, all preterm babies are at risk for ROP, and very low birth weight is an additional risk factor. Both oxygen toxicity and relative hypoxia can contribute to the development of ROP.

I was pleasently surprised when the doctor said she didn't have to be seen until she was 4 like any other child.

Below are pictures of Livie's DSL scan to create the helmet as well as pictures of her first fitting.
DSI Pictures being done to make her helmet
Her first fitting

what is this thing?

starting to get used to it


Pretty Girl!

Rockin' the Helmet!

Wednesday, December 12, 2012

The reason Livie has blue eyes

The reason Livie has blue eyes

I thought this was interesting and was wondering myself.  I always assumed she would have brown eyes since Weston and I have brown eyes but here is the reason in the article below:

Note: Weston's dad, brother, and sister all have blue eyes
My Grandmother(my mom's mom) had blue eyes too


How Two Brown Eyed Parents Can Have a Blue Eyed Baby

When my husband and I had our son numerous family members told us that his tiny blue eyes would eventually turn brown. My husband and I both have brown eyes so individuals who were unfamiliar with genetic laws assumed that two brown eyed parents would inevitably have a brown eyed baby.
When weeks turned into months and our son's eyes actually turned lighter blue rather than darkening to a shade of brown we had some individuals joke about the paternity of our child. While they may have done so in a humorous manner I did not find the comments funny at all. My husband and I are deeply in love and in both of our lives we have only had intimate relations with each other. The implication that my son might not be my husband's child was both insulting and offensive to me. After the first comment was made I thought back to my high school biology classes and remembered that both dominant and recessive genes could affect eye color. I then did a little bit of research so I could give and intelligent, scientific reason for my son having blue eyes.
When humans are born we inherit genes from both parents. Some genes are considered to be dominant and some are recessive. Dominant genes are more likely to produce a certain characteristic than a recessive gene. For instance, the gene for brown eyes is dominant over the gene for blue eyes or green eyes. The gene for green eyes is more dominant than the gene for blue eyes.
Two brown eyed parents can produce a child who has blue eyes if they each have a blue eyed parent of their own. This is the case for my husband and me. My husband's mother has blue eyes (b) and his father has brown eyes (B). Thus the genes he can pass on to his offspring are Bb. My mother has brown eyes (B) and my father has blue eyes (b). The genes I can also pass onto my children are also Bb. This means that our children could be born with either brown eyes (BB) or blue eyes (bb) even though we both have brown eyes.
Science Daily reports in an article from October 23, 2006 that two brown eyed parents who each carry a recessive blue eyed gene from one of their own parents have a 25% chance of having a child born with blue eyes. It is much more likely that two brown eyed parents will produce a brown eyed child because the gene for brown eyes is dominant, but as long as each parent also carries a recessive gene there is very real possibility they will have a blue eyed baby.
We had a second baby when our son was eighteen months old and though she is only nearing her fifth month of life we can already see that her eyes are turning brown. Unlike her big brother she inherited the dominant brown gene that we both carry. Biologically they are similar because they both carry our genes but the characteristics we passed on to her are different than her brother. Each has their own unique features that make them special and beautiful.

Friday, December 7, 2012

The Doc Band Helmet DSI appt

Today Livie went and got her DSI imaging done so they can create her helmet to treat her Plagiocephaly.  Two weeks ago they tried but she was in a horrible mood and her Torticollis was really bad and she was not having it that day.  Today went a lot smoother.  They got the images they need and her helmet will be done next Friday.  Once we get it we will head over to The Wrap Shoppe and have them pretty it up with an awesome design so she can look stylin' while she wears it.  We hope it will only be for about 8 weeks.

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Monday, December 3, 2012

It's Christmas Time Once Again.....

 It's Christmas Time Once again and this year we get to celebrate as a family of 4!  
It's hard to believe that this time last year I was keeping my pregnancy a secret praying it would finally result in the birth of a healthy baby.  I prayed I would get through the first trimester for the first time in 7 years. Well, after 8 pregnancy losses, 1 adoption, and finally a successful pregnancy here we are today!  Kayla is finally a Big Sis and Livie is celebrating her 1st Christmas!  It's truly amazing what a difference a year makes!  I've waited years for this dream to come true and here we are!  I am so blessed and lucky to have 2 amazing beautiful girls and an amazing husband.

Livie meeting Santa for the first time!
Kayla and Santa

Double Stroller time!
My Livie in her Big Girl High Chair!

Kayla making Cookies! She's a Pro!!! Watch out Rachael Ray!  

