Monday, January 21, 2008

Check out this video

It is wonderful...Terri

Loves and Hates

I was tagged by Michelle, Elliot's mommy:

Things I Love:

I love being a stay at home mom...this is the first year in 24 years that I have not had a job, other than taking care of my babies, family, and home.

I love being a mother of 4. (and to think I was going to stop at 2)

I love math and miss teaching.

I love cold, chilly weather...days like this, the kids climb in bed with me and we snuggle.

I love my wind down time at the end of the day.

I love to cook.

I love to sew, but don't have much time with two little ones under foot.

I love selling on ebay. and buying, too (got a bumbo, in perfect condition for $24. that included shipping!)

I love scrapbooking, even though I am new at it. Hobby Lobby has wonderful sales on items each week.

I love that Sam has Trisomy21, it is because of him that I am who I am now. Before, I was a workaholic (money-holic) and family didn't come first. It is because of him that I realized how important family is.

I love my husband, even though I may not like him or his ways sometimes.

I love Hannah, Sam's PT. She is so wonderful with Sam.

It's hard to name all the things I love. There are so many.

Things I hate:

I hate that my mom (the one who raised me, not my biological) died November 18, 2007. She bragged to everyone, (even her own children) that she finally got a grandbaby that accepted her the way she was and didn't cry everytime she held him (Sam). I believe he was her favorite out of 10 because he never fussed at her and he went with the flow. He "talked" to her, cooed and stared at her intently...(sorry, I have to take a short break)--I truly miss my mom.

I hate that my teenage daughter is so stuck up her boyfriend's a**, that family comes second. I believe that their relationship is co-dependent...she always feels like she has to take care of him.

I hate confrontation...I like my life calm and without incident. (Many have told me that that is a downfall because I sometimes don't stand up for what I believe--unless I feel it is worth standing up for.)

I hate PMS...I can be a biotch during this time and have to watch myself.

I hate cleaning up after I cook. I can find lots of other things that I would rather be doing.

I hate that many people feel they have to belittle and harm others to make themselves seem better than others.

I hate that you have to take time out of your day to sleep...I have so much to do and that I want to do....sometimes I feel so disorganized.

These are a few of the things I hate...

I will let you know who I tag......

Saturday, January 19, 2008

Continuation of Sam's story

Okay, when I left off last, we had gone to the lab at 4:30 in the morning, got a good lab and headed south to be with my older children for a few days...

Well, as the doctors had told me to do, I sunbathed Sam all weekend...we returned Tuesday morning for the followup...this time, they drew the blood at the doctor's office...Sam was also weighed...he had lost more weight, now 5 pounds 8 ounces...he had dark circles under his eyes...what was I to do...

Sam's pediatrician suggested that he was not getting enough nurishment with the breast milk. I told him that I would do whatever I needed to do for my son. So, I began alternating feedings...One feeding breast, the next feeding high calorie formula, next breast, and so on throughout the day.

When I started this process, I soon found out that I was not producing much milk, I would pump for 30 minutes on each breast and only end up with about 2 ounces of milk. So ultimately, I was starving my little Sam. I continued to alternate nursing and bottle feeding and pumping, hoping the milk would flow...I did this for 6 weeks, before I gave up and switched to formula.

I felt so guilty, he was the only one of my children that I had let down...I breastfed the others for the first 18 months of their lives...more on this later...

Back to the Billi test...his results came back elevated again...14.9...the doctor started looking for other causes...He looked at the direct and indirect billi and saw something that concerned him...said he needed to be refered to Arkansas Children's Hospital for a GI scan. The pedi talked to the GI specialist and they put Sam on two meds--to help Sam's system rid itself of the billirubin.

They thought was that Sam may have Billiaryatrasia (sp). more on this later.

I was to still sunbathe Sam, continue alternating feedings, and have him weighed every 3 to 4 days...Well, I had to return to south Arkansas. The pedi said I could have Sam weighed at the Health Department. May 25, wt 5#11oz. at CCHU.

Returned to Conway on May 29. Another lab test, this time billi was good...meds working, continue with meds (they had "kick started his liver")...wt 5# 12oz.

June 1st weight check, 6#5oz...June 7th, Sam's one month old, wt. check 6#6oz...(1 1/2 ounces above his birth wt)

June 7, Sam was evaluated at Pediatric's Plus for PT and OT...did not qualify according to the scale they have to follow...however, they gave me some pointers about what I could work on...OT let me know that it was not totally my fault that I had a hard time feeding him...he had low muscle tone, which included his mouth and tongue...she taught me how to support his chin so he could get better suction. She also suggested that I change the type of nipple I was using on the bottle so that he could feed without wearing himself out. Re-evals scheduled for 3 mos.

