It is HIGH time I update our blog. We've been on quite the journey; a journey of parenting, of tube feeding, of dealing with reflux...we take things a day at a time, sometimes an hour at a time. It is not easy. It is not always fun. But Noah's smile makes it all worth while.
Where to begin - we came home on a pass from the hospital on December 24. We were really excited to have Christmas at home with Noah. A couple of elves decorated our house and left oodles of gifts under a little tree. What a blessing.
However, I (Dar) continued to have severe pain and on Christmas Day went back to emergency. After receiving IV antibiotics I returned home to Jared who had been doing all of Noah's tube feedings (a huge job). I was terribly ill for the next several days.
It was that same weekend that I was finally diagnosed with post-pardum depression. It is neither easy to talk about nor will I reveal all the details in this blog. Needless to say, I had been struggling since Noah was born and this had nothing to do (although it probably didn't help) with his health condition. Thanks to a couple of "angels" I went into hospital overnight and though it took another week and my family doctor to actually start the process of healing, I was finally listened to. A huge relief. The journey with this common type of depression has been laced with lessons. It required us to hire full-time help. That was a struggle for me to accept that I could not care for my son on a daily basis without support. However, one internet ad and an interview later, we had Evelyn. She turned out to be a direct answer to prayer and a perfect fit for our family.
I decided it was necessary to take medication for depression. It has helped tremendously. I am constantly working on finding ways to battle depression with good nutrition, some exercise, fun, and rest (hahaha with a baby). I pray daily for the ability to sustain the effort Noah requires. Each day is a little better for me. In the darkest moments I did not know I would feel as well as I do today.
Noah was officially discharged on January 2. Thankfully all the major tests he's had (MRI, Stomach Emptying, Upper GI, Metabolic tests, Neuro tests) came back negative. His need for oxygen tubes also ceased on January 1, the day before we came home. That was amazing, especially since Jared had gotten the house all ready to go with home oxygen tubing. So we left with an NG tube and reflux. 6 weeks in hospital. One tired husband, one depressed wife. Needless to say, it was not an easy time. Without knowing how long the tube would be in place was really hard. Then we had to learn to accept life with tube feeding. Then we had to learn to tube feed Noah with love. Now we pray before Noah "eats" - thank you God for our food today and our tube today. Amen.
Noah's current condition - life is tough for this little guy but he is a trooper. We feed him, try to keep him still for at least an hour and often he still throws up (not spit up, to clarify) large volumes. This has caused him to be labelled "failure to thrive" at several different times. Noah has taken the last 6 weeks to maintain 12 pounds and we hope soon he'll move onto to the realm of 13!
Our day consists of 6 feeds. That is down from 8 when we initially came home. That was a very stressful period of time. Jared was up 2 times in the night for feeds as I was unable to manage on my own. Each feed takes approximately 1.5 to 2 hours to drip in using a Kangaroo Gravity Feeding Bag attached to his Nasal-Gastric tube (NG tube http://en.wikipedia.org/wiki/Nasogastric_intubation). The tube is changed once a week. Initially I did the changing with a Paediatric Home Care Nurse watching (yes, they would watch and hold his head, but not do the change). Then a lovely lady volunteered to do it for a 5 week period and now Jared and I are handling the changes on our own. This is definitely one of the hardest parts of tube feeding. Noah screams and screams. He also dislikes anything to do with changing the tapes that secure the NG tube to his face. We have to change the tapes almost daily and have purchased about 8 types of bandaids to help keep the tube secure. Curious fingers find their way to the tube regularly and we do not want to keep putting mittens on our developing boys hands all the time.
At each feed, we try to keep Noah asleep and moving as little as possible. This is obviously getting more difficult as he gets older and wants to play more. Moving him at any point in the feed or directly thereafter can lead to him refluxing. He chokes and vomits regularly, even hours after a feed. It is very hard to watch and we feel helpless. Of course, all of this vomiting does not help his weight gain. Those of you who have experienced reflux in a baby know how hard this is. He is not able to nap "normally" so he does a lot of sleeping in arms and will also sleep in his stroller during walks.
We work with a feeding team consisting of an Occupational Therapist (an excellent one!), a dietician and a paediatrician. We go to Children's Hospital to the feeding clinic to work on oral feeding skills with the OT, Kim. She is a wonderful source of encouragement and love for Noah. He enjoys his time in the clinic. We play with little cups, spoon feed formula and work on developing his skills as we move to solids. We have NO idea how he will react or accept solids. Its another journey we will undertake soon.
We will also be working with a Physiotherapist in the near future as Noah has some "low tone" or hypotonia. It is quite minor at this time but a Neurologist still wants to have Noah put under general to complete a muscle biopsy . We will see the orthopaedic surgeon soon to discuss the procedure. In the meanwhile, we are considering a G-Tube (http://www.wisegeek.com/what-is-a-gastric-feeding-tube.htm) but are not sure if/when we will proceed with this. Our OT is not sure it is the right step for Noah so we are in a holding pattern for now. We want to make the best decisions for Noah's quality of life and sometimes we just are not sure which direction to take.
The most difficult challenge is Noah's aversion to the bottle. My biggest fear when the NG tube was placed was oral aversion. As the months have gone by, Noah has basically ceased to bottle. It is heartbreaking. Aversion is very common with tube feeding. I can imagine why considering a few factors: not understanding hunger, having tapes on your face all the time, being fed on a precise schedule etc. This is a whole other journey to overcome the aversion besides his inability to bottle effectively (he used to always try the bottle but would tire out or just stop). Now he turns his head, screams, or chomps/chew on the bottle. We are trying cup feeding, spoon feeding, and have purchased as many sippy cups as we did bottles. If anyone needs different kinds of bottles, please let us know - we have cupboards full!
We continue to try different products to help Noah. We are trying a chiropractor. We will not stop trying new things. We do not put our hopes in any one particular strategy but never want to stand still in our attempts to help Noah.
Noah is a dear little guy - those of you who spend time with him (THANK YOU THANK YOU) see his sweet little smile, his belly laughs, his growing strength and development. I love seeing his big blue eyes in the morning with a smile from ear to ear as if to say "I'm so glad you are my daddy and mommy!!" We certainly are blessed that he is our son. He has a lovely personality and is even-keeled despite his challenges. He is really into rolling over right now which is a delight to watch. He doesn't like being on his stomach but is learning to be in a better mood when it does happen.
People often ask how they can help. First of all, thank you. We were so blessed with meals, gifts for Noah and us, the presence of family and friends, and constant prayers. Mostly now we need prayer, understanding and acceptance. Prayer is obvious. Understanding that we are trying everything we can and that Noah is unique ("special" in my mom's words). Acceptance that this journey is in baby steps (thanks to my new friend Val for that constant reminder!) and won't fit in any particular timeline or with any particular results with things we try. Acceptance also means knowing that Noah is not just being "difficult" or "strong-willed" but that he has actual challenges with feeding and is following an aversion pattern common with tube-fed infants. That does not make him stubborn, it just makes life hard for him. Noah didn't choose to be tube-fed and we are trying to help him and make his day-to-day as good as it can possibly be. He cannot be compared to anyone else - he is his own boy and as Kim the OT says "Noah will show us what Noah can do."
I know there are many of you reading who have had tremendously difficult journeys in life - either yourself or with a loved one. That sense of understanding has been of such support and encouragement to us. Just walking with us, listening and offering help where you can. We are so grateful.
Noah - you are such a cute, dear son. May you always be compassionate to the needs of others. May you know the comfort that God brings to daily living. May you sense the love your mom and dad have for you. Thank for you being our little peanut. We love you.
Blessings to all!
ps. pictures of the little guy are on our picasa album: