Monday, June 30, 2008

I suppose my noticing Jonah's mild twitching in his right foot/leg was no coincidence as I mentioned this to his physical therapist this morning. She said she was just starting to notice it too and yes, it was a neurological sign stemming from Jonah's bleed. I asked if it definitively meant CP (Cerebral Palsy) she said it was a possibility. I guess it is good that this therapist is constantly trying to get us to be positive about the situation and is hesitant to talk about CP yet but sometimes I just wish I could get the brutal truth.

It isn't much of a surprise as we've known that although Jonah had the bilateral bleed, the greater amount of scarring occurred in the right side of the brain which would affect his left side and the NICU neurology did mentioned side effects most likely would be gross motor.

Still, I was disheartened this morning. I've practiced a million times my reaction, preparing myself to hear the mention of CP for the first time by a therapist or doctor. I practice and live by, "Hope for the best, prepare for the worst," even if it is cynical at least I am emotionally ready but still, I couldn't help but feel a twinge of sadness.

So for now we are trying to help him in more often using his left side, hand, etc. He has a tendency to completely favor his right side and clenches his left fist often. He has been gagging himself when sucking on his right hand lately so I started putting a sock on it and I got to thinking, "this is a great way to get him to start using that left hand more." I must have been thinking right as the therapist called it "forced use" and said it was a good idea to continue doing this on a regular basis to get Jonah to really use that left hand.

Maybe, just maybe, we'll be spared severe CP. I keep hoping Jonah will be functional to some degree. The therapist said back when we started in May that she didn't believe at that time Jonah was displaying severe signs of CP, but she didn't rule it out or the possibility of mild/moderate CP.

Honestly, sometimes I feel like I am joking myself to not expect some type of disability considering the severity of his bleed. I know I should be grateful that he has come as far as he has and done as much as he has been doing. I am, I am grateful but still disappointed.

My therapist really did try and be positive and I have to be thankful for that. She applauded me for being all about early intervention, for getting Jonah in to therapy and for noticing things like the minor spasms. She said most parents would never observe this until it became a problem and if we continue to work hard with him we just may be able to change his outcome.

There is always hope.........

Sunday, June 29, 2008

New pics of Jonah eating his Tiger and Noah playing with his rattles. Sweet babies, we love you!

So this is the second post for today, not very common for me but I felt it was important enough to take the time to share. I know that a lot of people read our site and my good friend from Flagstaff, AZ told me (she is a post labor nurse) that her nurse colleagues have been using my entries to train their staff to be more sensitive to parents in crisis situations. For this reason, I do feel a certain need to help people understand our world and what it entails, what it means to go through this experience.

For that reason, I wanted to include recent experiences from other micro-preemie moms about what they have gone through with their now toddler babies. I do this to help you understand that in a case where you meet a parent with a child that appears to have a disability, the best thing to do when you don't know the situation is to NOT say anything at all. Discretion is always best, saying nothing about the disability is always best, by all means drawing attention to their differences is inappropriate. I know this seems silly but I cannot tell you of how many insensitive situations a lot of my fellow micro-preemie moms find themselves in where others are saying the incomprehensible.

Here are the most recent postings that circulated through our Yahoo! group (I have not included the child's names for obvious reasons):

I had a very unpleasant day at my daughter's swim class. She has pretty bad sensory issues and when she is overwhelmed she sort of moans and rocks instead of your typical toddler scream-fest. The class was to be limited to 6 kids and indeed it was. Six kids in our group along with 6 kids in each of the other gazillion groups in the pool. After about 5 minutes she started to moan and was clearly getting distraught because of the cacophony of sound, not because of the water which she enjoys. The woman next to me with her 2 year old says in her Carmella Soprano accent "Oh, I'm sorry, she's retarded that's too bad." I was pretty well shocked and asked her what she was talking about and she replied "well I've only ever
heard retarded kids make that kind of noise and act that way.
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I took my son to Payless on Thursday to find some shoes to fit over his new SMO's (feet braces). The sales lady came up to see if I needed any help, which I did. I assumed she'd be familiar with their products and might have some ideas on what shoes would work for us.

So I showed her his braces and asked if they had any shoes that were wide or stretchy that might work.

Her response made my jaw drop to the floor: "I'm sorry but we don't
sell shoes for kids like him." I definitely let her off too easily because we were in a hurry. I said "You don't sell shoes for toddler boys??".

She happened to be pregnant and all I could think is she should be so lucky to have a "kid like him" because he is an amazing little boy.