Livie Marie 7 Months old!

It's hard to believe that Livie is already 7 months old.  Her current weight is about 11 pounds 6 oz now.  She is still attending weekly physical therapy for her tortacolis and will get her measurements done for her Doc Band Helmet to treat her plagiocephaly this Friday.  Her helmet will be ready on the 14th and then we will take it to the Wrap Shoppe to have them create a template to decorate it.  Our hope is that she will only have to wear it for 8 weeks or so.  Since she is so young (in her adjusted age) they said it should work really well and results should be amazing.  For those of you who do not know what Totacolis and Plagiocephaly is below is some info:

Plagiocephaly is a condition characterized by an asymmetrical distortion (flattening of one side) of the skull.[1]
Plagiocephaly is the word that is used to describe a diagonal asymmetry across the head shape. This word particularly describes a flattening which is to one side at the back of the head and there is often some facial asymmetry.  It is a common finding at birth and may be the result of a restrictive intrauterine environment.The unusual head shape in plagiocephaly is caused by pressure in the womb giving a "diamond" shaped head when seen from above. In pronounced cases there may be flattening of one side of the head as well.
The incidence of plagiocephaly has increased dramatically since the advent of Sudden Infant Death Syndrome recommendations for parents to keep their babies on their backs.[3] Treatments range from a simple repositioning of babies below the age of 5 months to more involved treatment with a helmet for children under the age of 18 months.[4]
Often caused by inability of the infant to turn their head in one direction due to neck pain. This causes the baby to always be on the same side of the skull and it will become flat. Once normal movement is restored head begins to develop normally.
Here is a link to learn more about the Doc band we will be using.

Livie most likely developed this in-utero when my water bag ruptured early and there was little fluid for her to move around.  She was also breech which meant we had to do an emergency C section.

Torticollis is a twisted neck in which the head is tipped to one side, while the chin is turned to the other.  She is in physical therapy for this and it will resolve once her neck gets stronger and she grows.

Friday, November 16, 2012

Our Stay At Phoenix Children's Hospital

I'm a little behind in reporting about our hospital stay at Phoenix Children's Hospital with Livie last month.  I will spare the details but we say some pretty scary things in her diaper, and after and x-ray to rule out NEC, we were sent to PCH for 24 hour observation.  Turns out she had C-Diff which was a result of an antibiotic for her ear infection.  What a scary 24 hours!  I had to save all of her diapers, they had to put an IV in her head, collect a urine sample with a catheter, and wake her up every 2 hours for vital checks.  We didn't get any sleep that night!  It really brought me back to our NICU and hospital bed rest days.  It felt awful to be in the at hospital room.  They are great over there but I never want to spend the night there again!

