SO WHAT!

Happy Holidays to all! I know I am Jewish, the boys are Jewish, so please forgive the above pic, I am just a total sucker for a boy in a Santa hat. (Ask Matt!) and I haven't had time to upload Hanukkah pics yet. So from our little slice of interfaith Wonderland...

We have had an uneventful few weeks but somehow it still feels difficult to find time to blog. Sam starred as Matthias Maccabee in the JCC Hanukkah movie and we enjoyed watching him. I am going to purchase the DVD and try to put a link to it here. We had a wonderful first night of Hanukkah with family and I felt so blessed to have Aaron with us, really WITH us. He is so active, it is getting hard to keep up, and gets a little noisier every day.

Aaron was visited recently by Kia and Jess, the OT and speech therapist who again reiterated that he doesn't seem to them to have a "can't" problem with food, more like a "won't" problem. Is that due to old neurologic injury, reflux, old allergy problems or ongoing pain with feeds? No one knows, including me. Meanwhile, he had gained weight, but then lost again and continues to slip on the growth chart. So, we are going to see gastroenterology to rule out a physical problem there to make eating a problem and I am researching infant feeding centers, and basically just trying different calorie formulas and feeding techniques.

I recently had a revelation that I have been TRYING to follow. I was obsessing one day late at night about Aaron's feeding issues and what that might mean for his future, and the possibility of significant developmental delay and what that might mean for his future. Then he woke up and we were snuggling in the chair and he looked up at me and I felt such overwhelming love for this little person, and I thought SO WHAT! I love him so immensely, everything about him, and so I forced myself to think through all the scenarios I was worried about. And you know what, no matter what, it will be OK. We will figure it out. I wish that this would have come more naturally or sooner to me. I look at my friend Christina who is open to the idea of adopting a special needs child and I marvel at her heart and wonder what is wrong with me. I think some of it is a need to control everything, some of it is this guilt that I carry around, some of it is genuinely wanting the very best for Aaron, and the rest I'd probably need therapy to figure out. But in any case, it has been liberating to think- SO WHAT.

That said, I am still very worried about his eating. But I am trying to channel that worry into productive ways of helping him. I try to "relax" about his eating, but I still am the one who needs to feed him every 3-4 hours and it continues to be a challenge. Well, we will just take it one day at a time.

Oh, one more development. I am heading back to work on a more frequent basis this winter. I am pretty happy about it. I won't have my own patients back, but I will have a regular schedule one evening and one afternoon a week.

Best to everyone. Happy Holidays from me, Matt, my little Matthias Maccabee (Sam as the father of the Maccabees, planning strategy seems somehow appropriate) and our little underdog Aaron "Judah Maccabee" Jane, also seems appropriate, kicking some proverbial ass!

Snow bunnies

Well, it was snowy in Michigan this weekend. The boys suited up and went out sledding. I know at some point, I need to stop thinking this way, but every time the kids do something so "normal" together, I am just overwhelmed. Aaron was fussy until we made the sled GO, then of course, our little action hero was all smiles.

He is utterly fearless. Pam, his PT was here this week, and we were laughing about that. Now it is not enough to crawl through his baby tunnel, he wants to climb ON TOP of it. With Sam, we had a certain level of comfort because he is shallwesay the cautious type. We are in for a whole NEW world. I remember when our eldest niece would come over and climb on the BACK of the couch, and I'd think that it would never occur to Sam to do such a thing. Somehow I think all that and more might occur to Aaron! Anyway, Pam was not very worried about the hamstring tightness and very encouraging about his progress. He really seems to know her and perked up immensely for her visit.

Feedings continue to be a struggle. We tried a med to increase appetite, but it didn't work and made him drowsy. I have nothing more to say- there's really not much new. Pam is going to send the OT over to re-evaluate him.

Since I have stopped pumping, I have been spending more time with Aaron at the last feeding of the night. He dozes off, then wakes and eats a little more. I sing, he plays with my hair, we snuggle. It is all so typical, but it is something that was missing before in the rush to get to the pump, do the dishes, etc. I think we both actually ENJOY that bottle. I wish they all could be like that!

Sam out of nowwhere today remembered something about watching the Pistons with Aunt Andrea while I was in or at the hospital. And then, at prayers, he thanked G-d for helping Aaron crawl. I am sure there is more going on in his head about the last 9 months than we will ever know. We went to the science museum with our dear "Auntie" Chris this week, so maybe all the ambulance talk there brought it up.

Well, Aaron is clearly understanding "throw the ball" and "give kiss" and I think my mom is probably right as usual and he may know to look for mama and daddy. Today, I said let's find Sam and he headed right toward him.

Well, on a last note, I received the most amazing email from an old friend today via my new Facebook account. We had grown apart and had some "bad blood" in what now seems like ancient history. Well, she read the blog link and sent me a really really nice note about it---it was a very pleasant, very big surprise. I guess that's the gift of technology and sharing the story.

Time flies

Well, it has been a long time since my last blog. Sorry for the random photo twist, I can't figure out how to turn it. That's Sam and Aaron at the zoo, us with Andie in DC.

