Brave Little baby Alexander

It is with a heavy heart and, flowing tears that I write this post.
Sweet little baby Alexander, who has been a symbol of hope and strength every day of his short life, ever since he was born 6 months ago, left the struggles of this world on the 8th of November..

. He won countless battles against death there in the NICU and, I was so hoping that he would be able to beat the ods and, make it home to his parents loving arms. I have been thinking of him every day since I first came across his story.

Life is so unfair and, it should never have happened. No babies should be born into this world destined to struggle every second of their life, simpley for the right to live and breathe...

No mother's should have to watch their baby die, praying for a miracle, that never happens...

No mother should have to leave the hospital with empty arms, forever aching to give her baby all the love, protection and, safety that should be the birth right of all children...

It just shouldn't happen...But it does... And it breaks my heart every time...

I cry for babies i'll never have the privilige to meet and, for the aching emptyness that their mothers have to face.
It is a darkness I know well. For I have walked that road for over 11 years now.

I wish there was something I could say or do for little Alexander's poor mother and, for all the mothers out there who have and, will be forced to suffer through the loss of a baby, but there isn't... Except maybe that time helps. It doesn't heal...But it helps to eas the pain a little...

I'm so, so sorry little Alexander. Life should have had more to offer you, but your mom is right all the way.. You have touched many lives and, you will continue to do so, as people read your story and, learn what a brave little warrior you were.

Alexander Merlin: November 9, 2011: It is with great sorrow that I sit here and write this entry. Yesterday, Alexander began a new journey.  Last week, the doctors informed us ...

relentless fear

"Is this *'s mother?" Asks a slightly familiar voice on the other end of the line.

"this is her."I confirm.

"This is doctor *** who did the eye exam on your son a while back and, I have spoken to a specialist about his case."

- "A specialist? why, I thought they were sure there was nothing wrong with him." Why do we need a specialist all of a sudden? My thoughts are chasing each other like those dark dirty clouds which sometimes blows in from the sea to block out the sunlight with in seconds. Except this time they're just forming one vile word across the blue happy skys... cancer...

"The doctor recommended that we examine him again as soon as possible just to make sure that we didn't miss any signs of Retinoblastoma and, we'd like him to be sedated during the procedure." Her efficient professional voice continues, unaware of that every word is crushing into my world like a zunami and, that suddenly I'm drowning in memories of a little tiny body, straining with one febal attempt to live, before it relaxed and went to sleep forever.

- "He can't have the Retinoblastoma! You said there were no signs of tumors in his eyes! That there was no reason to worry... And sedated at 5 months?!" I want to scream at her.
"Babies die from such procedures. Doctors make mistakes... And babies die! He's too little, you can't do it yet... don't you understand that I can't live without him?!"

We're just now getting into a little bit safer teritory, so that I don't have to hold my panic at bay by making sure that he's breathing every other minute.

Most cases of sudden infant death syndrom happens when the baby is 3 to 4 months old. And he is finally almost 5... Almost...

'it doesn't matter that
i know that
i don't haveany more reason to worry about SIDS than any other parent of a premature baby.'i'll always worry now... Cause now i know that babies die.

We all know that of course. But it's because we saw it on tv, read it in a book, or because it happened to a friend of a friend. For the compassionate ones it's reason enough to shed a couple of tears and, offer their condoleances, the rest look the other way and say nothing at all...

For me, it also use to be reason enough to check on Alex quite often too make sure that he was breathing. But
i never really let it in. But perhaps that's just not possible until one has felt the body of one's child turn cold and, been forced to realise that no matter what one did, nothing could be done to keep him warm. No matter how I prayed for a miracle...

But of course I say nothing of this... I just ask her when we should schedule the procedure and, she tells me that a nurse will contact me to set it up with in a month.

We hang up and, I hold my sleeping little miracle closer. And I cry...

4 months!

Little peeper is 4 months old today. He has grown so much since he was born and, it's been a little while since it was possible to see that he was premature just by looking at him.
He has outgrown the cradle now, so after a second attempt to get the crib from IKEA, successful this time, me and Alex put it together last saturday.

He even sleeps in it a little bit every now and then, but he likes mommy's and daddy's bed better.

It's time for solids now, but we've decided to wait until he would have been 4 months had he not been premature. His nurse says that there's no need to wait, but as long as he still gets full off of my milk there's no reason to stress things along.

His stomach is very sensetive and we think he's got enough trouble as it is, without giving him food that'll be harder to digest. Quite frankly I've never known a baby to have so much gas. Not even Alex. But it may be that my memory fails me...

