Austin - 8 Months

Austin is now over 8 months old and just over 18 pounds. Over the last couple months, he has worked very hard trying to gain muscle strength. He can now lay on his stomach (with some friendly help) and hold his head up on his own for a short period of time. As seen in the picture, he is holding his head up almost completely on his own. His therapists are happy with some of his progress. We continue to push him to work hard to gain muscle strength.

In late October, Austin started having seizures. He typically has one in the morning and a second early evening. We are working closely with neurology to find an effective medication to help control the seizures. Due to an allergic reaction to one of the first medications, we are trying other pharmaceuticals, but it will take several weeks to take affect, so in the meantime, we just have to monitor him closely.

Austin has three wonderful nurses that come to the house Monday through Friday to care for Austin while mom and dad are working. The family is very thankful to have such wonderful help!!

Mom and dad completed their first 10 week class learning American Sign Language at the Indiana School for the Deaf. Although it is unclear whether Austin sees the basic signs we communicate to him, we continue to sign to him in the hopes that he sees something.

Austin continues to smile frequently and really enjoys any sensation he feels on his cheeks and around his mouth. He likes to focus on lights and we decided to put the holiday X-MAS tree up in October this year for his benefit.

August update

Austin is now 5 months old and is still doing really well. We had some continued good news from the opthamologist that the caracts are not growing (in fact, he called them miniscule!!). We are working with therapists on his vision as he has been labled as "legally blind" due to his inability to focus on anything or process the images he is seeing. We have a lot of faith that he will be able to have some vision with time and work.

More good news is that we were finally approved for a disability waiver through Medicaid. This will provide for in-home nursing care while we are at work and 60 additional hours/month of respite care. Life will be much easier :)

Austin is smiling more than ever. Although he won't eat by mouth, he loves to have his mouth touched with different textures. He even giggles when his tongue touches the texture... too cute!

The first picture above is Austin in his Bumbee. I found a way to support his head so that he can sit it in (although, as you can tell from the picture, he is less than impressed).

The second picture was taken last week (as hard as it is to believe... fleece and sweats in August!!). Austin enjoys his weekend jogs with the family. It took him a little to get used to the wind on his face, but now seems to enjoy it. The silver fellow next to Jered is Shadow, a rescue weimeraner we adopted in July. Apparently we felt we didn't have quite enough chaos in our lives. Shadow is a bit demanding, but Jered and I strongly believe in the power of therapy with animals and we hope that as Austin get older, Shadow will be a good influence (although right now, Shadow's "influence" consists of stealing shoes, stuffed animals and pillows!).

We hope all is well with you and your families and you take every day as a blessing.

July 4th through July 11th

On Saturday July 11th, Austin was released from Riley and is now back at home!! Between our July 3rd update and July 7th, Austin had more tests and surgery as a result of some other findings.

Urinary Tract Infection
As noted in a prior update, Austin has been treated for an infection while he was in Riley. The doctors ran a few more tests to look at the overall physiology of his bladder and his tract to try and determine why had an infection. Some anomalies were discovered with the overall development of the physical shape and texture. Further appointments and tests will be administered in the future as an outpatient with urology to try to prevent any future infections or issues.

Bronchoscopy
On July 8th, the doctors attempted to perform a bronchoscopy, which is a procedure that looks at the airway, throat and lungs. Due to Austin's heavy breathing rate and heavy wheezing, the doctors wanted to see if this procedure would identify anything obstructing or preventing normal air flow. The procedure involves the use of a camera and a light that is inserted through the nose or mouth and looks at the throat, larynx, vocal cords and lungs.

As they conducted this procedure, it could not be complete due to an obstruction identified just above the vocal cords. Austins throat was partially webbed together that needed to be operated on. Although the webbing was not significant, it would have some effect on air flow. Early on the morning of July 9th, Austin had surgery to have the webbing cut and treated and the doctors were able to complete the bronchoscopy by looking further down Austins airway to the lungs. Outside of the webbing that was treated, the rest of his airway looked to be normal with the exception of some floppiness and softness of the throat tissue near the larynx. This is expected to get better in time, but will be monitored.

Austin's Home
We were very pleased to be able to bring our son home on July 11th. Austin is on a monitor at home that tracks his breathing and heart rate. This monitor is considered highly precautionary, but gives us a lot of piece of mind. Austin is now on approximately 7 new medications that are administered through his gastric feedings. We have multiple follow up appointments at Riley over the next couple months to ensure some of the findings identified this past couple weeks are appropriately monitored.

Since Austin's latest trip to Riley, we have noticed Austin appears to be smiling more and it is such a wonderful sight to see. We can only imagine he is much happier to be in the comfort of our home. We will start back up with his therapy appointment next week and hopefully will get back in a normal routine!!! Thanks for all the continuous thoughts and prayers and although Austin can't tell you, he really appreciates it!!

July 3 Update

The morning of July 3, the doctors extubated Austin from the ventilator. However, he really struggled with breathing due to swelling and suspected floppiness of his larynx and trachea (his throat and air pipe). They are administering IV steroids and aerosolized epinephrine (a vaporized steroid which is inhaled) to try to help with the swelling and allow his airway to open.

Late yesterday afternoon, Austin was still having difficulty. In order to avoid re-intubating, he has been placed in a tent with heliox (a helium-oxygen gas mixture; as helium is a smaller particle than oxygen, it assists in delivering air through the swollen area). He did well overnight and the plan is to wean him off the heliox throughout the day today. The doctors are predicting that if no other difficulties arise, we may be able to take Austin home as early as Monday.

