We’re Moving

To a new blog that is. We decided that since we are going to be keeping this blog for a long time, we should make it an official dot com. :)

Please follow our adventures at our new web address. www.mylittlepandesal.com and because you are going to click on that link to see our new blog. I’m going to get you excited because there’s a new post over there with photos.

If you signed up to get email updates through this blog, please make sure you sign up on the new one because this blog will not be updated anymore.

Thanks for understanding everyone! We love you all!

MamaPandesal

Mama Me Time

I realize, the only time I’d ever find time to write is in the morning. When all is quiet and Desmond is still asleep. I’ve decided that this will be my me time. My creative time. Taking care of Des is so much work that even finding a time to nap is quite hard. That’s why I have to consciously make the effort to work on me. That way I can take better care of him and even Nick.

I have been talking to friends about how I am feeling a little restless. Don’t get me wrong, I LOVE BEING A MAMA! But there are times when I find myself wanting to do something creative. Something that involves art. Something that is me apart from family. I think we all need this in life. To have something for ourselves to makes us feel alive. A little like when I was doing capoeira. I didn’t want Nick to do it with me, I wanted to do it myself. To make friends apart from my husband’s friends. To be good at something that he doesn’t have to be good at. It made me feel alive every time I got out of the training sessions. I knew I could something that was my own, with my own strength and effort.

Now that I’m a mama with a little one who depends on me. I can’t just go out and take classes just like that. I have a schedule to follow. A small time frame for myself before my little one needs me. For now with Nick being home, it’s been easier to just go, walk to the junction, have myself a cup of coffee and find inspiration on my walks. But once Nick goes back to work, it will be a little tricky. That’s why it seems like mornings are the way to go. Even if I am not a morning person. A lot of you people know that about me. But if I want to get things done and get myself inspired, I need to work on my morning me time.

So recently, I bought myself a sketch book and a pencil. I’m not much of a sketch artist but I am a doodler. I remember my days of doodling during history class in college. I drew a lot of cows. But I still did very good in class mind you. My brain remembers better if there are images attached to what I’m trying to learn. It is after all a memory technique.

I will try and draw. Draw draw. Work on my creativity and discipline. I am not dropping photography of course but I think that doing other types of artwork would help inspire me with my photography. I need it. We all need it. To be inspired and encouraged. That we can do what we want to do. We just have to put our energies into it.

Before I started this post, I was going to write about Desmond’s first trip to the island. I guess it will have to wait. I just felt like I had to write my mama thoughts down.

I am going to leave you all with a photo of where my creative energies go. A photo of paella that I made last weekend. Cooking is creative. It is a lot of work sometimes, but it makes me feel alive. Every sense in my body is touched by cooking. To smell the aroma, to hear it sizzle on the pot, to see all the different shapes and colors come together, to feel the texture on my tongue and to taste the most amazing food I could ever make. It is an awakening of the senses.

My favorite part after cooking is not just getting to eat what I made, but I get to take a photo of the artwork that I just made. With that, I will take it on another level and work on my food photography skills as well.

Paella Valencia

 

I pray for passion, creativity and inspiration. I pray that my little Desmond would also find his creative outlet and be passionate about it. To pursue his dreams without looking back. Des is going to be a creative man when he grows up. I know it.

Where do I start?

It definitely has been a long time since we posted anything. I guess Nick and I weren’t able to give you all a low down on what happened. This would entail a couple of posts so I could stay current with you all. So bear with me.

First things first. Des was at UW for 2.5 months and then was moved to Group Health for another 2 weeks. It was the second day of the second week when we were asked to sleep over at the hospital so we can get the feel of knowing how to take care of Des without any help. Man that 1st night was sooooo hard. It was hard putting him to sleep and he was crying a lot!  We woke up every 3 hours and it wasn’t easy. I mean, I was already waking up every 3 hours to pump anyway but then this time, I had to pump, feed the baby by bottle and then if he couldn’t finish the bottle, he had to take the rest by tube.  Also, Des grunted a lot in his sleep so there wasn’t any sleep at all.

Des Napping

I still the remember the morning after the first night. The doctor came into our room and asked us how our first night was. As soon as he asked that question and looked at our faces he said, “Hmmm rough night huh?”