I was going to complain to the manager, but she WAS the manager! I normally really like Payless and don't blame the company, this person just happened to be quite ignorant.

She was uncomfortable and just pointed us to the children's aisle where I had to dig through every box and try to fit shoes on him and I was not real successful finding a pair that will work.
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I just wish people would think before they spoke, and be more sensitive to all sorts of difference. In a philosophical vein, reflecting on all the stuff that various members here have had to go through this past week, this world would be so much of a better place if it didn't promote so thoroughly the concept of blending in and masking differences and turning out cookie-cutter sameness, anyway. It's one of the zillion reasons I enjoy Sesame Street so much. They really do a good job there of teaching kids that all kids are kids---kids with wheelchairs, walkers, and those who walk; kids with glasses, hearing aids, lisps, who sign, etc; monsters are friendly, and not creatures to be afraid of, and just as sensitive as people; and that kids with all kinds of families, and those who are black and white and asian and all the colors in between play together.. I just don't know whether those lessons get lost because they're not reinforced at home (by some of the people you all have met this week who probably have kids), or on the playground, or in school and church or in the non-PBS awful TV that kids are allowed to watch. Anyway, sometimes I prefer my virtual Sesame world to the real world out there. But that doesn't stop me from hoping that the world could be a better place; it's just hard to make every moment a teachable moment (not to mention exhausting).
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These are just a few situations of many, many that we share with each other every day on my Yahoo! group. I hope by sharing you will have the opportunity to reflect and think about what you would do in this situation or what you would say.

In saying all this, it would be unfair and unkind for me not to acknowledge all those in our lives who understand how life is difficult right now and who treat our boys with a great deal of love and respect, despite their challenges and differences. To the many of you, we applaud your compassion and hope that others will learn from it.

Love, Shane and Michelle
Today's events: nasty spit up for Jonah. I am disheartened that he has had several nasty spit ups this week, it's has only been one a day but still......we had gone almost three weeks without any spit ups and suddenly this past week he has started up again. I keep hoping it is related to maybe the Atropine drops which can cause stomach irritation (the eye specialist told me it would take 3 weeks for the medication to wear off, great) or maybe it is his sudden spike in sneezing, congestion, etc. I don't think it is the increase in calories as we just started that Thursday and he'd started early this week with spit ups. *Sigh* His allergies which include an increase in phlegm could be affecting things. Too bad most docs don't want to start kids on Zyrtec until two, although there are several micro-preemie moms whose kids' congestion gets so bad they start before then.

We actually are thinking it is the Probiotics but this is the only thing helping Jonah have bowel movements every day. He still doesn't poop right, it isn't loose enough and he still cries through all his bowel movements. But his spit ups coincided a few days after we started the Probiotics. I guess we'll have to weigh what is worse, no poop or spit ups.

Good thing we go to see the GI Clinic (FINALLY) on the 10th of July. I really, really hope they have some helpful suggestions.

Friday, June 27, 2008

Just a quick update. The verdict today for Jonah's eyes is surgery. We scheduled a time for the 17th of July. This will be his 8th surgery in the first 8 months of his life. Bless his heart. The eye specialist did say there is a possibility that this will not be the only surgery as this often becomes a "process." Great. I guess we can hope he'll fit in to the 80% category that only requires surgery once but with our track record and the severity of his eyes I'm assuming that won't happen.

The fires from Northern CA are sending us nasty, polluted air which is giving us all grief this week. Both boys are sneezing and Jonah has started with a bit of congestion and phlegm again. I swear he has allergies which is terrible as they won't do anything about it until he is two. The worst part of it is when it becomes really bad he starts spitting up again. He has had a couple of nasty, nasty spit ups this week. We just had three weeks without any spit ups. However, I asked the eye specialist about the Atropine drops he has taken the past three days and she did say it causes "gastrointestinal mobility reversal," so I am guessing that isn't helping things.

Well, we are grateful for answers just sad that it means another surgery for Jonah. Keep him in your prayers.

Love, Shane and Michelle

Wednesday, June 25, 2008

More photos of Jonah, suprisingly, chewing on his fist and Noah cuddling with his blankie.


Jonah and Noah playing. Jonah loves to put everything in his mouth, even his brother's fist!



Sunday, June 22, 2008

I posted earlier this week about a woman on my Yahoo! group whose daughter was born at 26 weeks and had developed the Grade 4/Bilateral bleed. Sadly, late last night her daughter passed away. It was devastating to read and my heart truly felt for her as I remembered all those horrible times in the NICU when I was not sure if either boy would see another day. I even remember at one point planning funerals, thinking I was in the middle of the end.

