Last time we posted to the blog, Grant had been moved from the ventilator to the SIPAP. He was doing very well for his first trial. Without having the normal preparation of a planned extubation (with steroid shots a couple days in advance), he held on for about ten hours. He was still oxygenating well and had a good blood gas, but he was starting to work too hard to breathe. Rather than letting him tucker out and having to intubate him in an emergency move, the care team decided to reintubate him while he was ahead. They tell us that even those short times off the ventilator are good for them, and we are very proud of what he did.

Our babies are now growing up so fast! As mentioned in previous posts, it is often the simple and mundane that gives us a sense of joy and relief. For two months, our kids have truly lived in a bubble. Their Plexiglas isolette (sometimes referred to as an incubator) has been their home in a dark room with no windows. They only left their isolettes briefly for events like Hazel’s PDA surgery, Kangaroo care, and to switch to a clean isolette exactly like the last one. As of last Thursday, they made the move to cribs!

I remember telling someone the news, who seemed unimpressed. Well, I’m sure for full term babies it is no big deal, but to put it in perspective: they moved into cribs exactly 7 weeks prior to full term. They really shouldn’t even be in this world breathing air yet, so I am going to be proud of our kids on that move!

Moving to the crib also means we were able to dress them in real baby clothes! I know Julie has been looking forward to this for a long time. We had to unbury the outfits that we had washed and neatly folded into storage bins, thinking they would not get to wear them until they came home.

On Saturday, they were stable enough that we were able to do Kangaroo care with both at the same time! For the first time ever, we were able to get a family photo with all of us visible in a single shot.

On Sunday, we were able to give them their first baths. They had already gotten sponge baths, but we were able to put them in a little tub and get them all cleaned up. They both tolerated it extremely well, and Grant only fussed when we were putting on his clothes. Once they were all cleaned up, I looked at them a little differently. I couldn’t see the breathing tubes, leads and monitors. Being bundled up in clothes, I felt like we were just spending time with our new babies who had never been so sick or born so early.

Hazel is showing progress on her oxygen needs, so the doctors have given her steroids to prep for a trial extubation later this week. Grant, on the other hand, was not willing to wait. He threw up and his breathing tube was getting pulled out. He was extubated to CPAP for a little bit, but his oxygen needs were at 100%. Not long after, he was reintubated and is holding fairly well.

So, to answer some frequently asked questions:

How much do they weigh? Are they gaining weight?

Yes, they are growing, but their weight fluctuates. Some medications can cause a little fluid retention, and added fluids (like IV or blood transfusions) can increase their weight artificially. When they retain too much fluid, they may get a diuretic as the extra fluid makes it more difficult for them to breathe. At one of the most recent weighings, Hazel just hit the 3lb mark and Grant reached 4.5 lbs (over 2 kilos).

When do they come home?

It’s odd to think that Grant has already surpassed the minimum weight to come home, but weight is not everything. They still have other developmental goals to reach, namely breathing and eating. The general guideline has been their due date, but they will do it at their own pace. In fact, it is most probable they will come home at different times.

We realize it has been a while since we last posted. Life has just been so terribly busy lately. Here’s the rundown of what’s been happening.

Hazel has been recovering nicely since her PDA surgery. She had some ups and downs on her oxygen needs at first. A follow-up ultrasound of her heart shows no issues with the closure they did on her ductus, and blood is all flowing in the proper direction. Since then she has been stable enough that we have both been fortunate enough to do some kangaroo care with her during this time.

Grant has had a few more milestones. His oxygen needs were pretty high, in the 70% range. At some point, the care team decided that he was trying enough breaths and it might be worth trying to move him from the high frequency oscillating ventilator to the conventional ventilator like Hazel is on. Grant handled it magnificently and we were able to hold him again! Grant had not been held in over six weeks! The high frequency ventilators have a really stiff tube that makes it too difficult to hold the babies while they are on them. We were glad to take advantage of the chance to hold him. He has grown so much since we last held him, it was like holding a completely different baby.

At this point, both kids have at least doubled their weight since birth. Grant weighs 3 pounds, 5 ounces and Hazel weighs 2 pounds, 5 ounces. The weights shift a bit from day to day, as transfusions, blood draws, feedings, medications and infections can all affect the fluid they retain and obscure their real weight gains from growth.

