August 26, 2010 - Homeward Bound

Ready for the ride

Excited Mommy


Proud Parents

Home at last

Mommy's two little tikes

Hanging out with Daddy

After 21 very long days in the hospital, Graeme Scott Kennedy was discharged home with a very happy Mom and Dad! Here are a few photos of the event as we transitioned home. We are all well and adjusting to our new life together as a family. Mariana is not so sure what she thinks of the new addition, because up until today Graeme Scott was just a photograph on the mantle of the fireplace. Never did she think she would lose her role of "center of attention". This too shall pass.

It is my hope to continue update the blog weekly, now that we are home. We so appreciate all your prayers and support that have carried us through this difficult time and we are so thrilled by the progress of Graeme's healing.

August 25, 2010 - Transition Room

Today was another big day, as Graeme was moved from the NICU ward to a "Transition Room". This room is sort of like the Marriott Suites of the NICU. It is a nice, large, quiet room where both Graeme and Mom can be together before going home. We still have nursing care and Graeme is still hooked up to the heart monitor, but it at least gives us a space where Mommy can sleep in close proximity to Graeme and get used to providing his 24 hour care.



For the previous four nights Mommy had been staying in a NICU sleep room (sort of a glorified closet). This room was on the same floor as the NICU, but down the hallway, so the nurse would call me every time Graeme seemed hungry or needed consoled. Long story short, there was a lot of trips up and down the hallway for Mommy, so I am thrilled with our new arrangements.

Graeme also underwent a developmental screening today, which our strong boy passed with flying colors. He does exhibit some stress related tremor in his hands and legs when he becomes upset or overstimulated. The physical therapist said that this is very common in infants who have undergone major surgery in the first few days/weeks of life. It is expected that these tremors will lessen as Graeme transitions to the "safe" environment of home where there are fewer procedures, needle sticks, etc... Other than this, everyone we speak with seems to believe that there is no reason that Graeme should not go home and live a very normal, healthy and happy life. Praise God!!!

The plan is for us to go home tomorrow and we are thrilled!! We pray that Graeme will continue to eat well at home and show no further signs of reflux. We also pray that both Graeme and Mariana would transition to being at home together. It seems that since we have been in the hospital, Mariana has had a constant cold/"bug". We have been told that a common cold may hit Graeme much harder than the average newborn and quickly turn into bronchitis or pneumonia. We are praying that we will all be able to stay healthy in these first few months at home!

Thanks for all your continued prayers and support!

August 24, 2010 - First Bath

With all his lines and drains out and his incision healing, Graeme was allowed to have his first bath today. Amazingly, he loved the warm water and seemed to be all wide-eyed and smiles for the event. Nothing like his sister, who screamed at the top of her lungs as her "new parents" floundered to get her little wiggly body clean!

Graeme is eatting like a champ! He is now being exclusively breastfed, which is wonderful news!! His reflux has seemed to calm down slightly and isn't bothering him as much....but only time will tell whether this will become a longterm issue for him. He has gained another 1/2 ounce today and his little cheeks are starting to fill in. So far, he has not spit up or had any issues with aspiration....another huge praise. His lungs are clear after feedings, which is such a pleasant sound for Mommy to hear, given the memories she has from nursing him in the labor and delivery ward.

The plan is for us to go home on Thursday. Graeme has made a remarkable recovery and we have been blessed that he is in such good hands....Not only the hands of the doctors and nurses, but more importantly the precious hands of our Heavenly Father! This has truly been a faith growing experience for both Mom and Dad and we give HIM all the glory for healing our little one. We are so grateful for the prayers and support of friends and family!

August 23, 2010 - The Light at the End of the Tunnel

Graeme had an amazing day today. It started out with a visit from the pediatric surgeon who removed his J-P drain and the sutures from his surgery. Graeme's surgical incision begins under his right armpit and extends the whole way around to his spine. The surgeon says that Graeme has made a remarkable recovery! He also said that as long as Graeme continues to feed well, he should be able to go home this week.

