Thursday, February 18, 2010

All dressed up for their first day back to school! The boys both enjoyed their first day back to the Richardson Center today. GI Clinic went well on Tuesday. Jonah weighed in at 27 pounds, Noah 24 pounds. Hurrah for Jonah! We have worked very, very hard to make sure he would gain weight. Thank you everyone who fasted and prayed for Jonah the past couple of months. Your faith has blessed our family once again. Jonah is out of the clear with his weight issues for now. We get to return back to working on textured food with Jonah and hopefully will make progress with the foods that he tolerates. This is just a snippet of what has been going on, more later!

Monday, February 15, 2010

Friends and family,

Many of you know our story with prematurity and the ongoing challenges that Noah and Jonah face as a result of being born at 24 weeks.

That is why I have joined the March for Babies walk which benefits the March of Dimes. Our team has joined thousands of compassionate teams across the country that support March for Babies. Won′t you please help us in this worthy cause?

Join us in the walk that helps all moms and babies.

The money we raise for March for Babies will help: all-important research offering preventions and solutions for babies born too soon or with birth defects

...educate women on things they can do to increase their chances of having a healthy baby

...provide comfort and information to families with a newborn in intensive care

...push for newborn screening and health insurance for all pregnant women and children.

Please help our team help babies. We invite you to sign up and join our team on the day of the walk or if able, offer a donation online (every penny counts!).

Click on the following link if you wish to donate and support us:

Team Noah and Jonah

Thank you, everyone, for all your support! We love and appreciate you!

Friday, February 12, 2010

Friends and family,

My sister, Valerie, is in her grad program at George Washington University and is doing a blog and discussion group for mothers with children with special needs. She needs your help! Please go to and click on discussion board (on the right) and join her discussion group. The more people that come and comment on her website, the better grade she gets. This is a quick and easy service project and would help my sister out A LOT!

Thursday, February 11, 2010

Well, I am not even sure how to some up the last two weeks. It has been one bumpy ride. Over a week ago things started off in the normal fashion on Monday the 1st of February. Noah had started with a runny nose over the weekend but nothing that did not appear to just be allergies. However, Monday night brought little sleep and a lot of throwing up of mucus as well as a very flushed and feverish Noah. By morning, we knew something was not right. We had a scheduled appointment with a surgeon to talk about the pyloroplasty for Noah and we decided to go through with the appointment as meeting with Dr. Hodge takes weeks. We did meet with Dr. Hodge but by the end of the meeting we knew we were going straight to the ER to have Noah looked at. We had thought of returning to Bakersfield and checking in to see Dr. Ho but I felt strongly that should Dr. Ho think that Noah need to be admitted to a hospital we would be looking at a return trip to Madera. So instead, I headed straight to the ER. It was absolutely crazy busy. We waited hours to finally meet with the ER doctor. They took Noah back and immediately started breathing treatments but the nurses and RT thought that Noah sounded mostly clear and that he possibly had a cold. The ER doctor (thank goodness) felt prompted to keep Noah overnight because of his pulmonary history and by morning Noah had worsened, even with the continuous treatments. The next day, the pediatric doctor decided to run the RSV test on Noah. At this time (Wednesday), I knew that Noah had RSV. It must have been that motherly instinct, I'm not sure, but something told me this was the problem. To worsen my hysteria, Noah passed two large, bloody stools. We immediately started a probiotic as the doctors/nurses suspected C-dif, which is a condition that can develop as a result of high antibiotic use (basically the good bacteria is lost and replaced with bad bacteria in the intestinal tract). The next day Noah was started on the Flagyl antibiotic to battle the C-dif. The RSV swab returned positive and Noah was put in to isolation. By Thursday morning, Noah's conditioned had worsened and after a chest x-ray and blood work pneumonia was confirmed so a second antibiotic was started to battle the pneumonia. Poor baby. I truly was beside myself. I could not believe that poor Noah was battling three issues at once! However, RSV does and can often cause pneumonia, especially in those patients with a weaker pulmonary situation. Friday night was very scary as Noah's oxygen saturation was not doing well and we had increased Noah to 3 liters of oxygen. The RT's/nurses were talking about a high flow oxygen system and starting Noah on 7 liters. I started to panic thinking of the possibility of failing on this system which would ultimately mean another ventilator situation. Thank goodness the good Lord heard our urgent prayers and Noah stabilized overnight.