I know I do not have a full comprehension why my sons lived when so many like them do not but I do know that God has a purpose in all things. I know my boys have a specific mission in life and I hope that as a Mother I can instill in them the importance of living their lives in a righteous way, living up to their divine potential as God intended for them to be here for a reason.

I am grateful God spared both my sons, there are overwhelming days when I honestly don't know how I will do it and days that I feel like I can't make another day happen, I will not lie about this. I won't lie about the difficulty I have with knowing Jonah's future could include disabilities. But I do know that this morning, when after reading the heart ache of this sweet mother that I looked at Jonah, sleeping so peacefully and felt so strongly that he chose to be here. I know my son accepted this life and accepted from Heavenly Father that this would be his path. He is a valiant spirit and for this reason it makes me want to be a better Mother and to have stronger faith that all will right itself in the end.

I am grateful for the deeper meaning my boys have given me in life, I truly have learned about God's influence and the purpose of life and how all have missions to live out while here on earth.

This week was busy. Jonah had his Wednesday appointments in Fresno. His eye specialist wants him to return in the next week to go through a series of Atropine tests. I am to give him Atropine drops 3.5 days before his exam to relax his eye muscles and dilate his pupils so they can see if perhaps glasses would help with his vision problems. If he passes the exam they will prescribe glasses, if not they will discuss surgery. Bless his heart, his challenges sometimes seem never ending.

Noah had a better week aside from his immunizations Friday. He was so sore and upset and even ran a mild fever for 24 hours. Friday night he was up and down and crying the whole night because he was so upset. Thank goodness I can say he feels better today. He is quite the charmer, he has taken up to talking at everyone and everything. He always has a lot to say to the world. It is exciting to see.

We put the boys down together yesterday on the floor and they had a blast with each other. They would coo back and forth to each other and at one point Noah decided to stick his hand in Jonah's mouth and Jonah happily sucked on his hand (as Jonah sucks on EVERYTHING right now).

Jonah, poor little man, has started teething. I am almost certain this is his problem as he is constantly rubbing his mouth and chewing on his hand or anything he can get near his mouth. He has started being super fussy too these past two days and we just hope this period will go quickly as not much seems to make him happy when he gets caught up in a fit.

Happy news, Jonah now weighs over 12 pounds. He weighed in Monday at 12 pounds 2 ounces and Noah 11 pounds 8 ounces. We are going to start supplementing their formula with Benecalorie to get in extra calories to try and beef up their weight gain as they are still lagging (although we were happy Jonah already made it passed the 12 pound mark, hopefully we will have him up to 15 pounds by his first birthday) and not eating as much as the doctors would like. Noah especially is not working up in his ounces and can be really fussy about eating. Plus he is so active and all over the place that coupled with his respiratory issue he burns much more in way of calories then Jonah.

Jonah is our sleeper and will eat well and then nap between feeds (aside from his new teething phase where he wakes up fussing more often). Noah however is awake by 6:00/7:00 in the morning and is up for most of the day with small naps in the afternoon. He does sleep well at night though which we are grateful for.

We were sad to see Grandpa Langston go, he was so wonderful to us and the boys and we miss him so much. He did so many things for both the boys as well as for us. I would find him often sitting on the floor working with Jonah, helping him work on some of his exercises for physical therapy or giggling at Noah and singing to him. He was amazing and we miss him every day. We will be glad to have him back for a visit in August. Linda is here now and is a big help. She also has sacrificed a lot for these boys and has been a great help in times of need, staying in the hospital with Noah, etc. Thank goodness we have good family.

Hopefully our next posting will bring good news. Thank you everyone for your love and support!

Love, Shane and Michelle

Tuesday, June 17, 2008

Wherever you go, go with all your heart. ~Confucius

I had to share the below You Tube video of Team Hoyt. The father/son team have participated in dozens of marathons, Iron Man competitions, etc. And they have done it with Dick Hoyt pushing and pulling his son every inch of the way because his son has Cerebral Palsy.

I am reminded in watching this the true meaning of greatness and what it is to believe in the power of "can." I hope you all are touched by the inspiration of the incredible journey and amazing love of this family. I know it has given me new meaning in our journey with our sweet Jonah and Noah.


Monday, June 16, 2008

Happy Father's Day!

