Happy February 31st! Or, as the rest of the world calls it, March 3rd. We try to get an update out once a month at least, but a short month and other circumstances made us miss that goal. Darn.
Hazel and Grant continue to learn about the world around them. We are working harder than ever to give them “tummy time” and try to get them to interact with toys and their environment.
We helped them dress up for Valentine’s day, and spent a somewhat quiet evening at home after an active day.
They had their five month NICU follow-up visit (five months after discharge), where we learned areas that we can focus their attention and what to expect in the upcoming months of their development.
I got a stomach bug, which seemed to be a contagious variety that many others at work were experiencing. As a precaution, I shipped off for a few days to make sure Julie and the kids would not get sick. Julie soldiered on without me, and did an amazing job. We also got some amazing help from friends and family along the way. Hey, it’s a lot of work!
The best news of the month: Grant took another oximetry test and passed! We just found out today that we can remove the oxygen! We’ll be able to wean him off his diuretic medication over the next couple weeks too. We’ll keep the oxygen in the house through the cold and flu season just in case either one gets sick and needs a little extra air, but we really hope this is the last we’ve seen of oxygen needs. At this point, we have one cordless baby! It might not seem like a big deal to some, but for us it is huge and a great accomplishment for Grant. We are so proud of him for getting off the oxygen two months sooner than originally expected, and it is great to move from room to room without dragging an oxygen tank in a cart behind us.
We are continuing to work on Hazel’s feeding skills with taste-testing and are determined to get her feeding by bottle as soon as she is able. We are so looking forward to the day she no longer needs tube feeding and both kids will be cordless.
It felt like this day would never come: after 132 days Hazel came home on Thursday, September 25th! We have finally realized the dream of being together as a family and it’s truly amazing!
The road home took Hazel a little bit longer because of her feeding. When we tried bottle feeding her while she was in the NICU, she silently aspirated (meaning she doesn’t show any signs of choking). For a while, she was sick for unknown reasons until process of elimination and a swallow study revealed it was her silent aspiration. The speech therapists tried working with her to develop the suck/swallow/breathe coordination and made a little progress, but were not able to get her cleared to go home with bottle feeding. Hazel needed surgery to place a G-tube for feeding directly into her stomach. Rather than being inserted through the nose, as they do it in the NICU, this is a semi-permanent tube that literally sticks out of her stomach.
On September 15th, the surgery itself went well for Hazel. However, not long after being brought back from the OR, Hazel was extubated. I was out of the room getting lunch when this happened. As I came back to the room, Julie waved me to come over to her quickly. With tears and the look of fear in her eyes, she explained that Hazel was not taking her own breaths after being removed from the ventilator. I held Julie close as the staff tried to rouse Hazel. Eventually she began to breathe and her oxygen levels came back.
Afterwards, Julie told me more of her perspective, as she watched Hazel turn pale, then blue and purple and limp like a rag doll. Her oxygen saturation had plummeted. We normally get concerned when it gets below 80% and panicky when it gets below 70%. At one point Julie saw 18% on the monitor. She said that she was able to hear my heart pounding in my chest after I had gotten in the room and realized what was going on – something I never noticed or don’t remember.
The staff reassured us she was okay, and some preemies that have been intubated for a long time and are sleepy coming out of anesthesia are a little reluctant to start breathing again. After a few hours she was back to the very minimum amount of oxygen needs and doing well with breathing again. We were glad to have that episode behind us and have Hazel back.
So what is it like having both kids home? Well, it was nice to get accustomed to taking care of one baby when Grant came home. Getting used to two kids at the same time with medical needs is completely different. It takes planning to move kids around the house. They have tubes and oxygen tanks, and Hazel has a feeding tube with a pump on an IV pole. We have to be sure we are not tripping over all the tubing, that all parts are moving together, and try to do it when the other kid doesn’t need attention.
Hazel’s reflux is so bad, she sometimes vomits large amounts that can interfere with her breathing which is really scary. Less than 24 hours of being discharged from the hospital we switched her feeding from meal-like doses during the day to a 24/7 continuous drip and she seems to do better at keeping food down. Eventually she should outgrow this as her stomach muscles develop more and her esophagus gets longer.