In the middle of this, Jonah started having similar symptoms Friday morning. We had flown Grandpa Langston in the Wednesday before due to my suspicion that Noah had RSV. Grandpa was flown in that night and was at home taking care of Jonah. Grandpa ran Jonah to the pediatrician and an office swab tested positive for RSV. So Grandpa ran Jonah down to the Madera ER with the positive results and by Friday night Jonah had joined Noah. Oh my goodness, at this point we were not sure what else could possibly happen. I was grateful to have Grandpa, although it meant bringing Jonah with him. Shane also joined us and relieved Grandpa and I Friday night so we could rest at a local hotel. I was truly exhausted as I was suffering from little sleep and being closed up in Noah's room without much of a chance to leave. Noah has a severe anxiety of hospitals and will cling to you 24 hours a day during his stay, even putting him down to use the restroom would include a screaming fit until you were able to pick him back up. I was so exhausted from sleeping on the hard hospital bed that Friday night I was exhausted and thankful for a bed that was not hard to sleep on nor involved being woke every couple of hours or more often dependent upon Noah's various monitor/alarms.

Grandpa and I returned Saturday morning and gave Shane a break. He checked in to the Ronald McDonald house for Saturday night and relaxed for a couple of hours before returning. We managed the rest of the weekend in this fashion. To our surprise Sunday morning the doctor decided that Jonah was stable enough to be discharged and finish his recovery at home. Grandpa returned with Jonah and Shane left later that night in a rental car to return to Bakersfield.

Finally Tuesday, Noah started to wean down considerably on his oxygen. I prayed with a lot of fervor Tuesday night that we would be allowed to leave Wednesday for home. Tuesday night Noah took mostly care of the problem by removing his cannulas during a temper tantrum and doing well on room air. I woke up Wednesday with a good feeling we would be going home. We waited all morning for the doctor who strolled in around noon. To my frustration Noah had fallen asleep and when the RT returned to do a treatment he was satting around 88-90!! Of course, at this moment the doctor walked in. We sat and talked about what to do, I explained that when awake he was satting well and Noah woke up during this conversation and sure enough his sats were up in the mid 90's. The doctor insisted on discharging with oxygen, I explained we had everything at home and could handle this and even explained that I was to the point of going home no matter what (they wanted him completely off oxygen) because we had the full ability to manage his short term need for oxygen. The doctor finally agreed but said we would need the new oxygen order to be submitted to insurance, etc. and that may not be completed by the end of the day. I said not a problem, I could handle putting pressure on our insurance group to get it done. I truly don't think he believed me but it helps that I have a close relationship with one of the agents in the authorization department and she knows me by name. So after he left, trying to convince me we'd be at the hospital one more day, I immediately got on the phone and called Claudia. She gave me her fax # and told me to have the case manager get her the new order asap. Within 20 minutes the new order was through and they had called the local Apria group. Two hours later, we were still waiting and I decided to go pick up Noah's meds to return home. I called the Fresno Apria to find out where the delivery was and how long we would be waiting (I was a Mom on a mission at that point). They explained to me that they were not able to deliver the equipment until after 7:00 p.m. I said that was just not acceptable because I had a two hour drive home and why could I not pick up the equipment? Well, of course! They said. So I drove the 15 miles to pick up the equipment and within 45 minutes we were FINALLY out the door. That is one day that I was grateful for my tenacity and persistance. If I had sat around waiting, waiting we never would have got out of that hospital until very, very late. As it was we did not get home until 7:00 p.m. I was so worn out between dealing with Noah's situation to battling the doctor to get my son home (who was declared fine aside from his ongoing need for a low dose of oxygen which HELLO I think after over 18 months I can HANDLE a 1/4 - 1/2 liter of oxygen and nebulizer treatments) that I was more then thrilled about getting a shower and going to bed.

I have never appreciated my own bed as much as I did last night. I am so, so grateful to be home with my boys. Thank you to everyone for your prayers, text messages, emails and everything else (dinners, etc.). We have such a great network of family and friends. We could NOT do all of this without you!

With Grandpa in town and insisting that we take a break for Valentine's Day, Shane decided on a hotel near a beach in Los Angeles for the weekend. I am thrilled, I love the ocean, it is so peaceful and calming to me. We leave tomorrow night and I look forward to relaxing and enjoying some time with Shane.

Thank you again everyone. Keep praying for our boys. We hope this was the last time for a long time that we will see a hospital. Also, I neglected to mention that Jonah is recovering at home. He is still symptomatic with RSV but doing much better.