This month has been so crazy. Shortly after my last post, Matt's grandmother died. She had been ill with cancer but it still seemed to come suddenly. The "spitfire" older woman is such a cliche, but she really did have a lot of chutzpah. Ironic choice of words in speaking of such a devout Catholic! So, we packed Sam off to Bubbe and Saba's house, and packed Aaron up for his first roadtrip to pay our respects. He did very well on the road---so well that I regret not taking him sooner so she could have met him. I also wish he could meet his Gold great grandparents, but I don't think we are ready for that trip to Europe! Matt and I enjoyed the time together, despite the sad occassion, and the one-on-one time with Aaron.

Anyway, right after that, we went to visit Aunt Andrea in DC. A wonderful time was had by all- and again, Aaron proved to be a surprisingly good traveler. Sam, of course, LOVES hotels, planes, subways and all things having to do with travel. Not to mention his love for Andie and "Shawnie". He experienced room service with Bubbe and Saba on this trip---the kid will be accustomed to the finer things, he better earn some dough! My mom and sister and I went to see Tina Turner. She is an inspiration. She has beaten the odds with such class and verve. We bought the tickets shortly after seeing Tina on Oprah months ago. I remember the day so clearly- Aaron had a pretty good day, and we were dancing around to Proud Mary, and I was laughing, really laughing, and I couldn't believe I could laugh again. So, I will never forget seeing her with my mom and my sister.

Aaron continues to amaze. On Thanksgiving Day, he walked behind a push toy at least 10 steps. I think he wanted to keep up with his cousins. He is now clapping, when you say "YAY" and waving like crazy. His 5th tooth, a lateral incisor, is now in. He looks so cute with that big grin! We went to see the developmental specialist last week. It was mostly a good visit. She called him a miracle repeatedly. Doctors don't throw that word around. I should know :) She thinks his muscle tone is now normal in his arms but he still has tightness in his thighs. She noticed that he doesn't like to sit, probably it is not super comfortable for him. I disagreed at first, but after watching him, she has a good point. He often kneels or sits sideways. I think he has been so active, I have slacked off on stretching, but since that appt, we are stretching lots. This was the first time that he scored LOW rather than MODERATE risk on the test assessing neuromotor development! I was SO excited to get out of the MODERATE word. He was a little behind on speech, expressive more than receptive based on her questionnaire to us. I am trying not to read too much into that. She thinks at a year, we should switch from mostly PT to mostly speech therapy. There was also lots of weight/eating discussions, which I will spare everyone for now.

With how much Sam talks lately, maybe he just can't get a word in edgewise. I swear, one day I am going to write down all the Sam quotes for the day, and just type them in verbatim. He is so cute and funny and precious right now. We went on a "date" last night to dinner and to see Madagascar and we had the best time. Age 4 is flying by and I just want to stop the clock.

Here are some recent videos... Aaron pushing his cart with Sam's encouragement. They are playing "together." PLEASE turn down the volume, I am speaking in an especially annoying voice in the beginning. It is about 2 minutes long.

The wave

Well, I should document all the latest Aaron news. He now has 4 teeth! I decided a long time ago not to write in a baby book about him for now, so I am going to try to record that kind of stuff here. He is standing up against everything. He likes the dishwasher and the dryer especially. He also likes to pull up and stand "face to face" against anything that reflects, and give himself kisses. He is even starting to cruise a few steps here and there.

Pam, our WONDERFUL physical therapist came this week. She now comes about once a month. She was really pleased with his progress. We now have "big boy" exercises to do, working on climbing and cruising, stand up and sit down. I have to work on finding time between chasing him and feeding him to do his exercises. Of course, we WILL do them. Aaron will exercise, me hmmm...not so much.

Most exciting, as referenced in the title...Aaron is definitely waving hi. He has done it a little for a month but tonight he clearly and repeatedly waved to my mom and dad. Won't wave to mommy of course. That's OK, I'll take it. It was beautiful.

Gratitude

With thanks to my dearest friend, who wrote about me and the boys on this topic. We have had a good couple of days. On the advice of Aaron's doctor, I am trying to chill about his feeding for a few days. Because of that, I have specifically decided NOT to write down how much he takes (this feels funny because I have done that since the day he came home from the NICU, every day for 7 months) and also not to talk about his feeding amounts with anyone except for Matt. (Because Matt is trying to do more feedings, also doctor's orders, I think we have to talk about it). So, I will blog at the end of this little experiment and let you know how it goes.

Anyhow, so I have been trying to celebrate the wonderful things we are beginning to know about Aaron. To wit...

* He is fearless. He is so brave and persistent.

* His laugh is adorable.

* He is already starting to play "chase" with Sam. I so look forward to all the games they will play in the future.

* I love how he snuggles in the crook of my arm. Even in the middle of the night :)

* His beautiful new toothy grin

* His zeal for exploring everything

I could go on, little man, you are a delight and I am mostly grateful to be the mom of TWO wonderful boys.

More worrying...

Here is a photo from Aunt Andrea's visit, Aaron being a sweet little snugglebug with A senior! (she calls him little A, but I will refrain from calling her Big A! Love you sis!)

Well, I debated about what to write about the difficulities we have been having as of late. I have decided to record how we are doing and how I am feeling now, so that HOPEFULLY it can all seem so overblown and remote in the future. Like how I use to worry if Aaron would ever sit unassisted, etc.

