Tuesday, July 29, 2008

Today was definitely frustrating. After my conversation with Duke I called down to Madera asking the GI Clinic why no one had called me about the feeding team referral for Noah. Oh yes, they scheduled him for NOVEMBER. HELLO! I was like, "Oh that is totally unacceptable. My son has to be seen much sooner then that!" I was so upset. I finally got them to agree to let Noah be seen by the occupational therapist that followed him in the NICU the end of August. We have several appointments set up for the 28th and I'm trying to get her to agree to see him on the 28th. They mentioned doing some "video taping" of him eating to later assess but come on, Noah will NEVER eat on demand so I am going to offer to do it at home and mail it to them in advance so hopefully their behavorial therapist can review it too.

I'm just so frustrated with things. I can't sit around for months hoping my boys make progress, etc. I feel like I'm being stretched thin in trying to get things done for these boys. I guess our only other option is to pursue the feeding clinic in Los Angeles if things worsen over the next few months (right now we are working things out with a great deal of effort and the help of Benecalorie as a supplement) but I was hoping to NOT have to split up their care and have both Madera and LA to deal with. I guess we may not have a choice.

I was also frustrated today with the whole lack of therapy options in the area. I'm going to have to get on Jonah's therapist Friday about seeing him a second time during the week (she wants to see him twice but they have a shortage of therapists and Terrio Therapy is the only place here that does the therapy for children). I've also been thinking he needs occupational therapy for his fine motor skills and I'm going to ask about aquatic therapy too. Every day I work out with Jonah at home but I'm not a trained therapist so there is only so much I can do.

I keep praying that Shane finds a good solution for things as it is often I think we are in the wrong area for pediatric services. Our boys deserve the best and it is so frustrating trying to fight for the services we do get and often feeling like if we were just somewhere with better pediatric care we'd get the attention we need without the ridiculous amount of effort. I do try and remember the good things about living in California, like the Regional Center that has stepped in so many times and helped us with things. California definitely has a lot of programs they offer through the state but our local area is lacking in good pediatric hospitals, etc. and the constant traveling out of town is really wearing on the boys and myself.

Well, tomorrow is another day and as Anne Shirley says in "Anne of Avonlea," (big fan--we just watched the series on Sunday) "Tomorrow is a new day full of promises."
I called Duke University today and spoke with the assistant to one of the clinical trial directors over the Cord Blood program. Shane and I have been actively talking about cord blood treatments for Jonah because of his high likelihood for Cerebral Palsy.

Unfortunately because we did not save the boys' umbilical cords they said at this time in the case of potential CP or CP their protocol is to NOT treat with donor cord blood units as children must undergo rigorous chemo treatments which are life threatening (apparently they have to completely wipe out the immune system in order for the child to accept the donor blood). She said they reserve these treatments for cancer patients who don't have their own cord blood. She was very nice and said not to give up hope and that things are constantly changing as they have only recently started the cord blood treatments so things can improve over the next few years. Jonah is pretty young so maybe by his toddler years new, improved treatments will be available.

I am still saddened, Shane and I had prepared ourselves to sacrifice our savings to try and get Jonah in for a treatment.

Also, apparently Duke said they do not generally save umbilical cords for any birth earlier then 34 weeks. I guess I can stop feeling guilty that I didn't save the boys' as they were 24 weekers. I always have people asking if I banked their umbilical cords and no, in the moment of their early birth we were so worried about them even surviving that was the last thing on my mind. At least I can rest assured that even if we had insisted on banking things it probably would not have been viable enough for use.

Monday, July 28, 2008

“Courage, above all things, is the first quality of a warrior.”

-Karl von Clausewitz-

I created the below collages of my boys and all the things that are beautiful to me about them (of course there are so many I cannot count every one). I chose to include photos of their scars from surgeries, probe burns, broviac lines and one even of Jonah's shunt because they are marks of courage. These little men are true warriors and I know we all have much to learn from them, they may not be able to speak but their ability to smile every day, although they have experienced the most terrifying of obstacles despite their young age, teaches us what it means to truly be courageous. I hope you'll enjoy looking at these as much as I did putting them together. It reminds me of what is important and what the true meaning of beauty really is.

