PICTURES

25th May - 99 days old!

25th May - Post operative drowsiness

15th May - One of my favorite pictures! Cover baby!

13th May - Happy baby chewing his nasogastric tube!

9th May - Drink Leon, drink!

9th May - nurse Judith is feeding him. He looks really focused on his new activity.

8th May- no additional O2 and very good parameters

8th May

8th May

3rd May

17th April - Nurse Doreen feeding him with the bottle. He loves it!

8th April - Easter - We can finally see his face

07th April - Hanging out in the hammock made by nurse Angelika for him

1st April - Leon and grandma

Leon´s nursery sign

Leon´s little house for some months - the Caleo incubator.

16th March - 1 month old - 1 day after PDA ligation. ( the surgery to close the vessel in the heart)

11th March - 1st time kangarooing with mommy and a day before his 3rd surgery

16 th February 2007 - First hours of life -

24 - 25 - 26 MAY - Hungry and sleepy

Leon and his nurse Angelika

Leon and the proud daddy

26th MAY




Today we got stuck working at home and we just got there at 7 P.M. - As we got there we saw his nurse seated on a cangarooing chair with a baby and the baby cuddling with her, without any monitor, was Leon.
Today they resumed his feedings. Half tea and half milk in the first feedings and then when they observe his intestines and specially the stoma is working well he will drink pure mommy´s milk and actually it happened this evening. Daddy fed him his first pure milk bottle after the surgery- He was very proud to feed and hold Leon in his arms. In fact Leon looked absolutely cute with daddy.

25th MAY

Today Leon was really sleepy. They are giving phenobarbital to calm him down because of he is too hungry. He is looking so cute, so sweet in his bed. Sometimes he opens his eyes and look around, look at me and then fall asleep again. His pacifier is the greatest friend at this moment. The doctors they will start introducing tea tomorrow and if they see his digestive tract is ready they will slowly introduce also milk.
I can´t wait and I bet he too, cant wait.
GOD bless him.

24th MAY

Today Leon is better than yesteerday and is no longer on the C-PAP which is better in this case, since he end up swallowing the air that is blown thru the C-PAP making his stomach even more bloated. He is on strong painkillers and TPN. Bile is still coming out from his stomach thru the NGT and also thru the stoma. Doctors said this is a good sign.
One thing that is really bothering him is that he is very hungry. He sucks his pacifier like crazy.
God bless him.

21 - 22 - 23 MAY - Rollercoaster ride

Post operative contemplative Leon

23rd MAY

Leon was extubated this morning and is doing better. It is my birthday present.
He is on TPN( total parenteral nutrition) and it means NPO( Non per Os in latin or nothing by mouth in english).
He had a blood transfusion, is taking 2 different tipes of antibiotics and is on C-PAP. His stomach is dilated but doctors said it is soft and there are some bowel movements.
He has some bile coming out of his NGT ( nasogastric tube).
Please pray for my lil´ boy.
God bless him!

22nd MAY

Today we woke up with a phone call from the NICU. The doctor in charge called his intestines stick out again during the night and it was turning bluish, therefore he has to have a surgery today. So we should go there to sign all the authorizations for the surgery.
We got there and he was stable and all was fine. The chief doctor spoke to a surgeon who said they should try to put it back in. This time it wasn´t like on mother´s day. It was much worse. I don´t want to go into details, I cannot picture or remember him crying with pain- It makes me sick.
The surgeon came and said she wanted to see how he would react to the procedure before taking him to a surgery.
He didn´t have strenght to breath or cry. He was totally limp, pale-grey and cold in the bed.
I WAS NEVER SO AFRAID.
Around 6 P.M the doctor decided to call a surgeon, intubate him, place a central line catheter and prepare for an emergency surgery within 2 hours.
They started at 8 P.M and around 10 P.M he was back in the NICU.
They reconstructed the stoma he had, and removed a portion of intestine that has been perfurated during the "sticking back" procedure.
He will continue intubated and put under sedation for the night.
God bless him.

21st MAY

From today on I will stay in the hospital during the day. I have a bed in the parents dormitory to feel more confortable there. So when Leon wakes up and show he is hungry I can try and breastfeed him.

I got there and was ready put him on my arms because he was hungry and awake. I put him on the scale first and then he latch on mommy´s breast for half an hour. After that, we put him back on the scale. He drinked 15 ml! That was something I didn´t expect.
He actually wanted more, but the nurse said it was enough.
I put him back on his bed and gavaged him the left over milk.
We are so happy together!

God bless him!

18 - 19 - 20 MAY - Days 92 -93 - 94

Friday 18/05/2007 - 1570 gr

Leon is doing fine today. He drunk the whole 38ml from the bottle and is not using any extra O2. I got there and I tried to nurse him. Since he is taking some light sedatives he isn´t really able to suckle, swallow and breath at the same time while on my breast. Mommy´s lap is so confy that he sleeps easily.
The decided to have him off the C-PAP and if he needs exta O2 it will go thru the nasal canula.
The oftalmologist said that the vessels are not progressing and the scarring is healing. Next Tuesday he will have it controled again. Hope for the best!

