Gunky eyes again

Off to urgent care we go!

Trying To Keep It Together

We Met with Dr. Carter on 6/12/13 but unfortunately his office never recveived the swallow study results from the hospital. The report has a lot of detailed information ( or at least it is supposed to anyway) I gave him the paper that I did have with me stating that she is to be on thickened feeds at "Half Nector" which is 1 tsp per 1oz of formula however, I explained to him that she is still aspirating even on that consistency. He said we will try "Full Nector" Which is 2 tsps per 1oz of formula and "Honey Thick" which is 2 Tbsp per 1oz formula. He believes me that these swallow studies aren't doing her justice 100%. So he said there's no point in doing a repeat study because we can experiment with different levels of thick to see if it helps her aspiration at all. He is hoping that her raspiness and cough will go away once we find the right level of thickness. He did listen to her lungs when she fell asleep because awake she was too noisy and he did agree that he hears light wheezing which we will keep an eye on. The plan is to follow up with his office a month from now to see where we are at with her problems feeding and cough. He says our main concern is to ensure she can eat without problem and that her breathing is fine. If she still has problems before our next follow up appointment next month he wants me to bring her back in sooner. If nothing improves then we will need to see an ENT specialist to check her airways,etc. He is a good doctor and I trust him with his plan. .

The good news is we have found a thickness that works best for Savannah and it's Honey thick. We buy the single serving packets 100ct for $49.99 and you use 1 packet for every 4 oz bottle. Definitely starting to add up on top of $30.00 a can for her soy and dairy free formula. She definitely has Dysphagia and we are trying to do the best that we can with making sure her feedings are more successful. Since using the Honey thick packets her coughing has cut in half compared to how frequent it used to be.

I did mention to her pediatrician that I am concerned about her developmental milestones. She just hit 6 months age on June 10th and she cannot sit very long even when assisted. The pediatrician finally saw what I meant when she went to sit her up and waited to see if she would tripod "catch herself" when leaning forward and well, that never happened. Pediatrician said we would wait another month to see if it improves and if not then we need to get her into therapy. Early intervention is key. I almost didn't want to say anything about her being behind development wise because I always see posts of friends babies that are younger and they are accomplishing so much, which I'm happy for them but it leaves me thinking about my little bug :(  I feel like she has been through so much and we still have a long road ahead of us.

My work, which shall remain nameless is really giving me a hard time right now regarding the absences I've had dating back to March when Savannah was in the hospital with RSV. The fact of the matter is I can't control when she's sick and if I had any control over any of this she would never be sick. I can't reapply for FMLA until 6/27/13 because there are only so many alloted hours per every rolling 12 month period. I was on FMLA prior during my pregnancy because I was severely sick and having ultrasounds almost every week after 20 weeks pregnancy and had a really hard time keeping food down sometimes. Anyway, my work's disability department runs your FMLA hours concurrent with your parental leave. How kind of them! As if I don't have enough already to deal with. I just keep telling myself that it could be worse and to just be thankful that it's not. I know one thing, I need my job, I need my medical benefits that will essentially get her seen by the right specialists because we have quite the road still yet to travel. I need my paychecks to pay for her feedling supplies and to pay the rest of my bills. Hopefully God will provide a way for everything to fall into place.

My husband is home sick today with a nasty virus and I hope and pray that our daughter doesn't get it because we know how easily she catches stuff. We also go on vacation in about 10 days and I cannot wait to get away. My soul needs it!

6/11/13 Savannah's Chronic Cough

This is the chronic cough we have been dealing with for over 3 months now. Her cough varies in severity and today was actually one of her better days respiratory wise. We have a follow up appointment with the Pulmonologist tomorrow morning and we are hoping that since her swallow study confirmed she has been aspirating that he will agree to further testing. 

 This is Savannah's Pulmonologist  Edward Carter, MD

He recently moved to Arizona and we are so thankful to have him on our team of doctors for Savannah. Here is a little bit of his background with the exception of his current Arizona assignment. We look forward to working with him!

Board Certified Pediatric Pulmonologist

Associate Professor of Pediatrics, University of Washington School of Medicine

Director, Clinical Services, Pulmonary Division

Director, Asthma Center, Pulmonary Division

Dr. Carter graduated from Princeton University with a degree in chemistry. After graduating from Vanderbilt University Medical School, he entered the Army and competed his residency in Pediatrics at Walter Reed Army Medical Center. After 4 years as a general pediatrician at Ft. Campbell, KY he completed pediatric pulmonary training at the University of Florida, Gainesville. He then was stationed at Madigan Army Medical Center, Tacoma, WA. There he became the Chief, Pediatric Pulmonology, and for the last 3 years he was the Chief, Department of Pediatrics. In 1998 he co-edited the Dept of defense/Veteran’s Administration guidelines for the management of asthma. This guideline was implemented world-wide in federal health facilities. Upon his retirement from the Army, with the rank of colonel, he joined the Pulmonary Division at Seattle Childrens Hospital.

Dr. Carter is committed to making the pulmonary division accessible to both patients and primary care providers. His clinical interests are asthma, the management of the respiratory complications of neuromuscular disorders, and home mechanical ventilator support. He is also active in the management of children with cystic fibrosis.

Dr. Carter’s research interests include clinical asthma management, asthma follow-up and medical adherence, and assessment of new pulmonary function techniques in toddlers and young children.