Friday, July 25, 2008

Favorite quote of the day: You are doing your best and your best is awesome.

Thanks a million to one of the sympathetic Yahoo! group moms who replied to a frustrated email I sent out.
Jonah hitting his swing tray (he really goes at it with some gusto) and Incident 5,000 of the cannula removal with Noah (thank goodness for a Pulsox otherwise I think he'd never get any oxygen!)

I finally got a clip of Noah chatting, it turned out darker then I would have liked but hopefully you can see how adorable he is! I had to sneak up on him from behind because every time I catch him chatting with a camera he stops. He has started diversifying his sounds too which is exciting. Hopefully Noah won't have any issue with learning to speak. I also included a brief video of Jonah, I was trying to get close to his eyes but I'm not sure you can actually see much.
The strange case of Dr. Jekyll and Mr. Hyde:

No, it isn't the title of a book it is how the past several nights have been going at the Hanna house. About 6:00 in the evening Jonah starts up with his "Mr. Hyde" persona, screaming and fussing and screaming for several hours. I don't know what it is about night right now but oh my gosh, he is inconsolable. Last night he was horrible for almost three hours (of course this had to be the night Shane was teaching a University of Phoenix class). I finally, finally got him to settle down after putting him in a warm bath (my last ditch effort at trying to calm him down). Of course nasty vomits generally accompany this strange behavior, let's just say he fusses and fusses until he makes himself throw up. It has to be related to his surgery recovery but I keep praying this weekend we will finally see the last of Mr. Hyde.

Tuesday, July 22, 2008

I was just reading another blog of one of the micro-preemie moms who belongs to my Yahoo! group and I was so moved by her recent posting on the incredible struggle of faith one goes through during this journey. I read her posting and felt a great deal of comfort that someone else out there understood the very core of intensity that comes with having an extremely premature child.

I am including a bit of her posting (with some editing for brevity purposes and to emphasize what touched me personally) regarding the birth of her son at 23 weeks:

I can't believe the effect tragedy can have on someone. I can remember watching this family on TV a really long time ago and their house had burned but the whole family had gotten out alive. They were distraught. I couldn't understand it - i was so judgmental towards them b/c they had their family - how could they care about anything else. I get it now - it is tragedy. I wonder daily how many people look at me and think - you have your son. how could you be struggling? but tragedy damages people. not that we can't be restored - boy do I believe that - but it causes wounds and scars - that is how I feel. damaged but at least aware of my many wounds and seeking restoration. so if I have my son, he is growing and looks amazing, what is the problem - that is what I have been learning. what damage has been done?

but really I want to share something - something I need to say out loud for myself. I am really struggling. everyday is a fight to choose joy everyday is a fight to choose faith everyday is a fight to love and serve others. and i want to shout BUT I WILL - B/C I KNOW THIS IS TRUTH AND THE GOOD AND PERFECT WILL OF OUR GOD! and it is what is best for me and my family. I know truth like - he created my son in his image and me too; he created me b/c he wanted to; he has plans for me that are good; his character is love.

I felt so hurt by God; betrayed and abandoned [at my son's birth] but in all actuality I was not betrayed by God - he was who he has always been - I was betrayed and abandoned by my perspective of God. a perspective in which i had based my confidence. I could not sing to him - I could not listen to his word (scripture) with out anger. It had been months since I communicated and listened - I just shouted out my demands for my son and anytime a loved one needed prayer - i would threaten God - it was out of instinct - my prayers would start off "God if you don't..." and then I would realize it was going nowhere and so I would stop. after so many tears and so many thoughts and so many times balled up begging God to just make me back into who I used to be - i finally stood up, washed myself off and went to worship. Physically what did this look like - well, many times when I sing worship songs to God I will stand up - out of reverence, out of obedience, out of awe and love for who he is (if our president or king walked into a room - we would stand - same thing for me in obedience). so what that looked like is my posture changing. i got up - literally stood up, i washed off - i decided to stop living in grief - not that I am not grieving (what I am grieving - ooh that is a whole other blog!) and then I worshiped. now it is still hard to sing songs of adoration right now - but I am consciously working to read truth about God and praying for God to make us thankful for our journey.

