"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family."--Author Unknown

Tuesday, May 18, 2010

Whoa, That's a Lot of Money!!

Well, now that things have somewhat calmed down at our house (keeping my fingers crossed it stays that way) the bills have started coming in. Josh's hospital stay complete with ambulance ride and ER visit came to a grand total of almost $10,000. My 9 day hospital stay (not including the doctor's fees which are separate) came to a grand total of almost $19,000. The real kicker came yesterday in Noah's NICU bill. His 4 week and 1 day stay came to a whopping $104,217.90. It was a good thing I was sitting down when I saw that bill. Now that bill does not include the breast pump, his apnea monitor and oxygen rental either. It is a good thing we have health insurance is all I can say. I can say he is worth it, though.In other happenings Noah had an appointment yesterday with the pediatrician. His weight is up to 7 pounds 7 ounces from last weight of 6 pounds 9 ounces which was 12 days ago. Since he is gaining weight I can now nurse him exclusively all feedings except for two bottles fortified with extra formula a day. Our next visit is in two weeks and that visit we will start to talk about getting him off the oxygen and apnea monitor. The doctor didn't even want to broach that subject until he was 40 weeks gestational age wise which won't be until this Friday. It is crazy to think I should have still been pregnant with him until Friday. Anyway he is doing well and loves to be held. Since he will definitely be my last baby (I don't think we and everyone else could handle it if we had another one) so I am going to spoil him rotten and hold him a lot ;).

Saturday Josh kept complaining of having a headache. I kept telling him he was fine and to stop complaining. Well I ended up eating my words when I felt his forehead and he was burning up. Since any fever can lower his seizure threshold and I definitely don't want that to happen since it was so hard to get him under control before--I took him into the doctor. Why do kids always get sick on the weekend or at night or both? Luckily he just had Strep Throat which is easy to treat. I didn't want to mess with going to the pharmacy so I asked if Josh could get an antibiotic shot instead. Josh was not happy with me, but he is feeling a lot better and I don't have to mess with giving him his antibiotic twice a day or forgetting it twice a day which happens more often than not.

As for me I had the fun experience of getting the stomach flu yesterday complete with a fever. I couldn't keep anything down, but I am feeling better today. I am still not back to myself, but definitely feeling better today than yesterday. Since I couldn't be too far away from a bathroom, Aaron ended up taking Noah in for his appointment with the pediatrician yesterday. Aaron mentioned I had the stomach flu and the pediatrician said it was going around, but should be better in 12-24 hours. It has been 24+ hours and I am still having symptoms, but it is getting better. I guess we got to keep things exciting. I am ok with that as long as it doesn't include a hospital stay for anyone...THANK GOODNESS FOR HEALTH INSURANCE!!

Saturday, May 15, 2010

The Price of Beauty

The other morning things got a little too quiet and that usually isn't a very good sign. The silence was then broken by screaming from Sarah. I waited a little bit to see if the screams would die down, but she continued to scream so I went to see what the problem was. I found her perched on my sink with my noxema bottle opened and it smeared all over her clothes, neck, hands, hair, mouth, nose and eyes. I then looked around some more and saw where she had smeared it all over my mirror, bathroom counter and sink. AWESOME!! She was screaming because she had gotten it in her eyes and I am sure it must have burned. I undressed her and threw her in the shower (her second one for the day). She has seen me wash my face with it so I guess she wanted to try it out for herself, too. It must have really hurt because her eyes stayed red for a few days afterward.Lately Sarah has been really into shoes. She has had some interesting combinations on such as a snow boot on one foot with a church shoe on the other. She loves to try on everyone's shoes. G&G M went to the store and found her some princess shoes. She tried them on and LOVES them. She loves to wear them on the hard floor in the kitchen and living room because she likes to hear them click as she walks. I love having a girly girl!

Thursday, May 13, 2010

Preemie Sydney, the Newest Member of the Family

Jill's baby, named Sydney Taylor Nelson, was born Tuesday around 5 pm. Jill's water had broken that morning and her labor progressed to the point they couldn't stop it. Luckily, Jeff, her husband, was able to make it in time for the delivery. Jill was 27 weeks and 6 days pregnant so her little girl was pretty early. She weighed in at 2 pounds 13 ounces and was 15 inches long. She is currently in the NICU, but doing pretty well considering how early she was. I got to meet her for the first time last night and she is very little, but very cute. Jill is doing fabulous and is excited to finally be able to get out of bed and walk around after two weeks of complete bed rest. They guesstimate Sydney's discharge date around Jill's due date which was August 4th so Jill will be staying with us for a while until she can go back home to Texas. Here's some pictures of Sydney:
This picture shows her with her biliruben mask on. She is under the biliruben lights since she was jaundiced and the mask helps protect her eyes.
All the nurses know me and Jill since we have been going almost every day to the NICU since Noah was born. Sydney's nurse, standing next to me in the picture, took care of Noah too while he was in the NICU.

