Thursday, September 27, 2007

Sept 27


There isn't much new going on. Matthew's stats are all stable. He had a bag of glucose this morning and his glucose levels are back to normal.

On thier scale last night he was 8.8 lbs. Tonight is 8.6 lbs.

The doctor ( Dr. Gregory of the UC Davis Children's Hospital's Pediatric Intesive Care Team) doesn't think Matthew has an infection. He wants to watch and see to be safe though. He believes Matthew's bilirubon levels have been so high for so long it caused the spinal fluid to turn yellow.

Now our goal is to find out why. His levels are in the high normal for his adjusted age (2 days) and really high for his actual age (7 weeks). They levels will be read again tomorrow to try and get an idea of what's going on. They want to try and resolve the issue since prolonged Jaundice can lead to brain damage and we don't want that!

Wednesday, September 26, 2007

We're back in the hospital


Well, we're back at Mercy San Juan. While I took Kaitlyn to a photo shoot this morning, Daddy noticed Matthew was a little warm and took his temperature. Over the course of an hour,it fluctuated from99.1 to 102. When I got home, it was normal, but figured we should take him in anyways. The doctor recommended getting him to the ER ASAP.

The ER was not fun. From 3 PM to 11 PM Matthew had an IV inserted, urine taken, chest x-ray, blood drawn and a spinal tap. Honestly, surprisingly enough the spinal was the easiest part!

During our time in the ER, Matthew's heart rate was sky high over 200 and he was showing some problems with his oxygen levels and needed a tiny bit of help with oxygen.

Nearly all of the tests came back normal. Well, the chest x-ray still shows significant lung disease, but we figured it would.

As the doctor drew the spinal fluid, she was concerned immediately. It should be crystal clear and thin. It was thin (thank god, thick is usually bacterial meningitis) but it was yellow. The culture showed a possibility of viral meningitis and that his glucose was really low while protein was really high.

So, we are in the pediatric level of the hospital where we will be for a day or two (room5126B) while Matthew gets fluids and lots of antibiotics while having his stats monitored.

Monday, September 24, 2007

Today is Matthew's Due Date

Today is the day Matthew should have been born.

Earlier this year we lived in this perfect world where today I would be round like the pumpkins we visited, I would have went into what I thought was labor a few times and had a couple trips to the labor and deliery department. But, today would be the day. I would go in, labor a few hours, push out a perfect son, spend the night at the hospital and then we would all go home.

Onviously, we don't live in a perfect world. Things don't always go as planned. It's funny, when I was pregnant with Kaitlyn I wanted a cesarean so I could plan which day she would be here and I would be in control and prepared. I was so worried about giving up that control. This time, the control was ripped from my hands like the last piece of pie at the Donner Party. I not only didn't get to pick the day, I didn't get to pick the week. I had no control over anything in my life. Even now, we have so little control over so many things.

I spend so much time researching things on the internet when it comes to anything child related. I started when I was pregnant with Kaitlyn. I saw the afterschool specials, I know Knoweledge is Power. I want to be powerful in any way I can. Even Matthew's doctor at our first visit thought I was a nurse, how else would I know the lingo. That, was incredibly flattering. I research so much because I don't like the unknown. You cannot control the unknown. You cannot change the unknown. All you can do is try to make the unknown as known as possible.

I know we are so incredibly fortunate. We took the pregnancy to a viabale, healthy point and gave Matthew an incredible chance. I know how rare that is. I am told how astonishing it is anytime we talk to the doctor, the medical staff at his office, the NICU nurses, the neonatologist or other women who have been through the same. I know he is our miracle baby. I am incredibly grateful for that.

There is so much still unknown. Matthew looks like a normal newborn. He acts like a normal newborn. But he isn't. He's 7 weeks old and hasn't hit 8 pounds yet. He's 7 weeks old and we can't let him sleep as long as he wants to yet. He's 7 weeks old and he has to see his doctor every week and a cardiologist and have shots to prevent him from getting RSV. He's 7 weeks old and he's only been home for 3 weeks. We don't know what the future holds. We won't know for months or even years if Matthew has any residual effects from the prematurity. We don't know and there isn't anyone that can tell us. All they can tell us is what he's at risk for and that doesn't help do anything but worry you.

Life is so different now. We used to be able to go wherever we wanted whenever we wanted without a worry. Now, we don't get to do that. We can go out 1-2 times a week to a very controlled environment as long as we don't expose Matthew to illnesses or cigarette smoke. That leaves 5 days a week when we are planted at home making the best of it. It not only affects our life, but Kaitlyn's too. I know she loves staying home, she tells us all the time, but I also knows she misses seeing everyone.