I am getting there.

I was so moved by her posting, I hope I can come to this closure myself some time soon. I still feel caught up in the acceptance part of this experience. Shane is blessed enough to just accept life as it is, I wish I were so lucky. I still struggle every day with being grateful for this experience. Every day I struggle with focusing on how lucky we are the boys are here instead of not mourning all that I have lost and all that I see not happening with our sweet Jonah.

I hope to come to know God again and regain that perfect trust I had in his journey for me as I did before the boys were born. I never thought my faith would be so shaken and my testimony so rocked as it has been over the past year but I hope to remember as this dear mother did how it is all about truly knowing and loving Him. This is how one comes to accept in this experience.
Ok, here is my vent for today. I have had two people comment on Jonah's head shape and ask if we planned to do a helmet. YES, WE PLAN TO DO A HELMET. It drives me crazy, I am not a bad mother. I feel like wearing a poster that says, "Yes...Jonah will get a helmet but the Orthodist wants to see more head control first." I have told his physical therapist three times now and she keeps forgetting and asking the same questions. It drives me NUTS. Plus she keeps asking if Jonah has Craniosynostosis, or premature closing of the head sutures because she knows a family whose baby had this problem and he had a miraculous surgery. I've told her like three times now that this is not Jonah's problem and he had severe hydrocephalus and that is why his head is misshapen. The only thing to help this is a helmet. Anyways, our PT wanted to call our Orthodist (of course she knows him because they are the only place in town that does the infant helmets) and talk to him. I told her to be my guest because we'd love to see him in a helmet sooner then later too but every time we go in for an office visit he wants another month to see if Jonah will improve. I'm putting off another office visit until September because I want to see first if Jonah will improve this month with his PT. If not, we may be in for the long haul and we just need to get that helmet going.

Ok, vent over.
I am yet to get a video of Noah talking to his toys but I will keep trying (you can hear him a bit in Jonah's video)! I did get this clip of him puckering his lips and blowing kisses to his toys. Grandma Hanna taught him how to blow kisses and now he tries to blow kisses at everything. I wanted to get photos of Jonah's eyes but of course he won't let me get close enough so I included a video. You can see the dark shadows where they are pretty roughed up, especially the corner of his left eye. We have arm restraints on him so he won't rub his eyes and he is pretty unhappy about that. He has learned quickly how to wiggle himself out so we're putting them on time and again all day long! Fun, fun!
Noah, caught red handed! Does this tell you the kind of day we've had so far?

Monday, July 21, 2008

The fussing and crying continues with Jonah. Last night was terrible. He was crying and crying for several hours. Everything we did was unsuccessful. I finally called his surgeon this morning (paged actually) and I am still waiting to hear back. She mentioned the antibitoic/steroid eye drops he is taking 4x day can cause irritation and I'm wondering if this is part of the problem. So I am trying to get her to call in a new prescription and maybe some Tyenol w/Codeine for nights when he is in so much pain he just is inconsolable. Bless his heart.

Noah is as cute as a button. He is trying so hard to make all kinds of noises and sounds and he constantly talks to his mobile, often at the top of his lungs. He talks to everything that he thinks is listening and it is so cute to see. He is still scooting with his back legs and we hope with a few more weeks on the floor he'll figure out how to coordinate his arms plus legs to start crawling.

Happy almost 6th month (adjusted) birthday boys!! I always go by their adjusted birthday when thinking of time. So on the 24th of July they will be 6 months adjusted.