The boy that won’t sleep

The only place he’d sleep, which will be told on another post

As for the rest of the nights there, we sort of figured things out. For almost 3 months of coming to the NICU everyday paid off since we knew what to do. We just had to get adjusted to the sleeping schedule.

Finally, on our last day there. After the doctor gave Des a visit and said, “You’re one chunky dude!” He told us we could go home. He said that since we’ve had our practice with putting the tube in Desmond’s nose and we’re comfortable with it, then there is no reason to keep Des at the hospital. All Des needs to do is grow grow grow!

So placing Des in his car seat was so surreal to us. We were actually going to take our baby home! Oh my goodness! It’s real! We get to take him home!!!

Des’ first car ride headed for home. June 28th, 2012

Desmond Marcelo Hayes was born on April 6th, 2012. We were able to bring him home on June 28th, 2012. God is a good God. He has heard our prayers. We have our baby home and we are sooo happy. I can’t wait to tell you guys about the adventures he’s been going on.

I shall be back!

MamaPandesal

Des is home

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As some of you may know, Desmond came hime on Thursday afternoon. It’s a joy to have him home. Here is Mama and Des feeding. Tanya will post more details. But for now, we’re celebrating the union of our family. Prayer requests: -That Desmonds acid reflux would disappear so yhat he’s not in pain -That his gas would also subside -That Tanya and I have the strength to be amazing parents through sleepless nights -For gainful employment for me Love you guys! Thanks for all of your prayer and support. Please don’t forget to leave a comment.

Changes and Progress

Hello family and friends!

So we have updates. Des was moved to Group Health last Saturday. This move has been in the works since April. Because Group Health is my insurance, they want Des at their NICU. I guess paying UW is getting expensive for them. The thing was, they’ve told us so many times, “We’re going to move Des tomorrow to Group Health.” So we believe them and it doesn’t happen. It’s been like that a couple of times. We’d get a phone call in the morning, “Where moving Des in the afternoon.” It doesn’t happen. At one point, they put Des in a mobile incubator, and then had to put him back. So eventually, Nick and I are like, “You know what, we’ll believe it when we see it.” And it finally happened last Saturday.

The UW nurses were saying their goodbyes last Friday. The ones that took care of him at some point during his stay at UW visited him at his crib and said their goodbyes. They told him they will miss him and hope he comes to visit them soon. It was so nice to see how much they loved Des. They mentioned so many times that they loved him and enjoyed taking care of him. I’d say there definitely is favor over Des. Despite the circumstances, there is favor upon our son.

Nick and I will miss our routine at UW, the nurses and the doctors, lactation consultants,  respiratory techs, and even the front desk people. We have made friends there and we look forward to bringing Des over for a visit when he’s all better. So they can see how much they’ve helped our son with their caring hands.

But change is good. This change to Group Health has been good for Des. A good adjustment to a more quiet environment. There are no alarms going at all times, not a lot of nurses walking to and fro, and even the shift change is so quiet, Nick and I are also still trying to get used to it. Des even has one nurse solely dedicated to him. The good thing is, it only took Des one night to get used to the quietness. When we visited him yesterday, not only did he take in full feeds overnight last Sunday but he was sleeping so well. He’s also been waking up for his feeding all the time so it’s a good sign that his energy level is getting higher. Also, the nurse has figured out how to handle his grunting. He grunts a lot because of his gas and acid reflux so all we have to do is after feeding him, we just hold him for 15-30 mins on our chest and he doesn’t grunt as much. Oh and of course make sure he gets a good burp after feeding.

Last Sunday was Nick’s first Father’s day so it was nice to spend time with Des. Nick’s parents also came with us to visit Des. I realize, there are now 3 generations of Hayes’ in the fam. It was so nice to see it. Especially, the part where they all look alike. Nick’s dad, Nick and Des. They look alike! The only thing that I see right now that makes Des Filipino is that he is already darker than his dad. Haha! He might just have a good tan when he grows up.

With his feeds getting better everyday, I really feel in my bones that he will come home soon. Hopefully he gets to come home this month. Maybe in a week or in 10 days, it will happen soon. It will be very lovely!

Now that I have given you all the updates, it’s now time for photos! Yay!

Des smiles for Daddy

Des’ last photo at UW. The nurses are definitely going to miss this handsome little boy.

