Feeding- A Day In Our Life...

We thought you all might like to see how feedings work for Joshua with the NG tube. We do this after we've attempted to give him milk in a bottle first. Here is the pump, bag, and tubing as it looks hanging from the pole.




A close up of the pump. It is very small, but makes very loud beeps!




Here is a close up of Joshua with his NG tube. You can see the yellow end with two caps. We use this for his tube feedings, as well as for giving his medicines.




To start the feed, we pour the milk into the bag, turn on the machine, and start to prime it. This means that we stand there and hold the "prime" button until milk fills the entire length of the tube, from the bag to the red end of the tubing. Once that is done, we need to check placement.




These are the tools of the trade: the stethoscope and the syringe. To test placement with the stethoscope, the round end is placed on Joshua's belly and the syringe filled with about 1mL of air is attached into the yellow end of the NG tube. When pushed, you should hear a "swoosh" sound in his belly.




Method #2 of checking placement: using the syringe, we have to pull up on it to see if any stomach contents come back up. When we see that, that is an indication that the tube is in the right spot. Now, we're ready to attach the primed tubing to the NG tube.




Here, the tube is primed full of milk and is now attached to the end of Joshua's NG tube, ready to go.




Here is Joshua in his crib with the feeding bag and tube working. The pump can be adjusted to take as long or short as you want for the amount of milk to go through the tube and into the baby. Right now, it takes him about 30 mins. to finish 50mL of milk, which is a little over 1.5 ounces. This is not counting the 30-40 mins. it takes for us to get about 20-30mL into him beforehand...So, one feeding can take 1 hour- 1.5 hours! When it is done, the pump will beep until it is paused or shut off and will say "NO FOOD".




After the remainder of the milk has been primed into Joshua, we take the red end of the tubing off and have to flush the line. This means we take up about 1mL of water into the syringe, attach the syringe to the yellow end of his NG tube, and push the water into him, flushing down any remaining bits of milk so that he gets all of his nutrition. The yellow end must then be recapped to prevent any germs, etc, from getting down to his stomach.





We then hook the tubing over the faucet in our bathroom, fill the bag with warm water, and prime it again. We first send the water through, which pushes the little bits of leftover milk/formula out and cleans it. Then, we dump out any water left in the bag, and prime it again, tipping the bag to the side, which sends air through and fully cleans out the tubing. Rinse and repeat 6-7 times a day!

First Day Back to Work

Monday was my first day back to work and Michelle’s first day alone with all 6 kids! (I’m pretty sure that I had the easy part) All is going well with Joshua. He averages about 20 ml orally each feeding during the day and gets the rest by tube. Michelle and I are still very sleep deprived.

We’re very thankful to everyone who has brought meals and those who continue to bring meals…it’s a great blessing. Also thanks to those who have helped out with the kids.

Pictures!

Here are some of the pictures that I’ve been promising as well as an update. Joshua had his cardiologist appointment on Wednesday and the cardiologist said that everything was looking great. We’ve been getting used to life without my step-mom Diane (it was a whole lot easier when she was here). For the past three nights I’ve made Michelle sleep downstairs on the couch while I take care of Joshua’s feeding and changings. It’s the first time in months that Michelle has been able to sleep through the night. Took the boys to the coin club meeting last night; they had a good time as usual (Timothy won the Junior Member’s door prize: a Franklin half dollar). This morning Joshua’s feeding tube was coming out, so we decided to take it out for a while to give him a break from it. He took his 9 AM feeding by mouth (all 65 ml)! We’ll see how the rest of the day goes. I’m planning on returning to work on Monday, so Michelle will be alone with the six kids…doesn’t sound fun, but I’m sure that she’ll handle it fine. I couldn’t think of anyone better than Michelle to be going through all this with…I’m glad she’s my wife.

Enough words….time for pictures…that’s why everyone keeps coming back to this blog!

Trip to the Doctor’s

Today was Joshua’s first trip to the pediatrician since he left the hospital last Thursday. Today was also the first day that Michelle and I were the only adult supervision in our home. This morning I took my step-mom, Diane, to the Atlanta airport; we left the house around 2:00 AM and I got home around 5:20 AM. Joshua’s doctor’s appointment was at 10:15, so I had a chance to get a little rest before heading out again. Michelle stayed home with our five other children and I went with Joshua.

Over all it was a good appointment; nothing too major came up, mostly a bunch of referrals for follow up appointments. One highlight of today’s appointment was feeding. At the hospital, the speech therapist had “recommended” a swallow study for Joshua in a few weeks; he’d drink some barium from a bottle and they’d take images to make sure that he wasn’t aspirating it. According to his discharge papers, he’s supposed to only drink 5 ml (approximately 1/6 of an ounce) from a bottle 3 times a day and take the rest via his NG tube. The pediatrician agreed with us that the swallow study is unnecessary and to feed him as much of his 65 ml (a little over 2 ounces) feeding by bottle as he’ll take.

Tomorrow morning is his appointment with the cardiologist. We’ve got to bring him in a little early for an X-ray before his appointment. A friend from church is planning on coming over to watch our other kids.