Linda leaves tomorrow and we are sad to see her go. She has been a huge help, I am not sure how we would have done things without both her help as well as my father's help. We have been hugely blessed in way of family.

The rest of the week I'm sure I'll spend figuring out how to manage both boys with two hands. =)

Saturday, July 19, 2008

Last night was long. Jonah was so fussy and cried pretty much straight for several hours last night. I am sure his eyes were bothering him. He finally fell asleep and I let him sleep with me for the night. This morning he seems to be feeling better. He still isn't eating as much but I know it takes a couple of days to get all the gas, etc. out of your system that comes with anesthesia. Noah continues to be a fight to feed. His habit lately is to be terrible in the morning and during the night. You'd think after not eating well during the night he would wake up starving come morning, oh no! He doesn't eat well until late morning/afternoon/early evening. We'll figure something out for him yet! Noah last weighed in just over 13 pounds and Jonah this past Thursday weighed in at 13 pounds 14 ounces, just two ounces shy of 14 pounds! Hip hip hooray! I hope we can reach our goal of 15 pounds by their "actual" (not adjusted) first birthday in early October. Pray for no major illnesses between now and then and that we will survive teething!!
Grandma Hanna with the boys. Thank you for all your help!

Friday, July 18, 2008

Another cute collage from Aunt Valerie!

Thursday, July 17, 2008

Surgery went well today for Jonah. He had a hard time coming out of the anesthesia so post-op took longer then normal. I didn't think they would intubate for the procedure but they did so I am certain he has a sore throat on top of his other discomforts. The surgeon said everything went well and that his heart and breathing were fine for the surgery. We are yet to see the improvement but he is opening his eyes and we can see that he focuses straighter. I know this won't completely mend his eyes but we hope that his vision will be greatly improved.

For now we are keeping cool cloths on his eyes at all times. We've tried the ice pack they sent home from the hospital but he is not a fan and keeps wiggling it off, he seems more content with the cold cloths so we are continuing with this plus Tyenol.

We also got the PH Probe results today. The nurse basically said that the test showed he did have high levels of reflux but that the medication he is currently on correlates with what the test showed. She told us if he didn't show improvement on the new levels of reflux meds to call the office but I am hoping with the meds we'll continue to keep things under control so he can eat his formula well. There was no mention of surgery, etc. so I am relieved to hear that.

We're changing the Lactulose dose to see if we can come to a normal consistency for his bowel movements as the amount he was on was causing him to have several runny BM's.

What a week! Phew! I am so relieved it is nearly over. We have a post-op appointment tomorrow and then we finally head home.

Wednesday, July 16, 2008

Just a brief posting tonight. Jonah's surgery is at 7:30 AM tomorrow and we have to be at the hospital at 6:00 AM so I need to get some rest here soon. The probe study went as well as can be expected. Jonah did a lot of fussing and crying. He definitely did not eat nearly as much as he usually does (to be expected). I hope the results will be to continue with his reflux meds as he has been improving with his formula intake and mostly keeping food down with his medications. I think we are supposed to hear something Friday.

Jonah's surgery will be 1.5 hours (at least) and then post-op will probably be another hour or two. They did say most babies/children don't need narcotics for pain just Tyenol so that is really good. I am sleeping with one of his blankies tonight so I can hopefully give it to him after surgery for comfort. The nurse today suggested I bring wash cloths to place on his eyes afterward because it is soothing so I had Shane pack several for tomorrow that we can use.

Pray for our sweet little man, it is hard to believe this is surgery #8. He is such a valiant, courageous little boy. He has had a tough week, little noises make him jump and with reason he is wanting Mom close by at all times. It just amazes me he keeps fighting through all of this. Sometimes I look at him and think it is simply unjust that he must go through so much before his first birthday but I have to keep an eternal perspective and remember that God has a purpose in all things, even when I don't understand.

Thanks everyone for your continued support and prayers and thanks to Linda for being home with Noah and taking good care of him while Shane and I are gone.