Daddy giving Des a bath. Don’t worry about that red mark on his face. That’s just from the tape used to keep his feeding tube in place. Look at how strong Des is, grabbing onto his tub. He loved his bath. He actually almost fell asleep at one point ’cause he was sooo relaxed.

The nurse insisted we have a photo as a family. Hehe!

Skin to skin time after Des’ bath. He was sooo happy!

A few minutes after this shot, he was asleep. It was a good night for Des. This was the same night he took in 4 full bottles. :)

The highs and lows….

But definitely more highs!!

Last June 6th our lovely little man turned 2 months old! Time sure does fly so fast. It honestly doesn’t feel that he’s been at the hospital for that long. I guess that’s a good thing. Probably the reason why it feels that way is because we don’t really ask when he’s coming home. And now that I think about it, I’ve never really asked the doctors or the nurses. I know you’re thinking I’m crazy.

Nick and I don’t ask because everytime we visit him, we just see how is he’s doing that day and we will be able to tell if he’s ready to go home or not. Yes, he is growing and getting healthier, his feeds are increasing but slowly. There’s no set date on when he’s supposed to be home. If there was, that would make it easier for everyone won’t it?

It does feel like it’s soon. But soon could be in a couple of days or in a week. So yes, I don’t know when he’s coming home. I’d rather keep it as a surprise myself because if there was a set date and then he gets a brady (heart rate goes down suddenly) they’d have to keep him there for 5 more days. And that will be heartbreaking. I like how it happened for the baby that was next to Des. The mom was talking to her daughter,  “Ok..you’re going home this week. You’re going home this week.” (She was saying this as she was feeding her baby) The nurse then told her, “You know she could go home tomorrow.” The mom was like, “What? Are you serious? Tomorrow? Really?” That conversation obviously happened after her baby has been doing good with her feeds. With Des? He’s not there yet. But he’s close.

I’m telling you, there are highs and lows. He did so good with his feeds yesterday and today was another story. I guess we forgot to tell you guys. (Good news coming up) Turns out, Des is anemic! Why is this good news? Well, the reason why he hasn’t been finishing his feeds is because he gets tired fast. He’s using more energy and not enough time to make red blood cells. And, the doc said, he is going to grow out of it. Preemie’s have a tendency to get anemic, so it happened to Des. Oh why is this good news? Oh yeah… it’s not because of his brain bleed that’s why he’s not finishing his bottle. He definitely has the skill to swallow, breathe and pace himself when he feeds, he’s just tired.

The doc said, hopefully, the closer he gets to his term date (June 13th) the stronger he gets and won’t get tired as much. It doesn’t mean that he has to go home right away on his term date, he could stay longer, or leave earlier. It’s just a way to gauge how things are going.

So Des’ nurse told me he’s been tired with his feeds today. I came expecting to nurse him. But when I tried, he was actually pretty tired to even do that. Yesterday he had tons of energy. My poor baby.

They don’t have to treat his anemia, it’s not concerning enough for them to do anything about it except just give him his usual vitamins that already contains iron. Other than that, he really just needs to grow out of it.

Another news we haven’t told you, Des is growing so fast they had to lessen how much milk he’s taking. He’s now 6 pounds 11 ounces. And he’s gaining 2 ounces a day. Wowza! What a big boy! I mean look at this guy.

“Whaaaaa…?”

He’s definitely making our hearts melt everyday. He’s already got so much character and making all the lovely nurses fall in love with him so bad. A couple of nurses have already whispered to us, “We’re not supposed to have favorites, and don’t tell anyone, but Desmond is my favorite.”

After I changed Des. Relaxing like always.

He’s not a crier. If he’s gassy, he will just grunt a little bit and release. Haha! I’d say he’s an easy baby. Well for now that is. I don’t know how he’d be like when he comes home.

Nurse Eliah, giving him a good burp. He was enjoying it!

He likes to smile too! I still haven’t seen a full smile to see a dimple. But I think he does have a dimple.

See the smile? Now look at the background photo.

Photo taken last weekend. He was hungry.. see him trying to eat his hand?

We still don’t know what his eye color is going to be.

As I type this I can’t help but be thankful of how blessed we are to have such a lovely boy. Another thing to be thankful for is that, he had a routine cranial ultrasound today and the results came back the same. Which is good. There’s no swelling or any change. His brain is just healing now from the bleed. Thank you Jesus!