Not long after Grant switched ventilators, he was having challenges with getting all the air he needs from the vent. As the babies grow, the space between their windpipe and the endotracheal tube (ET tube) gets bigger and causes air to leak. Grant’s leak was getting big to the point where they were fighting just to keep his lungs inflated against all the air loss. One option is to put in a larger ET tube, but the other is to try to move him off the ventilator to a CPAP or SIPAP. In case you aren’t familiar with either, a CPAP creates a constant air pressure and a SIPAP creates waves of higher pressure much like breaths, neither of which needs a breathing tube but instead connect to the nose with a headgear. In either case, the baby is doing the breathing with just a little aid of pressure to keep the lungs expanded.

Well, the care team made the choice to move him to the SIPAP and so far (he has only been on the machine for a few hours) he has been doing great and his blood gas labs show he is getting respectable numbers. We have been told that most kids fail their first time eventually, but every minute and hour helps to train the breathing and develop their lungs. We’re hopeful he will do very well, even if he does have to step back to a ventilator, and we are totally thrilled to see this progress. The best part is, for the first time ever, we were able to hear Grant cry! We never thought we would want to hear a baby cry and be happy with it, but it was such a wonderful sound.

A few weeks ago, they discovered a fungus in one of Grant’s blood cultures and started an antifungal treatment. He has not had a positive culture since the initial finding and will be finishing his antifungal treatment tomorrow, which means his PICC line (peripherally inserted central catheter) can be removed after that. The PICC lines are a convenient way to administer medication and fluids, but they are also prone to infection, so it is a good thing to have removed when possible.

We are looking forward to further progress for both. Hazel is probably not far behind, but her nose is still just too tiny for the mask and they want her to be bigger and stronger before they make the CPAP/SIPAP transition for her.

We feel so very fortunate with all the progress the babies have made. We know they still have a long path ahead of them, and their outcomes are yet to be determined in the long term. For now we are living in the moment and are so proud of Hazel and Grant and will enjoy holding them and watching them grow!

 

Hazel’s surgery went well and she seems to be doing just fine. She got a stitch, which is preferred over a clip, to ligate the PDA. The surgeon said her blood pressure went up when the suture was placed, so that is a good sign that it stopped that bad blood flow. The nurse could no longer hear the murmur that was an indication of the PDA before. She is back in the NICU room for recovery, where she is resting peacefully. So far her stats look great! She is on room air (21% oxygen), her saturation is in the mid 90’s and her heart rate is within expected range.

We are so happy to have heard how well her surgery went and that she is already doing so well. Over the next week or so we should see her continue to improve.

Her brother Grant is also doing quite well. One of his blood cultures shows a fungal infection, which they are treating. He has not shown any indication that the infection is causing adverse effects so it seems we may be ahead of this a little and can keep it under control.

Meanwhile they have slowly re-started the feedings at minimal levels to see how he tolerates that.

Thank you everyone for the prayers and well-wishes, we appreciate them so much and are happy to see our babies starting to get better!

It is hard to believe our babies are four weeks old already! Here’s what has been happening recently.

Hazel has a couple heart concerns in the last week or so. She has a PDA, which basically means there is an open valve in her heart. The valve is there in all babies in the womb and normally closes within a few hours after birth, but in preemies can remain open. The valve’s normal function is to bypass the lungs when they are not used for oxygen in the womb. Now that Hazel has been born, it is causing oxygen-poor blood to mix with oxygen-rich blood. She is receiving medicine to try to close this valve, in hopes that she can avoid surgery. This treatment is somewhat unproven, but has no negative side effects so it is worth the try if we can avoid surgery. The doctors believe this condition is causing her heart rate and oxygen saturation to periodically drop to alarming levels. Surgery has huge risks at this stage, which is why they have not rushed her to the OR already.

The other concern is her heart ultrasound also shows either a PFO or VSD, which is some type of hole between two chambers in the heart. She is too small to be able to discern which condition they are looking at, but oddly enough this is a less concerning condition for the doctors in either case. It sounds like this may close up with development over time or may be watched after she comes home and needs correction when she is older.