Cute pics of the boys with Grandpa and with Dad. Shane wanted breakfast in bed (he did the same for me for Mother's Day) so I was happy to oblige and cooked breakfast for both Grandpa and Shane. I also had to include the photo of Noah playing around on the floor. He has just in the past week or so started being extremely vocal about things, his favorite thing to do right now is to squeal at the top of his lungs about everything!!! It is quite funny actually!



"God is great, my friends." -Unknown-

I am tired today. My dad leaves Thursday and I'm a bit sad about the prospect. Shane's mom will arrive Thursday night and will stay until around the 4th of July. After that we'll be balancing things on our own. I think it hit me today that we will soon be without help, it was kind of this weird surreal moment and suddenly I just became extremely overwhelmed. I keep praying God will grant me the extra energy to get past the nights of little sleep to be able to work patiently with both the boys and somehow, hopefully, we will work out a system.

I'm also on the emotional side and just got done briefly reading (both boys are down sleeping but that lasts just minutes around here) my micro-preemie Yahoo! group postings for this morning. One Mother had just joined and was asking for support as her baby girl was in the NICU with a grade 4/bilateral bleed. The doctors were telling her all the horrible outcomes that exist when it comes to babies with bleeds and asking if she was interested in "comfort care."

She is beside herself and I am crying for her. It still hits a tender spot when I read emails from these moms with babies similar to Jonah. It was just a few months ago that I was sitting where they are, overwhelmed to know that my beautiful son most likely would have such a grim outcome. I remember trying desperately to control my emotions and just breaking in to pieces one day and having to be left in the hospital room to cry while Shane went to tell our families that Jonah's bleed had worsened and that it meant he would most likely have severe disabilities. I remember asking Shane to send my father in because he was the only person I could see and I remember him holding my hands and crying with me. I remember sitting there, staring at the doctor as if this wasn't my life, as if some horrible mistake had been made, and listening as he asked us if we wanted to change Jonah's course of treatment because of the situation (i.e. asking about comfort care). I remember Shane and I clinging to each other and saying that the choice was not ours and that we believed that decision needed to be left to God. And I remember the months and months of tears as I tried not to think that it was very possible my son would never walk or run, that he may never be cognitively aware of his surroundings and I remember more than anything the complete devastation.

But as I sit here in tears, reading her email with all these emotions flooding back to me...I remembered my resolution to believe. God is the ultimate physician, that is what one loving NICU nurse told me and I will never forget her choice of words. He is the ultimate healer. Both Shane and I always told each other over those terribly long NICU months that if our sons where meant to come home to us, they would.

Jonah survived 7 surgeries and several horrible infections to be the first child to come home, without oxygen. Yes, the past couple of months have been rocky, with ups and downs but our Jonah knows us. He recognizes Mom and Dad. He coos at us, giggles and babbles and even those who have not yet met him say just from our blog that he is a fighting spirit, that his determination can be seen from our photos and videos.

That is why I chose to post today and include the opening quote, for it is true: God is great, my friends.

Just the other day, another Mom in Tennessee (hello Amanda!) whose son is almost carbon copy of Jonah emailed me to say that our battles continue but she chose long ago to cling to the above mentioned quote and put all her faith in a higher power.

This is what I emailed this sweet Mother today, I told her the decision would be hers but I told her our journey, our choice and our joy at having Jonah in our lives. I also told her that if she believed in God and prayer now was the time to acquaint herself with both for direction.

I am sure we will have some cloudy days ahead and I am sure there will be days that we look at our sweet little man and try so hard to not think of all the things he deserves to have but does not, but I also know that the more powerful days will be those where he touches our faces and smiles as if to tell us it will be alright, it will be ok and that yes, God does love us, each of us.

Friday, June 13, 2008

I wanted to share the below essay published in a magazine called Brain, Child. The authoress, Kate Trump, is a mother of a boy with Down Syndrome. One of my passions, which I have not had enough time to really pursue lately, is writing so when I read this I really appreciated this mother's perfect expression of what it is like to live in the world of a child with special needs.

Not One of Those Mothers

I'm going to confess something.

I never thought I could do this. I never wanted to do this. I never, ever would have chosen this for me, for my one and only life, for my son's one and only life.

Before Thomas, my world was largely untouched by disability. I went on with my life, unaffected and unconcerned, and I never had to face my own ignorance.

Then, one beautiful June day, I was forced to face it-and the face it wore looked just like his brother's, with round cheeks, a tiny nose, and the deepest brown eyes.