When I was in the hospital, I got used to not being able to participate in everything. I got used to the idea that life goes on with or without you and I don't think that's a bad thing. I think it's a very healthy thing to figure out. And, I'm getting used to it again. There are so many things we are restricted from doing and I'm ok with that. I think we've made it pretty clear that everyone is welcomed to come over whenever they want, and we mean that very much.

With the physical limitations of where we can go and how often, we know that it's not easy for people to see Kaitlyn and Matthew. In a sense, we have to put the responsibility into the hands of those that want to see them. Those people will have to come over here. Chances are in November our 1-2 outings per week will be revoked. I know it is going to take away a lot of the fun and the joy of the holidays, but I know we will still make them special. I have confidence that our home will be a winter wonderland and fun. Kaitlyn loves baking and painting and we have plenty of that to do :) And I have faith that those who want to visit and have time to will do just that :D

I know this is a big change for everyone and a bit of an inconvienance, but we wouldn't do it if it wasn't necessary or incredibly important. I know Kaitlyn will adjust to it and it will help to teach Kaitlyn that the magic of Christmas doesn't involve traveling. Christmas can share the same magic and excitment staying at home or just driving around to see the lights as regular trips to the mall can.

I want to give a huge thank you to everyone that has made this as easy as possible on us. Thank you for visiting, keeping us company, bringing us yummy food, calling, inviting Kaitlyn places with you, inviting us places with you (even if we can't go) and for remembering us and asking us how we are doing. It means the world to me.

Sunday, September 9, 2007

All it took was one day

All it took was one day for our lives to forever change. It took one single event for the life that we knew and had grown to love to be forever changed.

On June 2, my water broke and the world changed forever. I spent a little over 9 weeks stuck in a hospital room in a hospital bed. I then delivered our son 7 weeks early and spent another week stuck in that bed. Our son spent a total of nearly 4 weeks in that same hospital in a room right across from where I lived for so long.

In that time, and even since I've had so much time to sit and to think. I've had time to realize so many things that I never realized before. I realized who my true friends were and how much they truly meant to me. I will always be thankful to those who made such great efforts to not only make my stay tolerable, but also to bring my spirits up. I will always treasure every phone call, every surprise package and every visit I had.

Because of those realizations, I also came to the conclusion that I try to hard to be well liked and accepted. I LOVE doing things for people, but I think I now know that sometimes, they don't want for things to be done for them by me. And that's ok. It in no way hurts my feelings, at all. I will always be happy to do things for others and be proud to be able to do them, but I think from now on, I'm going to wait for them to ask instead of constantly offering. I think people who know me, know that I like to do it and won't have a problem with asking. And then, I don't have to feel like I'm going out of my way when I don't need to or really shouldn't.

I'm going to start concentrating more on those that matter and those that we matter to and less on those that don't. For example, I sent out well over 100 baby announcments and maybe a little over 1/2 of those people even aknowledged the birth of our son. When I send out pictures of Kaitlyn, I always send out about 35-40 envelopes of pictures. There are the same dozen or so that never aknowledge them. Why should I consider to waste my time, energy, money or thoughts on them? We know so many amazing people that show on a regular basis that they care, love and want to know us and really, I would rather invest more into those people. I would rather invest more into the people that want to be a part of our lives than those who couldn't care less.

I took so many little things for granted before that fateful day. Such as the ability to stand up in the shower. Or the oppurtunity to eat what I wanted exactly when I want to.

Before we went to the hospital on that fateful night we had the luxury of going where we wanted to, when we wanted to for as long as we wanted to. With Matthew's birth and homecoming, that luxury went out the window like a small piece of paper on a windy day.

We just finished week 1 of 8 isolation. Healthy people can visit us as long as they wash and sanitize their hands and refrain from smoking. But, we cannot go anywhere but the hospital. When we get to the Doctor's office, we have a special note so we don't wait with the rest of the patients. Our biggest goal is to keep Matthew healthy. Because of how narrowWhen we finish this round of isoloation, another starts with cold and flu season in November. We will be able to visit for holidays as long as no one is sick and it's a smoke free house. We've been told over and over by the nurses, neonatologists and pediatritions how important it is to stay away from those that are sick and cigarette smoke. Matthew's air way is the size of my pinky. A simple cold or respiratory virus will block his airway and require rehospitalization. Not even remotely close to something I want to experience.

Does it suck? Heck yeah it does. But, it's such a small price to pay for such a handsome little boy.

