Looking Forward to the New Year

Yesterday, Declan spent the day visiting the cardiologist and having an echo cardiogram. The doctors were pleased with the way things looked.  Nothing was present that shouldn't be - his heart was making all the right noises. The cardiologists were happy with his progress as well. They were excited about his weight gain as hit 10 lbs even! The concern we have is his lack of bottle feeding. Prior to leaving the hospital he would take close to 1/2 an ounce. Since then, the amount he has taken orally has slowly decreased - now down less than 1/5 an ounce. The doctors were not as concerned as they are more focused on his weight gain. We have therapists coming this week, so perhaps they can crack the code to Declan's lack of bottle feeding. Luckily, he has the feeding tube to make up the difference. 

We are so blessed that he has been relatively healthy.   His color is good, the scar on his stomach has been healing, his heart sounds good, and he is slowly gaining weight. We are doing our best to adapt to our lack of sleep, and getting more comfortable with replacing his feeding tube  (he threw up the tube out of his mouth 3 times this week.)  Cambria is learning :"not to touch" and I love to watch her walk up to Declan and say, "baby, shhhh" and hold her finger to her closed lips. 

Looking for "Normal"

I can't believe how long its been since I've updated so I apologize  We returned from the hospital last Sunday afternoon. Declan had been keeping most of his feeds down and the doctors felt comfortable with us leaving. Declan has been doing pretty good keeping everything down at home as well. We were working on getting his feeds up to 75cc's per 3 hours. But then the other day he started throwing up again. As a result, the doctors have backed down to 60 cc's for a couple of days to see how he does. They seem to be okay with it as he has moderate weight gain. But we hope he can handle the feeds so we can start to ramp him back up. His weight is at 4.27kg. (For all his charting we have to do kilograms). His weight today was slightly down,  but the overall trend is positive. Today, when Tammy realized the number was less then yesterday, she said, "We'll just weigh him a bit later and maybe it will be a bit more."  I replied, "You cant just weigh him 5 times a day and pick the best number".  Tammy's reply: "Well clearly you haven't been on many diets!" 

I think the biggest adjustment is just trying to see how this all fits into everyday life. It is so difficult having to monitor Declan so closely, all the time. It's both mentally exhausting and physically draining. The constant feeding, then keeping him still so he doesn't spit up the feed, with a short break before doing it all over again is taxing. Then to top it off, we try to put in time with the girls so they don't feel neglected. The process makes for long evenings and tiresome nights. We have started switching feeds and that has helped and we've been given the green light to skip the 3am feed. Last night was our first night without that feed and it felt great.  We've had Tammy's parents at our house and we've now swapped out to my parents here. We are grateful for all the help, prayers, and little acts of kindness. Thank you all!.

Hospital Take Two

Sorry, it's been a few days since I've updated the blog. Between going home and trying to establish some sort of pattern, work, and then returning to the hospital, it;s been a bit tough. But to backtrack a bit, we only lasted 3 days at home. The fun began Wednesday night. We just finished one of Declan's evening feeds when his feeding tube came out. Don't even ask how. We  have an amazing Doctor who came and helped us insert a new tube. A short while later Declan threw up with such force that his tube came out of his mouth.  We were able to put the tube back in. I thought all was well and Thursday morning I was off to work. The day went fairly well, but then Tammy called me just after 5 and let me know he threw up his tube again and the doctors wanted us to return to the hospital for observation and to get his feeding back on track. I rushed straight to the hospital from work and I met Tammy at the ER  Of course like any other ER visit - the process was VERY slow. First we had to wait to get the new tube placed. Then of course we had to get an X-ray to check the feeding tube's placement. Boy was that fun. We were wheeled to the "holding bay" for the x-ray department. All three "bay's" were full so they positioned us against the wall with an insightful view of the poor moaning man in bay 1, the gentleman contending for the worst case of pneumonia in bay 2, and the mystery lady in bay 3. Needless to say, Tammy covered Declan in a sheet in her best effort to protect him from every manner of bacteria and disease. Thankfully, the x-ray technician rescued us with a quick x-ray so we could be admitted to the 7th floor.

Because of the increasingly frequent feeding tube displacements, on Friday the nurses gave us instruction on inserting a new NG tube . We practiced a few times on a small doll before attempting the real thing under the watchful eye of the nurse.  Although practicing on the doll was good for understanding technique, it just isn't that same as trying to feed the floppy, thin tube through Declan's nostril as he gags and thrashes around. But I survived, or should I say, he survived. An x-ray after the fact showed the correct placement of the tube and his feeding was off to the races.

The primary purpose of this hospitalization has been his frequent vomiting. He hasn't thrown up the tube since we arrived but he has continued to throw up, including some odd yellowish bile almost immediately after he had eaten. (But no milk came up, so that was weird.)  They haven't been able to pinpoint anything specifically that might be causing everything. He may just have the tendency to spit up more so than other babies and/or have a type of re-flux. But we will see. We hope to be able to leave tomorrow - assuming no additional episodes. We will keep our fingers crossed.

Home At Last!