10 Things Not To Say To Parents Of Preemies

Found this great article I found online

10 Things Not To Say To Parents Of Preemies

She meant well, to be sure. My friend, one of the most supportive people I know, had come to visit me in the hospital as I cuddled my prematurely born son, who was still hooked up to various tubes and looking more like an alien fetus than a baby.
“Oh,” she cooed when she saw him, “he’s a little monkey baby!”
That 4-pound preemie, born two months early, is now quite a sturdy boy of almost seven, but the sting of that long-ago remark came back instantly when I read a new report titled “Insensitive Comments And Their Impact On Preemie Mothers.” Compiled by an on-line community hosted by the company Inspire, it aims to document the emotional damage that wrongheaded remarks can wreak, and help the public do better.
About 12% of American babies are born prematurely — a half-million babies a year —  posing quandaries to all who know the parents. If a baby is still facing myriad, potentially life-threatening complications, is it right to say “Congratulations”? On the other hand, will you offend the parents by not saying it? What about commenting on a baby’s size or looks? Mentioning possible silver linings?
At our request, nearly a dozen of the mothers in the Inspire Preemie Support Community have kindly boiled their insights down into their top 10 don’ts, drawing on the report and multitudes of comments in their discussion strings. (At the end of this post, we’ll also share their top 10 most welcome remarks.)
1. “You’re so lucky that you didn’t have to go through the end of pregnancy!”
2. “At least, with the baby in the NICU (Neonatal Intensive Care Unit), you can get rest at night!”
3. “He’s so small!”
4. “When will she catch up?”
5. “What did you do, that he was born so early?”
6. “Everything happens for a reason.”
7. “Now that you have her home and off all that medical equipment, everything will be fine.”
8. “You’re just being paranoid about his health.”
9. “She needs to be exposed to germs to build up immunity.”
10. “He’s how old? My child is the same age and twice his size.”
What harm can an insensitive remark do? Quite a bit, if you consider that parents of preemies already tend to be under unspeakable stress. In an afterword to the Inspire report, Dr. Richard Shaw, a Stanford professor of psychiatry and pediatrics, writes:
The birth of a premature infant is an extraordinarily stressful and often traumatic experience in the life of a family. Several of the respondents made reference to the trauma of having a premature infant. Unfortunately, while the concept of postpartum depression is now very well recognized in the medical profession, the concept of a premature birth and a NICU hospitalization as a trauma is not one that is commonly thought of by health care providers. Research at our institution has suggested that as many as 40% of mothers may develop posttraumatic stress symptoms within the first few weeks of their child’s birth.
Our research, and that of others, has also shown that these symptoms, if not recognized and addressed, may last many years, and have an impact on the well being of both parents as well as on their developing child.
Of course, the trauma stems mainly from fear for the child and the merciless “NICU roller coaster,” not jerky remarks. But the Inspire report documents surprisingly deep, broad impact from insensitive remarks.
A majority of the 630 preemie mothers who answered Inspire’s online survey said that hurtful comments had added to their feelings of stress and isolation, and a fifth lost important relationships as a result. One sort of remark that particularly rankled: attempts to reassure the parents by discounting the health risks that the fragile children continue to face even after coming home from the hospital.
“More than 40% of respondents said that more often than not they heard people tell them that the babies ‘are fine when they are home from the hospital and that Mom is just being overly protective’ in expressing concern for the preemie’s health,” the report said.
The idea for the survey came from Inspire, the company that manages the preemie network among 160 online patient support communities for a wide variety of diseases. “We saw this topic was marbled throughout so many discussion strings on the preemies community,” said communications director John Novack.
Many parents feel passionately about it, said Deb Discenza, who moderates the Inspire preemie community of nearly 10,000 members and has been active in the preemie world since her own daughter was born early seven years ago. She has personally experienced the post-traumatic stress that Dr. Shaw describes above, she said: flashbacks of NICU alarms and fears well after bringing her daughter home. “That roller coaster keeps going up and down,” she said. “You never know when the hospital’s going to call the house. You never know when the apnea monitor is going to go off. You never know when you’re going to have to call 911.”
“That roller coaster keeps going up and down.”
By using the report to help sensitize the public, she said, the community’s members hope to give other parents “the chance to have a better experience. There’s so much focus on the baby that there’s no chance to validate the feelings and emotions of the parent.”
Those emotions often include the feeling of being judged, Deb said: “They feel like they’ve failed and done something wrong to cause this,” despite all facts to the contrary. “There’s this weird stigma out there,” she said, and providing better information is a way to fight it.
Part of the problem is that people simply tend not to know much about prematurity and life in the NICU; Deb, who is the author of “The Preemie Parent’s Survival Guide to the NICU,” also offersfree handouts here on her “Preemieworld” blog to help parents explain what they’re going through to others. They include one on life in the NICU and another on the excitement mixed with anxiety of the baby’s homecoming.
Even health care professionals must navigate the emotional minefield with care. Cheryl Toole, nurse manager of the NICU at Children’s Hospital Boston, says that training helps steer nurses away from certain types of remarks that they might otherwise think can only be helpful. (Read her lovely editorial on the ideal NICU here.)
“You never know when the hospital’s going to call the house. You never know when the apnea monitor is going to go off. You never know when you’re going to have to call 911.”