Monday, May 10, 2010

Mother's Day with Boys

You know you are a mother of boys when your home made Mother's Day card is filled with the words "poop" and "butt". Here's what Josh's home made bookmark said, "Dear Mom, I love love you and baby noah who sleeps a lot hiccups a lot who poops a lot." His card said, "Mom, your the best mom in the whole white (wide) world. I love you more than my tummy and my butt. I love your coking (cooking) I even love baby Noah, by Josh". On the other side of the card he drew a picture of him giving me the card and saying happy mother's day and me receiving the card saying I love it!!! Where these kids come up with these things I don't know.
For Mother's Day I ended up taking four kids to church with me alone (Matthew, Josh, Daniel, and Sarah). Boy, the people behind me in the chapel sure got a comedy show while watching me trying to keep them all quiet. I stayed because I wanted to see the boys sing their Mother's Day songs in sacrament meeting. I love watching them up and stage waving and excited to be up there. However, I was exhausted by the end of sacrament meeting, though. Wrestling with all four kids is not too easy--I can't wait until Noah will be thrown into the mix...Anyway, when we got home we all had some quiet time and then Aaron fixed me dinner which was a nice treat. He also had thought ahead and with the kids help picked out and ordered me a special Mother's Day cake which was sweet. He also let the boys pick out a small present for me from down the candy aisle--and no I didn't share :). It was a good Mother's Day.

However, later on it got a little bit scary after I got a call from my sister-in-law Jill who was having quite a few contractions that they couldn't stop. They ended up transferring her from antepartum over to labor and delivery to watch her very closely. They threw everything at her they could to try and stop the contractions coming about every 3-5 minutes apart throughout the night. After a long and exhausting night they finally stopped/slowed this morning. Unfortunately, she will be spending the next 48 hours over in labor and delivery for close observation because she has progressed a little more than where she was at two weeks ago. She is only 27 weeks and 5 days pregnant which is pretty early for her baby to come. We are hoping and praying things will settle down and she will go back to having a long BORING hospital stay instead of this preterm labor thing. I guess her little girl wanted to meet her Mom for Mother's day, but we are hoping she waits for a lot longer.

Wednesday, May 5, 2010

I'm a Mad Chemist and Some Preemie Issues

Or it seems that way when I am mixing up Noah's food. While in the NICU he didn't gain as much weight as he should have so they started supplementing his food with extra calories. To keep him gaining weight they sent us home on the same schedule and it is crazy. They say I can nurse him every other feeding, but for the in between feedings he needs to get some different concoctions. He needs to get two formula bottles a day with the special high calorie formula for preemies with a special thickener mixed in. The other bottles he gets needs to be breast milk with a half a scoopful of the high calorie formula per 3 ounces of fluid. However, since he has reflux issues we have to add a thickener to it to help him keep his feedings down. To mix the thickener up we have to add one package of thickener per 8 ounces of fluid. So between adding the half scoopful of formula with the thickener it can get a little confusing. I even had to explain it to the pediatrician because he didn't quite understand it either. So to start out the day I have to defrost some breast milk, mix in the formula and then mix it with the thickener. Then I have to mix up the formula bottles with the thickener so our fridge is full of bottles for Noah's feedings. It is crazy!! It makes me feel like a mad chemist with all the mixing ;). He still is not waking up so we also have to wake him up every 4 hours and make sure he eats the whole bottle. Since he doesn't get the thinkener when he nurses I am supposed to hold him upright for about an hour afterward. I guess that's when Noah and I get our bonding time in as I try to ignore all the chaos around me.
As for our first night last night...it wasn't very restful as you can see from my face in the picture:His apnea alarm went off a ton of times--I lost track after about 7. When that alarm goes off, let me tell you, it is loud and shrill enough to wake the dead or give you a good scare. A few of the episodes were because his heart rate dropped too low and the other times it was because he stopped breathing. He mostly recovered on his own, but a few of them required me stimulating him in some way--either rubbing his cheek or flipping his feet. Then early this morning the apnea monitor started going off because the lead had came off his chest and stuck on to his arm. It was alarming because it couldn't pick up his heart beat--ya, that was fun. I did take him into the pediatrician's office today because they like to see him as soon as he gets home. It was crazy trying to balance the oxygen tank, apnea monitor, diaper bag, purse and car seat. By the time I got into the pediatrician's office all the wires and tubing was hopelessly tangled up in knots. Oh well what can you do? One nice thing about him being a preemie is we don't have to wait at all in the waiting room, they get us right back to a room ASAP. I don't even have to sign in before we are whisked back to a room. AWESOME!! They certainly know my family at that office. As soon as they saw Noah they then asked if he was an accidental home birth, too, but I can thankfully say NO!!! The pediatrician looked him over and he looked great. We get to go back a week or two for a weight check to make sure he is gaining. If he is gaining then we can talk about changing up his mad chemist diet (see above paragraph). Unfortunately, he will continue to be on oxygen and the apnea monitor for a while. For tonight, we are keeping our fingers crossed for a quiet, peaceful night without any scares and alarms...How's that for wishful thinking?