Anyway, Aaron weighed in last Friday at 16 lbs 13 ounces, a 7 oz gain in 2 weeks. It put him at the 13th percentile for weight, 90th for height. All in all, it was a nice gain, compared him only gaining 1 oz in the prior month. I really think it was due to the Duocal caloric supplement recommended by the allergist. So, I was ready to exhale and stop worrying so much about his eating. He was taking around 28 ounces a day, plus some solids, not great, but some. Since THE DAY of his weigh in, he has basically stopped taking more than 3 ounces a feed. (Before this, he was routinely taking 4-6 ounces, albeit with a lot of encouragement) He has a tiny cold, so maybe that will go away and his eating will get better. However, a big part of me fears that he has just now decided to stop taking his bottle. I worry that I pushed him too hard and caused his dislike of the bottle. I just don't know what to do. The feeding specialist won't return my calls, but initially had encouraged me to be persistent with his bottles. I am getting so tired of trying to coerce/coax him to eat every 3-4 hours. The only slight bright spot is that he seems to take solids slightly better lately (maybe because he is starving!) He really seems to like this "yogurt" made from coconut milk. At this point, I would feed him pina coladas if he would just take them! Again, maybe I am just worrying for nothing and he will turn the bend and start eating enough to grow. I feel like he just HAS to. So Aaron, if you are reading this when you are 10, and you are now big and strong and chunky, have a good laugh at your worrywart Mommy, OK??? And have a special treat snack with my blessing...

Say what?

Well, Aaron had his repeat hearing test today. He had passed his test as a newborn, but because of his history, he had a 6 month follow up, which he did not pass. They thought it was likely more due to behavior. Today, we repeated that. He passed the part of the test that does not require cooperation (beyond not crying, which he couldn't do last time). That means that any hearing loss would be mild at most. The second part of the test required him to look toward tones of varying degrees of intensity. He did better, but still didn't pass. I think he was bored by the "reward" of a flashing stuffed animal they get for looking to the sound! Due to that, he will need a visit at one year old.

His eating is about the same, maybe slightly better. I think he is teething, because he has not slept more than a 3 hour stretch all week and I see 3 little nubs on top.

Funny Sam story.... he pushed me after I had the audacity to beat him at basketball tonight ( I usually let him win, but he was ripping on the girls team, and my feminist leanings kicked in!). He actually surprised me enough to knock me over and Matt really got after him. He had story hour taken away, which was very upsetting to him. However, after he calmed down, he changed his tune, saying that he needed a "break" from story anyway.Anything to end up in the right...can't imagine where that comes from :)

Feeling defeated

Aaron in the forbidden exersaucer, but just for a few minutes, out in the yard!
Sam still wears M despite the humiliation that is this season.

It has been a very hard week. Aaron's eating continues to be a struggle. I have had to start getting up in the middle of the night to pump again, but MAYBE it is helping and he is eating a tiny bit more of his bottle. However, he gets less interested in baby food everyday. I just don't see how he is going to grow like this. I keep waiting for the day that he turns the corner, but it is so frustrating. He seems to like to feed himself (though he is too young to really do it successfully) so maybe if we can just hang on a little longer...

I just don't have any more ideas left. I always felt I could get him to eat if I just tried hard enough, was enthusiastic enough, etc. Now, I am starting to think I just have to see what he does without all the prodding. But, it is so hard to watch him stop after 2 ounces. How can MY KID not like to eat?? We seem to have opposite problems, my weight goes up as his goes down.

We are weighing in again Friday. Fingers crossed.

Fabulous 4 year old

This is a recent letter excerpt from Sam's teacher...

I'm writing this note to let you know how helpful Sam has been at school lately. He is always a very good listener. He has been working very hard at cleanup time especially. He tries to keep the children motivated during this difficult time of day. He has shown tremendous leadership with the younger children and is setting a fantastic example of how to behave...
His problem solving skills are also developing. When there is a conflict, Sam is always calm and uses his words. He also shares a lot of ideas about how to solve other problems in the classroom. He always treats other children in teh room with respect. He is a very good boy who makes good choices. We really enjoy having him.

We are so proud. It has been a trying time for Sam with all the attention focused on Aaron lately and he seems to be handling it really well.

Here are two golf videos. The putt was awesome but his celebration is just too much. Listen to my dh in the background. Too cute.

Aaron Unleashed

Well, my nickname for Aaron in the NICU was Cinderella Man, a reference to the great Russell Crowe movie where he is a boxer during the Depression who wins against all odds. Apparently, the fighter analogy fits! And it has served him well...he fought for his life...he fights to beat the odds stacked against him...

And he fights his MOTHER!

So, I have always felt that parenting required you to be a sort of benevolent dictator. With Sam, that is mainly the case (though he is feeling his oats lately too!) However, there is clearly someone in charge of Aaron's life and that person is, drumroll please, Aaron.
He sleeps when and where he wants to (generally hardly ever and in my arms) he eats when and how he wants, you get the drift. Today I tried to feed him in the highchair, no go. His Sabba tried to feed him, no go (and this man could feed the anorexic Olson) Then, I put him in Sam's booster, and he ate a really great meal. He is so independent. And a TEMPER. We have put up cushions in the living room to box him in, which he hates!! Hates. He now can fling himself over the cushion, headfirst.

