Home again, home again

William was released from the NICU on Saturday night with no answers other than he does not have NEC. That is good enough for me! I have doubled his Miralax dosage as per his Ped and he has had a few successful poops today. The very strange completely desiccated poop "flakes" seem to be mixed in with his now normal looking breastmilk poop. I have a referral to a pediatric GI and I plan to take William for a consult as soon as there is an opening.

All the good pooping seems to have made William a little happier. He actually let me sleep two consecutive hours last night without holding him. It was lovely.

What I want to know is how in a week's time he has gone from sleeping on his own in the NICU to not being able to sleep unless he is on my chest??? Is it just a rough transition for him? Or does he have my number already?

Margaret seems to be warming up a bit to William. She now approaches him with a grin, uncovers him and touches his body (much more gently than she touches the cat!). I'm greatly relieved.

Say goodbye to the NICU forever???

Nope.

William has been re-admitted. Over the past few days his fussiness had turned into hours upon hours upon hours of screaming (not crying). I took him to the Ped and coerced her into ordering an Xray of his bowels... results: not normal. Dilated intestines and possible NEC.

Right now all his bloodwork has come back okay. They finally allowed him to eat a couple of hours ago. Tomorrow, more Xrays, consults, etc. I'm hoping that they figure out what is going on with him and we can get the heck out of here SOON! Keep us in your thoughts!

As Promised...

Sorry, I'm a day late... I'm a little busy!








I've been getting a lot of questions about how nursing is going and I am so happy to report that it is going well!!! Today he took his first full feed from the breast and there are no words to explain how happy this makes me. William is a great nurser unlike his sister who refused me with everything she had. I hope I am able to transition him to all nursing within a few weeks! The lactation consultant I see is encouraging me to take it slow. I'm so ready to get rid of the stupid pump! I can't believe I pumped for nine months with Margaret... I don't think I could do that again.

And, yes, he is still coming home on Thursday!

By George, He's Got It!

My big little boy has decided he has had enough of the NICU and has started gulping his bottles down! As of this morning, he is on full feeds by mouth and doing well! He has to pass his carseat test, get his immunizations today, have a follow-up eye exam tomorrow, and then he is ready to go. Mommy and Daddy need to take the CPR refresher, get his meds filled, learn about his monitor, and decide if we are going to room in (don't have to since this is #2 preemie).

I love today's milestone. It is one every NICU Mom can appreciate: first time without tape on his face. Pictures will be uploaded later today!

Climbing and Signing

Today Margaret showed me two new skills. She can now climb up on things that are the right height... namely the middle part of the sofa where I have removed the cushion.

Also, out of necessity, she is now signing and saying "down". She is so stinking proud of herself and gives me the biggest grin when she knows she has it right. Now, this isn't one of the signs we have been working on forever... I just looked this one up a few days ago so that she could use it when she gets stuck somewhere. I never expected her to learn and use it so rapidly. Especially since she has never signed anything other than "milk" even though we've used a handful of other signs for the past several months. (Right now she is so excited about her skills that she will not go to sleep!)

William and I have started attempting to nurse. So far he has done better than Margaret ever did. He will actually latch on and suck and swallow! I'm very hopeful that I will be able to nurse him!!! He still is not doing very well with the bottle... and this is our last hurdle before he can come home. I anticipate he will be in the hospital for at least another couple of weeks.

Growing big

Mommy is still having a very hard time but William seems to moving right along.

He is gaining weight like a champ and every day looks more and more like his sister. He is five and a half pounds and 18 inches with a double chin, chubby thighs, and arm rolls... a very cute little baby. William is actually big enough, now, for commercial preemie clothes! It may even be getting close to time for Newborn sizes! ...like his diapers- newborn!...

William has moved out of the NICU and into the Special Care Nursery and has one of the covetted bays with a curtain so we can get some privacy.

Still only taking one bottle a day. Since Margaret had such a hard time with the bottle, I'm more than patient for William to "get it". My sanity isn't riding on every single bottle he takes and I understand it may take him quite a while yet to go all the way to only oral feedings.

William has made it off oxygen now. He seems to be doing really well and has had no a/bs since coming off. And now that he doesn't have that cannula, I have requested all NG feeding tubes instead of OG. After all the oral aversion problems with Margaret, I want to cut out all the risk factors that I can.

He also had his hearing test today and passed. So we know that his ear is in working order. Now we pray that his brain can process the information from his ears!

No new update about his brain injury nor do we expect any.

Pictures as soon as I upload some new ones...

William is back on CPAP.

A rough patch

Mr. William is through his "honeymoon" period at the NICU and has started working through some typical preemie issues and giving his Mommy a hundred heart attacks.

William had to be put back on a high flow cannula after his room air trial. He started to have lots of apnea/bradycardia episodes and is continuing to have many of them a day. I'm hoping this is all short lived and we can get on with the business of feeding and growing.