Monday, July 14, 2008

Just a quick posting. Tomorrow we leave early in the morning to head down to Fresno. Jonah will undergo his PH Probe study starting late morning until Wednesday. I am dreading the whole process as Jonah has not had anything in way of tubes put in his nose/mouth, etc. since his discharge four months ago.

He screamed to death today when we did his blood work at the pediatrician to clear him for surgery on Thursday. I kept thinking, oh my....tomorrow is going to be so much worse. I just keep hoping we'll make it through the 24 hours with little incident.

He hasn't been on his reflux meds since yesterday morning and so far things have been ok. We have successfully avoided a spit up, so far. We've been really good about feeding him more frequently and less amounts as well as making sure he is upright after eating all to help him because he is not on his reflux meds. I don't want him to be too uncomfortable.

Things did get better over the weekend. I think he is adjusting to the Lactulose. He had a huge poop Saturday morning with the help of a suppository and he has had several small, rather loose poops since. We're watching things to make sure the Lactulose isn't working too well!!

Noah continues to fight us with eating. We just keep battling it out with him. Thank goodness Linda is here to help (Shane's mom), she has been very valiant in trying to get Noah to eat! He certainly is giving all of us a run for our money!

I hope the referral to the feeding team will be quick as we need to get a program figured out for Noah to help him overcome his oral aversions. If we want him to keep growing (he weighed in at 13 pounds 1 ounce today, a 4 ounce difference since last Thursday) then we need him to start eating better!

So that is it for now, we'll keep you posted. I'm not sure if I will have internet for the rest of the week. If I do, I'll post updates on Jonah's condition. His eye surgery is scheduled Thursday but we will not know the time until late Wednesday afternoon.

Thank you everyone for your love and support.

Saturday, July 12, 2008

I appreciated an email from my good friend back east whose son is similar to Jonah (I have mentioned her before). I was a bit bothered yesterday, first because three public health nurses just randomly showed up at my home without calling to set an appointment. The referral was made by the social worker who saw us through our health insurance. I was really annoyed that they showed up unannounced and told them next time to make sure and schedule an appointment as they were lucky to find us home plus I have to screen who comes in to our home because of the boys being in isolation.

What bothered me most was the two nurses not doing the assessment would look off and on at Jonah and I caught both of them giving him the "poor baby" look several times. It upset me so badly, Jonah is beautiful.....yes, he doesn't look as healthy as Noah because he can't function his limbs like his brother nor do his eyes focus as well but he is a beautiful, strong spirited little boy. He doesn't need anyone's pity.

Anyways, I emailed my friend and told her of the incident and as usual she lifted my spirits.

She, of course, understood but then sent me a quote that a friend sent her about her son after she shared an incident where at a NICU reunion one of the nurses was saying very rude comments about the scars on her son's face and repeatedly brought up that it was too bad it would affect how his face would look.

Her friend said,

"Every time I see a picture of [your son] like the one up now, I feel sorry for that nurse who made those pitying remarks about his face. She might look, but she, sadly, doesn't see that the light of God comes through his happy smile and those intelligent eyes so clearly. I'm so grateful to have [him] as a teacher."

She then reminded me that Jonah too was a beautiful, valiant spirit and that it showed in every way.

How blessed I am to have great friends! God bless each of you!

Friday, July 11, 2008

Ok, so frustrating.

Today we had two spit ups for Jonah (more like vomit tonight, an ounce of vomit). The afternoon spit up he did to himself as he stuck his whole fist in his mouth to chew on and gagged himself. Tonight however, he vomited about an ounce of food.

Today we had slightly increased calories as the dietitian wanted to up his formula a bit but nothing significant (a whopping 1.5 extra calorie per ounce). We did however give him a dose of the Lactulose this afternoon.

Part of me wonders if the GI specialist was really listening to me yesterday. I told him the Probiotics totally made Jonah sick and throw up like crazy but he still gave me another laxative.

Are we missing the problem? I think so.