Thomas arrived three weeks early on a sunny Friday in June. We made it to the hospital with just enough time to drug me up, something for which in hindsight I am extremely grateful. Not for the pain of delivery-his birth, my second labor, was quick and almost easy-but for the heart-wrenching pain and grief that came after.

Dr. T. is a calm and gentle man. He broke my water, saw meconium, and calmly explained that he would keep the baby from crying until he had suctioned him carefully and thoroughly. So when they rushed our new son (another boy!) across the room and huddled around him, we weren't alarmed. Dr. T. betrayed nothing while he and the nurses worked to resuscitate my baby. I was too giddy to notice as 10, then 15 minutes passed.

"He's having trouble breathing, so we're sending him to the special care nursery," my doctor said. I remember thinking that it was OK, that these things happen all the time.

Hours passed. I was moved to my postpartum room, and still we waited to see Thomas again.

I have to stop here for a minute, before plunging ahead into the next chapter. It's vital that I get this right so you don't do what we all instinctively want to do-put distance between my life and yours.

It's not personal, I know. But as soon as I say anything, your imagination will stand at the mouth of that dark tunnel, the one my husband and I found ourselves hurtling down when Thomas came into the world. You'll shake your head to clear the vertigo. Not your path in life. More power to me, but you couldn't imagine it.

I understand. Before Thomas, given the choice, I'd be leaning over your shoulder looking at some other mother with that same sense of sympathy and awe. "How do you do it? You're amazing," we'd echo in unison to that mother who, but for the grace of God, the universe, Mother Nature, and random chance, could be us.

That other mother sits a little apart. When she talks about her kid, there's a certain look in her eyes, like she's seeing something we don't see. She speaks a foreign language-of sats and meds, of OT and ST, of IEP and inclusion-that you don't want to understand. It's so hard and she's such an amazing woman, and you know that you wouldn't have the strength to do it.

You mean this as a compliment.

It's not. It's the verbal equivalent of throwing salt over your shoulder. It's a fervent and silent plea: Don't pick me. I'm not strong enough, I don't have enough faith, my heart isn't radiantly
kind. And what will he look like? And will I be able to love him, truly love him?

You wish desperately to believe that special mothers are chosen. That God doesn't give us more than we can handle. Two years ago if I had been told that at two days, instead of being discharged, my baby would be put on a lung bypass machine; that at two and a half months he would have open-heart surgery; that at 14 weeks he would come home, alive but fragile, with a feeding tube and an oxygen tank-if you had told me all of this I would have said, Nope, can't do it, find someone else please.

And if I had been told the first gift we would receive after my son's birth would be a book titled Babies with Down Syndrome, a present from the chief geneticist at the big-shot hospital? Certainly I would have paled and looked around. Me? Surely you mean someone else-someone who hears all this and doesn't turn away in fear.

Perhaps you're still skeptical. You can't let go of your certainty that somehow I am a different breed of mother. Now, I must concede: I am a different kind of mother.

Thomas is 20 months old now. At night I sit by his crib and watch him sleep, mouth open, the sleeve of his PJs exposing too much wrist because he's growing so fast. His pudgy hand rests on his baby-blue sheet, the one with the owls. His dark blond hair, exactly like his brother's, curls in a cowlick. His plump cheeks are covered with white medical tape, which holds the oxygen tube tight in his nose. I glance at the display on his oxygen saturation monitor. Nearby, my husband stirs in his sleep. The baby is still in our room so we can respond when his alarm goes off, signaling a drop in his oxygen levels. It's easier than stumbling down the long hall. I should be sleeping, too.

Yet I sit and watch Thomas sleep. Because I can.

I know when he wakes in the morning, he'll pull off the oxygen tube (he needs it only when he's sleeping) and greet me with a loud good-morning babble. His big brother will come in, asking to go downstairs and watch cartoons. "Bring Tommy down, too," he'll say, because to my amazement, after all we've been through, they're close as brothers can be.

If you had told me two years ago that this child would come into my life, I would have wished I could be the mother you thought I was, but I would have known deep down that I was not. If you had told me that I would sit here today by Thomas' crib and say that on most days I don't think much about his having Down syndrome, I would have said you have a fantastic imagination.

But the truth is, whoever or whatever is in charge of baby placement didn't see anything in me that is not in everyone-the capacity to love our children beyond measure and reason, beyond diagnosis and fear, beyond uncertainty and self. I wasn't picked to be Thomas' mom because I am special; I was made special because I am his mom. When I took him in my arms for the first time and gazed into his eyes, I saw only my beautiful, perfect son.