His weight is up to 3 pounds and 11 ounces so he is still gaining well. He has also stopped having any problems with the HMF, thank goodness. I really didn't want to have to battle about that. I am very lucky that our hospital does not release babies on fortified bm... so he will be weaned to non-fortified milk before discharge.

I'm watching the timing of his a/bs carefully to see if there is any connection between them and his feeding... just in case he is refluxing.

One more week until his next cranial ultrasound. He should also begin attempting to nipple (bottle feed or breast feed) next week. I'm hoping these things go well.

Margaret, David, and I have all been sick. I am starting to feel better now but Margaret's lungs still sound pretty bad. David has started his third round of antibiotics today.... I'm hoping that he starts to feel better soon.

Monkey Update

Our little one continues to do very well. He is having his first room air trial today and like all his others, I am hoping for the best but will not be shocked if he has to go back to his low flow cannula.

The fact that he is even on a low flow cannula at this point is shocking to me. He was only 8 days old when he made the switch. Margaret took 9 weeks before she could go to the cannula!!

I'm also impressed that little boy has had no a/bs to speak of. The nurse last night said that he hasn't really hit that point in his stay, yet... that William is still thriving off maternal blood. The truth is, I don't really remember before Margaret's apnea period. I just remember her having 20+ a shift and it really scared me. I suppose I should go look up when she starting all her a/bs. But I am really hoping that baby boy (and Mommy) gets to avoid most of that.

Will has also started to gain weight consistently. He was born at 3 pounds, 7.7 ounces but lost down to 3 pounds. He is now up to 3 pounds 4 ounces. Only a few more days until he'll be back at his birth weight if he continues to gain like he is.

We got the results of his cranial ultrasound yesterday and found out he has a grade 1 bilateral IVH. Although this is not bad news, I was certainly dissappointed. I was praying for the "normal" result.

The only thing that has be slightly concerned lately is William's reaction to the human milk fortifier the docs are adding to the breastmilk to up the calories. They tried to take him to 24 calories but he ended up with bad residuals so they backed him down to 22. He is still having some residual but it is within their limits. The reason I'm concerned at all is that M was so sensitive to cow's milk proteins. I am worried that W is also sensitive. I went ahead and cut out dairy when he was born but now he is getting it in the HMF. If he continues to have residuals on the HMF (he had none ever with straight bm), I am thinking of asking to the docs to either not fortify or to use something else. I know we want him to fatten up but I am worried about his digestive health and his comfort. Any advice from other preemie Moms out there?

More pictures....

The Newest Monkey

Pictures of the New Monkey!!

Happy Birthday, William Hughes!

Hi everybody! (this is copy and pasted all over the internet!)

My sweet boy, William Hughes was born this afternoon at 1:36pm. He was 28w5d gestation. I was able to have him vaginally (thank goodness!) and I did finally relent to the epidural.

William is a very large baby at 3 pounds 7 ounces and 17.25 inches. Yes, you read that right- 17.25 inches. I seriously doubted the measurement but it is right. Tall like his Daddy. His apgars were 7 and 9.

When he was born, William screamed his little head off. By that I mean he screamed in the delivery room. And then he screamed so loudly in the resuscitation room (he didn't require resus), that I could hear him through the closed door! The nurses all said that they had a hard time giving him surfactant because he was fighting so hard. Very fiesty. I love that.

They did have to intubate him but the neo commented that she doesn't expect him to need it long. For a while they didn't think he would need it at all. His vent settings are currently 25% O2 but I can't remember the rate. They don't expect for him to need his belly lines for very long either.... and then I can hold him!!!

I am doing fine since I could deliver vaginally and did not have an episiotomy (just a very small tear). I am just tired and wish I could get into the isolette with baby Willam for a nice cuddle nap.

I will get pics up as soon as possible.

Thank you all for your support and prayers.

A special day

Today is the first anniversary of the happiest day of my life... the day Margaret came home from the NICU. Upon release she was 41/4 weeks gestation and weighed a whopping 8 pounds and 15 ounces... looking back at her pictures, she looked down right chubby!!! As soon as we got her to the house, she and her Daddy took a nap while I stared at them both nervously. I couldn't believe that we were home.

Here is the email I sent to our family and friends that day:


Today has been a Big Day for us... full of firsts and lasts for our sweet Margaret.

-it was the last time Margaret would wake up in the hospital
-it was the last time Margaret was weighed on the hospital scale
-it was the last time to hear her monitor alarms

-it was the first time I have seen Margaret with no wires, no tubes
-it was the first time that Margaret has been outside
-it was Margaret's first car ride
-it was Margaret's first nap at home

It has been a wonderful, busy, very tiring day. It is so good to have her home. There are no words to describe.

Tomorrow is a big first for me, too. It will be the first day in 131 days that I won't be at the hospital.


Thank you all for your love and continuous support. I can't believe this day has finally come!

Love,
Lisa



There are still no words to describe that feeling. Of being a family at home... finally.