Either way, if you take a look at the following, I'm sure you'll agree that it's better not to introduce solids too early:

• Baby's intestines need to mature. The intestines are the body's filtering system, screening out potentially harmful substances and letting in healthy nutrients. In the early months, this filtering system is immature. Between four and seven months a baby's intestinal lining goes through a developmental growth spurt called closure,meaning the intestinal lining becomes more selective about what to let through. To prevent potentially-allergenic foods from entering the bloodstream, the maturing intestines secrete IgA , a protein immunoglobulin that acts like a protective paint, coating the intestines and preventing the passage of harmful allergens. In the early months, infant IgA production is low (although there is lots of IgA in human milk), and it is easier for potentially-allergenic food molecules to enter the baby's system. Once food molecules are in the blood, the immune system may produce antibodies to that food, creating a food allergy . By six to seven months of age the intestines are more mature and able to filter out more of the offending allergens. This is why it's particularly important to delay solids if there is a family history of food allergy, and especially to delay the introduction of foods to which other family members are
allergic.


• Little babies have a tongue-thrust reflex. In the first four months the tongue thrust reflex protects the infant against choking. When any unusual substance is placed on the tongue, it automatically protrudes outward rather than back. Between four and six months this reflex gradually diminishes, giving the glob of cereal a fighting chance of making it from the tongue to the tummy.



• Another reason not to rush solids is that the tongue and the swallowing mechanisms may not yet be ready to work together. Give a spoonful of food to an infant less than four months, and she will move it around randomly in her mouth, pushing some of it back into the pharynx where it is swallowed, some of it into the large spaces between the cheeks and gums, and some forward between the lips and out onto her chin. Between four and six months of age, most infants develop the ability to move fthe food from the front of the mouth to the back instead of letting it wallow around in the mouth and get spit out. Prior to four months of age, a baby's swallowing mechanism is designed to work with sucking, but not with chewing.
  
  More over, feeding solid foods is a less intimate and more mechanical way of delivering food than the baby is use to from the early months. It requires the baby to be able to sit up in a highchair - a skill which most babies develop between five and seven months. In the early months, babies associate feeding with cuddling. Feeding is an intimate interaction, and babies often associate the feeding ritual with falling asleep in arms or at the breast. The change from a soft, warm breast to a cold, hard spoon may not be welcomed with an open mouth. Holding a breast fed baby in the usual breastfeeding position may not be the best way to start introducing solids, as your baby expects the friendly nipple and clicks into a mode of food rejection when receiving the cold spoon instead.



• And last, but not least, young infants are not equipped to chew. Teeth seldom appear until six or seven months, giving further evidence that the young infant is designed to suck rather than to chew. In the pre-teething stage, between four and six months, babies tend to drool, and the drool that you are always wiping off baby's face is rich in enzymes, which will help digest the solid foods that are soon to come.Also, older babies like to imitate caregivers. Around six months of age, babies like to imitate what they see. They see you spear a veggie and enjoy chewing it. They want to grab a fork and do likewise. All of this indicates that solids should not be introduced until 6 months of age.

Now after collecting that information I'm inclined to wait for quite a while. Especially considering that Alexander has had trouble with his stomach all his life. I can't say for sure if it would have made a difference to wait, but since the recommendations back then was to introduce solids at 3 months, it's clear that his digestive system would have been far from ready. It sounds like common sense to me at least, so as long as Peeper is getting all he needs from nursing, he's gonna have to do without solids.

There won't be any "ready to eat" baby food either. It's processed to high hell and, I wouldn't even serve it to my enimies. He'll eat home made baby food and, that's the end of that.

I so wish I would have been more aware of these things when Alex was little. But I guess all I can do is learn from my mistakes and, pray that he doesn't get cancer, diabetes or some other terible disease due to my ignorance...

A little guy in need

I recently found this blog about a little premature boy who's been fighting to come home to the safety of his mom's and dad's arms for 4 months now.

It has made me happy to read about his progress and I've been waiting for the post where I'd be able to read about his first days outside the hospital with the same anticipation as I once felt while waiting for the the twins to be born when I was expecting Joshua. It has given me hope in some inexplicable way.

But things are not going well now and they're not really sure why.

It breaks my heart and I cried when I read the last update about him:
Alexander Merlin: September 1, 2011: Things here are not going well. After the weekend, the CO2 in Alexander's blood went way up. The doctors were unable to get it back down on ...

In a different life, with a different outcome, it could have been either one of my children laying there, struggling for every breath...

Especially little Andreas, who never got the chance to try, because they told me his lungs would have failed anyway. I'll never know if I did the right thing by choosing not to let him suffer. Sometimes, the doctors are wrong you know....

Still, I have to try to hold on to the thought that it would have been so selfish of me to let him die a slow agonizing death just because I didn't want to accept that he didn't have a chance. The right thing to do was to let the doctors help him go as easy as possible. Or wasn't it. I'll never know...

My heart is breaking for this little guys mother. If there's any way I can send her and her beautiful baby boy strength through my thoughts, there's lots coming their way.