There are tons to be thankful for everyday. Sometimes, the bad stuff gets so discouraging, but the highs are definitely taking over the lows. It’s so easy to dwell on “Why isn’t he home yet?” That’s just going to get us so depressed. Nick and I proclaim and say,  “Thank you Jesus because you have healed him. For making him whole and healthy!”

Things we are thankful for:

  • For sweet nurses who are not just doing their jobs but loving on Des as well.
  • For God’s provision for paying bills and therapy (We are also qualified for in-home care. When Des comes home, a nurse will come and visit, see how he’s doing, help with therapy and answer any questions we have. All that for a year for free)
  • Our pandesal baby is not a pandesal anymore. He’s a loaf of bread!
  • For the joy that Des brings in our life.
  • That we get special training from nurses on how to take care of our baby and babies in general.
  • That God has never left us nor forsaken us.
  • That we have friends and family that are supporting us and encouraging us throughout all this.

Prayer Points:

  • For Des to have the strength and make the right amount of red blood cells to finish his bottle on every feed.
  • For Des’ brain to just keep healing. Healing right and that there will be no effects of the bleed.
  • For patience and perseverance for Nick and I as we wait for Des to come home.
  • For joy to keep building in our home and in the hospital.

We hope you all have a great weekend. Til the next update. :)

MamaPandesal

A Great Day

Hello Friends and Family,

I know its been a while, but Papa Pandesal is back in (blogging) action!  We had a good day yesterday.  Yesterday, Desmond was the most awake he’s ever been.  He hung out with mom and dad and breast fed the most he’s ever fed, nursed on both sides (he has a preference), and enjoyed his physical therapy time.  And today we saw the fruits of the PT: he was moving his left leg around in the same way we were doing PT on it the day before!  Yay!

Additionally, he’s most likely going to join the ranks of the six-pounder club tomorrow. (Remember, he was born just over 2 lbs, so this is some serious progress!)  He’s got some good meat on his bones.  His arms, legs, and cheeks are filling out nicely.  It’s so nice to see my boy getting chunky like he should be.

And that’s about it.  Small updates are the best updates.  When we go to the NICU and ask the nurse what the updates are, it’s usually that he pooped, he bottle fed, and he gained weight.  And it’s music to my ears and joy to my soul.

I do have one other thing before I go.  Today Pastor Jude preached on praying those crazy stupid prayers.  The big prayers.  The prayers of power and faith.  The prayer that you know that you know that you know that God can and will answer.  I know we have some prayer warriors out there with big faith.  So please stand with us in faith for the prayer points below.  Thank you!

Prayer Points:

  • For 100% healing in Desmond’s head, for 100% motor function in his body!
  • That Tanya is able to produce more milk than Desmond needs.
  • That Desmond is able to bottle feed and breast feed more and more every day.
  • That my phone interview on Friday goes awesome and they want to hire me ASAP (and for a great work environment, culture, boss, pay, benefits, co-workers, etc for the new career that God has for me).

Love you all!  Please leave a comment, and let us know how we can pray for you as well!

Taking it Day by Day

Nick and I have decided that we should share with you something the doctors have told us on May 8th. I guess it took us a while to share it with you since it’s a been a bit rough, we’re taking it day by day and another thing is we haven’t really had the time. We are deciding to share it with you because we would like you all to pray with us.

The doctors said that our little Desmond had Intraventricular Hemorrage (IVH). In lay people speak, he had a bleeding in his brain. Brain bleeds are most likely to occur in preemies. There are 4 grades of bleeding:

  • Grade 1 – bleeding occurs just in a small area of the ventricles.
  • Grade 2 – bleeding also occurs inside the ventricles.
  • Grade 3 – ventricles are enlarged by the blood.
  • Grade 4 – bleeding into the brain tissues around the ventricles.

Grades 1 and 2 are most common, and often there are no further complications. Grades 3 and 4 are the most serious and may result in long-term brain injury to the baby. Hydrocephalus (too much cerebral spinal fluid in the brain) may develop after severe IVH.

