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MikenAustinsMommy
11-10-2006, 12:07 PM
Austin's Journey

July 7, 2005 - Austin came into this world at 2:28AM. The vacuum had to be used because he was not progressing down the birth canal like he should have been. When he was born he had a very swollen spot on his head, from the vacuum. Austin was taken for a CT scan later that day to make sure nothing was wrong neurologically. Our wonderful nurse let us know, before the Dr. came back, that everything checked out great with Austin's brain.

http://i62.photobucket.com/albums/h119/brianheathera/105-0598_IMG.jpg

July 9, 2005 - The photographer came in to take Austin's "First Picture". Austin's eyes seemed uneven in the photos. I was convinced nothing was wrong with my brand new baby, but my husband's instincts told him otherwise. We started to worry.

July 9, 2005 - Austin was put under the billi (sp?) lights for 3 days. He was not able to come home with us. We stayed at the hospital all day (until they made us leave for the night) then came back every 3 hours to feed him. He was finally discharged on the 11th.

http://i62.photobucket.com/albums/h119/brianheathera/106-0618_IMG.jpg

http://i62.photobucket.com/albums/h119/brianheathera/106-0625_IMG.jpg

July 18, 2005 - Austin's primary care physician referred us to the Craniofacial team at Childrens' Hospital in Orange County.

July 28, 2005 - Our first appointment at CHOC (Childrens' Hospital Orange County). Our fears were confirmed. Austin was diagnosed with Right Unilateral Coronal Craniosynostosis. Surgery could not take place until at least 4 months old.

http://i62.photobucket.com/albums/h119/brianheathera/AustinProf007.jpg

July 28th - November 17 - We did a lot of research about the condition and thought we were prepared for the surgery. We cried and worried a lot as a family. I blamed myself for Austin's condition, after all, my body made him that way. We struggled through day after day after day, trying to look like we were okay on the outside, while we were always crying on the inside. I held everything inside, because I didn't want my husband and older son to be as upset as I was. It was important for me to appear strong.

November 7, 2005 - Brian and I went to CHOC to donate blood for Austin's surgery. We were told we would be unable to donate blood because we had gone to Belize in the past year. This was a big emotional blow to us.

November 10, 2005 - We were told that Brian's boss' wife and daughter were positive matches for Austin's blood type. We were, and still are, very grateful to them.

November 15, 2005 - We were going to try to sleep deprive Austin for the 3D CT scan needed for the surgery. If it didn't work, he was going to have to be put under on 11/17 for another one. I woke Austin up at 3:30AM and kept him awake until his 9AM appointment. After feeding him for 5 minutes he was fast asleep. He stayed still for the entire 3 min scan. We were very relieved.

November 16, 2005 - We went to Austin's primary for the pre-op physical. Everything was a-okay. His Dr. wrote something down in Austin's chart... Torticollis... I didn't give it another thought.

November 18, 2005 - Surgery day is here. We feel relieved that it is finally here, but don't want Austin to go through anything that will put him in pain. I am scared that I won't recognize him when he gets out, that I won't be able to feed him, and that he will be in pain when it is over. We had to arrive at CHOC at 5:30Am, but actually got there at 5. At 7:40 the nurses came in to let us know it was Austin's turn. I was able to walk with Austin to the surgery room doors, then hand him off to the nurses. I think that is one of the hardest (if not the hardest) things that I have ever done. When we got back to the waiting room, we both collapsed into each others' arms and had a much needed cry. At 9:30AM the Plastic Surgeon's assistant came out to let us know everything was going fine. At 1:15PM He came out again to let us know Austin was in recovery and was very upset. 20 minutes later I was able to go to the recovery room to see him. I was standing at the crib, crying and holding his hand, and he stopped breathing for a few seconds. The nurse flipped him over, and moved his little arms a bit and he started breathing again. This was very hard for me to see. My parents, Brian's parents, and Michael were all able to see Austin after his surgery. After recovery we went to the PICU. Austin needed a blood transfusion as a lot of blood was lost during surgery.

http://i62.photobucket.com/albums/h119/brianheathera/110-1051_IMG.jpg

November 19, 2005 - Sometime in the early morning I was holding Austin's hand at cribside and Brian was getting some much needed sleep on the bed. I noticed Austin's breathing becoming more and more labored. I tried to read the machines he was plugged into, but they were having problems with the oxygen reads all night. A nurse came in and I told her what I was observing. Austin's heart rate and oxygen levels were getting very low. I was saying "come on Austin honey, you have to breathe..." while shaking his arm, as I had observed the nurse in recovery do. It wasn't working. Brian woke up and the nurse told him to open the door (to our private room in the PICU) and call for help. A team of nurses and doctors came right in. Austin's breathing stopped. The resuscitation was there in a matter of seconds. I had to leave the room because I wanted the doctors and nurses to be worried about Austin and not me. I was feeling very nauseous and light headed, so I ran to the bathroom. Brian stayed with Austin. Austin turned purple and became very limp for a little over a minute. The team of doctors revived him and put him on oxygen for the next two days. He also needed another blood transfusion later that day. We also found out that Austin had an allergic reaction to the plastic tape they used to keep his IVs and catheter in. Austin was frustrated having IVs in both feet that he actually removed the one from his right foot with his left foot. We prayed that they wouldn't have to put it back in.

http://i62.photobucket.com/albums/h119/brianheathera/110-1068_IMG.jpg

November 20, 2005 - I was finally able to hold and feed Austin, although he did not keep his food down. These 4 days have seemed like an eternity, not being able to hold or feed him. His eyes were still swollen shut, but he knew where he was. He seemed more at ease in my arms, and began to act like his normal self before surgery again. He smiled, and did other things that were so "Austin like". I wanted to run out to the streets and scream at the top of my lungs that my baby was going to be okay.

http://i62.photobucket.com/albums/h119/brianheathera/110-1066_IMG.jpg

November 21, 2005 - The drains were taken out of Austin's head today after we were transferred from the PICU to the normal hospital floor. It is much easier to hold him now because I am not scared I am going to pull them out myself. I held him the entire day, and all through the night. Nothing was going to make me put my baby down.

http://i62.photobucket.com/albums/h119/brianheathera/110-1075_IMG.jpg

November 22, 2005 - The Doctors came in in the morning and let us know we would be discharged that day. At 12:15PM, our paperwork was done and we could take Austin home. We were very excited, but also worried... We were on our own with him now, and hopeful that nothing else would go wrong. We didn't have a team of nurses and doctors 50 ft. away at home.