It does have it's advantages. We used to always be on the go. On the weekends we spent maybe an hour or two at home both days combined. During the week, we were rarely home. Now that we are home, and stuck here, Kaitlyn spent the first few days constantly asking "where are we going?" And when I would say "no where" she would look at me quizzically and say, "no mommy, WHERE are we going?" as though I misunderstood her.

Now that we are home more Kaitlyn has more time to play with all of her thousands of toys (and of course make a mess of them), we have more time to rest and we all have more time as a family to read stories, watch movies and sing songs. Kaitlyn has figured out her favorite place is the bathtub and easily takes 3 baths a day now so she can pretend to be the Little Mermaid. And really, our door is always open, anyone that wants to see us can whenever they want :)

Boy howdy this got long fast. I've had so much time lately to think and it's nice to finally be able to put all my thoughts in order and make sense of the all!

Wednesday, September 5, 2007

Matthew's First Doctor's Appointment

We're back from Matthew's first doctor's appointment since being discharged.

Matthew's goal was to gain 1 ounce per day since leaving the NICU. He is up to 6 pounds 8 ounces which means he's gaining about 1.3 ounces per day which is AWESOME! The ped was really surprised and happy I was still breastfeeding. Evidently, mother's typically go to formula after the first 2 weeks in the NICU.

Matthew is also getting long. He is at 19.5 inches long! That's an inch and a half of growth in a little over 4 weeks.

When Matthew is measured against growth charts, he will be measured by actual age and adjusted age. Right now, his actual age is a month (as of tomorrow!) and his adjusted age is 37 weeks gestation. That's right, he still has 3 weeks before he'll even be born. So, for the next three weeks, his adjusted age will be newborn.

For his actual age, Matthew is in the 3% for weight, 3% for height and 97% for head circumference! For his adjusted age he woud be in the 21% for weight, 43% for height and off the charts for head circumference.

Matthew will be seen every week for weight checks for the next couple of months, then every other week for the next few months all to monitor his weight.

On Monday morning, Matthew will be circumsized. We're hoping the appointment goes well and he is feeling fine right after.

When Matthew is 4 months actual, he will be seen by a specialist to verify that his feet, ankles and hips all developed properly. With the combination of being a pPROM baby and frank breech, the chances are high that he might need help but we won't know anything for a few more months.

Sunday, September 2, 2007

Matthew is HOME!

After 91 days of being regulars at Mercy San Juan and 26 days as a resident of the NICU, Matthew is finally home where he belongs.

Yesterday, we took a CPR class with Kaitlyn at the hospital and then he was free to go home with us.

He passed his car seat challenge, which is great. He hasn't had any apnea spells which is even better news.

We were given our long list of discharge instructions before we could verify he was our son and we could take him home.

Some of the things we were told included being sure not to take him to any public place for at least 2 months, to make sure that EVERYONE that visits washes and sanitizes their hands before touching him, make sure that anyone who sees him that smokes washes their hands, face and changes thier clothes. We want to be sure that no one kisses his hands or face. If someone wants to kiss him, the feet are the best place. We need to keep him away from people who are sick, might be sick or have been exposed to sickness.

Matthew will see his pediatrition next week and it's been recommended that gets the synagis vaccine to prevent from getting RSV and everyone in the house (and those who will see him regularly) get the Flu shot this season. He will also probably start iron suppliments.

Because Matthew is a preemie with lung disease, we have to be very careful to keep him healthy. A simple cold can easily result in him being readmitted to the NICU and that is not something we want.

Our first night was good. Matthew likes to be held. All the time. The only way he would sleep is if he was held. He's eating really good. We're nursing and following up with some Expressed Breast Milk just so I know he's getting a good amount of food.

Kaitlyn adores him. She wants to check on him all the time.

If you want to come and visit, give us a call or e-mail :D

Saturday, September 1, 2007

We're Home! :D


We're home!

Matthew's cultures came back this morning clean and clear so we were discharged. We are all glad to be at home and hope to never return again!

We will be following up with Matthew's doctor early next week to make sure everything is still ok.

The PICU doctor talked to another specialist regarding Matthew's bilirubin level. It appears that everything is in working order. He did say that ocassionaly, breast fed babies are higher in bilirubin longer. He said we could take a few day break from breastfeeding and see how he does, but it isn't worth giving formula. The benefits of breastfeeding far outweigh any negatives of jaundice at the level he has.

Of course, once again we are on house arrest. We are more than welcome to visitors! Just be sure you aren't sick, haven't been exposed to illness and refrain from smoking before visiting. With Matthew's immune system and lungs as weak as they are, we have absolutely no desire to return to the hospital anytime soon.