“Don’t worry, it’s no big deal, we see this all the time.”
Of course that’s meant to be calming, but “you’re always going to be worried when it’s your child,” and in fact, it can stress a parent out more, Cheryl said, because “it minimizes the parent’s concern rather than validating that they’re worried. Also, “Sometimes it can come across as a little unintentionally condescending, and the parent might be afraid to ask questions or raise a concern because they may fear someone might think it’s a stupid question.”
-”You need to be patient.”
Again, it’s meant to reassure, and to explain that after an intense initial one to three days in which the baby’s condition tends to become clear, parents are likely in for a long, less-eventful slog. A better option, Cheryl said: “You need to know that now it’s going to take longer periods of time for us to know the progress and direction that your baby is progressing in. That’s not a bad thing but it’s something we want you to know, so you don’t feel like no news is somehow bad news. It’s just a slower stage.”
-”It’s important that you understand how sick he is.”
Sometimes, when there is bad news, staffers might worry that because parents are not reacting with obvious distress, they haven’t understood it, and so repeat it over and over to try to get through. “Just because they don’t respond the way we expect does not mean they’re in denial or didn’t get it,” Cheryl said, “it’s just that everybody has a different pace of coping.”
Now back to our initial question: Congratulations, or no? Cheryl said that the Children’s NICU does not congratulate per se, but it does try to greet the family in a way that shows that “were validating that they have just given birth to this little person that they’ve planned on having, and obviously they’ve come a lot earlier than expected.”
The congratulations question also heads our top 10 list of remarks with the Inspire community’s seal of approval:
1. Congratulations! (Though this is somewhat controversial: some parents are offended at being congratulated when their babies are very ill. Others are offended because no congratulations are offered.)
2. “Tell me about your baby.”
3. “How can I help?” (Or better yet, offering specific assistance.)
4. “This experience must be very challenging.”
5. “He’s beautiful — he looks like you” (or the other parent.)
6. “I’ve brought you a meal.”
7. “I’m available to talk” — indicating what you’re really offering is to listen.
8. “Can I drive you to and from the hospital?”
9. “Tell me what’s going on with her medically.”
10. “I don’t know what to say, but I am thinking of you and your baby.”
Readers, please share your own stories — can anybody top my monkey baby?
(A 2011 Favorite)

Tuesday, November 13, 2012


So my dad just called after Livie's PT session and said our physical therapist said 

we should talk to our pediatrician about Livie having dimples on her shoulders. 

Have you seen other babies with them? 

 I didn't think they were a big deal. Are they?  I read on Babycenter and like the explanation about shoulder dimples. 

"People like to say they are dimples left from when God took off their sweet little 

angel wings and sent them here to earth." I actually really believe that to be true. 

I have 8 baby angels up there looking down on us.

I'm kind of getting tired of people telling me what is wrong with my child. Telling me how to position her, feed her, etc. She may not be perfect but damn it! Leave the poor 
kid alone!! Argh!!!

 Between our ped doc, the NICU follow up nurse and my PT lady I am starting to 

go crazy. I know they are trying to help but it is getting really frustrating. I feel 

like I don't even get to enjoy her anymore because I'm so worried about the way 

I'm holding her or if she isn't on her belly enough etc etc etc. 

On another note Livie was diagnosed with Plagiocecphaly and will have to wear a 

helmet for about 2 months.  She is flat on the right ride of her head.  I'm okay 

with that part. I can see it is an issue right in front of my face but all of these 

other little things that I would have never noticed had some professional not 

pointed them out to me is driving me crazy. 

To me, my baby is perfect.  She is happy and healthy.  Yes she needs some work 

on her neck and yes her head needs rounding but I'm tired of people telling me 

she is rolling over the wrong way or not propping up on her elbows correctly.  

Argh I just want to scream sometimes!    

I feel like bursting into tears right now.  Everyone makes me feel like I created 

this imperfect little person and that I'm doing everything wrong.  I know that isn't 

the case. i am trying to be the best mom I can possibly be.  Sorry to vent to you.  

I don't feel like there are very many people I can talk to about this.  I am just 

happy she is finally here and healthy and that I finally did it.  I finally gave birth 

to a living baby.  I guess I'm just not used to all of this instruction.  With Kayla I 

was never judged or told I 

was doing this or that wrong. (other than from my mother-in-law but I would just 

ignore her)  

Sorry I am me being a downer.  I am truly happy and feel 

very blessed. It's just that as soon as I think we have passed one

challenge another one arises.  We will get through this like we always do.  Just 

kind of ready for things to slow down for a while.

Wednesday, November 7, 2012

Dear NICU mom.....

Great letter I found on Facebook by a blogger:  I can relate to her letter so much.  Thankfully Livie was born at 29 weeks 5 days and not as early as 23 weeks but it doesn't matter how early or late our babies were born.  Each NICU stay is a rough roller coaster ride full of triumphs and set backs and then once again triumphs.  I also had this vision of having a normal birth with the doctors placing her on my chest and me getting to snuggle up to her with tears of happiness in my eyes because after the long journey we endured, through all of our pregnancy losses, we had finally made it.  I thought I would get this huge belly and struggle to see my toes.  Have the usual complaints about swollen feet and wear cute maternity clothes. But instead our story ended up much differently.  Reading this letter brought back a lot of old feelings from our 6 week stay int he NICU.  I am so thankful Livie is healthy and happy and doing amazing.  I pray for all of those parents with babies in the NICU and know that I am truly blessed and lucky to have my miracle baby home with me where I can finally snuggle with her without wires or beeping machines or nurses looking over my shoulder.

Letter to a new NICU mom