Tara in 2006

Wow!  I thought, when I found out I was pregnant with this little bundle of joy.  So I started going to the doctor and my doctor was concerned about me not being able to gain weight with Tara.  Well 2 months later I was fine with the weight gain. No problems came about except for one.  Tara kicked me so hard that I was doubled over, she ended up bruising my abdomen.  I had all the ultra sounds done and nothing ever came about except for her being small, but the doctors were not worried.  So life continues with the regular doctor appointments with no worries. 

Well here comes the 23rd of October.  I'm sick with the flu (so much fun).  Well after being sick all day with the vomiting and the rest of the things that go along with the flu, finally at about 6:00pm I'm feeling much better and relaxed (finally over the symptoms of the flu).  I was getting ready for bed (brushing teeth going potty), then I had to go potty again(11:00pm), this time my water broke.  I called the hospital and gave them all the information.  They said that since Tara is my first baby I didn't know if it was my water that broke (they thought that I was crazy or something)  So before I went to the hospital (not feeling any contractions) I took a shower to relax a bit, packed my bag to go to the hospital.  So they checked me and sure enough I was not crazy, I was right! 1 Week early for Tara to be born.  So they get me ready to have her and they are charting away.  They were watching my vitals all night long.  Well things were not going the way they were suppose to and I ended up getting Pitocin (1:00 pm October 24th ) to  make my contractions harder and make things move.  I could not take the pain and had an epidural.  Wow that was much nicer.  The nurse did not come in to check me when she was suppose to due to friends and family being there.  By the time the nurse came in to check me I had already called and then they came in.  Tara was crowning already!!!!  Finally here she comes my wonderful bundle of joy.  I could not wait for Tara to be here.  She came into the world at 6:04 pm on the 24th day of October.  She was 18 1/2 inches long and weighing 5 lbs 6 oz.  Born at Oconomowoc Hospital in Wisconsin. It was nice for me but then turned to be the worst.  Since every parent expects to have a baby born with no problems what so ever.  Well the cord was wrapped around Tara's neck 2 times and she was blue.  How scary!!!!  They doctors tried to be quiet but I was more concentrated on Tara then they wanted me to.  Tara had to be "bagged" since she was not breathing.  Her heart rate was dropping.  They had doctors and nurses rush in and get her heart rate back up and get her breathing to "normal".  She pulled through!!! Thank God!!  Tara spent 2 days at Oconomowoc Hospital (they had to make sure she was going to be stable enough to be transferred)  Oconomowoc knew that there was something wrong with Tara because of her cry but they could not put their finger on it, Tara also failed her hearing tests they tested her 2 times.  Then they transferred her to Waukesha Hospital where she was in the NICU for 2 weeks and 2 days. 

Week 1 at Waukesha NICU Tara ended up have a PIC line in her arm, IV, a suction tube to clear out the stomach and Oxygen.  She was hooked up to the monitor the whole time.  She had lipids (liquefied fat) and sugar water for the first week.  Tara was not able to hold her body heat and needed more then just the open bed while being hooked up so they had to put her in an incubator.  There she was able to get better.  Tara was born with pneumonia.  So that made things even worse.  Tara also did not have a good suck at all, so breast feeding was out of the question.  Waukesha also tested her hearing and she failed that one 2 times. Tara had multiple blood tests done to check for everything possible.  At this time the nurses and doctors took me into a private room to explain what was going on with Tara and what she has.  They told me that she has a very rare syndrome called CRI DU CHAT syndrome.  They then had me on the phone with the geneticist from Children's Hospital.  She explained a bit of it and then they wanted me to come down and get tested to see if I was a carrier of this rare syndrome.  They told me not to look on the internet for information since it was so bad and harsh (they didn't think I was going to be able to handle it).  They told me that Tara will not walk, talk, hear, eat normally, grow the right way, she would have so many things going against her.  They also told me that Tara would most likely not make it through childhood.  Tara and I would be lucky if she made it to her 5th birthday.  Then they had the guts to ask me if I wanted to "pull the plug" (stop everything for Tara and let her pass)  I was so made and I cried and cried.   Week 1 went by (seemed forever).

Wow what kind of news is this to a first time parent at the age of 20?  Shocking? Freighting? How would you have handled it?  The way I did? Yes I cried!  I was scared, but more determined to find out more about it.  Well this news just made me more determined to help Tara and get through this.  So I had scheduled an emergency baptism, called my pastor before the church service and told him he had to rush up to the hospital and Baptize Tara because of the situation. He did.  So Pastor Schroeder rushed up to the hospital and baptized Tara.  I had asked the church members to pray for Tara and to ask God to help her through this hard time in her life.  Ok so Tara got baptized so at least that was taken care of.  Now just to get everything else taken care of (ways and things needed to take care of her to the best I can .) 

Week 2 at the NICU in Waukesha Wisconsin. Tara was still in the incubator and they were slowly decreasing the oxygen and they were gavage feeding her. They put a tiny tube down her throat every time it was ready to eat (every 2 hours) and they were trying to get her to suck at the same time.  By Wednesday Tara was sucking and drinking out of a Haybermann bottle (special bottle for babies that have a weak suck).  Tara was able to hold her body heat out of the incubator , off the oxygen, PIC line,  and IV by Tuesday the 7th of November.  The only thing that Tara was still hooked up to was the monitor for her pulse, BP, and oxygen.  The 9th day of November I was finally able to bring her home (This day finally came.)  Grandpa Kaun and I (Mom) brought Tara home. 

I went to the genetics clinc and got tested they had me come into the office for family history and to give me the results of the blood test.  How do you think it came out?  Tara was diagnosed to have "colic" (colic is marked by chronic irritability and crying.)  I took her to the doctor and the ER at least 2-3 times a week trying to find out what is wrong.  The doctors (in the ER and her regular doc) said nothing that they can see is wrong with her.  So her regular doc switched her formula allot to see if she was allergic or have bad gas from what she was on.  Tara went through every formula that was out there.  Her doc even paid for most of it since it was so expensive, well that wasn't it either.  So then(6 months later)  we finally got referred to Children's hospital in Milwaukee Wisconsin.  There she was sent to see and ENT and a GI.  The ENT found out that she has Acid Reflux problems badly. At this point Tara would hardly eat anymore since it hurt.  So now she was put on Pepcid suspension to help with the acid reflux problem.  Then the GI sent her to have a swallow study done (1 year later) and come to find out she has been aspirating, when I found that out it finally clicked that was the reason why she hardly wanted to eat. It would take her forever to eat 8 oz of formula.  That was it!  That was the problem.  So on the 25th  of July 2002 she went in to get a g-tube in.  She stayed in the hospital for 3 days.  Wow, what a difference that made!!

Tara is now not considered a colicky baby.  She is still having problems with the acid reflux problems and "freed" from the aspiration problems.  The whole time all this was going on Tara was also going to the Birth to Three program, to receive the therapies PT, OT, and ST.  Tara made great gains in this program along with me working with her at home.  Then she went into the Early Childhood program through the school and now she is doing wonderful.

Tara never gave up and I never have or will give up on her.  Yes it came out that I do carry it, but I don't have a translocation.

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.