The good news is her oxygen needs have come down recently, and it seems like her numbers are not dropping as frequently, and her heart rate seems to be a bit more stable. She is up on her feedings, which will help her grow and develop. She seems to be doing fairly well in spite of her heart conditions.

Grant had a PDA like Hazel, but his was made smaller with medicine, and he had to stop feedings while on the medicine. We were thankful the PDA closed, but not long after, over the period of a little more than a day, he took a turn for the worse and suddenly retained a lot of fluid (he had gained approximately a third of his body weight in just fluid over 2 days) and his oxygen needs skyrocketed. He was swapped from one ventilator to another and then again, receiving 100% oxygen at the highest pressure. They also added nitric oxide to his air supply to reduce blood pressure in his lungs. They gave him the heaviest diuretic they have on a constant drip to help him pee off his extra fluid and catheterized him just in case there was an issue there preventing him from peeing. He was on antibiotics, antifungal, and heavy steroids.

That night as we called the NICU to check on the status of the kids, the nurse reiterated how very sick Grant was. She started talking about how sometimes kids surprise her and turn around, but at this time they had done absolutely everything possible in medical terms. She told me about having a family meeting with the doctor, because they wanted to be sure we knew how grave things were. The nurse continued suggesting how we might want to take the last opportunity to just be able to hold him. In a roundabout way, the nurse was telling me that my son was dying. I certainly understood just how bad things were, but I refused to accept it. Saying goodbye to Marissa was difficult enough, and I did not want to believe this was it for Grant. All we could ask in this case was for Grant to turn things around and heal on his own. We needed a miracle. We got a lot of prayer chains going.

The next day the nurse gave us an update on his progress. He had a couple of very wet diapers, and in fact when the nurse went to change him, he peed so hard the catheter came out and was making a bit of a fountain in his isolette. It really is funny to think how simple things like peeing are what we pray for, and we are so thankful when we hear about very wet diapers. Over the next couple days he effectively peed off 3/4 of a pound of fluid, returning to his weight before he started going south. His oxygen needs have dramatically improved, so he is no longer on the drip of heavy diuretics, they have reduced his nitric oxide, and he is almost weaned off the steroids.

During this time, there have been many other temporary items of concern or some that are uncertain. It seems to be daily that we hear of a pick line, art line or peripheral IV line failing. Sometimes they have been unable to replace the line, and the kids are running low on sites to introduce new lines. Before having kids in the NICU, I really had no idea how tough it is to be a preemie. I always thought it just meant they were small and needed to be kept warm and have lights on them. In reality, every day is survival for them. Every minute, in fact. A “good day” for an extremely premature NICU baby is far worse than the sickest day most adults have ever had.

Julie has been receiving home care for her incision, as all the infection from her multitude of procedures and the ruptured amniotic sac had been affecting that. Antibiotics and the repacking of her incision have helped her improve, and she is very close to having the wound closed up. She is a trooper though, and still gets out to see the babies every day. She is still so hopeful for the day she can hold Hazel and Grant and bring them both home.

We got to do kangaroo care with Grant!

What is Kangaroo Care?

It’s holding your baby, skin to skin, on your bare chest with a blanket draped over your baby’s back to help keep him/her warm.

Benefits of Kangaroo Care for babies/parents?

For the babies, holding 1 to 4 hours is highly recommended.  Human touch is the foundation of infant development. It helps stabilize body temperature, stabilize heart/respiratory rates and oxygenation (decreases spells), enhances and facilitates breast feeding, enhances sleep/wake cycles, promotes longer deeper sleep, improves weight gain, enhances neurobrain development, enhances muscle growth, improves digestion, decreases pain and stress (less crying) and shortens hospital stay.

For the parents, beneficial for breast feeding – increases milk let down, milk production and prolongs duration of breastfeeding. It encourages relaxation and decreases stress, enhances parent’s confidence and competence in caring for the babies, enhances parent/infant attachment and increases parent’s readiness at time of discharge from the NICU.

For both baby & parents, this is a good opportunity to learn each other’s cues, scents, voices, cries etc.

How is Kangaroo Care performed?