November 23, 2005 - Austin's sleep pattern is way off, but we expected that. Other than that, he is doing wonderfully.

December 5, 2005 - We had our first follow-up with the plastic surgeon. He mentioned the Torticollis and said that we would need to do physical therapy with Austin to correct it. We learned that Torticollis is just a fancy term for one neck muscle being longer than the other one. Austin's head is still a bit swollen, but, that is normal

http://i62.photobucket.com/albums/h119/brianheathera/111-1148_IMG.jpg

October 16, 2006 - Dr. Sundine & Dr. Loudon cleared Austin and said he was looking and progressing wonderfully! They don't have to see Austin for another year. We feel a bit of anxiety because we won't be seeing them for a while, but also breathed a sigh of relief for the same reason.

http://i62.photobucket.com/albums/h119/brianheathera/b-a.jpg


October 30, 2006 - Austin is almost 1 year post op (11.75 months post-op).

http://i62.photobucket.com/albums/h119/brianheathera/DSC00236_edited-1-1.jpg

Here's a recent family picture. Austin has a slight eye infection so his right eyelid looks puffy.
http://i62.photobucket.com/albums/h119/brianheathera/Cruise-103006.jpg

MILASMOMMY
01-05-2008, 09:39 PM
seeing these photos and reading your story has helped me to deal with this...my baby Milana was diagnosed 2 mos. ago..and I'am sooo devastated....thank you...liz

Jenny
01-05-2008, 11:56 PM
wow, poor little guy... you really had a rough road... most of us didn't have these kinds of complications.. do you know what the cause of his complications after surgery was? I am so happy he made it through ok, i could not imagine having to go through as much as you did, i was a big enough basket case!

xl1200c
01-06-2008, 12:32 AM
Heather,

Thank you so much for sharing. At one point you mention wanting to appear strong - clearly you are incredibly strong. You should be so proud of yourself and your whole family for your incredible journey. He looks awesome in his pictures. Best wishes to you.

mayanetser
01-06-2008, 01:26 PM
Heather, he is so handsome. You are a very strong lady, you should be proud.

MikenAustinsMommy
11-29-2010, 10:29 AM
Just an update... We just celebrated Austin's 5th Cranioversary. He's only had to have that one surgery (aside from a tonsillectomy with runs in the family) and he is doing great. He is excelling in Kindergarten, reading and doing math at the 1st grade level. He is a sweet, amazing, perfect little man now and I couldn't be more proud of him.

I still get teary eyed thinking of the surgery and days after that he went through but then I look at what a great person he is and those tears turn to happy tears

kfa329
11-29-2010, 12:59 PM
Happy Cranioversary Austin! I enjoyed reading your story!

Kate Carey-Trull
11-29-2010, 04:36 PM
So great to read an update five years later -- those pics in the story are amazing. Do you have a couple new ones you could post so we could see how big he's gotten? :)
Did the physical therapy for his torticollis go smoothly? I have a friend whose son has it.

SummerEhmann
11-29-2010, 07:56 PM
Congrats! The before and after pictures are astonishing! It's just amazing and gives all mommies facing surgery hope. He is adorable!

MikenAustinsMommy
12-18-2010, 11:32 PM
Here are a few, more recent pictures.
The surgery alone almost cured his torticollis. His primary doctor had me massage his neck muscles several times a day and it worked. We ended up not having to see the physical therapist : )

http://i62.photobucket.com/albums/h119/brianheathera/disneyland033.jpg

http://i62.photobucket.com/albums/h119/brianheathera/s41748cd110537_17.jpg Austin's on the left

http://i62.photobucket.com/albums/h119/brianheathera/avatar2.jpg
Austin is on the right

minio
01-20-2011, 06:11 AM
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QFormat="true" Name="Subtle Emphasis"/> <w:LsdException Locked="false" Priority="21" SemiHidden="false" UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/> <w:LsdException Locked="false" Priority="31" SemiHidden="false" UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/> <w:LsdException Locked="false" Priority="32" SemiHidden="false" UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/> <w:LsdException Locked="false" Priority="33" SemiHidden="false" UnhideWhenUsed="false" QFormat="true" Name="Book Title"/> <w:LsdException Locked="false" Priority="37" Name="Bibliography"/> <w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/> </w:LatentStyles> </xml><![endif]--><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin;} </style> <![endif]--> I am honestly saying that Austin’s story shocked me and it touched my heart. I have to appreciate Austin’s parents for the dare and care. I am not daring to face this much of hardest things in my life. I will pray for Austin’s life is going good for long years.

mattbeck
07-02-2011, 02:18 AM
Wow, what a difference the surgery has made, it's unbelieveable what doctors can do.
My daughter has the same condition and had surgey 11 months ago.
It was great to read a story from another mother who ahs been through the same surgery, only difference being that my daughter didn't had all the extra complications that your boy experienced, he's one tough little man.
Congrats!