Ear Tube Procedure Not Quite so Routine

Austin had his tube procedure as an outpatient the morning of June 30. During the procedure his CO2 levels were elevated so the surgery team had to intubate him. After they extubated Austin in the recovery room, he struggled to breath on his own and lapsed into a seizure. He was re-intubated and the seizure was quickly controlled with medication.

Austin was taken to the pediatric ICU ("PICU") for recovery as an inpatient. He was treated with steroids to try to reduce the swelling in his throat with the hopes of releasing him within two days. As he had difficulty with such a routine procedure, the attending doctor (who is a pulmonologist, but has a lot of experience with children with special genetic make-up) ordered a gambit of tests.

Hearing Results:
Austin failed his hearing test after the tubes were inserted, thus a CT was performed to determine if both ear structures were normal. The CT determined the only abnormalty was related to the structure of the cochlea (bilateral Mondini dysfunction; where the cochlea normally has 2.5 turns, there is only 1.5 turns). The cochlea is the inner ear structure (has the appearance of a snail shell) that functions to provide signals to the audio nerve. Austin will likely be a candidate for cochlea implants after his first birthday. In the meantime, he will need fitted for hearing aids as state law requires him to wear these in order to be considered for the cochlea implants. Jered and I will begin to learn American Sign Language ("ASL") in order to better communicate with him now and in the future.

Seizure:
Austin had a seizure during the ear tube procedure and the medical team in running tests to determine if the cause can be pinpointed. An EEG was ordered to assist in determining the cause. We have not yet heard the results of the test, but will update the blog when we have updated information. When Austin was born and had tests performed in the NICU, the medical team determined he was at high risk for seizures. Since the first seizure was witnessed, he will be provided seizure medication in the future.

Echocardiograph (Heart Function Analysis):
With the issues Austin experienced in the surgery and our expression of concern to the doctors regarding his higher than normal rate of breathing, a second echocardiograph was performed (first was in NICU after birth). This revealed he has a thickening of the aortic wall (Hypertrophic cardiomyopathy). Currently the thickening of the wall is not causing an obstruction of the aorta, but it is a progressive disease that must be monitored. In the meantime, we will administer a beta-blocker, which is the most common medication for this type of disease.

Ultra-sound:
In order to ensure the medical team has thoroughly examined everything, the attending order an ultra-sound of Austin's abdomen (which includes the stomach, liver and kidneys). The initial results indicated he has a small cyst on his kidney, but is not a concern at this time and will be monitored.

Metabolic Tests:
Austin is having a metabolic examination to determine his cells are functioning properly. If it is determined Austin metabolic work up is not normal, supplements may help his cells function properly. During the metabolic examination a urine sample was administered which we learned Austin has a bladder infection. This infection could have continued without symptoms and would have resulted in septicimia (infection of the blood). We feel lucky the test was administered and his infection was identified.

The Good News:
Given everything discovered as a result of Austin's abnormal reactions to a routine ear tube procedure, the medical team was able to identify more likely issues resulting from Austin's deletion. Jered and I felt blessed when Austin left the NICU in April as he did not appear to have any major medical issues. However, we also knew that so much was unknown and medical issues may arise in the future. Prior to the ear surgery, we had a feeling the procedure may not be all that routine. The issues that arose was not shocking to us. The good news is a lot of potential future issues have been detected so Austin can be more closely monitored by the great doctors at Riley Children's Hospital.


As of July 2, Austin's throat is still to swollen to extubate, so release date is still unknown. We will be updating this blog daily to let everyone know. Thank you so much for all your prayers. Our little guy is a true fighter!!!

Upcoming procedures in June 2009

Austin will have his ear tube surgery on June 30. Although all hearing tests to date show no signs of him being able to hear, we are hopeful that he has some limited hearing that is blocked by the fluid in his ears. This is a very common surgery with newborns and children.

Austin is scheduled for an MRI on July 15 to determine if his sacral dimple is indicative of a spinal defect. He had an ultrasound which indicated a question related to his spine and this will be the next step to determine if there is an issue. Although the MRI involves sedation, it is a routine procedure.

We go to therapies 3 times per week: occupational, physical and speech. The speech therapy is to help him develop his muscles to begin to eat. The therapists are wonderful!

Austin's Birth

Austin came into our lives at 6:36 am on March 14, 2009 weighting 6 lbs. 5 oz with a height of 17 inches. He was born through caesarian section due to failure to progress. During the operation he was stuck in the birth canal, which resulted in his bruising seen in his birth picture. He was immediately whisked off to the NICU as he had pitikia (little red spots from burst blood cells) all over his body and a few unique physical features. Four days after his birth we learned that he had a very rare chromosomal deletion (4q 21.1-23) and that he was a truly unique and special baby.

After two and a half weeks in the NICU and learning that all of his major organs and functions were working appropriately, we thought we were finally going to be able to bring him home. The morning we were to bring him home, he choked on his N-G feedings and the decision was made to transfer him to Riley to have an operation for a nissen fundoplication and a G-tube. The operations went well and we finally brought him home on April 6, 2009 (he weighed 5 lbs. 3 oz.).

What we do know about Austin is that he has cataracts in both of his eyes (which currently only cause minor vision impairment), has no hearing (we are working with the doctors on this), has low muscle tone and is developmentally delayed.

It is truly amazing how having a special child changes who you are and what you value. We have completed the grieving process for the life of the child and the dreams we thought we were going to have and have accepted our new life and the gift of Austin. We look forward to learning more about him as he grows and develops and believe our lives will be enriched more than we could have ever imagined.