Unfortunately, our baby boy has the Grade 4 bleed. The docs discovered that he had the bleed on his 1 month head scan check up. It was a routine check up. It wasn’t like they saw something different with Des that they had to check his head right away. The one thing the doc said is that, the bleed happened probably a couple of days after he was born. And it has now turned into cysts in his brain. The good thing is that it’s not swelling (please pray that there won’t ever be). What happens to the cysts in his brain? It will just stay there. There’s no need to remove it, his developing brain will just grow around it. If the same bleed happened to us grown ups, we would be in deep trouble. But for a baby, because it’s developing, it could not have any effect on him at all.

What are the possible effects of the bleed? Well the doc said the bleed happened on the right side of his brain which could affect his motor skills on the left side of his body, specifically his left leg. Basically, he is at 50/50 risk of having problems with motor skills, basically, Cerebral Palsy. So we are holding on to the 50% chance that there will be no effects. AT ALL!

I know, I know… it’s pretty heavy isn’t it? So here I was on May 8th, holding my baby boy as the doc tells us the news of what happened. He of course, has to lay out everything on the table, the possibilities, the risks and etc. But because he’s a good doctor he said, “I hope you come back to me in a few years and say that everything I said that could happen didn’t happen.” To this I said, “We will come back doc and he’ll even do a choreographed dance to prove you wrong.”  And this is the very reason why I’m writing about it now. Because I would like you all to pray with us. To pray that our baby boy grows up running, talking, dancing and cartwheeling like any other boy.

There are days of discouragement and encouragement. Especially, when it comes to his feeding. He hasn’t been consistent with his bottle feeding. Sometimes he takes a lot, sometimes he doesn’t want it, and if he doesn’t want it, they have to gavage it. Meaning, feed him through his feeding tube that goes through his nose.

The day after we were told of the news, was the day Desmond’s day nurse said, “The physical therapist came to bottle feed him but he didn’t take it at all. He just played with the nipple and licked it. I don’t know if it’s a preemie thing or the… or the…. ” She had a hard time saying it. I thought, “Say it lady… say it and I’ll slap you!” She said, “… or the brain thing.”

I didn’t slap her, but I felt like she slapped me. It was soo discouraging. I said, “I guess he likes my boobs better than the bottle.” Then she gave me that look like, “I’m not so sure….” (I did not like that nurse)

So for two days after the conversation with the nurse, Des didn’t nurse much or bottle feed much, and I was discouraged. I was crying out to God, “Lord please… please don’t let this happen.” But Nick kept on pressing on saying, “It’s nothing babe.. it’s nothing.” But after the two days, Des came back with a vengeance and drank 30ml when Nick bottle fed him (he should be drinking 49ml per feed, he was averaging 10ml bottle feeding with the nurses before that), and he nursed well after that too. Yay to that!

There are still days that he doesn’t bottle feed that much, there are days that he surprises us. Another reason why the bottle feeding is a big deal is because, once he starts finishing whole bottles per feed a couple of times, he will get to go home soon. (yay good news!) I want to talk about the first meeting we had today with the PT but I’ll save that for tomorrow’s post.

I want to start talking about the things we are happy and thankful for:

1) Des could come home soon once he starts finishing whole bottles of milk.

The day Desmond took in 30ml from Daddy

2) He is growing rapidly! He is more than twice his birth weight! Carrying him feels like carrying a full term baby.

3) His hearing and eye tests have come in normal.

4) We were blessed with a baby shower so we are getting close to completing everything he needs in the nursery.

5) He is wearing his own clothes now! I have been bringing his clothes to the NICU and he gets to wear it.

6) He has been pooping and tooting like he should. He likes to toot when we carry him. So warning to friends and family when he comes home and you want to carry him. He will toot on you.

7) I have given him two baths already! It was sooo much fun! My little boy enjoyed it like he was in the spa. He did not fuss one bit!

Des after the first time I gave him a bath. He was sooo content. He smelled soo good too!

8) There is joy in our lives despite the discouragements in life.

9) Our God is a BIG GOD who is faithful with his promises. Promises of healing, comfort, joy, strength and rest.

10) That there are people praying and supporting us through all this.

I want to write more but I have to go and eat, pump, shower and sleep now. I will post some prayer points below though.

