The Hope Journal 2003

Photo Album Date Description
July 16, 2003 Hope is born. Weight: 5 lbs 1 oz. Length: 17 in.
  July 18, 2003 Hope had her first pediatrician appointment today. Said she looked good, but she recommended some tests--PKU, hearing, heart, and genetics. A PKU test was sent to the state health department. We won't hear anything if everything is in order. (Never heard from them again.)
  July 30, 2003 The heart test showed that she has 2 holes in the septum between the upper chambers. This condition is called "Atrial Septal Defect" (ASD). Sometimes holes in the heart close by themselves, but the cardiologist said he has not seen these holes (where they are located) close before. His recommendation was for open heart surgery when she's stronger, between 2-5 yrs old. 

She also has "Patent Ductus Arteriosus" (PDA). All fetuses have a connector joining the aorta and pulmonary artery to bypass the lungs (lungs not needed in the womb). Within 48 hrs after birth, the connector closes. Hers has not. We have another appointment in 3 months to check that the connector has closed.
  August 5, 2003 Our immediate need is that the pediatrician is concerned that she is not gaining weight fast enough. She was 5.1 at birth, fell to below 4.10, weighed in yesterday at 4.11, unchanged for 2 weeks. She suckles well, we're working on some adjustments in frequency as suggested by the pediatrician. Nancy's desire is not to supplement, if at all possible.
August 10, 2003 It's been a wild weekend. Baby Hope is in the Neonatal Intensive Care Unit at B Children's Hospital. She had a regular pediatrician check-up on Friday; August 8; the pediatrician found her bilirubin level was dangerously high and had her admitted to the Emergency Room. Her bilirubin count was 37, when readings above 25 are considered dangerous. Many newborns have Jaundice because their livers have not started or are slow to start eliminating the dead Red Blood Cells. Makes them look yellow. Jaundice is the name of the sickness, bilirubin is what the dead Red Blood Cells turn into. It is awful to see all those tubes and wires they have in/on her. And they have taken vials and vials of blood for testing. She's just a tiny thing to begin with. At one point, they were talking of a total blood transfusion. Thank God they were able to bring down the count by the bili-lights and drip so we didn't have to go there. We brought all the children to the emergency room to supply blood in case of the transfusion, but found out later that they wouldn't take their blood on such short notice.

Well, today if we were not at church, we were at the hospital. Baby Hope is improving, the bilirubin count has gone down to 29 (Fri nite) to 22 (Sat) to 17 today. Nancy has been with Hope 24 hrs a day since her admission. One reason is because of the breast-feeding--Hope nurses every 3 hrs. Then of course, every mother wants to be with her sick child. There is a parents' room next to the NICU - it's decked out like a hotel room - where Nancy can sleep and gets awakened at feeding times. 

One good thing to glean is that they've given her a complete checkup. Her blood has higher than average hemoglobin. Her liver is functioning, albeit a little slower than normal. They did a spinal tap and she doesn't have meningitis. They did a genetics test and confirmed her Trisomy-21. She's gained back her birthweight. The Neonatologist couldn't point to any one thing that brought on the high Jaundice level; thinks it's a combination of many small factors. She also said that once the jaundice is gone, it won't come back - it's a newborn problem only. Nancy is pushing for Hope's release asap, even for Monday.
  August 12, 2003 We're on an emotional see-saw. Baby Hope is still in the NICU. Instead of talking of discharge, now they're telling us the blood and spinal cultures are showing bacteria and they may have to keep her for a whole month. 
  August 13, 2003 Now they're telling us the blood and spinal cultures may have been contaminated. They've switched off the bili-lights and moved Hope to the second-tier NICU. 
  August 13, 2003 Hope passed the Automated Auditory Brainstem Response (AABR) hearing test in both ears. An earlier hearing test two weeks ago was inconclusive because Hope was fussy and caused too much "noise" to get a good test. 
August 14, 2003 I was hoping for a phonecall to come pick up Baby Hope; the doorbell rings at noon and there's my wife and baby - she had driven herself home to surprise us! And what a surprise!

We're jumping up and down here rejoicing in the Lord's mercy.

Thank you for all your prayers, encouragement and well-wishes. I hope you'll continue praying for Hope, as DS kids have a higher incidence of sickness and medical needs than normal. 

Also, we had planned to drive to Boston tonight for my wife's family reunion ... I think we are going ahead as planned, even though it's going to be tougher on all after this stressful week. 

May God bless you richly too, as He has blessed us.
August 16, 2003 "Hopie" had a great time in Boston seeing her relatives on her mother's side for the first time.
  August 28, 2003 Hopie is still not gaining weight. We saw a Lactation Consultant today. She brought her scales and gadgets and we determined that Hopie was only getting 1/2 oz of breast milk after 15 minutes of feeding. She doesn't get any more beyond that because of her poor muscle tone and heart condition. She would actually lose weight if she suckles for too long. She expends a lot of energy just to breathe, let alone suckle. She's always panting. We rented a breast pump from the Lactation Consultant to get more milk into Hopie with less effort. She still enjoys the breast for comfort.
September 8, 2003 Hopie saw the endocrinologist today. He checks for glands and hormone levels. He diagnosed her with hypothyroidism--a low functioning thyroid gland. He prescribed "Synthroid" for her to take daily FOR THE REST OF HER EARTHLY LIFE to help her grow normally. She has to have the dosage of medicine checked every 2-3 months while she's growing rapidly, then every 6 months later.

While there, the cardiologist got pulled in and diagnosed her with an enlarged heart from congestive heart failure. He prescribed "Spironolactone" and "Furosemide", diuretics to remove excess water in her system.
October 16, 2003 A milestone--Hopie smiles and can almost roll over. Developmentally, she does not lag behind other children her age. She is small for her age and her muscle tone is poor. Her breathing is labored even at rest. When you pick her up, she's like a rag doll, arms and head all floppy. Need to be extra careful about supporting her head.
  October 20, 2003 Since our ordeal at the NICU, the county government has found out about Hopie and has sent a social worker eager to help us. The county, supported by the state and federal governments, has implemented many programs to help the poor and disabled. The first step is a Developmental Evaluation Clinic at A Cottage on November 11.
  October 28, 2003 A milestone--Hopie tops 7 lbs. The hope is that the heavier she gets, the stronger she can nurse at the breast.
November 2, 2003 At the cardiologist's prescription, we started Hopie on 22-calorie/oz Similac Advance Neosure formula. She was still not getting enough breastmilk. She's the first of our 11 children to have anything but mother's milk before 6 months old. If she does not gain weight fast enough, it would mean that her heart condition is overtaking her, and the cardiologist will schedule open heart surgery immediately.
  November 24, 2003 Another milestone--Hopie tops 8 lbs. 
December 4, 2003 Regular pediatric appointment. Age: 4 mos. 14 days. Weight: 8 lbs 5 oz. Length: 21 in. Given DTAP & HIB vaccinations. She was also given "Synagis" serum to help her combat foreign agents. With her heart condition, any small cold or flu may be devastating to her little body.
  December 16, 2003 5 month birthday. Weight: 8 lbs 12 oz. Length: 21.5 in.
December 25, 2003 Hopie's first Christmas.