So, quite a kid. I hope he is doing all his rebelling now. On a more troublesome note, he is not gaining weight. I took him to the office and he has only gained an ounce since his 6 month check.
His growth chart is not pretty. So, I spoke to his allergist and he has to stay on the Neocate formula (thus, I am still pumping and going soy/dairy/nut/egg free) and he advised us on some ways to get more calories to him. The general consensus seems to be to encourage more solids. Fine with me, but as I said...I am not running the show. I am trying really hard not to obsess over it.

In my next blog....I am going to excerpt a wonderful letter we got about Sam- he is also a superstar!!!!!!

Signing off...a dreary UM fan

Pumping woes...continued

After some initial gains in Aaron's feeding after discontinuing egg, milk, and soy in my diet, we went ahead and started soy formula, mixed with breast milk. (Aaron's allergy testing for soy was mildly elevated on one test, normal on another). At first, all was well...but after about 10 days, we started seeing some return of his gagging, feeding refusal, etc. So, now I am back to pumping more because he won't take the non-milk, non-soy formula well and back to not eating soy. It's getting a little old. Warning: the next paragraph is blatantly LaLeche league material, pro breast feeding. If you are going to roll your eyes or laugh, do so privately! If you are sensitive about not nursing, skip.

So, what I wanted to say is...I really, really enjoyed nursing Sam. It's hard to explain to those who haven't breastfed and plenty of nursing moms never feel this way, but I did. And because day in and day out I talk to moms about the pros of breast feeding, it never occured to me that I wouldn't be able to. I miss almost everything about it. I miss the snuggles, the milky smile, that mom-baby pair and exclusivity of being the one and only one to provide the baby's preferred feeds. I miss the ease of always having food available. I miss knowing that I am doing the best for my kid. I miss sitting at the mall with the other nursing moms, kind of an exclusive club of sorts. I miss feeding sitting indian style at the park with the baby in my lap. I miss the guilty pleasure of having to stop whatever I was doing to feed the baby, laying side by side in my bed or on the couch. So I think part of the reason I have kept pumping is that in addition to believing strongly that breast milk is best for Aaron, he and I didn't get to have that experience, and the minute I stop pumping, that chapter of my life is over. And I hadn't been ready to say goodbye.

But, recently, I finally was ready. And now....I can't stop. So, I am blogging now waiting for my date with the pump at midnight. A poor substitute for Mr. Baby Right...que sera...

A sweet September

Tonight begins the Jewish new year and we have had a very good end to 5769, a year that started well (this was just about the time last year we had our ultrasound and found out we were having a baby boy), got very rocky, and seems to be ending on a high note. I am very grateful and prayers held special meaning for our family today.

Our appointment was great. The behavioral specialist was so pleased with Aaron's progress, and really surprised! She said that he has some increased tone in his arms and legs, but that doesn't seem to be affecting what he can do. Most wonderfully, she thinks he will walk and even run. There is no way to convey in words how I felt...I am not even going to try. I am so proud of my little Cinderella Man and stand in awe of his determination. The appointment was just before his daddy's birthday, (Happy Birthday Honey!) and Matt said it was the best birthday present in the world.

Since the appointment, Aaron has began to pull to stand on low things. He is a little dynamo. His Aunt Andrea was here for the holiday, and she is amazed by him too. Since she hadn't seen him in person for a while, his progress was even more dramatic for her.

Feeding continues to be challenging. His solid foods have dropped off, but I seem to have found a trick or two today to help. I am waiting to see if the soy formula is completely acceptable to his system before I decide what to do about pumping.

Sam is great. I have a video of him golfing I will add on next time. Until then... good night!

10 Things I Know for Sure

1. You cannot plan for every contigency. As much as I might like to. I thought I could. I thought I could control my life. I was WRONG!

2. You can't predict the future. Really. At all. Since as of late, I am batting whatever a bad batting average is, (help me out Sam) I am really doing so much better at staying in the moment. This does not stop me from daydreaming about maid of honor toasts/2nd honeymoons in Jamaica/and I'll admit, the existence of a little daughter for us, but it DOES stop me from getting to much beyond today and maybe next month where Aaron is concerned.

3. When you are at your lowest,if you are lucky like me, no one can comfort you like your mother. That is what I have, and that is what I must be for Sam and Aaron.

4. I really like staying home with my kids. For now (see number 2!)

5. My 4 year old boy is a sweet, sensitive caretaker. On a rough drive home, he sang every song he knew, made every silly voice and face, to try and comfort his crying brother. Long after I had given up. I am not sure what the world does to men to squelch that instinct, but I hope I can help him keep it.

6. Girlfriends, really good girlfriends, are crucial.

7. My husband is a mensch. Even though he tortured me by buying forbidden Jewish baked goods. Too much of that and I'll have to insist on conversion.

8. The country will be better if Barack wins.

9. The doctors who resuscitated my baby, the neonatologists who put the cooling cap on him, the parents who allowed their children to be studied years ago so that this technology is now available, the nurses who watched over him... these people are my heroes.

10. Aaron is doing really well and has more wonderful surprises for us. No matter what the doctor visit tomorrow brings. I'll keep you posted.

Crawling

So, the most exciting news. Aaron is crawling. I can't really believe it. It is early for crawling and I was even worried that it might be somehow due to increased spasticity, but his wonderful PT Pam said that is not the case. He is so cute and determined, he inches his way around the living room. The video here doesn't really capture it, but it is all I could get after SEVERAL tries, so it is a start. I can remember when I wondered if Aaron would ever sit unassisted- so crawling early is really beyond my wildest dreams. He also sort of pushes up on his legs against the cushions. He is still often on tiptoes with that, but I am DONE making predictions or diagnoses for Aaron. Way to go proving mommy wrong little man!