6/10/13 Thickened Feeds

Savannah is on thickened feeds right now (1tsp of rice cereal for every ounce of bottle made) We are glad we have a work around for her feeding issues but unfortunately the rice cereal leaves her constipated. We are hoping to switch to a thickening gel we heard about but we are waiting to see the pulmonologist Wednesday, June 12th to make sure switching to the gel would be the right thing to do.

5/22/13 Crackling noise while exhaling

We are so used to this little girl making some sort of noise while sleeping that we try to record different sounds to have proof for the doctor as far as what we are hearing and seeing because when we take her to the doctor she's always awake so they don't get to see what we get to see.

5/22/13 Sweaty Savannah

I know we live in Arizona and everything and the weather here can be brutal but we keep it about 78 °F in our house and she still sweats like this occasionally. At the time this was taken she did not have a fever but she has had a fever on and off periodically for the last few weeks. 

5/18/13 Junky Eyes

She had pink eye that started in her left eye and eventually spread to her right  so it lasted a lot longer than it probably would have normally. The doctor prescribed her Erythromycin eye ointment and eventually it went away about 2 weeks later.

5/11/13 We learned that Albuterol makes her Malacia worse

I was really hoping that the Albuterol was going to clear all the junk out that she was so desperately trying to expel from her lungs. What I learned was that Albuterol can make Malacia worse as it relaxes the smooth muscle lining the airways which Malacia babies already have floppy issues to begin with.  

5/12/13 Mother's Day

Not the greatest place in the world to spend Mother's day but at least they took care of my baby. When you are a Mom the most important thing in the world is your kids and that they are taken care of and looked after. She was given fluids due to being very inactive and borderline dehydrated. She had been acting overly tired and still sick with a chronic cough and fever of 100.4 rectally. They did a Chest Xray, Urine Sample, and Blood work. All which came back normal so they sent us on our way as if their work had been done. No answers just told to bring her back if she got worse.

Savannah blowing raspberries

She generally blows raspberries when she is not too thrilled with whatever is going on. Here she was waiting for the doctor to come in and give us her test results. No matter what this little girl is going through she is happy almost all of the time and doesn't let very much get her down. I truly admire her for being such a trooper!

3/21/13 Stridor

3/18/13 Home From the hospital

Home from the hospital for a few days and it seems that Savannah has picked up another cold right after having RSV. Not sure if her immune system just didn't have a chance to recover yet or what.

3/14/13 Savannah Day 2 in the hospital

Day 2 much better than Day 1. She didn't need oxygen during her stay but they did have to use the machine to suck the mucus impacted in her nose. The nurse on duty the second day said that Savannah was doing so good compared to other babies she's seen with RSV and she wonders if maybe Savannah had a false positive when they did the nose swab. Either way I feel like we were in the right place at the right time regardless of what this nurse though.

Hospitalized for RSV 3/14/13

Savannah was hospitalized for RSV on 3/14/13. She had caught the RSV from her daycare. She first started attending daycare on 3/4/13 after 12 weeks of Mommy being on maternity leave it was finally time to go back to work even though Mommy didn't want to leave her. I had picked Savannah up form day care this day and she threw up all over me as I was placing her in her car seat and then she went limp in my arms for about 10 seconds but it seemed like forever. This kid was like a wet noodle and was unresponsive. I nearly crawled out of my skin I panicked and ran with her in my arms out into the office of the day care to frantically see if I could hear any breath coming form her. It was so incredible loud with the other babies in her nursery room that I had to get out of there as quick as possible. After she came to, and opened her eyes she didn't cry or anything she was very calm as if she had fallen asleep only she WAS NOT breathing. So trusting my motherly instincts I take her into Cardon's Children Hospital and explained to them what happened and she had a fever than as well along with congestion and cough so they decided to do an RSV swab in her nose and it came back positive so they admitted her. I remember they kept telling my husband and I to be prepared because RSV generally gets much worse before it gets any better. We prayed over her and had others pray over her. Our Pastor came to see her and prayed over her and 2 days later we were home. 

Introducing Savannah Grace

Savannah Grace was born 12/10/12 

 Savannah was born almost full term and weighed 6lbs 1oz. She had great scores when she was born but my husband and I were very concerned about her breathing which was extremely loud and she was snorting when breathing and sounded like a little pig. The nurses and doctor dismissed our concerns and said that all babies sound stuffed up and noisy because they can't blow their noses and that there was nothing to be concerned about. As weeks went on we realized that not only did Savannah have some trouble swallowing when drinking from a bottle but she also had extremely noisy breathing especially when asleep. People would comment on how loud her breathing was and it wasn't until one day we realized that she had noisier breathing when laying on her back than she did laying on her stomach. She has a milk and soy intolerance so I adjusted my diet so I could continue to pump breast milk for her however the swallowing issues complicated things because we found out that thickening breast milk with rice cereal is a no go since there is something in breast milk that breaks down the cereal. So that was that, we switched her to Alimentum formula. My daughter has had a chronic cough since March and she's been to the hospital 2-3 times, urgentcare once, and her regular doctors office more times than I can count on my fingers and toes. I keep being told things like oh, she has a virus it will go away, or it's just broncholitis give it 2 weeks. Then my daughter started waking up in the middle of the night coughing really hard she would choke and scare myself and my husband half to death. She's already on reflux medication so I decided I would take her to see a pulmonologist  which I did most recently in the beginning of June 2013. He ordered a 2nd swallow study and thankfully I finally was able to get proof that my daughter has been aspirating during feedings. We follow up with him on June 12th and I've decided to keep an online timeline journal so that not only I have records of everything going on but others can keep up to date with what is going on with Savannah. Plan of action next is to request more testing!