Wednesday, June 11, 2008

One more bit of exciting news for today: Noah has started rolling from back to front and then to back repeatedly today.....oh boy, we are in for trouble soon. It still takes a bit of effort but Grandpa and I watched as he kept rolling himself all over his quilt today. In fact I am watching him roll himself right now from his quilt over to his play mat. Watch out world, here comes Noah!!!
I love the below videos of the boys. I hate to even write this out of fear I'll jinx things but it seems that after all we have been doing for Noah we MAY be turning a corner. We have been giving Albuterol treatments around the clock, sitting in a steamy bathroom with him and then tapping his chest to loosen any mucus plugs, suctioning, feeding smaller volume and more frequently, etc., etc., and I am so happy to say that he satted super high last night on his 1.5 liters (99/100) so I could turn him down this morning to 1 liter and his sats are still in the mid/high 90's. I am praying very hard that this isn't the calm before the storm. =)
video video
One of our many blessings: good family. I couldn't resist this photo of Grandpa and the boys. One night after Shane and I had run an errand together we came home to find Grandpa singing church hymns to the boys. Our little men are going to miss their "Papa." We are glad he will be back the end of August for their baby blessing and again for their first birthday in October. We also can't mention family without mentioning Shane's mom, Linda. She was so wonderful to us when the boys were separated, both back in October as well as the end of March/first of April. She stayed behind in the hospital both times with Noah and was a tremendous help.

We love you family!

Tuesday, June 10, 2008

Well, the roller coaster continues with Noah. We thought we had this bug beat but last night he started up with the same issues he had a week ago, up and down on his sats and we were up all night repositioning, giving an extra Albuterol treatment and suctioning him for any secretions. I haven't been getting much out of his nose, yes some mucus but not so much I would be worried. It's just his dang oxygen needs are back up to 1.5 liters (I finally gave in at 6:00 AM this morning).

So I feel like this week is carbon copy of last, back in the pediatrician's office first thing this morning (of course our doctor was on call for hospital deliveries so we had another doctor) and on the phone with the Pulmonologist office. The doc said Noah's lungs sounded clear and he saw no reason to repeat an x-ray, he said he did see mild retractions but Noah was aware of his surroundings and interacting (this was true this morning but he has been so cranky this afternoon I keep hoping he isn't getting worse already). So after telling us it was probably an upper respiratory infection which is viral (again we knew this), home he sent us. I wish he would have at least taken an x-ray just to make sure there had been no changes since last Monday. The radiologist report did mention (I made this doc print me a copy so I could read it) that there was a small patch of area manifesting what may be bronchiolitis. I hope to heck this isn't true and that it isn't advancing because it can lead to RSV symptoms and require hospitalization. I did ask the doc about this and he said because Noah's lungs sounded clear and because he didn't see him showing signs of something more serious (heavy retractions, grunting when breathing, listless, etc.) that he was sure that wasn't the issue. The Pulmonologist from Fresno took a look at the same x-ray this past Thursday and told me he saw nothing alarming so at least I don't have to second guess the doctor's opinion from this morning.

I spoke with the Pulmonologist office in Fresno and they said just to watch him and call tomorrow and let them know if I thought we should set up another appointment for Thursday. They said their main concern was he was not being weaned from the oxygen but that could also be from his taking a longer time to get over this bug. They basically confirmed what the doctor said and told me that there isn't much to do for something viral.

So we will see how the rest of today goes. He has been SUPER fussy, cranky and all around not happy. He is still eating pretty decent (for him) so that is good but he is just fussy, fussy.

Of course, with perfect timing, Shane left for a business trip early this morning. He hasn't been on travel for months because of the boys and when he finally decides to go on his first business trip Noah starts getting sicker. Good thing my dad is here.

We are trying desperately to keep Noah out of the hospital. I wouldn't mind so much if it were in Fresno because they have such a beautiful hospital with amazing doctors but honestly, I am just not that trusting of the hospitals here plus they don't even have a level III NICU.

Shane did give Noah a priesthood blessing this morning so hopefully divine intervention will have an important role and Noah will get over this hump and recover.

Keep the boys in your prayers.

Friday, June 6, 2008

I hate my cannulas!! Here is Noah before all the massive amount of taping we have to use to keep his cannulas on his face, as you can see he is NOT a fan.


Jonah trying rice cereal for the first time, yummy.


Thursday, June 5, 2008

GOOD NEWS.

It feels so good to type those two words in to the opening line of this posting, especially after the crazy week we've had.

