Monday, February 28, 2011

Birthday boy!

Timmy had his five month birthday today. (Well, Timmy's daddy says that Timmy will not have a five month birthday because there is no 29 in February, but Timmy's mommy overruled him and said that Timmy is five months old now.) Timmy's mommy and daddy and I have learned that when we spend so much time in the NICU, it is important to celebrate milestones like monthly birthdays. And it helps to look back and see how far we've come.

Timmy's 0 month birthday:

Timmy's 1 month birthday (right after his first big airway surgery):

2 months old! (I forgot to remind Timmy's mommy and daddy to get birthday stuff, so we did not have a party that month.)

3 months! (Right after Timmy's second big airway surgery.)

4 months (so nice to be celebrating at a time when Timmy was not recovering from major surgery!)

5 months old today! (Timmy celebrated by wearing pants for the first time. Pants are not always practical when you have too many leads and wires everywhere.)

Timmy is now five months old. Since he was born almost two months early, that means he should be doing the things that three month old babies do. He is a bit over 10 pounds and is 22 or 23 inches long. This month he has gotten very good at head control, and he can sit up with very little support. (He is still not allowed to do tummy time, which is important for lots of upcoming milestones.) He can roll from side to back, and he is learning to roll from back to side. He loves playing with things that make noise. One of his favorite games is holding a rattle in each hand and whacking at stuff over his head. His other new favorite game is playing the piano with his feet. He is also learning about gravity--he likes to hold a rattle in his hand, and then intentionally open his hand and watch it fall. He may not be allowed to do any eating (not even tastes) but he loves to put things in his mouth--his fist, gauze, rattles, the edges of his mist collar, the elastic part of his mist collar, my antlers, etc. He also has started to slobber more, and Timmy's mommy and daddy wonder sometimes if he is at the beginning stages of teething. He is a very social little guy--he likes to sit in the doorway of his room and talk to people as they walk by. He is full of smiles and (silent) laughs in the mornings (unlike his mommy he seems to be a morning person!) but is usually pretty tuckered out by later in the day, because he does not always take good naps (he has too much fun looking around and sometimes it is too noisy for him to sleep well).

There is no word yet on when we get to go home. A few weeks ago we had a 100% chance of being home by the end of February. Now Timmy's mommy and daddy say we may be in the hospital until April. Timmy has been back on TPN (IV nutrition) for several weeks because of the hole in his belly. When (if?) the hole heals, he will get to start to eat through his G-tube again. If the hole does not heal, he will have to have a big surgery. We are hoping that does not happen.

This poor moose is all tuckered out. It is very exhausting organizing birthday parties! So I will tell you all good night now so that I can polish my antlers, pick the lint out of my hooves, and go to bed.

Sunday, February 20, 2011

NICU: home away from home away from home...

The name of the game right now is that Timmy needs to get up to full feeds before we can take him home. 16 days ago his J-tube was pulled and we were told that the hole that remained would have a good chance of closing up on its own in 2 days; then it would be a few more days to get him on full feeds and then we would be able to take him home. Now his J-tube hole is still leaking bile here and there (this afternoon it suddenly leaked a lot, so much so that it pooled in his belly button and ran down his diaper--making him soundlessly scream in hysterics) and now the hole looks bigger than it did this morning. I know we should be thankful and all that we are coming to the end of this hospital journey, but it's not; it's not ending. His J-tube hole isn't healing, it's getting worse and the alternative to just waiting it out and hoping that it heals is yet another major abdominal surgery. We can't keep living this way. I can't keep going to work for 5 days a week 120 miles away from my family. And Michelle can't keep living as a prisoner all week between the Ronald McDonald house and Timmy's NICU room only getting to go on BabiesRUs dates with her husband on the weekends all the while keeping track of the whole medical history of her son while finishing her dissertation.

Anyway, this is supposed to be from Mortimer who is just too flustered to write anything right now. I've asked him what exactly made Timmy gush so much bile today but he's still too speechless to tell us. He did mention a few days ago that he is worried (as we are) that Timmy hasn't been able to have any tummy time because of this J-tube hole issue and most of the next major developmental milestones are dependent on having tummy time every day.

Meanwhile, when Timmy's stomach isn't being eroded away by stomach acid, he is just as happy and curious as ever. He's learning to reach for things and likes me to read him stories. He loves to sit in his bumbo and watch people walk by his room. He's discovering how good things taste, especially his fingers (we think he might be starting to teethe already). And he loves to be held and rocked to sleep. We love you Timmy and we hope that someday your life will be easy.

Thursday, February 10, 2011


Timothy had another rough day today. There’s still a hole where his J-tube was pulled, and from time to time, acid leaks out and burns his skin. It was one of those days where he was either awake and crying or asleep (and for most of the day the only way he would sleep was sprawled across my lap, stretched out so that there was no pressure on his little belly). And as I held him, I couldn’t help but think about how so much has changed over the last few months. And suddenly the things that seemed so little (so minor, in fact, that I never even thought about them) have now become the most important things in my life. and I found myself dreaming about someday. There are a lot of somedays in our lives right now…some of them will (hopefully«É) happen soon, some of them may not happen for a long time, some of them may never happen. But so much of what I used to think was important has fallen by the wayside, and it’s the somedays that I now find myself dreaming about.