I hope to get some more pictures uploaded soon, so check back from time to time.

Breaking News!

Joshua is finally home!

Since I’m so far behind in this blog, I’m going to catch everyone up in this one post. Monday 27 June the whole family went to Atlanta to see Joshua. We had to cycle everyone into the CICU one at a time and several times we had to leave or wait for 30 minutes due to admissions, folks returning from surgery, etc. It was a long day but well worth it. That night, Diane took the kids home while Michelle and I stayed at the Ronald McDonald House (what a great facility for families going through tough times…can’t say enough good about it). Tuesday morning (28 June), we went in for rounds and the doctor said that they may do surgery at the end of that week. By the afternoon, they had scheduled Joshua for surgery on Wednesday 29 June! We stayed at his bedside as much as possible that day. Talked with the surgeon that night about what they planned to do and the risks. He said that the success rate was roughly 95% for infants undergoing this procedure.

That night we stayed at the Ronald McDonald house again and went in for rounds in the morning. They wheeled Joshua into surgery around 1:00 PM (he was the second cardiac surgery of the day). Just as we got to the surgery waiting room, we got a call asking if we wanted to meet with the genetics counselor. We figured that it would be a good distraction for us while waiting for his surgery to finish (it was scheduled to be a 5 hour surgery). We found out that he has Down syndrome (Trisomy 21). The counselor gave us info about support groups and a clinic for Down syndrome. We went back to the waiting room and around 6:00 PM the surgeon came out to talk to us. The surgery had been a success; they were able to do a complete repair (instead of a BT Shunt) and he shouldn’t need another surgery for a few more years.

Stayed at the Ronald McDonald house again and went to rounds Thursday morning. The doctor said that Joshua was recovering very well (rated him an 8 out of 10). He recommended that we go home and spend time with our other children since Joshua would be sedated and on a ventilator for the next few days. Thursday afternoon we drove home and stayed until Sunday morning (3 July).

Saturday (2 July), the nurses said that Joshua would probably be moved to the step down unit on Sunday so we made a point of being there Sunday. On Sunday, we had a friend of a friend who is a therapeutic musician come and play the harp for Joshua. He seemed to enjoy it. Michelle and I really liked it as well…it was very calming for us (the staff appreciated it also!).

Sunday Joshua stayed in the CICU one more day. His morning chest x-ray was a little “wet” and the doctor wanted him to stay. Sunday night we stayed in the parent sleep pods at the hospital (tiny rooms with just two twin beds and a light). Monday (4 July) we went to rounds and found that they’d be moving him to the step down unit. They moved him around 11:00 AM.

In the step down unit, the parents are required to learn how to care for their cardiac children. There were classes we had to attend (car seat class, infant CPR, discharge class) as well as meetings with the different doctors and therapists. We also had to be on hand for 24 hours to prove that we could care for Joshua.

On Thursday (7 July) we were able to bring Joshua home. It feels great to have him home; however, it’s a lot of work. He’s still on an NG (nasogastric) feeding tube, so every three hours we give him 65 ml of breast milk. During the day we’re supposed to try to give him 5 ml via bottle and the rest via his tube. The tube is hooked up to a machine that looks like one you’d use to give an IV. It pushes the milk down the tube into his stomach at a certain measured rate. So every three hours we feed him and an hour after starting the feeding, we have to clean the bag/tube that we use with the machine (his feedings take an hour; we use the bag for 24 hours and then start the next day with a fresh one). He’s also on two medications that we have to give through the tube.

All the children are happy to have Joshua home. They are very interested in him and very affectionate. We have a ton of doctors’ appointments to go to for the next few weeks. It is sometimes very overwhelming, but we trust that God will give us the strength and grace that we need.

Enough ramblings for now…it’s almost time to feed Joshua again. I’ll try to post more regular updates and include pictures soon.

That Weekend

Saturday morning Michelle and I took the kids blueberry picking. Once again everything seemed so surreal, but we were trying to maintain some sense of balance and normalcy for our other children. Saturday afternoon we all rested. Sunday we went to church.

We’re very thankful for all the supportive people from our church, squadron, and neighborhood. While Michelle and I have been traveling back and forth to Atlanta, folks have been bringing meals to our family and offering to help in any way possible. What a blessing! We’re also very thankful for all the prayers from family and friends around the world.

Send In The Clowns

Thursday 23 June Michelle and I made the trek to Atlanta again. While visiting Joshua, we had some unexpected visitors: clowns! The clowns played a song for Joshua and I had to take some pictures.

Thursday was also the first chance that Michelle and I had to hold Joshua since he had been taken to the hospital on Saturday. Overall Thursday was a good visit.

That night we stayed at the Ronald McDonald House so that we could be at the hospital early Friday morning for rounds. Rounds take place each morning in the CICU; the doctors and nurses go patient to patient discussing the patient’s history, the latest test result, and the treatment plan of the day. Recently at Egleston they’ve allowed parent to take part in the rounds; it’s a great time to learn about what’s going on and ask questions.