Sam has had a little bit of trouble with the new development, mostly because Aaron is getting extra attention and into Sam's stuff! Mostly, though, he takes it in stride. We start almost every morning with the following song... sung by Sam

" Good Morning to you, Good morning to you, your brother sure loves you, and your mommy does too!"

What a special person he is.



Heard this week about another cool cap baby. I have been thinking of that poor family and hoping the baby does well. This week at the hospital, EVERYONE asked about Aaron. It is so nice that people care, but it gets exhausting. Thank goodness that he is doing so well, or else it would be even harder.

These are not great videos. One is too dark, but I can't figure how to delete it. The other doesn't show what he can really do. I will try to post better ones soon.



"

Links

These are a mix of uplifting and sobering links about kids with hypoxic injuries and cool cap. I like looking at both. Even the kids with severe delays are (as should be obvious but sometimes isn't) such individuals and cherished.



This is a happy story about a cool cap survivor

http://www.stuff.co.nz/auckland/4635492a22399.html-

This is one of the study results. This is not the strongest of the trials, but still showed some improvement with cooling.
http://cel.isiknowledge.com/InboundService.do?
product=CEL&action=retrieve&SrcApp=Highwire&UT=000227096800023&SID=2Dh2dP9cLNfM4ci8mKo&SrcAuth=Highwire&Init=Yes&mode=FullRecord&customersID=Highwire

The pilot study
http://cel.isiknowledge.com/InboundService.do?product=CEL&action=retrieve&SrcApp=Highwire&UT=000226406500002&SID=3DM4383H1Mj8cilfOla&SrcAuth=Highwire&Init=Yes&mode=FullRecord&customersID=Highwire

A study of kids with neuro injuries in general with outcomes.
http://pediatrics.aappublications.org/cgi/content/abstract/109/1/26?ijkey=2450d0eb99877066797b4937c2e18c8a988bb896&keytype2=tf_ipsecsha

One of my favorite stories
http://www.natus.com/documents/60099-FLB-EN0727R.pdf


The UM press release-
http://www.med.umich.edu/opm/newspage/2004/coolingcap.htm

This is a friend from my uterine rupture support group. Her little boy had the cooling cap and is unfortunately severely disabled.
http://www.liamsmile.com/LIAM_SMILE.html

This site is so wonderful describing a mom and son with CP and how he has done. He is off to college :). If Aaron has CP, I think this will be a useful roadmap.
http://www.thecpchild.com/

Well, that's it for now. I will probably do this again sometime. I am neurotic about googling these sites.

Milestones

It seems like that word is always associated with Aaron in my mind, but my parents just celebrated a big one---35 years! Congratulations Mom and Dad!

Matt and I will be married 10 years this summer. I think so far, we are doing pretty well with all the changes this year has bestowed upon us. When I woke up from the anesthesia after Aaron was born, my first thought was "did the baby survive" ? My second thought was "how will Matt ever forgive me?". He says that no forgiveness is necessary---and I have never felt blame from him for one minute, which I am grateful for. I can honestly say that despite the ups and downs of daily living, he has been a rock for me at times, and me for him at times. Not to mention that, thank goodness...we are both voting for Barack! I am glad we aren't a "mixed" marriage politically :)

Heard today about another baby who was sent from SJ to UM tonight for cooling cap. I really felt a pang thinking about that poor baby and family. If they ask me to go speak with her, I will. A fellow physician whose daughter is Sam's age and was cooled came to speak to us, and it helped a little. Of course, you only really care how your baby does, but it does give you some hope.

Rounding at SJ remains hard. The first day of the week is always the worst. Every time I walk past Triage room 1, I remember hearing that slow heart rate and the gasp of the nurses with the blood. I try to block out the thoughts but it is almost impossible. Luckily, once I get to the Pediatrics side of things, I feel better. I am really glad that I stayed over in the delivery side of things after Aaron was born, because the Mother Baby Unit still feels like work turf since I was never a patient there.

Speaking of SJ, last Thursday I ran into the neonatologist and pediatrician who resuscitated Aaron. The neonatologist was the one who told me he survived but gave me all the disastrous news about his condition. I remember she had tears in her eyes then. We were certainly acquainted, but I didn't know her well prior to Aaron. I always thought of her as seeming very confident, no-nonsense, all business. Turns out she definitely has a soft side. I took Aaron to a conference and she was so excited to see him. She practically grabbed him from me to hold him and was amazed by how he was doing. She actually got very emotional. She had told me once before that Aaron took years off of her life (yeah, me too!) and I could tell he was special to her. So of course, I absolutely adore her and will never have words to thank her.

No pics/video today, I will add some soon.

Two steps forward...one step back

Whew. It has been a rough couple of days. I am not sure why, but Aaron is back to his old hatred of his bottle over the last few days. His eczema is also worse, so I am wondering whether I had an accidental exposure to egg or dairy. The only thing I can think of is when we ordered in Middle Eastern food. I asked about it, but I am not sure how seriously they took my inquiries.

Anyway, yesterday, Sam was home from school for the whole day, and I was so looking forward to spending the day with him. All morning, Aaron cried and fussed. I couldn't get him to take more than 2 ounces. So of course, Sam was left to play by himself again. He is starting to get wise to the fact that Mama always has to take care of Aaron. I was so upset I had to put him down to fuss and call Matt for moral support. I was crying by then too! Finally, I just packed Aaron up and we went berry picking as planned, which was fun. Then Aaron screamed the entire 25 minutes home, despite me trying to feed him several times. When we got home, he ate as if nothing had happened. It just makes every attempt at normalcy difficult. Especially since I am not one to sit home a whole lot.

As usual the afternoon and evening was better. Our babysitter and dear friend came by and couldn't believe how good Aaron looked. He took his solids great. Matt was gone at a meeting and the boys and I had dinner together. Aaron was doing so well with solids that I gave him his first teething biscuit (dairy free) which he loved. He fell asleep and I stayed up getting things ready for the next day. Just when I was ready to fall into bed exhausted, he woke up. He then screamed horribly for almost 2 hours. I was ready to take him for a drive or to the ED because he was nearly inconsolable, when he finally fell asleep around 130 am. He slept for a couple of hours, was up at 330 and then I had to get up to make it to a meeting for work at 530. Then once again, bad bottle this AM. He continues to do well with solids, so that's good.
Maybe it was the biter biscuit...

Anyhow, today, I was pretty exhausted. We had a good experience seeing the ladies who saved Aaron's life, which I will save for another post. He also had his hearing test, which he was not very cooperative for and needs to be repeated in a month. By the afternoon, I felt sick with fatigue and frustration. I have tried hard to not interfere too much with Matt's hours at work, since he is our main earner now, but when he called, I asked if he could come home early. He did- thanks honey- and I just went to bed for an hour and a half. I didn't even make dinner and you know what, we made do! The sleep was indescribably wonderful! I feel so much better and a lot better able to care for Aaron and Sam tonight and tomorrow. I am hoping for a better day tomorrow...

Aaron's Eyes

Me with the boys and their cousin at the beach

Well, another day of good news. Aaron saw the opthamologist today and he does not have a lazy eye. Yay. He was evaluated due to his history and Matt's family history of lazy eyes. The whole process was tiring as we were there for 2 hours, but I am relieved he won't have to wear an eye patch. The opthamologist had not heard of cool cap (surprising since he is peds opthy) and was very interested to hear about it. He said Aaron doesn't need any other testing until he does the picture chart at the peds office at 3. I quickly ignored that piece of info, I don't like to look that far ahead. Speaking of eyes, I am still not sure what color Aaron's are going to be. They are sort of a greyish blue now. The shape resembles Matt, maybe the color will be hazel more like me. Or just uniquely Aaron :)

Feedings are going much better. Though he is not taking appreciably more EBM/formula, he is taking his solids a lot better. Today he actually seemed excited about his peas and cereal, more like a typical baby. And his bottles are going down more smoothly. The food allergy angle seems to have really helped, so it makes this crazy diet worthwhile. Though I really miss ice cream...not that I NEED it :)



He is starting to get around the living room like a fast inchworm. Sam was my sloth, Aaron my worm! However, he is getting better on all 4s, crawling not too far off. He already likes to crawl to Sam's stuff, which has caused some irritability in big brother. Sam wanted to know if we could send Aaron back to G-d. I guess that question was bound to happen!



Speaking of Sam, he said the cutest thing today...we were getting out of the car and he says, what can I help you carry, Mama? I love that he still calls me Mama, too.



Well, I was able to make a video, but it is really dark, so I am going to try again. I may need to ask my sister's SO for computer/camera advice :).

Gratitude and Relief

I am so blessed. My beautiful guys recently-

This week has been momentous for us. Aaron turned 6 months old. It has brought back a lot of memories of his birth and feels like a big milestone. Part of that is because the doctors taking care of him always told us that we'd be able to know a lot more about his prognosis at 6-8 months. We look at him now, and he is sitting, babbling, trying to crawl. I honestly well up with tears at least 5-6 times a day at this point. I just am so grateful and I feel this awesome sense of relief. Am I sure that he will run the bases with his brother? No, but I am pretty sure he will walk the dogs. Am I sure that he will talk on time and have no cognitive challenges? No, but I am very sure that he loves and "gets" peek-a-boo games, will probably say Mama and Dada and will have a great time going to Disney someday. 6 months ago, I prayed for his life, 5 months ago, I prayed he would be able to use his arms and recognize us, now I honestly can say that I mostly just offer up prayers of thanks. (Ok, with the occassional wish for an "easy" life for him, whatever that means!)



So, amazingly, Aaron is meeting all of his 6 month milestones. He is one determined kid. The biggest concern from his well visit is his weight. He is at the 35th or so percentile for weight, 85th for height, and 40th for head (yay). My concern is that he has only gained 4 ounces in a month. However, we recently found out that he has allergies to milk/egg proteins found in my breast milk and he has seemed much more comfortable with eating since I went on the elimination diet from hell. Hopefully that will translate into better eating, more calories and GROWTH! He has been evaluated twice by a speech therapist who says his oral motor skills are fine, and we have a new occupational therapist coming this week for another opinion.



Anyway, I feel I am witnessing a everyday miracle (don't even get me started on those commercials with that Sara McLachlan song, I blubber everytime it is on) and whatever the future may bring for Aaron, he is already so far ahead of what ANYONE (except for probably his faithful Bubbe and Saba) expected. I am going to try to add some video of his trying to crawl this week.

Early Months

Aaron is now 6 months old, and I want to start blogging in "real time" this week, but I want to write a little about those first months at home.

When we brought Aaron home, we felt pretty good about how he would do. His MRI showed "moderate" damage to the motor areas, especially, of his brain, but we were also told the MRI was not entirely predictive and that he "looked good." He was nursing some, and doing OK with his bottles. This feeling didn't last long. Aaron would nurse for no more than 5 minutes at a time, before refusing to take more. He did slightly better with bottles, but still required a lot of encouragement. Worse, he constantly cried and arched, a sign of neurologic abnormality. Every time he did it, I felt sick. While I accepted that Aaron might have special needs, this seemed so severe. I wondered what kind of life my little guy would lead? I worried that he seemed so miserable all the time. He cried incessantly in the bath, in the carseat. I certainly knew babies could be colicky, but I was certain that was too ordinary of an explanation in light of what my extraordinary boy had been through.

I can't describe the fog of gloom that hung over us that first month. I am sure I suffered from some post partum depression. I had flashbacks of my labor and Aaron's birth daily. Matt and I wondered how we would cope with caring for a severely impaired, not interactive child. I worried our entire family would fall apart. I didn't feel I had the energy for anything positive. I felt very sorry for Aaron, but also for myself. Thank goodness I had the support of my parents especially, but also my sister and some very good friends. I tried counseling, but really started snapping out of it for two reasons. First, Aaron started smiling at us! There WAS a little person in there. And second, Sam started showing signs of stress. I still have bad days, but that was my sign that I needed to move forward, and for the most part, I think we have.

I write all this on the off chance that some other mom with a child s/p neurologic injury ever reads this. Don't give up hope! Everyone told me the same, and I could hardly dare to hope...but we are doing so much better now than we were.

Aaron's NICU stay

This is me holding Aaron for the first time. It was amazing! He was 5 days old.

One of our first photos of Aaron. He is so swollen, but you can see how beautiful he is!

I wish I had time during Aaron's stay in the NICU to blog. The closest I have are the emails we sent to friends and family at the time. I will say now that I felt entirely desperate initially about his prognosis. As a pediatrician, I flashed back on every gravely disabled child I had ever taken care of. In a day, everything changed for us. All of our hopes and dreams for a little brother for Sam, two boys playing together, family vacations, kindergarden, college seemed gone. I found myself bargaining with G-d, please just let him recognize us, please just let him be able to eat on his own, please just let him be able to use his arms. The neonatology fellow told us that we could "hope for normal" but that seemed too much to expect for this gravely ill little boy. I wouldn't even allow myself to picture it.

It was a time of highs and lows. It seemed to me like everytime we had cause to celebrate (he opened his eyes, he came off of the ventilator, etc) there would be a major setback, another seizure. After the cap came off, the seizures continued, requiring two medications to cease. I can't describe even now the despair I felt.

Here are our emails...

Dear Family and Friends,

We are pleased to announce that our son, Aaron Jacob Jane, was born on Thursday, March 6th at 3:22 am. He weighed 8lbs, 3 oz. at birth. Unfortunately, he had a rocky delivery by emergency cesarean and got transfered to the neonatal intensive care unit at Univ of Mich, where he is being treated. He seems to be a fighter and is doing as well as can be expected. We ask you to keep him in your thoughts and prayers.

Lauren has been recovering at St. Joseph Mercy Hospital and should be discharged this afternoon. She is anxious to be reunited with Aaron! We appreciate all of your phone calls, prayers and offers of assistance.

I remember this first email, trying to figure out what to tell people. We wanted to be as positive as possible and tried not to stigmatize our little one.

Hello friends,
Thank you to everyone for your well wishes. I am home from the hospital. Unfortunately, Aaron was deprived of oxygen at birth. We feel fortunate that he was able to be transferred to UM where they have started cooling babies to try to prevent brain injury with some promising results. We have heard of some miraculous recoveries so of course that is what we are praying for. They have started rewarming him today. He remains on the ventilator. It promises to be a very long road with likely setbacks, but we can only pray that the steps forward will outweigh the setbacks. We appreciate any prayers/well wishes you can send up for our little boy.
We are not yet up for visitors but hope to see you all when he is doing better. We will try to send pictures then, he is truly beautiful with dark hair.
With love,
Lauren and Matt

At this point, we felt so bleak about Aaron. Matt and I would ask ourselves what kind of life he could possibly have? How were we going to survive this?

Dear Friends,
We would like to thank you for all the heartfelt messages of support, love, prayers and offers of help. It has truly been a blessing and helped to give us strength.
The best news is that Matt and I held our little boy tonight. He has been off of the ventilator for over 24 hours now and his breathing is strong. Unfortunately, he has had some seizures on the monitors (nothing the doctors or nurses can see, but on an EEG monitor). No one is sure what that means for Aaron but he is being treated for them. The medicine makes him very sleepy, so we are still waiting for him to wake up. There are some very promising signs and we continue to pray for his full recovery. This will be a marathon, but our little boy shows every sign of being a fighter. We will continue to send updates when we are able and our deepest gratitude again for your friendship.
With love,
Lauren and Matt

Oh, holding Aaron for the first time was so wonderful. I can honestly say it was the first time I really thought about bringing him home. Before that, I couldn't even walk into the nursery at home. I was still so scared because he continued to be comatose. His gag and suck reflexes were weak and he was rag-doll floppy.