27 days of happyness

Our little miracle is here!

3100 grams and 49 cm today.

He's got 3 beautiful names, but he makes the cutest little peeping sound you could possibly imagine, so on here, I think we'll be going with little Peeper for now. I'm sure there'll be other suitable nicknames along the way.



Which means that he has gained 200 Grams since last week.



Actually the c-section was planned for today, but he's been with us for 27 days already, as he was in a little bit of a hurry to join us.


We had to stay in the hospital until he got strong enough to eat. They released us on the 9th this month, but I just haven't had the time to write, since this little one wants to eat every other hour. He's so very little still that I figure I'll just let him eat when ever he wants to. Routine can come later.



He wasn't small for his age, but he dropped to 2320 grams before it finally turned around and he started to gain weight again.



They let us go home on sunday the6 of june and, he was up to 2460 grams that day. 2 days later they came to our house to weigh him, and he had gained 110 grams in that time. Before that it had been a slow climb on the scale with 40 grams every other day, but it was the same with Alex when we got to take him home. It's just better for everybody to be in a relaxed environment.

They made a mistake when they released him, cause the doctor was suppose to do a final physical before we left, but there was some kind of misunderstanding, so he thought it had been done already. But instead of making us come back in, they had the doctor come to our house and examine him. Being blind's got it's advantages some times, cause I doubt that they would have done that for just anybody.

Normally I would have said no, but as it was I really apriciated not having to go back in right away. Though we had to go to the audiologist that thursday anyway, for a second hearing test, which he by the way failed as well, so I guess it really didn't matter...

I try not to worry about the test though. They say that it's very likely that it's because he's premature and he's ear canals aren't big enough for the test to work properly.

All in all it has been a wonderful experience.

Not just finally getting to hold this little miracle in my arms, but everything, even the c-section, which really wasn't anything to worry about at all. The only scary part was that my blood pressure decided to drop during the procedure, but all that really happened was that I thought I was gonna pass out there for a couple of minutes. I never did though and, they got it under control pretty quickly.

I was awake during the whole thing and, B was write there with me the whole time. Well at least until they had let both of us feel him.

They never put him on my chest though. I was kind of puzzled at that, but I never got around to asking them why. They let Brandon feel him first and then they held him so that I could touch him too. They didn't tell us what sex he was, but waited for us to figure it out. Some kind of policy they've got I think, cause it was the same when I had Alex.

After that Brandon went with them while they put him in an incubator and took himover to the premature department. He had a bit of fluid in his lungs, so he was in a c-pap for about 10 minutes, but when I got there he was already better and, didn't need it any more. He had a little bit of trouble and, was making a kind of crying noise every time he was exhaling, but everything was normal after just a few hours.

He didn't need the incubator either, just a water matris with heat, to help him stay warm and, a tube for feeding, since he was to week to eat very much on his own. He's almost never in his bed though, I just let him sleep in my arms.



That closeness is so very important for these little ones and, I don't wanna put him down for a minute anyway. Sometimes I feel like I don't even let B hold him enough, cause it's so hard for me to let him go, but he gets the chance every once in a while at least.



But I suppose I should take it from the beginning here.

My water broke around 10 or so, but I wasn't even entirely sure if that was it at first. B called me from school, he always did around that time, when he was on a break. I almost didn't even tell him about it, cause for the most part, as long as I didn't move around a lot, it was just like a slow dripping.

B came home as soon as he could and, I called the hospital and they said that if it wasn't for that I was scheduled for a c-section already, they'd make me wait until the contractions got worse, but as it was I should come in, but I didn't need to hurry. So then I had B go get a bottle and, some formula, just in case they wouldn't provide us with that, which turned out to be silly, cause now I'm brestfeeding after all. How could I not, when he was so little and needed every bit of strength I could provide him with.

I haven't regreted it for one minute, except sometimes when it's really obvious that B feels left out.

I had to pump a lot in the beginning, since he was to weak to eat very much at a time. I'm not having any problems at all though, it doesn't hurt and, I've got plenty of milk and, I just wish I would have been smart enough to try it with Alex, instead of listening to Helene and Gittan, who both told me that it was painful and, really only made you feel very insecure, since you couldn't tell if the baby was eating enough, Plus you'd have to do all the work while your partner was snoring away. i guess it probably wouldn't have worked back then, cause I could never have survived quitting the medicin. But I still wish things could have been different.

That part about snoring away has turned out to be true, it is almost impossible to wake B up at night, so I definitely do more, but I don't mind that much now that he's spending more time with us during the day. Even if he just sits here with me when I'm feeding our little one, it makes him a part of it and, that is very important. I'm gonna try to use the pump more, so that he can feed him too.

Anyway, I think I went back a bit too far now, as that was way before..


It was around 1:30 pm when we got to the hospital, we waited for a little while and then they hooked me up to a monitar and, the baby was doing just fine.

