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Lydia's Story

    Whether to have another baby as I neared 38 was difficult to weigh.  I had an seven year old daughter from a prior marriage and a two year old daughter with my husband, Steve.  I wanted to experience raising closer siblings and our two year old had an ideal temperament so we decided to go for it.  I was edgy the first trimester that things were not attaching as well as my prior pregnancies and I rested extra to avoid miscarrying.  The second trimester I noticed that the baby flipped a lot one time when I ate a spicy food and seemed not to change position after that, only four or five months along, which I thought unusual.   The third trimester I had gestational diabetes for the first time and strictly kept a no sugar diet.  My blood sugar tested almost low at prenatal visits after that and the baby who had grown rapidly prior seemed to stop gaining anything.  Two months before the due date I had an itchy rash cover my pregnant belly and it took weeks to get treated, so sleep or comfort were that much harder to come by.  Many of these things I noted during the pregnancy seemed to be from intuition as much as science and weren't alerting doctors.  Lastly, I suspected the baby needed to come early.
On April 12th, 1999, my husband and I went to the hospital in the morning and began walking to see if my contractions would get closer.  At 5 p.m. the doctor came and said we should go home because labor wasn't progressing.  I suppose he could see in my eyes that I didn't feel right about not having the baby right then.  But he said they couldn't risk malpractice taking a baby three weeks before the due date.

    A day or two later I had a massive twinge right where I knew the placenta was at on the ultrasound.  (The cause for the stroke was likely a clot from the placenta lodging in the carotid artery to the brain, per the neurologist.)  I thought the contractions would come soon after and waited...a week.  During that week the baby hardly moved, but so many people had told me that happens before they are born that I didn't tell the doctors.  One day I told my husband I was going to go lie down and see if I felt movement when I hadn't felt anything the whole day.  The baby squirmed faintly.
So April 21st, 1999,  I was in labor all day at home.  My husband and I went in to the hospital at 9 p.m. (while our electricity was out due to a bad storm) and we watched a silly old Disney film until 11 p.m.  I told him to see about getting some pain medicines but the doctor came in to check me instead.  She said I was at an "...8...9...10...don't push" (as she hurried to get another glove on).  Well, I didn't push and the water broke and out popped baby.  The nurses were marveling at this perfect delivery.  I thought she looked pretty purple compared to my others but they gave her high APGAR scores.  She never did cry hard.  But she took to nursing fine.  Two days later we checked out of the hospital with another "perfect" baby girl, Lydia.
The first night home she seemed to whimper off and on throughout the night so by early morning I brought her into bed with me.  At 9 a.m. I laid her in a recliner for a nap and just happened to peak at her and see she was purple.  I knew she needed to breath and that she hated diapering so I scooped her up and went to the changing table.  She remembered to breath right away then!  I thought that was odd so I'd keep a closer eye on her.  Sure enough, about hourly her lips would start turning purple and I'd jostle her to get her breathing again.  I called the doctor and he said if it happened again to take her to the hospital.  It did.  I thought here is our last chance to make a decision before hospital staff cover her in tubes, if she should go more gently back to her maker.  But that was a moment's thought and then in the early afternoon my husband was driving the car and I was in the back seat with her, watching to see if she'd turn blue.  She didn't in the car but did in the emergency waiting room and in the first examining room again.  I think the code blue button was pressed because we were whisked to another room and bombarded with people working over our tiny 6 pound, 9 ounce baby.
By nightfall we were in Pediatric Intensive Care (because she had been discharged from Neonatal).  They had to find diapers small enough for her and I think the staff enjoyed their tiny charge.  A nurse and I stayed with her through the night, resuscitating repeatedly.  The nurse said I was better than any monitor at catching her episodes coming on.  I trusted she could keep my baby alive no matter what.  At midnight, for the first time,  the baby stopped breathing while I was breastfeeding her.  I wondered when, if ever, I would be able to breastfeed her again.  The nurse couldn't wait to intubate after that because resuscitating was getting harder to do.  It was 3 a.m. when they were ready to put in the breathing tube and I fell asleep exhausted on a bed in the room.