We are finally at home! We spent much of yesterday with the nurses passing our "final exam": spouting back medications, doses, frequency; reviewing our "red flags" and if you can believe it, proving to the nurses we knew how to use a scale properly. I must say leaving the hospital was a bit anti-climatic. We've worked with so many doctors and nurses, we almost expected the type of send-of you see when a ship leaves port. But no, just one nurse bringing in the paperwork and "okay, you're done" - not even a walk to the car.  But we were free!
Once home we had to set up our little, medical center in our bedroom. We have an oxomiter to measure his heart rate and oxygen saturation once a day, (or more until we become less paranoid.)  We have a dresser top full of medicine and syringes for his twice a day medications. Also stationed next to his pack-n-play is his tower that holds his feeding pouch and pump which pushes his milk through his feeding tube.

Our first night here at home was ROUGH.  Declan has to be fed every three hours, and it takes about an hour to do it.  We first feed as much as we can to him via bottle (usually less than an ounce) and the rest is given through the feeding tube. So the night went something like this: 9pm to 10pm feed. 10 to 11 get everything ready for the next day. Overslept the 12am feeding and woke up at 12:30am. Fed him until a little after 1am.  Slept until about 3:30. (This feeding we do entirely via tube, so doesn't take too long, other than having to get up and turn off the pump and flush his line.) Slept from just before 4am until just after 6am to start feeding again.  The difficulty is that it really takes both of us right now for the feeds because we have to do a couple of tube placement tests and set up the feeding pump while the other person tries to get the poor sleepy guy to take as much food as he can via bottle. I'm sure we'll get used to it, but it is an exhausting process.  Giving the meds is another process in of itself. Luckily that is only twice a day.

We were pretty frustrated when we woke up this morning. The amount of formula Declan normally takes via bottle had been much less since we came home, we weren't "on the dot" for his feeding schedule, and he threw up some of his meds last night so we had to call the doctor at 11pm to modify things a bit. Plus we were running late this morning bringing Declan to his doctor appointment at 8am in the down-pouring rain.  Our doctor was very good at helping us step back and look at the big picture. He gained weight and is now above his birth weight, and his bottle feeds will pick up. Eventually we will learn not to stress the little things.  We are getting used to the lack of security blanket the hospital provides and are very grateful for grandma and grandpa's help. We couldn't do it alone. We are grateful for everybody's help!

Light at the End of the Tunnel

D-day, Departure Day, whatever you want to call it. We are cautiously optimistic that it will take place on Monday! The doctors and nurses feel confident that we will be ready to bring Declan home this coming Monday. We've been practicing the feeding tube, reviewing warning signs, and watching Declan pass his various tests. He passed his hearing test and latest echo test. He continues to be seizure free and his bottle feeds are ever-so-slowly improving. Our Journey board is half full as well. I'm itching to get out of here. It feels like we are frozen in time - day in and day out in the same small room with no escape except the occasional food run. I think we've eaten every food in the cafeteria, passed up almost every food truck outside, and consumed far to many Subway sandwiches. It feels like the last three weeks have been one very long day.  We are so excited to go home. We miss our girls and cant wait to see them! It is a bit scary to think that we will be essentially, "on our own" but we're ready to try that next step!

Back to School

Yesterday was Back to School Day. We were bombarded with instruction from various nurses and technicians from morning to mid-afternoon. As part of our "progress board" we have to show proficiency in various aspects of Declan's care. We began with an introduction of his oxygen saturation monitor. The device tracks his oxygen saturation and heart rate. Something we'll have to monitor daily. Additionally we received training on his feeding tube: how to flush the lines, and set the computer for the correct amounts and duration. Felt fairly manageable if we never had to leave the house; but daunting to think about taking him anywhere. "Well" the nurse said, "you'll have a backpack you can keep the monitors and feed bags in if you're traveling."  That sounds exciting.  Left me feeling a bit overwhelmed.

The day wouldn't be complete without our daily medicine quiz to test our knowledge of what feels like his ever-growing list of medication (usage for each one, dosage, and how to administer them.) Also met with the Cardiology Nurse who will be our primary contact during our weekly visits. She taught us about various warning signs to watch for, that might dictate either an immediate visit to her team versus a call to the ambulance.. That part was a little unnerving thinking about how often we'll have to make that decision. But overall we are feeling better about things. Although Declan's weight has been about flat, his feeding has improved slightly. So although they are definitely baby steps forward, they are at lest steps forward.
Also, we finally got a shot without tubes because he was in between a new feeding tube insertion.

The Journey Board

Today we were introduced to the "Journey Board". The board consists of about 35 things we have to have completed, or "mastered" in order to leave the hospital. The requirements range from such items as identifying your pediatrician (which we thankfully have the best) to being able to administer his various medications through his feeding tubes. It also includes requirements such as testing for oxygen saturation  and understanding red flags that would require a return trip to the hospital.  It's a bit overwhelming to think about everything we have to be comfortable with; but we have a great nursing staff that can teach us. I keep joking with Tammy that we should be awarded an honorary nursing degree by the time we leave the hospital. In the next few days they will be showing us the ropes and teaching us the skills we will need.

Overall Declan continues to do better. Still working on getting him to stop throwing up the formula, but he's keeping more down today. Weight gain was minimal, but positive at least. Looking forward to completing the chart, one box at a time and getting our little fighter out of here! Thanks again for all the thoughts and prayers!