There was someone else ahead of me who wouldn't be able to wait, so They gave me a shot to stop the contractions. I figured it'd be a couple of hours at least and, it seemed like the midwife thought so as well, cause she went and got B something to eat and everything. I was pretty hungry by then too, cause me and B had gotten in to this routine where we'd go get something from the bakery when he got back from school, lunch for him, but breakfast for me, but knowing that I had a c-section in a not too distant future I of course had to pass, so no food for me since dinner the night before. I told them I had eaten at 8 that morning though. I knew it'd be enough for them to hook me up to the IV, but not enough for them to freak out.

Anyway, as soon as B had gotten his food, the doctor came back and told us that since the contractions hadn't stopped we could go down to the operating room right away, they were ready and waiting for us. Honestly my contractions were no worse than they had been for the last 3 months or so, but who was I to argue...

Actually we had our last cervical scan that monday and, it looked just fine according to the doctor. It was the wierd one who wouldn't show me where things were if you remember, but she behaved quite differently this last time and, I didn't have any problems with her at all. I asked her about being awake or not during the c-section and she said that the other doctor had it backwards and, that it'd be better for the baby if I was awake, since it might take longer to open up the uterus due to scar tissue and such .

It didn't seem like it took very long though and, there were no scary noises. Mostly just a pulling sensation. He was crying before they had even gotten him out completely. We were crying too. It's probably the first time in my life that I've cried for joy. I never did when Alex was born, cause he wasn't brieving, so there wasn't any time to be happy just then, I was just so worried.

so much has changed since Alex had to stay in the premature department, almost 14 years ago. Back then you were allowed to visit as often as you wanted, but that's still all it was, a visit. Now they provide rooms over there so that you can stay with your baby. Not just the moms either, but B too and, even Alex could stay as well.

Our little miracle was born on wednesday the 25 of mei and, the first to days were a little bit stressful. It didn't feel like B got to be with us very much at all during that time. It shouldn't have been like that, cause They had an extra bed for him in my room, so he could just have stayed with me and enjoyed the first time with our new little treasure. Thursday however,he had to take Alex to the eye doctor, which didn't do a lot of good, cause they were just very rude over there and refused to speak english. One of them pretty much questioned what the hell he was doing there, although not in those words. I reckon I can have my fiancé go with my son to an appointment without me when he's been living with us for 3 years, but apparently she didn't think so.

The next night he had to stay home with Alexander. he had been staying with a friends mom the night before and, when it took to long before they heard from us she tried to call the hospital, which was both good and bad, cause without that I wouldn't have been able to get a hold of Alex at all, since ´he hadn't been charging his cell as usual.I didn't get her message until 11 o.clock though and, she said that she had called around 8, so somebody screwed up somewhere. Anyway, I almost couldn't get her to quit talking long enough to put Alex on the phone and, it was obvious that she was drunk. I didn't want him to stay over there after that of course, but I couldn't get a hold of B. He was busy telling Foxworth about Joshua, so all I got was the voicemail. I guess even if I had been able to get a hold of him, we wouldn't have been able to tell Alex to go home, cause he still didn't put his phone on the charger, even though I told him to, so there was no way to let him know anyway. Not that she's bad when she's drunk, she's actually very nice, it's just that I don't want someone who's intoxicated to be responsable for my kids.

I stayed with little peeper until 2 that morning. I didn't want him to be lonely. I couldn't sleep when i got back to my room anyway, I just felt so alone for some reason. I almost had them take me back to him, but in the end I decided to try to rest for a bit and, I slept off and on until 6 or so.

B and Alex came over around 1 and they had gotten the cutest little sailor outfit for this little rainbow of ours. It's the regular size for newborns, but it is way too big for him.



Actually, it's just now getting to fit him and, he's almost 4 weeks now.

For the most part, the change has come easily, though it's a bit more difficult for B than for me. We're both super sensitive however, like that time when B started telling me what bus they were gonna take home and such as soon as he got to the hospital and, it turned out that they weren't gonna stay very long, so I snapped at him for starting to talk about leaving as soon as he got in the dore. That's just the way he is though, he's always planning everything out in detail, but it just made me feel like he didn't wanna be there, but when he realised that's what i was thinking, it made him cry.

Things got better the next day as soon as they got us a room where all of us could stay though. Even though it was a little bit hard to stay in such a small space for 9 days, it wasn't half as difficult as I thought it would be. I was a little bit worried that little peeper would wake Alex up during the night, but for the most part neither him nor B even stirred even though the nurses brought food in every 3 hours.

He's so good though, Most of the time he just makes those little peeping noises... Like a little kitten.... he almost never cries AND, HE'S PERFECT IN EVERY WAY YOU CAN IMAGINE. We're so lucky, so incredibly lucky.