First, last night was a lot better. We had Noah at 3/4 liter for most of yesterday afternoon/evening and turned him up to 1 liter during the night just so we wouldn't chase his machine all night but thankfully his sats were high 90's/100 for most of the night, no more 1.5 liter! Yeah! Today after meeting with the Pulmonologist he recommended we leave Noah at the 1 liter for the next week just to give him time to get over this cold and get stronger. They changed his Pulmicort dosage for his Nebulizers. They did say his chest x-rays from Monday (which I took with me) looked better then his last x-ray at the hospital before being discharged from the NICU. Other then sneezes and a bit of a stuffy nose Noah seems in better spirits today. You know, the specialist also mentioned that it is possible both boys are starting up with allergies. I knew this was a huge possibility...especially living in polluted Central California. Too bad they don't test for allergies until the age of two! Aside from all of this the doctors observed Noah and didn't notice anything that seemed alarming (thank goodness).

The High Risk Clinic went well. It was nice, we saw our old occupational therapist that worked with both of the boys as well as a couple of NICU nurses that knew the boys and an old NICU Mom too, she brought in her daughter who was in the NICU with the boys and she looked so great! We both hugged and were just so glad to see our babies looking well....like babies! We really enjoyed her family and even shared Christmas presents this past December. Anyways, we didn't learn anything new about the boys. Noah is right on for his adjusted age, Jonah has mostly gross motor delays (which we knew; i.e. head control, trunk control, etc.) but his verbal is actually really good and the OT noticed he even is making sounds and noises past his adjusted age. Jonah's fine motor skills actually weren't that bad, he bats at things (especially lights or things he can see well) and brings his hands midline frequently. So all in all, we didn't learn anything knew and as I have really tried to be on top of things with the boys they didn't have any new recommendations (as both are in physical therapy, eye therapy for Jonah). Actually, everyone in the clinic kept asking if I was a nurse because I have been tracking the boys formula intake and charted excel spreadsheets plus graphs to show their trends over the past couple of months, in addition to our schedule of feeding/meds and at one point weighing of Noah's diapers (thank goodness he pees enough that the docs don't think we need to weigh his diapers anymore to assure he isn't retaining excessive amounts of water). Anyways, it did make me feel appreciated and that is a wonderful feeling as some days I just pray all my blood, sweat and tears will help these boys grow and reach as many of their milestones as possible.

We are now at home and it was an exhausting day! It always is, traveling back and forth. Noah hates, hates, hates his car seat. So for most of the round trip he would cry, cry, cry and not much consoled him so I am SO glad to be home. Right now he is playing around under his play mat and sucking happily on his arm (a new found habit he enjoys). Jonah is sleeping snuggled in his papasan and I am breathing a sigh of relief that today is OVER.

One more thing before I close out this posting, it is important that I admit that Shane and I have been so blessed in so many ways. I have my hard days, my angry days and my difficult days and I never have felt I should be dishonest in how I feel on this blog. Last night, Shane and I were trying to think of "good things" that have happened to us in the midst of all this craziness and it wasn't hard to think of a laundry list of good happenings to the Hanna family:

1. Our boys, even after only having a 50% chance of survival, are both home with us.
2. We have, so far, avoided another rehospitalization
3. Because of incredible health insurance the millions and millions of dollars that were spent in caring for our sons for several months did not fall on our shoulders. Shane and I were pondering how we would have indeed been bankrupt had it not been for our incredible good fortune at having all the right insurance plans to pay for the overwhelming costs of long term care.
4. The boys are gaining weight, ok so it isn't pounds and pounds of weight but as the OT said today, "It's important to remember that gaining weight and being healthy is good, no matter what else is said. It is so easy to get caught up in how much weight is being gained by preemies when often times we forget the bigger picture with these babies and babies that are healthy and gaining weight are doing well." So there we go.
5. As much as I have struggled with our move from Washington D.C. to Bakersfield we have been so fortunate to receive all kinds of incredible therapy and program care all thanks to the good old state of California. Both Shane and I know much of what we have received would not have happened if we would have lived elsewhere.

The list goes on and on and we are grateful for the fact that it doesn't take long for us to remember our blessings and how lucky we truly are.

Wednesday, June 4, 2008

Last night was no fun. Noah was fussy and up and down with his sats. Finally at 6:00 AM I turned him up to 1.5 liters and we called the Pulmonology clinic first thing this morning. He isn't running a fever, still eating well but just fussy. He has been fussy all day, the moment you put him down he cries and cries until he is picked up again. Plus he rubs his eyes and just wants to sleep but he is too fussy to sleep. We counted his respiratory rate and it was slightly high but we didn't notice any serious retractions that would tell us he is in respiratory distress.

