Our Days in the NICU

Maisie and James were born at Swedish Medical Center on June 26th, 2012. They weighed 1lb 11oz each and were 13.25 inches long. Within hours of birth James was sent via AirLife Neonatal Transport to Presbyterian / St. Luke's Medical Center in Denver, a level 3C NICU where he could receive life-saving high frequency jet ventilation and nitric oxide treatment. Maisie joined him at PSL two weeks later when it was determined she needed surgery to close her Patent Ductus Arteriosus, an artery between the lungs and the heart.

Aside from a PDA ligation surgery, Maisie's NICU experience was relatively easy. She did have some trouble with vaccines when she was one and two months old, and we are adjusting accordingly at home. Otherwise, she was what they call a "feeder-grower". She was discharged at 83 days old on September 17th, 2012. Maisie is currently on oxygen at 1/16th of a liter for Bronchopulmonary Dysplasia and Chronic Lung Disease, though if we lived at a lower altitude she would likely not need it. As she grows, she will outgrow her need for oxygen. She has issues with reflux and is on Zantac. Maisie weighed 5lbs 4oz at discharge.

When James was sent to PSL, he had failed all forms of ventilation. They did not expect him to make it through the transport, the first night, or the first 72 hours. James was on 40% nitric oxide to help open up the vessels in the lungs, along with high frequency jet ventilation. He was sedated with fentanyl or morphine during this time due to the pulsating of the machine, which breathed at a rate of 420 breaths per minute.

From a lung perspective, James had everything from pneumothorax to aveolar collapses, assumed pneumonia, pulmonary hypertension, and pulmonary interstitial emphysema. Currently all of these situations have cleared but he still has Bronchopulmonary Dysplasia due to prematurity/pProm and Chronic Lung Disease. James was on the Jet ventilator for three weeks, the conventional vent for 10 weeks, and was reintubated every time he had surgery after that. In order to wean on his oxygen and reduce inflammation we did Flovent inhaled steroids and Lasix. James had three failed CPAP trials but skipped CPAP all together when he finally extubated to the high flow nasal cannula. He is currently on 1/8th of a liter of oxygen while he grows.

James had a bowel perforation at 10 days old. He had a minor surgery to place a penrose drain at the bedside to remove peritoneal fluid, but over the course of the next few days James' condition declined and he went into adrenal failure and was severely hypotensive. Luckily a booster of Dexamethasone along with concentrated medication and fluids and Lasix helped him to become stable enough for ileostomy surgery at 13 days old. James had two centimeters of bowel removed and the rest of his intestines inspected for necrotic tissue. The two ends of his intestines were brought to the surface of James's abdomen (stomas) which would be in place until James reached 2000 grams or 4lbs 7oz roughly. Because of the location of the ileostomy, James had issues with dumping or not absorbing nutrients, which led to a metabolic syndrome for which he had to take potassium and sodium supplements. He also struggled to gain weight; it took many weeks and many reformulations of donor breastmilk, formulas, fortifiers, and TPN (IV nutrition) to ensure that James would continue to gain weight.

James had a bilateral grade III IVH (intraventricular hemorrhage) in his brain due to prematurity and oxygenation at 3-7 days old. This was stable but eventually caused hydrocephalus which led to the need for a Ventricular Access Device (VAD) which was converted to a VP Shunt just prior to coming home. There has been concern that James has had areas of echogenicity on his head ultrasounds, which could indicate Periventricular Leukomalacia, though only time will tell if that is the case.

Initially, James had an issue with the right side of his heart not functioning. This cleared up within the first 24 hours. James continued to have issues with Pulmonary Hypertension, or high blood pressure in his lungs for about 14 days after birth. He had to have his PDA ligated at 17 days old.

Once James was off the ventilator and weaned down to 2% pressure on the high flow oxygen, he started bottle feeding. He was 14 weeks old, or 1 week adjusted. At the first feeding James took 53cc's of formula, and James never looked back. He was discharged at 124 days on October 28th, 2012 on 1/8th of a liter of oxygen and no other medicine. James weighed 6lbs 8oz at discharge.

Aside from her Zantac for reflux, Maisie is not on any medication presently. She has a nebulizer from her recent bout with bronchiolitis that we will keep on hand if needed. She continues to be followed for macroglossia, or a congenitally englarged tongue, though she seems to be growing into her tongue. Maisie came off of oxygen at her ten month follow up on 04/26/2013. She weighed 13lbs 4oz and was 24.25 inches long.

James is not on any medication post NICU. He was taken off of oxygen at his ten month follow up on 04/26/2013. He weighed 12lbs 12oz and was 24.25 inches long. James follows up with the neurosurgeon regularly to check on the status of his VP shunt. Aside from PT/OT/Speech therapy that he and Maisie receive through Early Intervention Colorado, James has been released from all specialists post NICU.

Maisie is on supplementary oxygen at night after a bout of pneumonia and bronchiolitis at 17 months old. She doesn't really use it. She also has a nebulizer with breathing treatments of Albuterol and Budesonide if she starts getting sick. Otherwise, she is on no medications. She weighs 17 lbs 15 oz and is 28.5 inches long. She is on track developmentally for her actual age and receives PT and Speech Therapy through Early Intervention Colorado.

James had surgery to replace an occluded catheter in his VP shunt at 12 months old but otherwise his condition has been stable. He is not on any medications. James weighs 15 lbs and is 28.5 inches long.  James is slightly delayed developmentally but is on track for his adjusted age and is making great progress. He receives PT through Early Intervention Colorado.

Maisie continues to struggle with respiratory problems during illness due to three bouts of bronchiolitis/pneumonia. She has oxygen and a nebulizer that we use during illness and to hopefully keep her out of the hospital. Maisie has a track record of declining very quickly, and so we are prepared to act fast to keep ahead of illness to protect her from further lung damage. Maisie started walking independently at 19 months old. Maisie is not taking any medications aside from the nebulizer meds and oxygen that she has PRN. She weighs 19lbs 3oz and is 31.5 inches long. She is on track developmentally for her actual age and continues to receive PT and Speech Therapy through EI Colorado.

At 22 months of age James had an MRI of his spine and brain; he was developing weakness in his legs and losing strength. A tethered spinal cord was found, along with a 2 inch long arachnoid cyst along his thoracic spine. He was diagnosed with a severe form of Spina Bifida Occulta. After another MRI and discussions with the neurosurgeon, we decided to operate and James had a double laminectomy at 23 months old. We saw immediate improvement to James' range of motion and James continues to make significant progress. While he is not walking or standing independently, he is pulling to a stand, cruising, and walking with a push toy. James has had no other complications aside from the laminectomies. James was prescribed Ankle-Foot orthotics for pronation he developed from the spinal issues. James weighs 17 lbs 9oz and is 30.25 inches long. He is on track socially but delayed in gross motor skills. James receives PT and Speech therapy through EI Colorado.

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