If he keeps vomiting like this tomorrow I'm going to have to drop the meds and call on Monday to tell his nurse the Lactulose isn't working plus I am so worried it is going to mess up his test on Tuesday.

Part of me wants to put the Lactulose off until after the test but he hasn't pooped in a few days so I'm going to try overnight and tomorrow and see how he reacts. We did stop the tiny increase of calories and will pursue that after his surgery/test next week.

We will see.

Also, Noah ate crappy today, he is totally teething and fighting us on the bottle. I hope he can make up for a bad day of eating this weekend.

Sometimes it feels like the battles never end.
Cute photos of Grandpa Hanna with both Noah and Jonah. What handsome little boys!

Thursday, July 10, 2008

Drum roll please: Today at the GI Clinic Noah weighed in at 12 pounds 13 ounces and Jonah 13 pounds 6 ounces. We were thrilled at their weight. We had our big day today (FINALLY) and the dietitian was shocked we had not yet met with the clinic. I tried to tell her I had fought to get in earlier but we were pushed off because they just didn't have any earlier appointments. Indeed the clinics we go to seem to all have the same issue in that it is so hard to schedule appointments because they are over booked with patients. Talk about serious high demand.

Good news, the dietitian was pleased that both boys are gaining weight and growing proportionately. She said if we looked at an adjusted weight scale for micro-preemies both boys are in the 25th percentile. Not bad. Now of course, they only rank in the 5th - 10th percentile when you look at their actual age but comparing apples to apples, they aren't doing badly.

What a relief!! Especially because I have felt so alone these past couple of months trying to figure out ways to better get the boys to eat. I feel saved by the Yahoo! group I am a member of, I have gotten so many wonderful ideas from other moms, ideas that I know have helped both my sons as well as ideas that have made me a better/more educated advocate for them. I am not happy with our pediatrician and only consider him mediocre, so I really have felt like a crusader in trying to get the things done that need to be done for the boys. I wish I could change the situation with our pediatrician but he was recommended by the head of pediatrics in our area and is contracted with our HMO. The only other experienced neonatologist in the area retired that works with our HMO. Got to love insurance.

Now for the yucky details to come. Jonah is set up for a PH Probe study next Tuesday in Fresno. I'll be spending the week down at the hospital. He goes in mid-morning Tuesday and they will insert a tiny probe through his nose down to where the esophagus meets the stomach. It will monitor for a 24-hour period how often the esophagus is exposed to acid. Jonah can't take his reflux meds for 48 hours prior to the procedure. Oh boy, it is going to be a very "unhappy" few days without those reflux meds.

The only thing I am nervous about with this procedure is that they want to determine what Jonah's baseline is (percentage wise) for reflux issues. The GI specialist did say that if he is refluxing at a high percentage it may not matter how many medications we give it will never take care of the problem and he mentioned the fundo surgery that Shane and I are not supportive of. I did tell him I have done my research and 2/3's of children who undergo this difficult, painful surgery STILL are treated for reflux! That is a ridiculous high number of children that are not helped by the procedure and it is a very difficult, painful process. Plus, most children end up with G-tubes and we dread this route as it will create life long problems that we want to avoid, especially when Jonah is doing so well bottle feeding now (at least well for him!)

So pray for Jonah that his test next week will not show anything that is not manageable with medication. I do have hope that it will turn out ok as for the most part his reflux is under control with medication right now. He still refluxes a bit but not as much as he used to and he hardly vomits anymore AND the medication he is currently on is NOT adjusted for his weight/age as we found out today. The GI specialist today made adjustments to his medications. FINALLY! I have been telling our pediatrician for over a month that both boys need to be up to par on their medications and he basically told me he wasn't comfortable increasing the meds as they are already on high doses. I am so glad the GI specialist put things in order and gave us several refills. Plus we will be seeing him every 6-8 weeks so if I think they need a new dosage or am worried about the medication overall I can review things with him.

