Annie & Stewart Allen

Home is where the babies are...

and it is no longer the hospital!


Exit from the hospital was an order of magnitude less dramatic than entry for Annie and Stewart. Stewart arrived home Saturday April 29th just before lunch.



Annie's arrival home was delayed as she continued to experience some periods of Apnea and Bradycardia during feedings. She would have to wait to come home until they all went away.

Although he missed his sister, Stewart seized the opportunity to go ahead and "mark his territory". On his very first diaper change Stewart was able to precisely target the corner of the dining room, drenching Mom's fancy dining room curtains.


Mom and dad were thrilled at the spectacle, deltighted to see Stewart's plumbing working so vigorously.

Here is Stewart all cranked up before diaper peel and bath time in his nursery with a proud momma and papa.



Tuesday May 9th was Annie's day to come home. Here she is all primped up posing in front of the WakeMed ICN's aquarium on the way out the door...




With both of them home we have been working hard to establish some manageable routines as we all settle in with eachother. Aimee's parents, Les and BJ, are staying with us these first few weeks and are an enormous help as they provide support and a helping hand wherever needed.


Here some other peaks at our first week together:









Perfect, Sweet, Little babies!

As is standard for these type of situations mom and dad get little rest at night as we are awakened by hungry cries ready for a nighttime feed. Nevertheless, this "standardness" is something we embrace and revere considering everything Annie and Stewart have been through. One of their ICN nurses, Mary Jo, summed up the sentiment appropriately:

Carl: The rumor is they'll be going home soon. We've seen some extremely difficult situations develop with other babies as rather nasty complications arose, for no rhyme or reason. We've dodged some bullets.

Mary Jo: No. You've dodged cannonballs!


They did dodge cannonballs, but with help from some extremely special individuals who deserve to be canonized for the work they have chosen to do, all the staff who make the world go round at WakeMed's ICN. With technology, know-how, love, care, manners, and grace they saved our children's lives. As routine to them as they made it appear to us they saved them, and by our account approximately 40+ other children during our stay.

Current mainstream psycho-babble has popularized the notion of "defining moments", identifying them and choosing to define your life by them in a positive or negative way. The experience we've had certainly qualifies as one. We will not be leading our lives the same way after all this.

We mentioned in our first post at how supportive Annie and Stewart's care was, that they had a will and spark to live within them and just needed a properly positioned nudge and tug in the right spot at the right time to help them along their way.

Aimee and I got the same things from all of you over these past 3 months. A kind word here, a meal dropped off their, tons of gifts for Annie and Stewart, TV cameras with corporate sponsors at one of Aimee's baby showers. For cryin' out loud someone (we still don't know who yet ;-) anonymously cut our grass one week. Unbelievable.

Two things:

1. When Annie and Stewart were first born there were two primary focal points that defined success for them and the ICN team: working lungs and working guts (food in and food out). What joyful celebration ensued when we got the all clear at each successful stage as they worked through their issues. What is the point? Annie and Stewart taught us that if you're breathing and your tummy is working then rejoice, you are having an outstanding day. Everything else beyond this that is granted unto you is a miracle of abundance that you should reverently acknowledge as such.

2. If you are able to grasp the abundance you have in the fact that you even exist, the most beautiful expression of that realization is to go and do something for someone else. Serve someone, anyone, in anyway you can find, even if they don't appreciate it or know it was you lending a hand. We have experienced an outpouring of love, support, and affection that comes from people behaving this way. The most frightening, grueling, and stressful period of our lives was transformed into a season of hope, laughter, and restoration because people served us. Love is a verb. Find a subject for it. We have two new ones to focus on at home and are eager to teach them the lessons you taught us these past several months.

Thank you for the food.
Thank you for the gifts.
Thank you for the thoughts.
Thank you for the laughter.
Thank you for hoping, praying, and loving.

See you soon!

Love Annie, Stewart, Aimee, Carl, and Zorro

Little Chunksters ...

They are getting BIG, Stewart is 7 lbs 7 ounces, Annie is 7lbs 1 ounce. Over the past two weeks Annie and Stewart have been working hard to get the feeding game down and earned the right to have their feeding tubes removed. We might expect a little dip in their weight before they settle into realizing that all the food will be coming from the bottle.