On June 8, Sam and I met with Bettye Starkey, the DDS Coordinator for this area...She was very helpful in telling me about the services available to Sam...She gave me all kinds of paper work to fill out...some to help get Sam a caregiver that comes in and keeps him while I run errands (I haven't filled this out yet, I don't feel that we need it.), Medicaid papers, Tefra papers (Tefra is for people that make too much money to qualify for covers everything that medicaid does, you just have to pay a monthly premium for it like you do health insurance)...She also gave me a copy of all the laws that cover disabilities.

She is a great advocate...I have called her several times...even a couple of times in tears....

Well, my 17 year old daughter has come in here 3 times, "needing the computer" but "in no hurry" (lol) So, I'm gonna say more later....

Monday, January 14, 2008

I know this may be boring to some but...

I want to record my here goes blog #2...I will take all advice and not write my paragraphs without taking a breath (lol).

Back to Sam and the morning he was born...

After a few minutes, I asked how my son was breathing. His O2 sats were holding their own at 98%...

Next, I asked about his heartbeat and if she heard a murmur, the nurse told me his heartbeat was strong and she did not hear a murmur...

Next, was the wt. question...6 pounds, 4 1/2 ounces...(no wonder he came out so easy, lol)

The nurse asked me, why do you want to know all this stuff...I responded, because he has Downs and I want to make sure he will be able to stay here and not be life flighted to Little Rock...the nurse said, no he doesn't...I said well the amnio said he does...she said, you're kidding...this baby looks normal...I said, why would I kid, he is normal, he just has DS...she turned to one of the other nurses and said, did you know this baby has Downs...and on it went from nurse to nurse...I do believe that every nurse on the floor came to see him and let me know that they didn't think he had downs...(guess they know more than the geneticist)

When my doctor showed up, she examined him closely and told me he looks good, Terri...He can stay here...I was so relieved...Not only did he get to stay in the little town of Lake Village, but he got to room in with me...The only thing they could find wrong was that he failed the newborn hearing test in his right ear...We were finally allowed to leave the hospital at 9:45 pm on May 08, after alot of negotiations with the doctor and begging by me...Sam went home with me...

The doctor made me promise to get him to a pediatrician ASAP for a complete thorough checkup...Since I knew we would be moving, Sam, Michaela, Jakob (yep, I let him skip school) and I followed Paul back to Conway...Paul went back to work on Thurs, May 10, and we went up on Friday morning.

We found the greatest Pediatric group in Conway...They saw him that Friday, May 11. The result of the visit was that he looked a little jaundiced, so they wanted to do a billi test...It was 15.2...wanted him to repeat labs on Tuesday, told me to sunbathe him in the meantime (which I did)...I returned to Montrose for the weekend...Monday, I drove back to Conway...repeated labs on Tuesday...Billi was 19.8...

Doctor said no choice but to hospitalize and put him under the his second hospital stay began on May 15...

When he checked into the hospital at 4:15 pm on the 15th, he weighed 5 pounds, 14 ounces...I asked what I could do to help him...I was told that the billirubin would drop faster if I gave him formula instead of I fed him from a bottle and pumped...This combined with the billi-lights, worked 5:30 pm. on the 16th, his billi was 11.9, he was released with the understanding that I bring him back for a repeat lab the next day and return to the clinic on the 22nd...and, Sam took right back to the breast that night.

Repeat lab on 17th (4:30 am--I needed to get back to my two children in south Arkansas as soon as I could) 10.9...So we drove back "home" and stayed there for the rest of the week.

More later...

Sunday, January 13, 2008

Lots of changes in my life

have occured in the last 11 months...February 14, I got a Valentine gift from my OBGYN...she called me and I missed the call...she left me a message to call her back...I returned the call at 5:05 pm. Her office was closed...I left a message...She called me at 9:13...said she was at the hospital delivering a baby, and decided to stop in her office...She saw that I had called, so she called me back. She new that I was waiting on the results from my amnio...they were back...She said, you know we talked about the possibility of DS...I said yes...She said the results were that the baby was a boy and he was positive for trisomy 21 (DS)...I started to cry, but I don't know why...she talked a while longer and told me to schedule an appt and we could do another ultrasound to check out his heart. After a few moments we hung up.

Brianna (16 at the time) was there with me...she comforted me and we talked...I had known about the possibility of DS and had been okay with it, this is why I didn't know why I had cried. Maybe it's because I knew what he would face, maybe it's because my husband was gone, maybe it was the actual shock of knowing for sure.

My husband...
We had kinda separated back in September...he moved 3 hours away "for a better job." The pay was not enough to support his living expenses and bring home enough to match what he had before with the "lower paying job." I was left with 3 kids, the house, the bills (I wanted to protect my credit rating), and all.