Another thing to keep in mind about CICU is the visitation rules. Parents can visit pretty much at any time except in certain circumstances: shift change (a few hours in the morning and evening), new admissions arriving in CICU, patients returning from surgery, sterile procedures, and emergencies. One minute you’re visiting and the next minute you’re asked to leave for 30 or so minutes.

Friday we had another good visit with Joshua and then returned home in the afternoon.

A Few Days Home

Back home on Tuesday 21 June, we didn't do too much. Spent time with the kids, called more family and friends, and relaxed the best we could. The whole ordeal that we had gone through for the past few days seemed so surreal. We called the CICU each morning and night that we weren't in Atlanta. Tuesday morning we found out that the infection was not responding to the antibiotics as well as the doctor had hoped. They were going to do a Lumbar puncture to make sure his infection wasn't Meningitis. They also upped his antibiotics and lengthened his treatment. It looked like his surgery would have to wait until the following week.

Wednesday was an improvement. The doctor said that Joshua's infection was getting better, but that we would still have to wait on the surgery (We were thinking maybe 5 or 6 July). I went to base for a little while: entered Joshua in DEERS, visited the squadron, dropped off recycling, stocked up on groceries at the commissary. We started packing for another trip to Atlanta.

Big Trip To Atlanta

On Monday June 20th Joshua had yet another ambulance ride: he went to Atlanta. Michelle and I decided to drive straight to Atlanta on our own. We went to the admissions desk to fill out some paperwork and find out what room Joshua was in. We then went up to the Cardiac ICU (CICU) and got to see him.

We met some of his doctors and nurses (all very wonderful people) and were expecting to talk about surgical details to repair Joshua's heart. Back at the hospital 30 mins. from our house, the Dr had said that they might do surgery in Atlanta on the 20th or 21st, so we were hopeful to get it fixed and have him start healing up.

We had been pretty overwhelmed with everything: Saturday we have a new baby, find out that he may have Down syndrome, find out that he has a heart defect, have him carted away by ambulance twice. Just when we start getting used to all that, the doctor in Atlanta told us that he had an infection in his bloodstream (Group B Strep)! Surgery would have to wait until they got that cleared up. Talk about a rough day.

We met with a social worker who gave us all kinds of useful information. Also talked with the doctor again and he said that we should head home and try to maintain a balance with our other 5 kids. He said that before surgery and after surgery would be the best time to stay, especially when Joshua would finally head to the step down unit. We took the doctor's advice and headed home; we planned to return Thursday 23 June and hoped for surgery early the next week.

The trip home was uneventful; we were exhausted. 200 miles round trip might not be much, but all the ups and downs of the past few days had left us drained. When we got home, we were thankful to see my step-mother Diane; she had come out to help with the kids while we were going through all these things.

(Note: the pictures from my first post were taken on our first day in Atlanta; see below)

Background Story & Joshua 2 Days Old in Atlanta

Dear Family and Friends,

There are so many of you that we’d like to talk with personally and update; however, due to current circumstances it’s very difficult to call so many people. That’s why we’ve started this blog: to keep you all up to date on Joshua. Here’s his story so far.

Michelle’s due date was 14 June; that day came and went. Friday (17 June) Michelle had a midwife appointment and everything was looking fine. For those of you who didn’t know, we were planning a homebirth. Friday night at 10:00PM, my brother called and asked about stopping by; he and my sister were traveling from AZ to VA with 3 dogs, 2 horses, and a cat. We said sure, but warned them that if Michelle went into labor they’d have to change their plans.

We went to bed about 11:00PM (or at least I did). Michelle didn’t get any sleep; she finally woke me at 12:45AM. Her contractions were getting strong and fast. I called the midwife as well as the family from church that had agreed to watch our five children. At around 1:45AM, the kids were out of the house. At just after 2:00 AM the midwife had arrived. At 2:08AM Joshua was born. Michelle’s labor had gone fast and Joshua seemed to be doing fine. He weighed 7 pounds 13 ounces and measure 20.5 inches. Michelle and I were slightly concerned about a “fat patch” on the back of his neck; Michelle was also concerned about his facial features. She worried that he might have Down syndrome. By about 5:00AM, our midwife was on her way home and we were off to bed. At 8:00AM, the midwife called; she had done some research about the “fat patch” and recommended that we see a pediatrician who happened to have Saturday hours. We called and made an appointment.

We got to the pediatrician’s office a little after 11:00AM. She agreed that Joshua appeared to have some traits associated with people who have Down syndrome; however, we’d have to wait for genetic testing to be sure. She wanted to check his oxygen saturation levels and found that they were very low. She put him on oxygen in the office. She suggested and we agreed that he should have further tests done at the local hospital as soon as possible. Boy, were we surprised when a fire truck and ambulance showed up to get Joshua!

Joshua spent little time at the hospital and was soon transported to another hospital about 30 minutes from our home. After waiting several hours there, we finally learned that Joshua had a heart defect; he was diagnosed with Pulmonary Atresia with Ventricular Septal Defect.

What a long, scary day.

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Here are some pictures of Joshua on 6/20/11 in Atlanta. More info and pictures to come.