The other big news item is that Stewart seems to be over the hump with his supplemental oxygen needs. He has gone for 5 days now without oxygen supplement. Annie's oxygen ween is in full gear as the stretches she can go without are increasing. She only needed her cannula for around 8 hours yesterday.


Without any major setbacks Annie and Stewart should be coming home within the next 2 to 3 weeks. We've heard a lot of "Are you guys ready to bring them home? Do you have everything ready?"






Thank you all again so much for checking in on us and thinking of us. Lots of love!

Aimee, Carl, Annie, and Stewart

Twice the love and pounds ...

March 17th Annie and Stewart moved to an open crib. What we are most proud of is that they have stayed there. The progress has been steady and measured; mostly by mom and babies doing their thing: feeding, eating, loving, and growing. Today Stewart weighs 5 lbs 6 ounces, Annie 5 lbs 3 ounces; that is twice their birthweight!


The criteria for getting Annie and Stewart home include removing their feeding tubes (they need to get all their calories from bottle and/or breast); and absent apnea & bradycardia episodes (they need to be able to keep their heart rate and oxygen levels up on their own). We are on our way in those departments.


Annie and Stewart are still on oxygen, but less oxygen than a week ago. Hopefully they will be completely off before they go home. They still have feeding tubes, but both of them are breast feeding and are gradually getting the hang of the game.


Stewart and Annie are 8 weeks old today (36 weeks gestational age). We are "ready" to get them home yet so thankful for all the love and care Annie and Stewart are getting in the I.C.N.. We are able (and encouraged) to engage in a majority of the largely routine care they receive now. Typical baby stuff: feedings, diaper changes, and cuddling. It's been a joy for all of us.


We are so thankful for this day, and thankful for how far Stewart and Annie have come. Thank you so much for praying for us, thinking of us, and being so generous with your love, gifts, and kindness.

Love,

Annie, Stewart, Aimiee, and Carl

As cute as can be at 33 and 3 ...

Three is a magic number!  We have thoroughly celebrated it the past several days.  Last night Stewart checked in at 3 pounds 9 ounces, Annie at 3 pounds 8 ounces.  Last week they tipped the scales past the very low birth weight mark of 1500 grams (3 pounds 5 ounces).  Look at this beautiful baby's great big fat leg!


Today Annie and Stewart are 33 weeks and 3 days gestational age.  It gets confusing...  Five weeks and 3 days since they were born; six more weeks before their due date (April 30th).  We will have to be aware of their "adjusted" ages as their development is assessed in the coming months and years.  Pediatricians (at least for the first 2 years) will classify their adjusted birth date as April 30th, 2006.


Another blessing is a positive report on their first eye screen.  They were at risk for Retinopathy of Prematurity but the initial exam revealed no incidence.  They will get another screen in 3 weeks.


In the coming weeks we look forward to putting on more weight and eventual bottle feeds.  Eventually, with more fat and more age, Annie and Stewart will transition out of isolettes and into regular cribs, or crib I should say as we will attempt to co-bed them in the beginning.

Thanks again for checking in and for all the prayers and support.

Love,

Annie, Stewart, Aimee, and Carl

"Weight" and see ...

We heard rumors it might happen and it was a wonderful surprise to come in Wednesday night and find Stewart and Annie conspicously absent from their usual spot in the ICN. As a reward for good behavior they were moved to the Level 2 ICN, a step down from Level 3. Level 3 is the most intense care where one nurse is assigned each baby. In Level 2 there is a 2 to 3 baby per nurse ratio. We celebrated the big move with a prime time victory cuddle.




Our routine is to kangaroo in the evenings (above). We can increase the frequency as they become more mature and there are fewer tubes and cords to manage. More than one move in and out of the isolette in a day is too stressful for Stewart and Annie right now.


Nevertheless, during the day there is plenty of opportunity to help Stewart and Annie out if they get agitated or too cranked up over things. Placing one's hands around premature infants provides a sense of boundary that is soothing and calming (a feeling they would more naturally experience in utero).

Otherwise we are delighted that Annie and Stewart are experiencing what we are told are rather typical "premie issues" at this point. Among those would be "A's & B's", or periods of Apnea and Bradycardia, a complication of prematurity. Annie has had more frequent episodes, but thankfully only a handful per day. As a result Annie is still on a hi-flow heated cannula while Stewart is on an oxygen only 'regular' cannula.