I found out 2 weeks after he left that I was pregnant...he started coming home every weekend (another expense, with gas being the price it was) So, basically we went to being weekend spouses. His plan was that when my contract was up the following June, we would all relocate to central Arkansas.

So, as I said, when I got the news, he was not there. I called him to tell him and his response was okay, I need to to get in bed. He never wanted to talk about it, not then, not later...always brushed the subject to the side.

I decided to name our child Samuel Aidan M., S.A.M. for short.

A little side bar, Sam's birth...

Samuel's due date was May 31...Paul came home on May 4. He left at 4:30 on Sunday, May 6. Sam decided not to wait until May 31...I had been feeling discomfort and achy most of the day, but when I moved, I felt 11:30, I felt like I had to go to the bathroom...Then, I felt like I couldn't get off the toilet, so I called the hospital from my cell phone and told them I thought I may be in labor...They said come in and they would check me...well, I couldn't get, I started hollering for my 16 year old daughter. She was asleep and I couldn't get her to wake up...I finally called her cell phone, after calling it 3 times, she finally answered. She came and helped me off the toilet...she then got my 2 year old up and took her to the sitter while I started to get my 9 year old up...I called Paul, told him I may be in labor...we agreed I would call him back when I knew for sure. I gathered clothes for Jake and was on my way to the bedroom to get him up when the first hard labor pain hit...I caught myself on the back of the sectional to keep from collapsing to the floor...I look at the clock...12 midnight...I made it to the bedroom and got Jake up...he got dressed and we headed for the door...another pain...Jake helped me out the door. As we got to the edge of the porch, Brianna came flying down the road in my van...I made it to the I raised my leg to step into the van, my water broke...I called Paul to tell him to come on (he was 3 1/2 hours away)...I then called the hospital back and told them my water just broke and they needed to call Dr Henderson and get her to the hospital ASAP...well, my daughter was almost hysterical and made a 18 minute trip in 11 mins...she drove up to the ER and ran in to get a wheelchair...2 nurses came out and asked me if I could get in the chair...I said in a minute when the contraction ends...I asked about the doctor, they said she wasn't there yet...I screamed well she's just not going to make it then, how far away from this hospital does she live...(it was about 12:30 am)...I got in the wheelchair and another contraction started...The nurse told me that they had to check me to make sure I was in labor before they could call the doctor...they wheeled me into the exam room and I was finally able to get on a gurney...I was in hard labor...the nurse put on a glove and did the exam...she flew out of the room to call the doctor...she came back and I asked for Stadol and how far am I...she said we have to move you to the birthing room first you are at 8 cm...I screamed, no I want it now, when we get there, you will tell me it is to late...Another pain hit, the nurse yelled at me breath through it, I tried, we started down the hallway and another pain, breath through it said the nurse...I tried...I felt pressure, I breathed, I felt a pop, no pain, I said oh, I can do this, euphoria had set in, we made it to the birthing room, the nurse asked me to move from the gurney to the bed, pain hit, she screamed breath through it, I felt Sam moving, I said I'm sorry, and out slid Sam at 1:37 am...The 2 nurses started running around, one ran to the door and screamed we need a heating bed, we need suctioning, help....All of a sudden, there were 8 to 10 nurses in the room and still no doctor...The baby delivered, the placenta delivered and 10 minutes later the doctor shows up...I looked at her and said, I called them at 12:10 and told them to call you and they didn't until after I got here. (I know, maybe TMI, but I love this scenerio...I had thought about delivering at home, but we didn't know the extent of the DS and what birth defects he may have.)

Sam was anxious to join his new family...he came 24 days early and made the last leg of the journey in 1 hour and 37 minutes. Brianna and Jake were supposed to witness Sam's birth, but were told to stay in the waiting room until I was settled in the birthing room...well, they missed it...Paul got up, packed and left Mayflower at 12:30 and made the 3 1/2 hour trip in 2 1/2 hours...he saw me at 3 am and his son at 4 am.

Now, back to the changes...

I had taken maternity leave on the 4th (had enough sick days built up then to make it to the end of the semester...I am a teacher...I went back and taught 2 weeks of summer school and then the move was on...

We sold our house and left the little town of Montrose on June 24...we are now settled in Quitman in a rent house...we moved so that Sam can get the Early Intervention that he needs...I was unable to find a job so we are now a one income family. Paul got a better, higher paying job, and I qualified for unemployment (but it ends January 31st). Life is good right now, but it soon will be hard...Tax time is coming and we plan to pay off several bills...maybe that will help.

My life is so different now...Thank you SAM!!! You are one of 4 of the best things that have ever happened to me...We all love you so much...Paul has done a 360...The kids are all so important to him now.