Sleep is rare, as I’m sure it is with most new parents. However, we have a higher probability of losing sleep based on the number of kids with their medical needs and the equipment alarms. The oximeter alarm sounds like that really awful $5 alarm clock buzzer, especially through the small speaker on the baby monitor. The feeding pump has a beeping alarm like a small electronic kitchen timer. For some reason it does not pick up well on the baby monitor’s microphone so we overslept that a couple times. We now set alarms for the nighttime food refills. Formula only lasts 4 hours without refrigeration, so that is our schedule to wake up and refill, guaranteeing no more than a few hours of sleep at a time – assuming nobody cries to wake us up.
We already had a trip to the emergency room after noticing some green “stuff” around Hazel’s G-tube site. We were told to look for stuff like this as a sign of infection so we called her pediatrician’s 24/7 care line. At their recommendation, we packed up and headed in to the hospital ER in the wee hours of the night. Fortunately this was a false alarm, and the doctors were not concerned that it was infection.
So it might sound like I am complaining, but that’s just self-pity. I really can’t wait for the days when we can just pick them up and move them around without being attached to anything or worrying about causing them to vomit and choke. In the meantime, we still enjoy them so much. We are in wonder and amazement at our two little ones and we look forward to who they will become.
After spending 117 days in the NICU, Grant finally came home on Tuesday! Everything happened so fast. We had less than a week’s notice, where we were told only a couple days prior that it would probably be a few weeks. We scrambled with a lot of last minute remodeling to finish our bedroom and the nursery, assembled cribs and pulled the car seat out of the closet.
We are so happy to finally have him home, but we are certainly exhausted. As first time parents, the fact that he is also hooked up to oxygen makes us especially paranoid. We got absolutely no sleep the first night and are working our way up to a few hours a night.
Hazel has struggled with her feedings where she aspirates instead of closing her airway and swallowing her milk/formula. She will have surgery next week to have a G-tube so she can be fed directly. We’re told it is roughly a week or two of recovery and then she will likely be coming home. We are bracing ourselves and just hope and pray we can be good parents and give them both what they need.
This is a quick update until we can get on our feet a little bit. We hope to share more in the near future.
Tomorrow is a big day for all of us. Hazel is scheduled for heart surgery in the afternoon. Her PDA (Patent Ductus Arteriosus ) has not closed or gotten any smaller and will need to be tied off. The doctors tried to use medicine, but it is 2mm and it should be 0.7mm or less for her size. It is causing blood to flow in wrong directions and putting strain on her heart and lungs. Left untreated, it could compromise other organs.
The PDA ligation is not open heart surgery, and from what we’ve been told should be a fairly quick procedure measured in minutes instead of hours. One of the top cardiologists, a very experienced doctor, will be performing the surgery because of how small she is. The surgery will be done with tiny instruments passed through the ribcage, and the opening will be tied off. For this surgery she will have to be moved from the relatively controlled environment of the NICU and brought down to the operating room. The risks for surgery are about the same as any other general anesthesia surgery, but we are worried because of how fragile she is.
We ask for prayers that the surgery will go well and without complications, and that she will recover nicely without the hindrance of the poor blood flow. Sometimes babies who have this surgery will dramatically improve, and we are hoping for that.
It has been a bittersweet week. We welcomed our three little ones into the world. On May 14 at 4:17PM, Marissa Jean (Baby A) was delivered vaginally. Because of the early membrane rupture, her lungs were not developed enough and despite the NICU staff attempts she could not be respirated. She passed at 5:06 pm in her parents’ arms, less than an hour after entering the world.
On Friday, May 16 at 10:36PM, Hazel Maria (Baby B) and Grant Carlos (Baby C) were delivered by C-section. Hazel was just a hair over a pound at birth. Grant was 1 pound 9 ounces at birth. Both responded well to interventions and are in the NICU. With a gestational age of 24 weeks and 1 day at birth, they have a long road ahead and will probably be in the hospital for another 4 months.
Julie is working to regain her strength after an extremely emotional and exhausting week. We appreciate your prayers and support in this time that is both joyful and sorrowful.
We knew that Julie was pregnant since week four of the pregnancy. Keeping the news contained until the second trimester was challenging, to say the least. Now that we have officially made the announcement, we intend to post updates and some back story here. Please subscribe or check back later for more news!