Monday, September 29, 2008

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!


Tuesday, September 23, 2008

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.

Sunday, September 21, 2008

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.



"

video video

Monday, September 15, 2008

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.

Sunday, September 14, 2008

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.

Thursday, September 11, 2008

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...

Wednesday, September 10, 2008

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 :).




Monday, September 8, 2008

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.

Sunday, September 7, 2008

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.

Saturday, September 6, 2008

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.