PLEASE PRAY FOR:

  • Pray AGAINST delayed developmental anything over Desmond. That he grows up whole, complete and nothing delayed. That God would completely heal him from IVH.
  • Pray that he would finish his bottles of milk SOON!
  • Pray for Nick and I, for strength, hope, perseverance, joy and rest through this.
  • Pray for my milk production to increase. So much so that I’d have more than what Des needs.
  • Pray for finances, for our insurance to completely cover all the bills. Even Desmond’s therapy.
  • Pray for success in each therapy session. Nick and I will also be helping with Desmond’s therapy. So the PT is not the only one helping Des with the exercises, Nick and I will be doing it too.
  • Pray for God’s miracle to be shown in Desmond’s life. That Desmond’s life be a testimony of God’s greatness and goodness.

Thank you everyone for your prayers. Nick and I absolutely appreciate it. We are blessed because you all have been very supportive and encouraging.

Tanya

You Just Do

I feel like I am in limbo. In between the uncertain. I don’t know what to do except do what I know to do. Before, when people would tell me about the hardships they’ve gone through, I think to myself, “Wow, I don’t know if I would ever be able to handle that. It seems soooo hard.” Then I find myself in a situation I never would have imagined myself to be in. It feels so heavy. So hard. And still, I get up to pump and go to work (I went back to work part-time). Visit our little Des at the hospital, go home, and do it all over again. Sometimes I think, “I just want this to end. Lord, please let me just wake up and Desmond is home and everything is good.” But it’s not that way. It’s so easy to just give up. But I can’t. There’s no pausing, no stopping. There’s no moment to think about, “How the heck can I handle this.” I just do. I have to, because right now, my son can’t fight for himself. Nick and I have to. The dark days are really dark. But God has been our light. There’s nothing else to do but hold on to His promises of healing.

I’m just posting about what’s been going on in my head right now. It’s hard not to worry. And when I start doing it, I have to remind myself to just pray. I’m going to keep praying until something happens. It’s a bit of an emotional post I guess, so I’ll just leave you guys for now with good news about our little Des and some photos.

Our little warrior is now 4 pounds and 4 ounces,  and is not in an incubator anymore! He’s in a crib! He was moved to a crib two days ago and it was such a great milestone for him. Not only that, he has started breastfeeding and he’s doing so good at it. He’s also wearing onesies now. He is so cute and precious. There are no words for it. He is starting to look like a mix of Nick and I. Initially it was all Nick. Now more and more people are saying that he looks like me. That makes me smile.  There are more updates on him but we’ll post about that later. For now we just want to share with you how grateful and happy we are that he is growing like he’s supposed to. We are so blessed to have him in our lives.

Des on his first day in his crib. Ready for a blizzard! They wrap him up real well as they wean him off the incubator.

Smiling Des! (Not sure if he’s really smiling at me or just pooping. ha!)

Contemplating the things of this world. :-p

Prayer Requests:

  • My little big boy is taking in more milk now that I can’t keep up. Please pray that my milk production increases so my little boy gets all the nourishment that he needs.
  • Pray for completeness and wholeness over Des. That there will be no developmental delays. That he runs and walks and talks and learns exceptionally.
  • Pray against any sicknesses or infections over Des as he stays at the NICU.
  • For strength and perseverance, comfort and peace over Nick and I as we go through NICU parenting.
  • For God to manifest miracles over our little Desmond.

We again, would like to thank you all for praying with us. This is a big hill we’re climbing and we need all your prayers so we can get through this.

Love you all!

MamaPandesal

PS. My face is almost back to normal! I can smile again without anyone thinking I’m smirking at them! YAY! Pretty soon I can wear my contacts without fear that my eye would dry out. Thank you Lord! And thank you all for your prayers! One answered prayer down… more to go. :)

PPS. Nick and I celebrated our 6th year anniversary on May 6th. It also marks the day that our Des turned a month old! God is good!

Blessed

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Hi everyone! I know we haven’t been posting as often. We do have updates. It’s just that after the move we’ve been trying to settle in. Nick has been busy with the old apartment making sure everything is clean and also getting everything out of the storage and into our new one. We will definitely post about the move. Which was so overwhelming (in a good way) for me because of all the friends that helped us. They did such a great job. I have never felt so loved by such great friends. Thank you again.

If I’m not resting I am visiting Desmond. It’s has been a whirlwind. But definitlely getting better everyday.

For now I will leave you with a lovely photo of our little Desmond. It was taken this afternoon when I had skin to skin time with him. He is soooo precious. He makes my heart swell. I am soooo in love with him.

Love ya,

Mama Pandesal