--Someday Mark, Timmy, and I will be alone with no one else in the room, with no one watching, with no one calling to see if we’re all right when Timmy’s pulse ox alarms for just a little too long.

--Someday the three of us will sit together. I never knew how special that was—sitting together with your family. But we’ve never done it, at least not without either Mark or I perched on the edge of an armchair. And someday we’ll sit together…all three of us.

--Someday mine (or Mark’s) face will be the first my baby will see in the morning and the last he’ll see at night.

--Someday I’ll be there when my baby wakes up crying in the middle of the night, and I’ll be the one to rock him back to sleep.

--Someday I’ll be able to walk into my baby’s room in the middle of the night just to watch him sleep. I won’t have to call a stranger and give them a medical ID number just to find out how he’s doing.

--Someday, when I’m having a rough day, I’ll be able to completely lose it and cry while I hold my baby without having to worry about complete strangers walking in and asking if I’m okay.

--There are some somedays I’ve had to give up. I know I’ll never breastfeed, and I’ve come to terms with that. But my dream is that someday my baby will be able to eat by mouth.

--Someday we’ll pull that tube because he won’t need it any longer, and someday I won’t have to safety pin his g-tube to his diaper to keep the G-tube from pulling.

--Someday I will hear my baby laugh. I’ll hear him cry. I’ll hear him talk.

--Someday I won’t have to sign in every time I want to check on my baby and I won’t have to show an ID bracelet to a security guard.

--Someday I won’t have to go through the pain of telling my dad and my sister that they can’t see my child, because only four people are allowed to be on our list.

--Someday having people come to visit my son won’t mean that I have to leave the room, because someday more than two people at a time will be allowed to see him.

--Someday I’ll be like a normal mom—I’ll worry about whether or not a particular lotion or body wash is causing a rash, and I won’t have to worry about how best to keep the acid from burning his skin.

--Someday I won’t have to see my husband’s pain as he’s forced to say good-bye yet again to his wife and child and drive back to Columbus for another long five days.

--Someday I won’t sign consent forms for anesthesia with as much nonchalance as signing a permission slip for a field trip, because someday anesthesia will no longer be a routine procedure.

--Someday I’ll be able to eat in the same room with my son. Grabbing a bite to eat won’t require finding someone else to watch him while I sign out, go down three floors, walk down a long hallway, and walk a block and a half, just to fix myself a sandwich.

--Someday I will walk out of that hospital with my family. I’ll push a stroller loaded up with an emergency trach bag, a suction bag, a feeding pump, a pulse oximeter, and all the various and sundry things that we’ll be taking home with us. And I won’t care that I’m one of those moms that I said I would never be who has to load up the entire trunk just to go to the grocery store.


And yet, in the midst of all my dreams about someday, there are so many little dreams that come true every day.

--Today I watched my son breathe entirely on his own, and I thought about how a month ago his pulmonologist told us he would definitely be going home on a ventilator. A week later, Timmy proved his doctors wrong.

--A few weeks ago I saw my son take his very first taste of milk. A few days after that I watched him suck down 15ml out of a bottle. If that isn’t miraculous, nothing is.

--Today I watched a group of 15 or 20 people stand outside my son’s hospital room during rounds and discuss what the best course of action for the day was. The number of people who invest in caring for my son every single day absolutely astounds me.

--Today after a long day of crying and restless sleep, I left my son sleeping peacefully. And as hard as it always is to tear myself away, I leave knowing that he’s in good hands.

--Today I held my son for hours, and while I held him I thought about all those days when he was too fragile to be held. I remembered the day I “held” him for the first time after one of his surgeries—they gently set him and his egg crate mattress on my lap.

--Today I listened to my son cry. When he first got the trach, I was scared that I would never know if he was upset unless I was looking right at him. But he can make a raspy sound when he cries, and I can tell from the change in his breathing when he starts to fuss. I can see him smile, and I can see him laugh. He has the most expressive pout in the world. He doesn’t need air moving through his vocal cords to communicate.

--Yesterday when someone came to do therapy with my son, he wouldn’t stop crying and reaching out for me. When I held him, he smiled. And I knew that even though I haven’t been able to be there for him in the way that normal moms are, he knows me. Even though we never shared those special moments with him eating and looking into my eyes (I should never have read a LaLeche League book while I was in the hospital recovering from my c-section), he knows me. And that’s a pretty special thing.

Today my son lives. He breathes. He cries and he laughs. He loves to sit up and he hates cold, wet Q-tips. He may not be eating right now, but he will soon. And somehow, in the face of everything, nothing else matters.

Monday, February 7, 2011

Nasty encounters with fluids

Timmy has had a rough week. And it has been a busy one, which is why this moose has not yet taken the time to let you all know what has been going on.