Next was a visit from the neonatologist. He too was very impressed with Graeme who has been packing on the pounds since he started feeding. He now weighs 8 lbs 2 oz. They decided to cut back on Graeme's IV food (aka TPN) and by 4:00 pm, his TPN was totally gone and his PICC line had been removed. What an amazing sight it was to see our baby boy without any invasive lines!! The neonatologist also told us that we can go home this week...likely Thursday! This was surprising but outstanding news! Over the next few days Graeme and Mommy will focus on breastfeeding.

Mommy will stay at the hospital for the next few days and nights to begin to take on Graeme's total care. What a wonderful thing it will be for us all to be home! Mariana can't wait to finally meet her baby brother.

We so appreciate all of your prayers and support! Please continue to pray for Graeme that he would begin breastfeeding well and that our transition to home would go smoothly.

August 22, 2010 - All dressed up with no place to go

Our little sprout is making leaps and bounds in the feeding department. He started the morning by taking twice as much per feeding as yesterday. By late afternoon he was feeding so well that the neonatalogist cleared him to begin breastfeeding. The doctors have cut back his supplemental IV feedings in hopes that it will boost his appetite, but as of right now he has already regained his birth weight. In fact, tonight he weighed in at 8 lbs. 2 ounces. All of his doctors are amazed at his rapid progress. He looks like an entirely different child - with full cheeks AND yes.... the "Morgan double chin"!

Graeme is still experiencing a great deal of reflux with each feeding, however, it does not seem to be bothering him nearly as much as it was yesterday.

Another big step today, was that Graeme has so few IV lines that he now can wear regular clothes. Sweet little boy was all dressed up with no place to go!!

The doctors seem to think that if Graeme continues to make such good progress, he may be able to go home next week. We are truly amazed and so grateful for this good news and wonderful progress. Thanks for your continued prayers!

August 21, 2010 - What A Difference A Day Makes

Yesterday we were so happy when the doctor was able to reinsert the NG tube as we were worried about reflux and esophageal erosion. Believe it or not, this morning the surgeon visited and was so happy with the lack of secretions from the NG tube that he ordered the removal of the tube altogether!!

He told us there was no reason that Graeme could not start feeding today, so we were given a feeding bottle and 15cc of Pedialyte and Graeme had his first proper drink. What a wonderful sight. Even better was the fact that he did not spit any of it back up.

As the day progressed, he drank 15cc of milk for mom and then another 15cc for dad a couple of hours later. He may have had a little too much too quickly, because he appeared to be having a tummy ache as we were about to leave the hospital - I guess this can happen on your first ever day of eating!

Another great step forward is that Graeme has been moved to a crib rather than an incubator.

It is wonderful to go through another day and see more tubes and leads taken off our son. It takes us another step closer to bringing him home.

"Taking a snooze after my first bottle"

"Feed me"

"Taking a bottle for Daddy"

"Resting in my new Big Boy Bed"

August 20, 2010 - Answered Prayers!!

At 9:00am this morning Alan and I met with the neonatologist to discuss Graeme's NG tube (or the lack there of). The doctor was very concerned, as we were, that there was a possiblity that Graeme's reflux could be causing some esophageal erosion now that the NG tube was removed. After consulting the pediatric surgeon the decision was made to attempt to reinsert the NG-tube at Graeme's bedside. Unfortunately despite the physician's cautious effort, he was not able to to re-insert the tube.

At this point, the physician and surgeon decided to send Graeme for a floroscopic study to re-check the integrity of the esophageal repair, to reinsert the NG tube via floroscopic guide wire and to check his small intestine for a bowel obstruction versus an intestinal mal-rotation. The thought was that either of these would explain why Graeme has had such profuse drainage from his NG tube. Unfortunately, either of these two diagnoses would potentially mean further surgery for our poor little baby boy! Just the idea of this was devastating for both Mom and Dad to think about. With this news Alan sent out an email with and urgent prayer request late this morning.

Well, praise God for answered prayers! Alan was able to finish work early and go with Graeme for his floroscopic study. During the study they found that Graeme's esophageal repair has completely healed and is no longer leaking. They also found that Graeme doe NOT have an intestinal mal-rotation or bowel obstruction. Finally, they were able to reinsert the NG tube without any difficulty....all answered prayers!!

Needless to say, Graeme's day was very busy and he slept like a rock from late afternoon into the evening.

We should find out tomorrow when we will be able to start feeding Graeme!! Please pray that his feeding will go well and that his ileus would heal and allow his bowels to function properly. Finally, pray that his reflux would improve and not negatively affect his feeding.

We so appreciate all your support!

August 20, 2010 - 3:45am - NO more tubes!!

In the middle of the night, our feisty, little sprout was able to wear the tape off his NG tube. He then proceeded to sneeze 5 times in a row and that tube came right out. When Mommy found it, she was terribly upset, as the last we had heard, Graeme's esophagus was not healed and the reflux he has been experiencing could potentially erode away the healing repair site.

Graeme seemed very pleased with himself after the whole ordeal and he slept very soundly the rest of the night. Mommy on the other hand was a nervous wreck waiting to hear what the doctors would have to say come morning.

August 19, 2010 - Hungry Boy

Today we had another visit from the Pediatric Surgeon. He decided to remove the suction from Greame's NG tube as he was concerned that the suction may have been so strong that it was reversing Graeme's gastric motility. Since they removed the suction, Graeme has had much fewer secretions. However, since they removed the suction he has also had more congestion in his upper airway. We are concerned that he may be experiencing some reflux.

Mommy spent the majority of the day at the hospital and will spend the night as well in an effort to console Graeme without pain medication. He is very easily consoled and does not appear to be in pain. He just seems to get fussy whenever he is hungry or wants to be held. Two very natural desires for a baby his age. Graeme is also starting to show all the signs of a hungry baby. The TPN just isn't cutting it for him anymore and we feel this must be a sign he is getting better. We are really hoping that come Monday we will get the news that we can start feeding him.

August 18, 2010 - Kangaroo Care

Kangaroo with Daddy

"Check out these hands!"

A sleepy smile




Naptime for Mommy and Graeme

As of 5:00pm this evening, Graeme has gone 36 hours without pain medicine and appears quite comfortable and easily consoled. We have struggled with convincing the nursing staff not to medicate Graeme every time he cries. This is a critical issue given the fact that Graeme's doctor believes he has developed an ileus. He believes this may be the cause of the large amount of secretions they are still draining from Graeme's NG tube. The cause of this ileus was likely the large amount of sedation Graeme was on post-surgery and the additional pain medication he was requiring in the week post-surgery.

Today, both Mommy and Daddy were able to spend some wonderful, quality time holding Graeme. Given the fact that he is a full-term baby who has been forced to spend the first several weeks of his life in the sterile environment of a NICU bassinet, he very appropriately just longs to be held, swaddled, snuggled and cuddled. His face even lights up when we just sit with him and talk to him. Graeme's favorite part of the day seem to be "Kangaroo Care'. This is technique used with babies in the hospital where you hold them close to your body with your skin in contact with their skin. It is a wonderful way for babies like Graeme to bond and feel comforted.


Mommy is very grateful that Graeme's nurses have been much more willing to let her hold Graeme for the entire length of her visits. This is much improved over the status last week when we could not hold him at all.


We are praying and ask for your prayers that the secretions from Graeme's NG tube would stop and his ileus would heal. We are also praying that the flouroscopy study next Monday will allow Graeme to start feeding and that once he begins feeding he will take the milk easily and without complications, such as reflux.

August 17, 2010 - Mommy's Arms

Graeme had a good day today. Mommy was able to spend the majority of the day with him and he did not require any pain medicine. He seemed really content all day and loved being held. He was awake and alert during portions of the day and was very intrigued by all that was going on around him. Mommy really enjoyed this time with Graeme also, as when he was sleeping in her arms, she was able to catch a brief nap as well.



We had a visit from the pediatric surgeon and he will plan to test Graeme's esophagus again next Monday. He seemed hopeful that the esophagus would heal on it's own within the week. We are really praying that this will be the case, as Graeme is developing all the signs of a very hungry baby. They are continuing to feed him via the IV, but he has made it known that he would much rather have "Mommy's Milk"....poor guy!!

We appreciate your continued thoughts and prayers!!

August 16, 2010 - Minor Setback

Today Graeme had his swallow study in which he was given a small amount of dye while they took pictures of his esophagus. Although Graeme was very eager to swallow the dye (or anything they would have given him), they unfortunately found a small leak in his esophagus. This will not require surgery, but rather several more days of healing. They will do a second swallow test toward the end of the week.