Noah is being referred to a "feeding team" to do a full assessment of his eating habits. He has a tendency to fight us like crazy. Just this last week he has taken to refusing to eat after about an ounce or two and it has been difficult work to get him to finish his bottles. We have to play with him and play with him or distract him to get him to finish. It's pretty exhausting. However, the week before he was eating like a horse! He is pooping regularly now with the Probiotics so we know that is not an issue. The GI specialist upped his reflux meds as the dietitian talked with him about Noah's behavior and we decided he may be "silently refluxing" and have more of an issue then we really know about.

So both boys have increased reflux medications (fingers crossed this makes a difference) and Jonah is scheduled for his probe study next Tuesday. We are also trying a different type of laxative to see if it can help Jonah's painful bowel movements. I have my fingers crossed this will finally make a difference, if not we will have more studies on our hands for poor Jonah to try and figure out why he is not pooping normally!

Jonah has a long, difficult week next week and I keep hoping things will work out just fine. It was good to hear that all our efforts have paid off with the boys, so far. I guess we are putting solids off for Jonah. The dietitian wanted him to have more head control and said we really didn't need to pursue that until closer to 10 months (adjusted) anyways so she said we have a few months yet before we need to start worrying about introducing solids. In the mean time we'll pursue physical therapy and hopefully we'll see real progress with his upper body control. Putting of solids is fine with me, I am dreading it anyways. She said to put Noah off for one more month and maybe end of August we could discuss starting him on greens.

We are praying for a good week next week and that Jonah will be strong enough to make it through everything.

Thank you everyone for your prayers, please continue praying as we need the support.

PS--A BIG thanks to Linda for helping out today. We were lifting, pushing, hauling those boys around in 109 degree heat today. It was an exhausting day and I am so grateful she braved the heat to help me make it down to Fresno and back!

Sunday, July 6, 2008

Happy 4th of July! We had a fun day with Grandpa and Grandma Hanna. We played games, ate good BBQ and after settling the boys down to bed we watched from the kitchen window as Shane lit fireworks.

I'm pretty sure our "little firecrackers" had a fun first Independence Day. (Noah is pictured in white outfit, Jonah in blue).

Thursday, July 3, 2008

The past two days and especially tonight Jonah has taken to pushing himself off our chests when we are holding him. He is even sustaining himself upright for a few seconds here and there and is better when we hold him on our knees. He still has a way to go but he is trying so hard and we are so proud at his progress! Little by little he is doing better and he responds to us in such a great way. Even his physical therapist was laughing about his little personality today and how he reacts to people talking to him, etc.

It looks like all our efforts at home and with PT could very well be helping him! Noah is starting to scoot himself on the floor and I have a funny feeling he will be working toward crawling soon. He gets his legs under him and scoots himself forward, he is still working on using his arms as well as his legs but he is getting there!
I couldn't resist! How cute are these boys (Jonah is in the hat outfit and bouncer playing with Grandpa Hanna, all other photos are Noah)? Noah is quite good at posing for the camera, already. =) It's hard to call him our Diva quite yet as Jonah is very determined and absolutely insistent that things be done his way (his physical therapist was laughing about this today as he was telling her exactly how he felt about things). He is a strong little spirit and can be very much the Diva of the two but Noah is a ham and just loves the camera!!

Wednesday, July 2, 2008

A happy note for today: Noah ate his rice cereal like crazy tonight. He has really taken to it the past couple of days which is great! Jonah isn't doing badly either (although he was a bit fussy tonight but we still got his bottle down, it just took more time and more convincing). We're hoping with good practice they will be ready for solids in a few weeks.