Since Noah was a preemie there are a few extra concerns for him. Preemies can have issues with eye muscle development so they have an increased chance of having cross-eyedness and lazy eye. We have an appointment set up for the opthamologist for November to get him checked out. We also have an appointment with the developmentalist for November to make sure he is on track for his adjusted age in his development. Since he was 7 weeks early we can count on him being about 7 weeks delayed in hitting his milestones. Hopefully he won't be any more delayed than that.

Anyway Matthew and Josh were excited to meet Noah for the first time yesterday. As for the rest of us we are just in "survival mode". I didn't even get Sarah dressed today or do her hair. Because she didn't get dressed she went and found her own accessories to go with her nightgown. I took a picture because I thought she looked so funny with her mismatched shoes (on the wrong feet) and the cowboy hat.

As for me if I turn up missing just look for me in my laboratory (kitchen) mixing up some crazy high calorie concoctions in a delrious, half awake state while trying to silence the alarms :).

Tuesday, May 4, 2010

Ready or Not Here He Comes...Home

Yup, we finally got the ok to bring Noah home. We had to pass off our infant CPR and sign a bunch of papers saying we can take care of him and then they let us strap him in the car seat and leave. He looks so teeny in the car seat. As of last night he is only 6 pounds 4 ounces so he's still pretty little. So far Daniel and Sarah have been the only ones to meet him because Josh and Matthew are still at school. Daniel loves him, Sarah she doesn't quite know what to think about him yet. I brought him home and fed him only to have his apnea alarm go off twice because his heart rate dropped too low. He still scares me, but he has done ok so far and recovered himself back to normal after both alarms going off. I know it hasn't been that long since I brought Sarah home as a newborn, but you forget about all the little grunts and groans and little noises newborns make. I still can't believe Noah is here, but it helps when I can hold him and feed him on my own schedule rather than the NICU's schedule. The kids all drew pictures welcoming Noah home this morning. Also yesterday at Monica's house they all drew pictures welcoming Noah home as well so we have lots of decorations celebrating the fact that he finally is home. Aaron even went and got some blue balloons to hang up and Sarah was overjoyed this morning when she woke up and saw the balloons. Anyway here's some of the pictures from today:Here's his bed at the NICU:Noah taking his first car ride. He looks so little in his car seat!Sarah and Daniel meeting Noah for the first time.
Sarah still doesn't know what to think about him yet. Now we are just waiting for the Home Health company to bring his oxygen tank and apnea monitor supplies. I have his first pediatrician's appointment tomorrow. That should be fun with all his equipment as well as Noah and a diaper bag in tow.

Sunday, May 2, 2010

Rooming In

The NICU has deemed Noah stable enough to come home tentatively for Tuesday morning if all goes well. To make sure we can care for our child at home we get to have a "rooming in" experience. We get to stay in a room outside the NICU with Noah and take full care of him for 8 hours while he is not connected to any monitor except the apnea monitor and his oxygen--the only things he will be connected to at home. All the apnea monitor shows is if his heart rate is too fast, too slow or if he stops breathing. Seeing as I am already scared of this child, we have been here for almost three hours and the apnea monitor has gone off 4 times already. Three times for him stopping breathing and one time because his heart rate went too low. I called the nurse and she told me when the monitor goes off just look at him and make sure his color pinks up if he happens to be dusky or blue. Flip his feet, or stimulate him if he is blue and doesn't recover and turn pink on his own. Although we had to take Daniel home on oxygen and the monitor he never had problems like this. They are saying Noah is refluxing (his milk is not staying in his tummy and coming up the back of his throat) and he holds his breath to protect his airway. Sometimes if they hold their breath for long enough it will drop his heart rate. Nothing that a little foot flipping can't solve, right?!? Anyway here's our little slice of heaven room right outside the NICU: Also here is a picture of Noah without his feeding tube in: