Last Thursday Aiden was re-admitted to the hospital for a couple of days hoping that the rigid bronchoscopy would show the cause for the continued vomiting, retching and gagging. Based on the opinion from the Ear-Nose-Throat (ENT) doctor who performed the procedure, he did not see anything that would account for the problem. The doctor did recommend that we consult with Children’s Boston for a second opinion, as he said they use different parameters and have different definitions of a what a laryngeal cleft is, etc., and they have had success with their treatment of similar problems. So, we have requested verification/second opinion from the Aero-Digestive Unit at Children’s Hospital in Boston and are waiting to hear back from them as to whether this is something that we need to pursue.
In the meantime, Aiden is back home but on an ND feeding tube (which bypasses his stomach and feeds directly into the small intestine with continuous low-volume, round-the-clock feeds). This does not fix the problem — he continues to retch and vomit stomach juices; however, it does help to reduce the volume and frequency of vomiting and the pulmonologist believes that his lungs need a rest from the constant aspiration. This is not a long-term solution, but he will remain on it for the next three weeks to help him grow and gain weight. Please keep him in your prayers. It can be a very long and painful process to have the ND tube put back into position if it comes out (it has to be placed in the hospital by Radiology), and Aiden has gotten quite dexterous at pulling out his tubes. Please pray also that he will not pull it out and that we will have wisdom as to how we should proceed.
Ethan and Evan are still “under the weather” and are still on antibiotics for ear infections, deep coughs and upper respiratory congestion, but seem to be slowly improving. This has lasted quite a while and is still a concern, as they both also have some degree of chronic lung disease. Please pray that they will get better very soon and that the congestion in their chest will continue to break up.
With Aiden back home, Manish wanted to share what a typical day is like from his perspective…
5:31AM – Evan turns on his mobile and it wakes us up on the baby monitor
6:05AM – Evan is now whining and in order to keep him from waking Ethan up, I run upstairs and bring him down. However, it is too late as Ethan is already awake (fortunately, he is talking to himself and very content).
As I am walking down the stairs, I feel something wet across my stomach. Evan is soaked completely through and needs to be changed! So, we start the changing process and his diaper feels like a wet sponge. Take off the one zee, take off the pants, take off the t-shirt and finally the diaper (it’s like peeling a gigantic onion). Evan decides to show off his skills and rolls over on the changing table and has to be forced back in place. It takes a few seconds but the diaper is finally in place. Wrong, it is backwards! So, I take it off and reverse it and then try to get the little sticky strap thingies in the right place so the diaper stays on.
Done with the diaper. Now, it is time to find him a new outfit. I start rummaging through the drawers next to the changing table. Of course, the one that is supposed to be Evan’s has Aiden’s clothes in it. Evan is now whining because he is practically buck naked and wants some clothes on. So, I start frantically throwing clothes around as I desperately search for a 9-month old (or bigger) piece of clothing. 3-month, 1-month, 6-month… where are all Evan’s clothes?! Thought tempted to try and cram him into one of these smaller outfits, I decide not to because it will make him look like a round little penguin. I just keep throwing these rejects over my shoulder until I finally find something that fits.
Once dressed, I walk through the newly created pile of clothes on the floor and take him into bed. With him in one arm, we walk into the closet and I find a new t-shirt for Daddy to wear per the “shower” I received. We finally lay down on the bed with him on my chest and I stick a pacifier in his mouth and hold his head down in hopes that he will go back to sleep. His head pops up…I put it down…it pops back up…I put it down. He starts to whine a little. Head pops up and I put it down again. Now he whines louder. All of a sudden, Aiden wakes up from Evan’s whining and starts crying. The obnoxious and very loud alarm on his feeding pump starts going off. Hannah, who has just finished pumping, comes out and tends to Aiden.
By now, Ethan realizes that Evan has been taken downstairs and demands equal rights. So, I get him and go through the same process with the diaper change. (But at least this time I know all the sizes of the clothes on the floor so it shouldn’t take too long to find something that fits.)
Time to feed everyone…
6:17AM – Put E & E down on their little playmats and distract them with one of their toys.
Time to prepare the bottles (sometimes we actually think ahead and prepare it the night before and this make things much easier). Take out the milk. Take out the formula. Wait an eternity for the water to finally get hot and start heating their food.
Ethan and Evan are both eager to eat but will have polite conversation with each other…for now.
Bottles still not warm, but at least the chill is off them.
Ethan and Evan start to make more noise…they are getting hungry.
Bottles still not warm enough…so, I dump the water they are warming in and replace it with more hot water.
Ethan and Evan starting to make hunger noises…
Bottles still not warm…Where is Hannah? She is dealing with crying Aiden, his noisy and empty feeding pump while trying to simultaneously transfer his oxygen tank.
Bottles finally warm…run over and position E & E on their boppies.
Whoops, forgot Ethan’s burp cloth. So, I run to the changing table to get it. Ethan is very angry because I left and he thinks I am not going to feed him. Evan starts to cry very loud. They are both starting to cry…
Finally get the burp cloth in place…boys still crying…bottles placed in mouths…INSTANT SILENCE. What a beautiful sound.
They have a crocodile tear or two running down their face but are chowing down on the milk. I have Evan’s bottle in my left hand and Ethan’s in my right. All of a sudden, I have to itch my nose…I try running it against my shoulder but even my nose is not that long. So, I bend down and rub it against Evan’s boppie.
Hannah comes out with Aiden and puts him in his little play swing. He watches me feed E&E and just smiles at me (he looks so happy). All of a sudden, he gives a little cough, which is a signal that he is about to vomit. I drop the twins bottles and put my hand near Aiden’s mouth…
Gag…wretch…gag…wretch…cough…here it comes…about 15ccs of formula, saliva and mucus while he turns purple and the rest runs out of his nose. Disgusting!
I am walking around the room looking for something to wipe my hand off with. (This is what parents do, we walk around with stuff from our kid’s mouths in our hands. That is why God gave us two hands, one for the kid’s junk and the other to actually get things done.)
E&E look at me and demand they be fed.
We start cleaning up Aiden and then start suctioning him…screams of pain and anger drown out E&E’s demands.
Finally done with Aiden; Hannah will clean up the rest of the mess and change him.
Now, I can finally feed the twins…they are crying and as soon as the bottles are in their mouths, instant silence…again…for now…
6:54AM – The twins are fed and playing …Aiden’s f
eeding pump has started…So, I sit down at the computer and log onto work and check/respond to emails, etc. All of a sudden, someone starts crying…
I walk back into the family room and Ethan has his hands all over Evan’s face. This causes Evan to scream while Ethan is curiously exploring Evan’s eye sockets with his little fingers.
I separate the two and they lurch their separate ways in search of things to play with.
7:23AM – finally sit down to have breakfast…boys start crying and I have to get up with my bowl of cereal and give them company. As long as they see that one of us is there, they are fine.
8:10AM – I finally have time to get ready to go to work. Ethan went back to sleep and Evan looks tired. Some additional help arrived in the form of Dana and we now have man to man coverage (which makes life so much easier).
8:33AM – time to go to work. It is a strange feeling going into work thinking you are actually “getting away” –> this is what my life has become!
11:20AM – call home to see how everything is going. The conversation goes something like this:
Ring, Ring, Ring…
Hannah: Hello (a baby screaming in the background)
Manish: Hi…how is everything going?
Hannah: O.K….hold on, Evanly Boo wants to say hi…say “hi” to daddy
Hannah: I have to go! Ethan is…
Back to work!
1:37PM – call again to see how everything is going. This time, at least 2 of them are sleeping and it is somewhat quiet. All is well…for now.
I continue my day and try to enjoy it…knowing that the bewitching hour is not far away. From 7pm – 8pm, they turn into little Gremlins. Yes, just like the movie! They only do it when no one else is there so there is no way for anyone else to actually experience this.
5:45PM – I walk in the door and before I can even say “hi,” I am handed a baby. I can only see the back of his head so I am not sure which one it is. It isn’t Aiden because there are no wires, cords, oxygen or feeding bag. So, unless we have another child which I am not aware of, it must be Ethan or Evan.
As I am holding this unknown child, another one starts trying to climb up the bouncy seat. So, I rush over to him and pull him down and put the other one next to him.
I walk away to get something to eat and look back wondering, “which one was I just holding?” Oh well, it really doesn’t matter so I go to the kitchen and eat 5 double-filled chocolate Oreo cookies and a cup of milk. (I will need the caffeine, sugar and protein for the next couple of hours.)
It takes me about 1 minute and 45 seconds to finish everything and then I run into the bedroom and change into my “rags.” I refer to them as “rags” because whatever I am wearing will be spit on, chewed on, vomited on, sneezed on, coughed on, grabbed, pulled, and possibly torn. So, by the end of the evening, they will probably become rags.
7:00PM – the “bewitching hour”. It does not always start exactly at 7PM but whenever it starts, it is very evident. The process goes something like this:
– Feed the boys solids…
– Aiden starts crying and whining and needs attending…
– We have to sing “How much is that Doggy in the Window” about 14 times to distract Ethan and Evan while they eat. This prevents them from crying while in their high chairs. Instead, they laugh and food starts running out of their mouth.
– They are done eating…and now we have to let them play but be careful so they don’t play too much and spit up their food.
7:55PM – Time to give them their bottles. They just won’t take it. So, I pick one and start trying to rock him to sleep. Usually, Evan is sleepy by now and will doze off after a few minutes of being held.
It is working…he is almost asleep and I slip the bottle into his mouth. In his semi-conscious state, he drinks and drinks until he has tanked up for the night. Now, I just need a few minutes to let his milk digest and let him fall into a deep sleep while I rock him. Oh no! Ethan starts crying and Hannah is trying to put Aiden to sleep in the other room.
I make the tough decision and let Ethan sob for a few minutes while I lay Evan in his crib…he is out for the night!
On to Ethan…tonight, he decides to be very difficult and not fall asleep. So, I take him upstairs into the guest room. This is what we call “isolation.” It is darker and quiet and there is not much to distract them. I put him on the bed and he does his little rolling around ritual and finally dozes off.
8:41PM – Ethan is out! I got him to take most of his bottle.
It’s over…well, at least this round is over. Now, we have to have dinner, take a shower, Hannah has to pump, I have photography work to finish and get some other errands done…
Everyday is not this difficult (or this easy) but you get an idea of what it is like. We laugh when people say “it’s not really that bad.” We get a kick out of people who have never had multiples or a preemie telling us what is or isn’t difficult or how we should or shouldn’t do things…these people obviously have NO clue what they are talking about.
The days are long…fortunately, the twins usually sleep through the night. Aiden will cry throughout the night whenever his pacifier falls out of his mouth, and will wake up around 3 or 4 AM and decide it is time to play.
This definitely is the most challenging thing we have ever done, but honestly, it is perhaps the most rewarding as well…