The formula front is still marching onward. The boys are eating better then when they first came home but they still need to be eating more calories. The higher calorie was probably the culprit for Jonah's vomiting last week as we stopped both that and the Probiotics and he is back to no spit ups the past couple of days. However, the calories will be missed! Noah was so constipated Monday that we cut his calories back to 30 cal/per ounce (Jonah is 27 cal/ounce). Noah has been a bit fussy and is chewing on everything and HARD (watch out for fingers)! So his days of eating like a horse last week (one day he ate 26 ounces, I thought I had died and gone to heaven) have proven to be numbered as the past two days he has been harder to feet. His extra calories made up for it though. Still, the boys are only eating maybe 500-600 calories a day and I know they need to be eating more like 800-900 to really catch up with growth.

I am grateful for where they are at, Jonah has to be near the 13 pound mark and Noah is for sure over 12 pounds and has grown length wise (his feet are getting so big!) I keep hoping we will be lucky enough to get them to 15 pounds or more by their first birthday. That would be fabulous......can you imagine that? Some people would laugh at that because their baby probably weighs in the 20+ pound range come their first birthday but considering they weighed 1 pound 7 ounces (Jonah) and 1 pound 9 ounces (Noah) at birth they are doing AMAZING.

Next week is our first GI Clinic appointment. It took forever to get in to the clinic and I have a list of questions to ask about poor Jonah. We have got to figure out why it is so hard for him to poop! He does not poop like a baby but like an adult and that is not right. Even on the Probiotics he was still passing hard poop and crying through the whole experience. He is still grunting and straining every time he poops, I just feel so bad for him. I'm sure there will be a slew of tests to do for us to figure out if he has absorption issues, allergies, narrowing somewhere in his GI tract or worse case scenario some kind of obstruction we don't know of. I just hope we can get answers!

We are counting down to Jonah's surgery on the 17th. I hope we'll see a big difference and that it will change some of his behaviors. He gets so startled sometimes over noises and I keep wondering, could it be because he can't focus right and see what is happening? It could be sensory related too as many, many of these micro-preemies have sensory issues. Hopefully not. =)

Well, pray for our boys. We are fighting, fighting to get them eating well and the big SOLIDS is lurking over us. I'm actually dreading this next phase because this is where I'll have to start packing as many calories as I can in to as little volume and counting every stinking calorie that goes in to their mouth (I thought calculating cc's/ounces was rough, calorie counting and estimating intake is going to be worse).

Thank goodness I have my Yahoo! group because our #1 topic we discuss is feeding and calories. I have lots of great ideas on how to give my boys as many calories as I can for the small amount of food they may eat. Now, whether they tolerate or agree to eat that food is entirely up to them. =) Too bad I can't control much of anything right now. We'll just have to leave it up to blood, sweat, tears and the Divine.
Pics of Noah playing (he loves his Bumbo) and of Jonah not wanting to hold still for the camera. =)

One of the mothers in my Yahoo! group is going through a difficult time right now. Her former 24 week twin daughter (now toddler age) has a liver spot that may be cancerous (looking very likely). Keep this family in your prayers as they go through this difficult time.

Tuesday, July 1, 2008

Just a note of encouragement. My good, fellow, micro-preemie friend whose son also has a shunt and has some similarities to Jonah, emailed me about yesterday's posting. She said she had noticed mild spasms a few times with her son but their therapist had echoed similar comments as our PT yesterday. She said more than anything it just meant there had been some neurological damage at one point and referred to it as Clonus and that it could mean nothing at all or be tied to other issues such as CP, etc.

I looked up Clonus and the description I found was: Clonus (from the Greek for "violent, confused motion") is a series of involuntary muscular contractions due to sudden stretching of the muscle. Clonus is a sign of certain neurological conditions, and is particularly associated with upper motor neuron lesions such as amyotrophic lateral sclerosis (ALS), stroke, multiple sclerosis, spinal cord damage and hepatic encephalopathy.

I really appreciated her positive, upbeat attitude. Hopefully what I've noticed (just briefly, I haven't noticed it in several days) falls in this category but we do know that CP is likely, just not the severity. No one can fault us by saying we never were aware of the possibilities.

We will keep pushing forward with therapy and working out with Jonah at home, hopefully we'll see good results. For now, onward we go, with determination and love.