Saturday 19/05/2007

Leon is cute. He is doing fine and sleeping a lot these days with the medication. I got there and the nurse said I should start comming earlier so I see him more awake. Nothing new, except for the fact that he is on the nasal canula and is now having colics.

Sunday 20/05/2007 - 1675 gr

We tried to put him on my breast and at first he didn´t want it - He was too sleepy - Then we woke him up, undressing him. Poor little thing...
I put a nipple shield and he finally started to suckle. But then in the heat of the moment, the milk somehow doesn´t flow as it should. It is a bit frustrating. Anyway, I came back later and tried again...He was hungry but milk wasn´t there again. We should try when he is more awake, so he can suckle vigorously and when my breasts are fuller. He was totally K.O after all the exercise. I put him back on his bed, change his diaper and the stoma is a little bit bigger than yesterday. Tomorrow the chief doctor will be there and he will be able to tell what is best to do.
My sweet little bunny was sleeping peacefuly when I left.

15- 16 - 17 - MAY - 90 days - 3 months old!

16th MAY - 3 months old today!

Today Leon is better...actually I haven´t gone there yet, but I called in the morning as usual to see how he did during the night. They said he did it fine and has gain a bit of weight( which they didn´t inform how much). Well, I guess I put a little pressure on the nurses and doctors on monday and they are giving me some cold looks. Anyway...I will be more patient and try not to ask them so much about every single detail. However, I think I have the right to ask. It´s my son we are talking about here!
Well, on Mother´s day daddy went to Frankfurt and I went to see our munchkin´. I got there and the nurse who was in charge gave him to me and she said we should put him in contact with my breast. Well, he didn´t like and somehow my milk didn´t flow. I was too anxious I guess. Then he slept on my lap for a while. Suddenly he woke up and started to cry and cry and cry - and CRY! Poor baby cried relentless and after 30 minutes he was totally K.O- I put him back on his warm crib and the nurse said I could change his diaper. Just when I unbottoned his romper I saw that his stoma was a lot bigger than it ever was. 10 centimeters sticking out of his belly. I almost fainted - the doctor came in and had a look from which I could understand the stoma wasn´t looking good. They decided to call the surgeon!!! During the long waiting period anxiety took me over and I started to cry. I wanted to be sure all was well. The doctor put a catheter on him and gave him phenobarbital plus some opioid painkiller to calm him down while the surgeon was on his way. Two other mothers were very nice to me and offered me a bed in their room so I could sleep over. The surgeon came at 11 p.m. had a look and said they should try to put all the prolapsed portion of intestine back inside (I didn´t want to see it) and said that he should get the reconnection done as soon as possible. After 2 hours I decided to go home...I was riding exclusively the loopings of the emotional rollercoaster. Could barely sleep and at 5 A.M. I decided to get ready and went to see him. I haven´t seen him on his crib so pale and lame for weeks and monday that is how he looks. I was so bad impressed, so frustrated the doctors said we should wait and observe. For GOD´s sake he even lost weight( 60 grams! So we are back under 1500gr, 1460gr to be exact!) I stayed next to him the whole day. I left the hospital and he was a bit better. Altought his color wasn´t that beautiful yet, he was sedated, he didn´t pass any stool, he looked a bit sensitive and wailing he was stable and the monitor shows it. I went home with all that in my head but was so tired I passed out in my bed.

Here Leon is either thinking about his next bottle of milk or just thinking that these people talk too much.

15th MAY

Today Leon looks much better and the stoma isn´t looking that bad. He passed some stool and we Kangarooed. His grandma and great-grandma came all the way from Brazil to get to know him. He is my sunshine and I am so happy he is better today. He was off the C-PAP for a long time and also while we kangarooed. He drinked a bit from the bottle. I changed his diapers and there it was - little beautiful poop - what a relief! The nurse put back his C-PAP and I tucked him in his crib with all his beanie babies and a kiss from mommy.
GOD bless our preemies!

11.05.2007 - Day 85

Leon´s big boy bed


11th MAY

Today Leon had his eyes lasered. There was a big amount of vessels growing against the retina. He was intubated again for the surgery, by the way, the 5th surgery. Actually according to the doctors this is more like a therapy than a surgery. However all the proceedure for a surgery was taken place in order to have him quiet and stable.
He came from the surgery and was already fighting the tube. He hates anything that goes on his nose - Absolutelly hates! He got his C-PAP mask back (which, to be polite, he dislike) and apart from some A´s and B´s, he is doing fine.
He got an upgrade today when he got back from the surgery. No more incubator! Now he sleeps in a warm crib. All snuggle up with his beanie babies, blankets and rolls.
He is doing fine...
We don´t know his weight today. Tomorrow he will be put on the scale and we will see how much bigger he is growing!
That´s it for now.
Mamma is going to check Leon again later.