Some of you have heard of me an others probably have no clue who I am...lol Well my name is Dusti I am 27 an I am currently raising 5 children by myself. My oldest
Shaila is
7, 11-04-99, I have twins
Mataiah (Medical Needs) and
Kiyah they are
5, 10-24-02,
Aica is
2, 12-28-04 an my lil
Sacarii (Medical Needs) just turned
1.
*Ok, forgive me theres alot of issues with these LO's of mine an I might forget some details an have to come back an edit
*HINT... anything light Purple is a direct link, you may click on it to find out what the diagnosis is.
My Pregnancy with Shaila was complicated with
Partial Placenta Previa and
Toxemia. The Placenta previa ended up fixing itself as the months went by, an the Toxemia just ended up getting worse. Fortunately Shaila was Full term at this point an after only 4 days of bedrest in the Hospital she was born vaginally healthy as can be. weighing 7# 9oz
My Pregnancy with the twins was a lot more complicated then my first pregnancy. At 16 weeks we discovered not only were we pregnant with twins but there were problems. They had
Twin-to-Twin Transfusion Syndrome. And to top it off the leaking of fluid wasn't feminine discharge as the hospital had told me but my amniotic sac had ruptured calling this
P-PROM. As well as those problems I developed
Pre-eclampsia. This was a very difficult pregnancy for me, they continued to tell me due to the severity of the TTTS the pregnancy wouldn't make it because the donor twin would eventually pass away in which would make the other twin pass away. I ended up in the hospital due to the severity of the preg an my BP @23 weeks. I made it all the way to 33 weeks before they decided to take the babies, after many Turb shots to stop contractions. I had started slightly bleeding towards the last 4 weeks an then one morning the contractions wouldn't go away so they decided to get the NICU ready we were haven us some babies, so after 3 months of hospital bedrest my twins were born Via C-sec due to the positioning (vertical). They cut my uterus horizontal, an my stomach vertical. leaving me to only have children by c-sec in the future.
Mataiah was born 1# 15oz an Kiyah was 4# 12oz. Kiyah was born crying her only NICU issues were Apnia and came home on an apnia monitor. 2 months after she was born we found out that she had a
Double aortic arch right vascular ring she had open heart surgery to fix this. It was awful I had one baby in one hospital an the other baby at another hospital, never the less my milk supply dried pretty fast as stressed as I was.
Now Mataiah, Due to my water being broke so long Mataiah didn't have the amniotic fluid she needed during the pregnancy to mature her lungs on the
AFI (amniotic fluid index) she had 0 to barely any through the pregnancy. they told me she would not live long after the umbilical cord was cut. while Mataiah was in utero an no fluid to move she was born with contractures through out her body, this was called
Arthrogryposis multiplex congenitis. Her legs were bruised an very skinny, she had clubbed feet as well as her other limbs were all bent kinda funny. She had a rough NICU life, she needed a
trach and a
G-tube. She was on the ventilator for 7 months an came home from the NICU at 8months old with oxygen. she also came home with Nursing care, so we have nurses in the home at that time 24hours a day.
Now to catch you up to today. Kiyah has High blood pressure an had also got
Pulmonary Valve Stenosis due to them tieing off the weaker aorta, our last us showed that it had fixed itself. we then learned she had High BP an developed
Coarctation of the aorta which we monitor with U/S. Now Mataiah has the same medical problems, we go to Shriners a lot for structural repair on her bones an joints. She still has her Trach an feeding tube. An gets 16 hours nursing care a day. She don't walk or talk an has brain damage from lack of oxygen in utero. Mataiah has over 30 diagnosis's half of them I don't even remember anymore unless someone brings them up so over time you might see me pop in an say " oh ya!" lol I do remember 2 of them. *Suital Balbar syndrome I can't remember the spelling an cant find it in Google. I know this has to do w/ her not swallowing
and Pierre Robin Syndrome . She does have a palate but has a really high arched palate.
My pregnancy with Aica wasn't bad compared to the others, he went full term an I was on bedrest at home because once again I had Pre-E but it only landed me in the hospital a few times, he was born FT vias C-sec weighing 8# 2oz. Healthy baby boy!
My pregnancy with Sacarii was an emotional night mare. Thank god for these women because I don't know how I would have made it w/out them. When I was 15 weeks preg I started bleeding. When I was 16 weeks I started leaking amniotic fluid. By 20 weeks my water fully ruptured. So once again I faced the issues of PPROM, Pre-e an now
Partial Placenta Abruption. I had bled on an off hard an lil clots through out this time. At 22weeks I went to L&D thinking it was time due to the severity of the bleeding. The Dr. then gave me the option to deliver the baby knowing it wouldn't be viable to just finish the inevitable. I couldn't do it, I had to give my baby a chance even if it meant pro longing my pregnancy to have the placenta fully abrupt an my LO pass on, but u know what thats a risk i was going to take, I wasn't going to give them permission to deliver my baby when God hadn't made him come yet. So at 24 weeks once again I went on bedrest. Monitoring his decels due to no fluid an pressure on the cord as well as bleeding like mad. Then i made it to 27 weeks when I woke up an was bleeding so bad an contractions were there full board, so Sacarii was delivered weighing a whopping 2# 9oz. After words the Dr. said the placenta peeled in 3 places.
Shortly after birth he developed a
Grade 4 IVH, which is the worst u could get. The good thing is it was only on the left side. He ended up loosing half of his brain due to it dieing off an desolving into his system. He then had numerous procedures to remove the x-tra fluid of the brain from the
Hydrocephalus. Eventually when he was big enough he got a
Shunt. They even have cool ones that are
programable. Then shortly after he ended up needing a G-tube as well. after 4 months of NICU misery an almost loosing him a few times he came home.
He has had an awful year of life. You have to watch his montage an you'll know what I'm talking about. The newest discovery is a cyst on his brain, we are currently watching it an making sure it don't cause any more pressure on his brain . The Dr's say its in a spot that they don't want to operate, so all we can do from here is pray! He has also been diagnosed with
moderate/severe Cerebral Palsy an is on
Baclafin to help keep the stiffness under control. As well as having
Epilepsy from the brain damage an being on
phenobarbital to control the seizures. He still has many
tremors though but are semi under control. I sometimes think it's cute because you know how if u rub a dogs belly sometimes they start kicking there leg uncontrollably, well thats what he does most commonly.
Well that basically sums up my children's medical needs, an I'm sur eas I think of things or others remind me i'll come n here an update or edit.
Here is the family Photo of me an my children
Here is Mataiah an Sacarii's Montage's
<a href="http://www.onetruemedia.com/shared?p=29b6a801b54f1cfdf13add&skin_id=601&utm_so urce=otm&utm_medium=image" target="_blank"><img src="http://www.onetruemedia.com/cover_thumbnail?p=29b6a801b54f1cfdf13add&view=2" border="0" alt="View this montage created at One True Media" title="View this montage created at One True Media"><br/>Mataiah</a>
<a href="http://www.onetruemedia.com/shared?p=1ac88f560f408f724d1563&skin_id=601&utm_so urce=otm&utm_medium=image" target="_blank"><img src="http://www.onetruemedia.com/cover_thumbnail?p=1ac88f560f408f724d1563&view=2" border="0" alt="View this montage created at One True Media" title="View this montage created at One True Media"><br/>The fight for life</a>
Im NEW w/ 2 special needs children
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