They also took an x-ray today to be sure Graeme's NG tube was placed correctly. It is indeed in the right place which is good news, however, it continues to drain quite a bit of fluid, which is concerning to the doctors. They will have to do more tests to determine where this excess drainage is coming from.

On a positive note, Graeme was very calm and comfortable today. He required much less pain medicine and slept in Mommy's arms for nearly 3 hours! They say rest is the best "healer". Although the doctors are feeding Graeme through an IV, he definitely is showing signs that he is eager to begin regular feeding. We are hopeful that by the end of the week he will pass his swallow test and have his NG tube removed to allow for his first real meal.

We continue to appreciate all your emails, phone calls, prayers and support!

August 15, 2010 - Tummy Time

"Our Little Snugglebug"

Graeme continues to show good progress off the ventilator. His oxygen saturation has remained high and he is breathing well on his own...even when he is sound asleep. Now that he is off the sedation, he seems to be having a bit more pain for which his nurses are having to give him occasional pain medicine. We have also tried other methods to help keep him comfortable. His favorite trick so far is sleeping on his tummy!! He seems to settle down immediately in this position.

Tomorrow Graeme will undergo a fluoroscopic evaluation where they will run dye down his esophagus to make sure the repair is not leaking. If the test comes back normal, the doctors will plan to remove his nasogastric tube and Graeme can start feeding!!

The doctors are a bit concerned that Graeme's nasogastric tube continues to drain so much fluid. Please join us in praying that not only will Graeme's esophagus have healed well, but also that no further complications are causing his NG tube to drain excess fluid.

Finally, Mommy and Gran had a really sweet visit with Graeme this morning. He was bright eyed and loved hearing both Mommy and Gran's voices. Mommy was able to hold Graeme for "kangaroo care" which allowed for some really sweet bonding!

We so appreciate your continued prayers!!

August 14, 2010 - Open Eyes and Smiles

After the whirlwind of yesterday, today was a more sedate affair.
Graeme was taken off the ventilator early this morning and was taken off all sedation by noon - what a joy and blessing.

Bryn got to spend two hours holding him this morning and at various times, his eyes were wide open taking in all around him.

This afternoon I got to sit with him and hold him for three hours and again he had big wide eyes during our visit. He also appeared to smile on occasion.... but this may just have been gas!!

Mariana is also very pleased with his progress. With her limited understanding, she looks at a photo of Graeme and says that he is in the hospital to get some sleep and some medicine. Speaking of Mariana, her rash is much better today - Praise God.

Please comtinue to hold Graeme in your prayers. Pray that he will continue to tolerate being off the ventilator, and that he will not require much additional meds for pain (they have said he will probably need some).

August 13, 2010 - The Joy of Holding a Child

Today was a whirl-wind of a day. I had full intention of getting to the hospital first thing this morning, as I knew the doctors would be weaning Graeme off the ventilator. However, Big Sister, Mariana, awoke this morning with a rash all over her body. Ughhhhh....just what Mommy needed after the week we've had. Therefore instead of heading off the hospital, we headed off the the doctor's office for Big Sister. Thankfully, the doctor assured me that I cannot carry the rash, therefore, I cannot give the rash to Graeme!! Praise God for that!!

Graeme had a great night. The nurse weaned him down on his ventilator settings and they were thrilled with his progress. However, by lunchtime, they were forced to increase his settings again, because he fell into a deep sleep and was not keeping up with his independent respirations. Apparently this is very common for infants being weaned off sedation. He seemed extremely comfortable, so the doctor was able to decrease his sedation medicine. The hope is that the doctor will wake Graeme up a bit and this will allow him to breathe better on his own.

Another great step of progress today was that Mommy got to hold Graeme for the first time all week. There is nothing like the joy of holding your own child! While I held him, he was wide awake and very content. Since the doctors are allowing us to wake him up more we were also allowed to talk to him. I must say I was able to savor every moment of this quality time with Graeme. He is such a sweet boy!

Our hope is that tomorrow Graeme will be able to do a trial off the ventilator. We are hopeful that he will be more awake , as his sedation wears off and more apt to breathe on his own.

Please continue to pray for a rapid and full recovery for Graeme.

August 12, 2010 - Happy Birthday Big Sister!

Today was a very special day for our little Mariana, as today was her 2nd Birthday! We really tried to make it a very fun day for her, since Mommy and Daddy have been so preoccupied with Graeme at the hospital. In the morning Mariana's little playgroup came over for a birthday party. Tonight we had pizza with Gran and Pop to celebrate. Mariana was thrilled with all the attention and had a really wonderful day!


Baby Graeme also had a really great day. He rested comfortably throughout the day and was able to to tolerate a reduction in his sedation. This was done in prepartion for weaning him off the ventilator. By early evening the nurse had turnned down his ventilator settings and he continued to breath well. What a blessing it was to hear that news!! The doctors expect him to be off the ventilator completely in another day or two.



Graeme is awake was able to tolerate Mommy and Daddy's touch today without causing him to be aggitated or startled. We were also able to speak directly to him today for the first time since Monday.



Our days are long and exhausting, as Alan is back to work, but still visiting Graeme and Mommy is commuting from her duties at home to her duties at the hospital. We all could use a good night sleep!!

Wednesday August 11, 2010 - Enjoying some Peace and Quiet

Today was a rather quiet and calm day. The nurses have been diligent about keeping Graeme positioned on his side snuggled up with little blanket rolls to simulate the comfort of being in the womb. They have stopped the muscle relaxant and Graeme remains calm and comfortable. Mommy had a wonderful visit and was able to talk to him quietly and place her hand on his head and chest without causing aggitation. Graeme opened his eyes several times briefly as Mommy spoke to him and he then drifted back to sleep.

We were given the good news that they were able to take Graeme off antibiotics today. He is mildly jaundiced, however, they do not feel they will need to treat this in the short term.

We pray that the next few days will remain quiet and that Graeme will be able to continue to sleep well and rest comfortably in order to allow his body to heal.

We want to truly thank so many of you for your calls, emails, notes of encouragment, and offers of generous support. We love you all and can't wait for you to meet our little Graeme!

Tuesday August 10, 2010 - Feisty Little Graeme

At one day post surgery, Graeme seems to be recovering well and we are so thankful!!

Despite heavy sedation, he had a bit of a feisty morning. He would startle frequently, move both his arms and his legs and at times arch his back. Although he does not appear to be in any pain, the doctors are concerned that this amount of movement may disrupt his surgical repair. With this in mind they decided to change his postion (putting him on his side) and give him a muscle relaxant.

By mid-afternoon, he was much calmer and resting comfortably. He was so comfortable that the nurses allowed Daddy to touch him and talk to him in a quiet voice.

Mommy and Daddy have been taking turns rotating from home to the hospital. Big Sister, Mariana, cannot wait to meet her baby brother. We are very blessed to have my parents in town to help out with Mariana at home.

Born a Fighter - Graeme Scott Kennedy

On August 9, 2010 Graeme had surgery to fix the TE Fistula. The sugery lasted about 1 1/2 hours and the doctors said that it went extremely well. For the next 7 days Graeme will stay on the ventilator and heavily sedated to allow his body to heal. During this time, the doctors have given us strict orders to limit the stimulation to Graeme. Therefore, Mommy and Daddy are allowed to visit, but we cannot touch Graeme or even talk to him. We are praying that Graeme will tolerate the sedation well and that his body will heal thoroughly and quickly. We are also praying that there will be no complications that arise from the surgical repair. Next Monday he will undergo a test to make sure his repaired esophagus will not leak. If all goes well, Graeme will be able to start feeding soon after that.

Welcome to the world Graeme Scott Kennedy

Congrats from Dr. Fagan

Some Daddy time

Our Little Tarheel

A visit from Gran and Pop

This is probably the first post without any pictures, but we wanted to give any of you following the blog an update.

Graeme Scott Kennedy was born on Friday Aug 6th at 6.09pm. He weighed 7lbs 15oz and measured 21 inches.

However, as the evening went on, his breathing became much worse and he is now in the NICU. Hs has a tracheo-esophogeal fistula and will have surgery to corrrect it on Monday (Aug 9). The staff have told us that he will have to remain in the NICU for at least three weeks post-surgery.

I'll follow up with further posts and photos soon.