Our friends and family were amazing. My mom moved in, and my dad was around almost non-stop. My sister came in from DC and to this day, I don't know how I would have survived without them. Friends brought food, gifts for Sam. We were too worried to even see anyone, but our friends persisted in offering support. It was the blessing of this ordeal.

Hello Friends,
Aaron is doing much better. He is a little more awake every day. Today, he has nursed for about 6-7 minutes twice. He is still not digesting too well, probably due to some of his medicines, but we are very encouraged by the nursing. There haven't been seizures. We had a scare on Thursday night when he had a fever, but his cultures have all been negative and his temps are now fine. He still hasn't shown us a good strong cry but he does make lots of little growly noises. We have some cute pictures which I will forward as soon as I can get a chance. He looks just like Matt's baby pics! I am really proud of how he is doing considering all he has been through.
I want to thank you all for all the food, prayers, and well wishes. We feel so grateful for your support and look forward to introducing Aaron when he is stronger.
Love,
Lauren
The nursing was so exciting for me. I was starting to admire this little man, he was such a fighter!

Hi everyone,

Attached are a couple pictures of Aaron. Sorry that it took so long. We have many more that we will email soon, especially since he will be coming home on Monday! He has made a lot of progress over the last few days and feeding has gone very well. Thanks again for all of your love and support. Lauren and I truly have been touched and amazed by how generous and thoughtful each of you have been. We look forward to introducing you to our new son.

Matt and Lauren

This was the last post before we brought Aaron home. I got mastitis and was hospitalized myself for 3 days. The best thing about that was that they let me take Aaron for 24 hours in my hospital room, a good "dry run" for going home. Also, Sam visited us both in the hospital. During the pregnancy, I had looked forward so much to Sam visiting his new baby brother and he wasn't able to see him in the NICU at all. So, we were sort of able to recreate that moment.

Overall, the time in the NICU seems a blur in retrospect. It was bizarre for me to be back in the NICU where I had spent so much time in residency as a parent. I tried desperately to maintain control, and sometimes felt detached from Aaron. The staff treated us wonderfully, and in some ways, I felt I was among friends. But it was so strange being that family, the ones everyone feels sorry for.

Aaron's Birth

Me, right before Aaron was born....I had no idea what was in store...

I'd like to tell the story of Aaron's entry into the world. I need to start with my pregnancy. I really liked being pregnant. OK, so not every second of it, and I did my share of complaining at the end, but generally I loved the idea of the baby inside of me. My first son was born by CS because he was breech and I never wanted to have a C section. I had been at a lot of them for my job and I just wanted the other experience. However, everything went fine with Sam (baby 1). When I got pregnant with Aaron, I very much wanted to try a VBAC (vaginal birth after C secton). I talked incessantly with my doctors about it, read about it, talked more about it, and we decided to do it. There was a 1/200 risk of uterine rupture, but that included ruptures that were not catastrophic. I was a good candidate due to my having gone into labor naturally with Sam and the spacing between kids. I figured I would be at a great hospital, monitored closely, and at the first sign of any problem, I would be more than happy to abandon the idea and have a CS.

The pregnancy was smooth. Where I had delivered before my due date with Sam, Aaron didn't seem to want to leave the womb. We had scheduled a C section for a few days after my due date. By that time, I was having very frequent contractions and felt I wanted to give my body just a few more days. My doctor and her partner said this was OK, and even said it would be OK to go until after 41 weeks and consider induction. I said no to both and was scheduled for a CS on March 7. We went to the doctor on the 5th and the baby looked great. I told my husband I felt at peace with the C section on the 7th. We made plans to go to the movies on the 6th for one last date before our baby was born. I did take some castor oil on the 5th in the early afternoon, with the doctor's blessing.

We went to bed at 11 pm on the 5th. I was having some Braxton Hicks contractions but nothing unusual. I woke up at midnight and was having more intense contractions. I woke my husband and we called the doctor and my parents. We were laughing and joking and contractions were manageable. I went to get ready to leave. Within a half hour, I was in agony on my bathroom floor with contractions one on top of the other. This was not what we expected. My husband tried to get our son ready to go to the hospital with us. I couldn't move to get dressed. I thought the baby was going to be born at home. Then, the contractions slowed way down. At the time, I thought G-d was giving me a chance to get out the door. Now, I think this is probably when my uterine scar began to tear.

When I got to the hospital, I am told I slumped over in the wheelchair. I remember being in triage and the baby's heartrate was in the 70s. I was bleeding. They checked me and I realized what had happened. My uterus had ruptured and the baby was out in my abdomen. I was taken to a crash C section. I was certain my son had died and that my decision to try for a vaginal delivery had killed him.

I still flash back on my pregnancy and that horrible night fairly frequently. I still feel responsible for what happened to my baby and I think I always will. But on most days, I realize that I can't change the past and I am trying to make it up to him with every day we have together now.
I know that a miserable mother racked with guilt will just hurt him again.