Sunday, May 31, 2009

What if God takes her from me?


The most painful thing i have ever done, more painful than childbirth, is watch my kids go through pain. Right now we don't know what is wrong with Karly. We do know that her head is growing abnormaly.
It started last wednesday May 27th at a well baby checkup. I mentioned to the dr that her head was lopsided. She examined and got quiet. She then said.. "i'm going to go get a second opionion..." While she was gone i thought the worst... They're gonna come back with a helmet and tell me she has to wear it! I was so wrong. She came back with a sad look on her face... "we think she may have something call craniosynotosis, which is where the plates in her head that are supposed to be seperate (soft spots) harden prematurely" My heart sunk. I knew what she meant. I knew it meant surgery... I cried all the way home. She called with an STAT appointment to get an xray the very next day. When i got home i looked in my medical books and i googled it... Basically it has to be corrected, or her brain will get smashed and she will loose her eyesight and/or become mentally retarded and/or die! My first thoughts are... My good friend lost her baby after a way less invasive surgery at 5 months of age... He died in her arms!

The surgery it self goes something like this... they pull back the skin on your forehead and face, saw out the part of the skull that is fused, break it into little pieces, and put it back! This is a picture of the typical jagged incision. This is not a picture of karly!!!! This is alittle boy who went through the same surgery.

So you can imagine my fear... Terror actually. I told my husband i couldn't do... She is two months old... I can't... i won't.... What if God takes her from me? He sent His son to die on a cross for us... but HE KNEW THE HE WOULD RISE>... i get no guarantees... I can't do this!

After the Xray appointment she asked us to come back in to see her husband (also a dr) for an additional opinion. He said basically the same thing but we have to wait out the XRay. Friday the 29th the doctor called me bright and early with a sad sound in her voice... the xrays were back. They Radiologist said they couldn't confirm or rule out the presence of suture closer but that at bare minimum the sutures are too close together and the xray is not looking good... The Dr wants an emergency CT scan. We rush to a radiologist friend of my Dad's in Beverly hills that same day. We are there by 1pm... I cried the whole way there.... This is a picture of me holding Karly's chin still in her CT Scan... I was crying and hadn't showered in over 24hrs....

The radiologist read the report right then. He said he could RULE OUT closure of the sutures, although he is not use to looking at baby heads so has no way to know what the size of the sutures should be. He did confirm some pretty bad asymmetry of her head. Which leaves us with a whole lot of questions. Its possible she still has craniosynostosis and we just caught it early. In this picture the left side of her head is more round and more swollen.

In this top view of her head the right side of the picture is more round and fuller.

In this picture the side of her head on daddy's chest is bigger.
So basically we know not much, other than her head is abnormal in a bad way... Please pray for her... We have our 5th and 6th opinions tomorrow as well as a check with her primary Dr... We have fedexing of xrays to the Beverly hills radiologist and fedexing of CT scans to a Pediatric neuro surgeon... a word i would love to never have to say again...
UPDATE: June 1st- Dr called this morning said she is not going to continue getting 4th and 5th opinions and is going to just transfer her where she needs to be and that is Loma Linda Children's Hospital. I feel like that is great that we aren't having to push things but it also scares me that she is moving things along so quickly... maybe because its THAT serious...
Update: June 3rd- Karly's Dr called and said she is being referred to a pediatric neuro-surgeon. I guess i though she was just going to be transferred to a pediatrician at Loma Linda not a neuro surgeon... This is kinda scary! I asked if she thought that it would be best to see a surgeon because she still feels she MAY need some sort of a procedure and she said yes. So i guess we are still far from being done like i had hoped!

Saturday, May 23, 2009

The last four months

From February till March 20th my life could not have moved any slower. On March 20th my life hit overdrive. Here are the last couple months in pictures.

February- Kendra singing tweentle tweentle liddle dars (twinkle stars) in the tubby

March- Me two weeks till exploding!
Aidan pretending to be me- the little darling....
and Kendra!
AT LAST!!!! The first time... ever i saw your face....

Going home March 22nd

In her cradle March 25- Found out she lost 12 ounces!!! The doctor is worried and her jaundice is too high! But with round the clock feedings every hour so she puts on weight and kicks the jaundice!

Daddy's girls! Today she weighs 6.6lbs so she gained 6 ounces is 3 days!!! Yea~

MArch 31 ~~~~~~7lbs... Yea!

7 days old!

First Bath

One very tired mama!

Toilet paper war at nana's! APRIL

Aidan's sisters! Karly is 8 .13lbs now April 8th

Good night kisses!

1 Month old! ~~~~9.13lbs~~~~

Tu tu!!!

Size does matter... Kendi's diaper next to Karly's.

Aidan's Soccer Game!

Aidan show-n-telling his new sister

Big Bear trip march 30!!!

May 5th DisneyLand!!!!! MAY

Having Karly at Disneyland was so fun. I 'wore' her all day long. She went on all the rides right along with me. She slept the whole time!

My healthy girl. Went to the doctor on May 11th for a checkup. They weighed her and she was 8.3lbs. Which means she lost a pound and a 1/2!!! The doctor started talking about failure to thrive and that i needed to bottle feed and record her feedings every hour and see him back in three days. If she had not gained wt we would either admit her or hook her up to some sort of feeding tube! OF course i was in tears and histerical. When i look at her she looks like she has gained!!! I went to the breast feeding clinic to insure that i was doing it right. They took her and gave me the pitty look after i told her about the wt loss. The nurse gently assured me that this just happens sometime... i know as a nurse that it is usually do to a lack of bonding though... This baby has been BONDED with! They gently place her on the scale and .... 10.8lbs.... Her doctors scale was BROKEN!!! I cried with joy!!! So i got my self a little plumpy!

May 20 2009 She is currently a healthy 11 lbs!!!

This last two months have felt like the quickest months of my life. It is amazing how slow the end of the pregnancy feels then life soars by the second your baby takes their first breath! Karly is such a good baby. She rarely cries, sleeps & eats well, and just started to smile and coo. I couldn't be more in love with her! My life is very blessed!! I am a bit tired though!