    I slept three hours or so and started a new day of vigilance and shared silent shock with my husband.  The nurse who helped all night told us that a neurologist would be coming by to talk to us about a CT scan and our babies brain.  I thought she must have a small aneurysm... The nurse said this neurologist gives the worst case scenarios and not to be too alarmed.  That was all the preparation we had.  He arrived ready to put the scan up to the light.  I requested a chair because I was so exhausted from just having a baby and being up all night.  Good thing I was sitting down!  The picture was half black and he points to it and says "That's dead," 75% of the right side of our baby's brain!  He goes on to say the rear was spared, which would be vision.  But she may never walk, talk, etc., etc.  Steve and I were totally blown away.  My husband is not a man of many words and he was totally unable to speak that day.  I was crying for 24 hours and had to stop because my eyes hurt too bad to wipe any more tears.  We both came from families with ten children and could not imagine how to tell everyone this tragic turn of events.  We took it very hard and the neurologist was no help there.  The nurses kept talking about a thing called "plasticity" and said Lydia's little eyes were so bright that they thought we would be surprised how well she could do.  Guess you give what a brain doctor says more weight than what nurses say...until you gain experience.

    Lydia was in ICU for a week.  She was loaded with Phenobarbital and we watched as they lowered the number of helping breaths she needed.  But midweek, she must have been stressed by being wheeled around to have an MRI and the breaths were increased.  This really made my husband and I wonder which direction things would go.  But the next few days she improved and eventually the feeding tube, down which they had been pouring my pumped breastmilk, was removed.  Amazingly, she took right up where she left off with breastfeeding.  Although I do think breastmilk is the best thing she could have, I want to state clearly here that I think it was only because I had breastfed prior children successfully that my milk didn't dry up from the stress I was under.  I can understand why most mom's probably would not have feeding options and I wasn't sure at first if I would either.

    Lydia came home again May 2nd.  At the end of May her EEG showed tiny seizures and Dilantin was added, along with the Phenobarbital.  She has been on high doses since and had clean EEG's.  She may come off the medicines after June 1st, 2000.

    Her first three months had a few hurdles.  Lydia's biggest issue was gagging while feeding.  I thought humming when I heard her breathing rhythm go wrong while feeding was helpful to gently prod her.  I also took her back to the hospital three times, misreading her temperature and panicked by the neurologist never to let her get a fever.  I was embarrassed and upset that my nervousness put her and I through so much more.  Finally, I was sternly told by a pediatrician that I had a very healthy baby.  By three months old she was doing therapy on a ball to increase neck and trunk strength.  Her character was full of grins, although she slept most of the time from high medicine levels.

    The next three months had more challenges.  Gagging subsided, but from four to six months old she had bad reflux.  We gave small doses of Maalox and she grew out of it.  She also threw severe crying fits when riding in the car after dark.  We were told she was possibly very dizzy so we avoided taking her out at night for months.  The medications didn't allow her to be very alert until five months old, yet somehow she would reach milestones like rolling by six months.  (I began an antidepressant to cope with my feelings and uncertainties at this time.)

    Since six months old, one thing hasn't changed while most things have.   She has not gained weight since her chunky six month weight.  Getting her to eat and drink more is an immediate concern, as she prefers breastfeeding only.  She crawled at nine months and is cruising furniture at age one.  Mastering skills takes longer for her.  For example, she could pull up to furniture for weeks before thinking to walk beside it also.  Her left arm and hand have high tone.  She has worn a small brace to pull out her indwelling thumb and BOTOX treatments have been mentioned as a possibility in her future.  She uses the arm to stabilize herself and brings her hand into midline play even though the fine motor skill is lacking.  Stretching, massage and the brace help.  The speech therapist feels she will speak, although so far we only think her big smiling "Hah" sound may mean "Hi."  She hasn't made many different types of sounds but adds clicks or something when I'm about to give up.  Learning some sign language has helped me feel I can handle it if she doesn't speak.

    My biggest prayer was that she could be a good sister for her siblings (Amy and Marie), and she is a real joy to all of us!  I know we have one of the best cases possible for such a large area stroked out.  If you asked me what I attribute it to, I'd
say:  God, high medicines for seizure control, breastmilk, a great Physical Therapist early on, and Lydia's tenacity.  She is a living miracle.



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This page last updated 12/31/2001