Perhaps the best news is that with the breathing issues currently stable we can now focus wholly on feed and grow issues for Annie and Stewart. Annie decided that she would catch up with her brother in that department earlier today as she had a diaper that might best be described as "full". We were elated as Annie had been struggling in that department over the past week.

As of midnight Annie's weight is 2 pounds 15 ounces. Stewart's is 2 pounds 13 ounces. They are gaining weight! The goal is 30 grams (1.05 ounces) per day. From what we are told the weight will pour on once they are able to breast and bottle feed. We can begin that when each of them develops a suck response, usually around 34 weeks (2 weeks from this Thursday).

Thank you all again for the thoughts, prayers, and support!

Love,

Annie, Stewart, Aimee, and Carl

Permission to be pleased ...

Tempered joy might best describe our past several days with Annie and Stewart. With recent developments I've asked several of the nurses and physicians if it would be irresponsible for us to get too elated over how Annie and Stewart are progressing. "Look back over the past 18 days and celebrate how far they have come. But mind that Stewart and Annie have a lot more to accomplish between now and when we send them home with you."

Our most indulgent development over the past few days has been the introduction of "kangaroo care". With the elimination of cumbersome ventilator connections and with Stewart and Annie becoming more stable it has become possible to connect more intimately. Aimee got to hold Stewart for the first time on Wednesday afternoon.


Dad was able to finally grab hold of him here Friday night.


All of Stewart's chest tubes are removed. The bonus development is that Stewart has been breathing room air for almost 72 hours now. We should not be surprised if he slides back and forth between some mix of hi-flow cannula, C.P.A.P., or room air in the coming weeks. But right now he is breathing free and clear!


That is a feeding tube taped to Stewart's mouth, Annie has one as well. They receive mother's milk every 2 to 3 hour as tolerated. Right now they are getting tiny amounts to wake up the bowels and stimulate the cilia which are still rather immature for their age. As they tolerate feedings the amounts will increase and they can begin to gain significant weight.


The I.C.N. staff is actively recruiting mom and dad to assist with various tasks as Annie and Stewart progress. Below Dad changes Annie's diaper. After she got all freshened up it was time to cuddle with mom.



Thanks again for all the thoughts and prayers. Leave us some comments in the comments section if you get a chance or email Aimee or Carl to say hi.

Much Much Love!

Aimee, Carl, Annie, and Stewart

We are overwhelmed with the outpouring of love, support, and good will you all have sent our way. Thank you for praying for us and thinking of us. Over the coming months and years we patiently wait for providence to reveal to us opportunities to repay you and others in kind. Thank you!

Here are a few pictures and a few words about our first 11 days with Annie and Stewart.

It will be some time before we are able to bring Annie and Stewart home, most likely around their due date (April 28th). Maybe sooner, maybe later, we are reminded often by the doctors and nurses that Annie and Stewart will be the ones to dictate the course of treatment and to indicate when they are ready to go home. We have a long road ahead; we can expect a lot of ups and downs.


A surprising first impression of the activities occurring in the I.C.N. is how intentionally supportive (rather than interventional?) the care is. We might be mincing words, but clearly an instinct within each of the babies to live and thrive is driving the process forward. The technology clears the roadway, patches a flat tire, and fills an empty tank with gas; but the babies do all the driving. The process is frightening and a little too dramatic at times but a blessing to witness.



The staff at the Wake Med I.C.N. is phenomenal! All of them: the nurses, residents, physicians, and respiratory therapists. Several of Annie and Stewart's nurses have been on staff at Wake for over 25 years. We could not be in better hands.

During his first few days Stewart developed pneumothorasies (collapsed lungs) along with a rather nasty bit of pulmonary interstitial emphysema. Several days on an oscillatory ventilator along with tubes in his chest allowed his lungs to heal and the extra alveolar air to drain from his chest. He has been on a cannula (oxygen tube in his nose) for almost 72 hours now. In the following picture Anna (the UNC resident on call in the I.C.N. tonight) removes Stewart's right chest tube. We are hopeful that we will remove the other chest tube tomorrow.



Last Friday Annie developed a touch of interstitial emphyzema in her right lung. Resting on the ventilator helped her resolve her issues and she is improving. Earlier today Annie was removed from her ventilator. Here she is on C.P.A.P. (continual positive airway pressure) a step down between the vent and an oxygen only cannula. She will start feedings as she continues to do well.