When I first called the clinic they said maybe we should head to the ER. I told them he wasn't in any respiratory distress just for whatever reason, congestion, you name it, he was requiring the more oxygen. I got him to calm down around noon and got him back to 1 liter and even got him to rest on his chest for an hour at 3/4 liter. Right now he is at 3/4 liter with an occasional dip in the high 80's....mostly when he is mad. For some reason nights seem to be worse for him. He must sleep more deeply at night because I spent all last night waking up to his Pulsox or him crying.

Anyways, we made an appointment for first thing tomorrow in Fresno. We are already going for our high risk clinic follow up so the nurse agreed to get us in first thing to the Pulmonology clinic. I sure hope they can shed some light on what is best to do but Shane thinks they are just going to tell us that yup, he has a cold and just watch closely for signs of respiratory distress.

*Sigh*

I keep hoping and praying this isn't going to be my life for the next several years, biting my nails and pulling out my hair hoping that Noah isn't coming down with pneumonia or something worse that will send him straight back to the hospital to be intubated and biting my nails and pulling my hair about possible issues with Jonah's shunt, delays, etc.

I miss the days when the unknown was spontaneous and fun instead of dreadful and terrifying.

I even packed for the hospital today because I didn't know if they'd rush us down and readmit Noah. Once I explained all his symptoms and what we were doing (extra Albuterol treatments, etc.) the nurse said I could come in first thing in the morning...of course with the disclaimer that if it gets ANY worse we are to immediately go to the ER. I am not stupid enough to march in to the ER around horribly sick people if I don't think Noah needs to be there so I pray he makes it through the night.

I guess this isn't the right time to bring up how much I hate the hospitals in this area, the only one I really feel comfortable with is the one a few minutes away from our home where the boys were born. Their NICU is so small that they'd send Noah off immediately to Memorial to their PICU, especially since Noah is no longer considered a neonate.

Today is a day I wish I could wave my "magic wand" and wish us closer to Fresno or better yet to Utah where family is close by and trusted children's hospitals are but a 20 minute drive away.

Ok, tomorrow I hope I'll have a happier post.....one that includes the specialist in Fresno telling us that Noah will be ok and just to keep an eye on him instead of Shane posting something to the blog saying Noah has been readmitted.

Tuesday, June 3, 2008

Well, just as Shane and I lay in bed Sunday night contemplating how well Noah was doing and maybe, just maybe it wouldn't be months and maybe years of oxygen...Noah started desatting at about 2:00 AM. I got up, suctioned him, gave him an extra Albuterol treatment, changed his Pulsox probe and finally woke Shane up to change out his cannulas all together only to find it didn't stop him from desatting into the high 80's every few minutes. Finally we gave in and turned him up to 1 liter.

Of course I panicked and got in to the pediatrician first thing in the morning. His lungs were clear, everything looked fine, chest x-rays showed nothing had worsened....he just had a few extra sneezes and sniffles, just like his brother who has had a minor cold for almost two weeks (nothing big just some noticeable phlegm and more constant sneezing). I myself haven't felt the best so I figure it must be running around in the family. We even ran blood work only to find out later that afternoon that everything looked fine, nothing signaled infection.

So we are down to just a plain, old, silly cold. *Sigh* It is amazing how the slightest change can affect a child with CLD (Chronic Lung Disease). I even called the pulmonologist in Fresno only to have them agree that the simplest booger can throw these kids off and to keep them posted should his needs rise above the 1 liter.

So, we are here....still on 1 liter. He hasn't worsened and last night he did last for several hours back down to his 3/4 liter but Shane was on nights and was too exhausted to chase him once he started desatting and reposition, etc. so he turned him back up to 1 liter. He has been saturating in the desirable range today (92-100) so we've left him alone.

I just hope it gets better in the next couple of weeks. Everyone knows how long colds hang around.

On a good note, Jonah ate 20 OUNCES TODAY! YES, you heard it. He ate 20 ounces (almost 21). Talk about a complete anomaly. Even Noah had a fairly decent day, around 18 ounces. It would be too good to be true if this turned into a habit.

Well, I best sign off as tonight I get to be up every few hours feeding, changing and otherwise attending to our little men.

Until next time (let us hope it is a very boring, boring entry....we like boring and uneventful at this house.....unless it means good eating and weight gain)

Shane and Michelle