Monday started out as an exciting day. They took Timmy downstairs to a special room with a video x-ray machine. They put him in a really uncomfortable position under the machine, filled a bottle with some icky barium, and gave him his first bottle. (Barium is a special kind of dye that shows up under an x-ray machine.) Well, Timmy was so happy to finally be allowed to drink as much as he wanted from a bottle, that he just gulped down 25 ml. Bad idea. What goes down must come up, right? He puked it all over the fancy x-ray machine. The good news is that Timmy was interested in eating and that the video x-ray showed that Timmy knew how to swallow well. The bad news is that after Timmy puked, some of the barium ended up in his lungs. The even worse news is that the x-ray machine forgot to write the video to a DVD, so nobody could review the actual video of him swallowing. So we do not really know when the barium went into Timmy’s lungs, but we think it happened when he threw up. So all that means is that Timmy is not allowed to drink as much as he wants. Instead he gets to drink one bottle of 15ml of milk once every day. And he is supposed to practice learning to pace himself. Because gobbling up all the milk at once is a really bad idea. He has been doing a very good job, but once in awhile a little bit of milk goes into his lungs, which is not good, so it will probably be a long time before the doctors let Timmy drink as much as he wants.

One of the nice nurse ladies has been telling me about something called reflux. Lots of babies reflux, and usually it is not a big deal. But the problem with Timmy is that because of his big surgery, stomach acid could cause problems with his surgery site. Plus, if Timmy aspirates (meaning milk goes into his lungs) when he refluxes, that could cause pneumonia. So that means we have to try to keep Timmy from refluxing very much. (Timmy is also taking special medicine to make his stomach acid less acidic.) If Timmy starts refluxing a lot, he will need a big surgery called a Nissen fundoplication where they will wrap part of Timmy’s stomach around itself so that he cannot reflux.We are hoping that that does not happen!

The doctors have been trying to increase the rate of Timmy’s milk going through his feeding tube. For awhile he was getting 22ml/hr all the time. Then he started getting 33ml/hr for two hours, with one hour getting no food. (That was when Timmy started learning what hunger was—he does not like to be hungry!) After that he got 66ml/hr for one hour, and then no food for two hours. But when the doctors changed his food to 66ml in half an hour, Timmy started throwing up a lot. We decided that his little belly is too small to fit that much food in at one time. So now Timmy eats 66ml of milk over one hour. He is much happier like that. But eventually we want to increase it so that he can take his food all at once so that he eats more like a normal baby (even if he eats through his stomach).

Timmy had another really nasty encounter with fluids. If you remember, Timmy had a G-tube going into his stomach and a J-tube going into his intestines. The doctors told Timmy’s mommy and daddy that Timmy could not go home while he still had the J-tube. So on Thursday the big day came to pull out the J-tube. We were all very excited. One of the big important doctors came to Timmy’s bed and reached down and pulled out his tube! (It was very weird to see him do this, because until now I have been trying very hard to keep from getting my moose antlers caught on his tube, because I did not want to accidentally pull it out.) The bad thing that happened when the doctor pulled out the tube is that stomach acid started gushing out the hole. And it burned Timmy’s belly and made him cry harder than any of us have ever seen him cry. (Even though Timmy cannot make noise like most babies, he can still cry!) So the doctors decided that Timmy cannot eat until the hole heals. (He will get all of his food through an IV.) Thursday, Friday, and Saturday were very hard days for Timmy’s mommy and daddy and me. We did not like to see Timmy cry so much. The nice nurse lady gave Timmy morphine to help make him feel better, and Timmy’s mommy dipped his pacifier into some sugar water to get him through the times when he could not have morphine. Finally on Sunday Timmy started to feel better again.

He even sat up in his special chair to play his piano and cheer on the Steelers!

In other news, Timmy went through a big growth spurt this week and now he is huge! He is very long and weighs 9lbs!

Thursday, February 3, 2011

Mortimer takes a trip

Mortimer here reporting from the much-anticipated Ronald McDonald House in sunny Cincinnati Ohio. Come along with me and we will discover together why Timmy's Mom and Dad are so very thankful for Mr. McDonald's generous hospitality!

Here is the entrance.

To get in the door I had to swipe a card in the little slot in the door.

Here is where Timmy's mom and dad get mail:

I was super excited to step into this super cool living room.

Timmy's mom and dad spend quite a bit of time in one of the 5
kitchenettes in the kitchen. Every night dinner is served by a charity group and most breakfasts and some lunches. Most of the time these groups leave leftovers to put in one of the three refrigerators to the left of this picture so when Timmy's mom stays at the hospital too late to make it to dinner, she has something to eat when she does get back.

And this is the play room for the brothers and sisters of the kids in the hospital to play in.

And here is the exercise room, the game closet, and one of the laundry rooms:

This is a really cool spiral staircase on the side of the building on the second floor and here is the view of the street from the top of that staircase.

And here is Timmy's parent's bedroom.

And finally below is the puppet stage that precedes the entrance facing the hospital. Thanks Charles H. Dater!!!

I hope you have enjoyed taking a walk with me through the Ronald McDonald House. A bunch has happened to Timmy this week and I promise to post about it this weekend. Have a great Friday everybody!!!