I can’t just go and pick up Grant or Hazel and pick them up, there is a lot involved. First the nurse has to determine if our babies can tolerate Kangaroo Care. I was able to FINALLY hold my son, Grant for the 1^st time at just 6 days old (gestational age 25 weeks). Let me tell you, holding him for the first time was amazing, wonderful, exciting, emotional and a tiny bit scary.

Vital signs, cares and assessments have to be done before you can hold skin-to-skin. With all of the lines and tubing it takes two nurses to transfer our baby to my chest. Once Grant was placed on my chest they position him in a flexed and tucked position and the nurses secure lines and tubing into place. They had me support Grant’s bottom and head and placed his hands near his mouth. Once we were both settled I was finally able to sit back and relax and just really take it all in and enjoy this amazing and wonderful time. Feeling Grant’s tiny hands and tiny fingers against my chest wiggling around and his tiny legs and tiny toes moving was the best feeling in the world! I thought, finally I am holding my little boy, something I thought at one point in time in the last five years I might never, ever feel. I could have sat their all night with him in my arms, it was so incredible. After the hour was up, the two nurses unsecured the lines and tubing and transferred Grant back into his isolette and put all the lines and tubing back into place and snuggled him back into bed.

The next day, Ryan got to do Kangaroo Care with Grant too. I think he was a bit more nervous than I was, but they did great together. I was so excited and happy for Ryan to be able to hold his son. This time with Grant was cherished and we had many tender moments together. Every baby has their own pace in the NICU, and Hazel has so far has not been stable enough to do Kangaroo Care, but we are hopeful the day will come soon. As they also have their ups and downs, we have only been able to do the Kangaroo Care with Grant just one time each. We are really looking forward to when they can both be held, but everything in good time and when they are ready for it.

I feel like I don’t know where to start with this post. Since our kids were born, I’ve lost all sense of time. Little things like getting a meal seem to take forever, and an hour in the NICU goes by in the blink of an eye. People are asking for updates, and I feel bad that we haven’t had time to post any updates through the blog. Here are the basics:

Hazel and Grant continue to fight for their lives daily. They were born at the edge of viability and the doctors have warned us that their stay in the NICU will be full of ups and downs. Bodily systems we normally take for granted are monitored daily for changes. Breathing, blood pressure, heart rate, hemoglobin, platelets, feeding, urine and stool are daily subjects for updates we get from the NICU team. We are learning a lot about the struggle typical of preemies and amazed at their fragility and endurance. We have both had the chance to hold Grant outside of the incubator, but Hazel has not yet been stable enough for this.

Infections are always a big concern. We wash our hands thoroughly and use hand sanitizer before we can touch or hold our babies. Even with all these precautions, it is not a completely sterile environment. The tubes and lines going into their bodies will need to be changed periodically, either because of risk of infection or an actual detected bacteria formation.

For their privacy, I won’t go into details about particular daily challenges each faces on this blog. Everything is in constant flux, so by the time you read it, the situation may have changed. There may have been changes from the last NICU update by the time I write this. We will share more information in private conversation, but we’ll limit sharing with the internet.

Julie has been through a lot in the past week and a half. I continue to be amazed by her. She went in expecting a long stay in the hospital as we awaited the arrival of the triplets. She dreaded the loneliness, boredom and homesickness, but was willing to go through it for the kids. In less than a week, she started having contractions. At first she thought they were just the babies moving, but the monitors were detecting otherwise. Within about an hour of the first signs of contractions, they started to become painful for her and she was placed on magnesium sulfate, which is used primarily as neural protection for the babies in case they would be born but it can also have the effect of stalling contractions. Overnight the contractions continued, and we were moved from her antepartum care room to the labor and delivery area “as a precaution.”

The day’s contractions became increasingly painful, and Julie was given an epidural for the pain. She went through painful examinations of her cervix and ultrasounds. In the last ultrasound, the doctor had trouble seeing Baby A, and did a manual examination in which he discovered she was already starting to emerge. Julie was rushed into the operating room, where she delivered Marissa Jean vaginally. I saw Marissa’s hand move before she was quickly picked up by a nurse. We were in great suspense as the NICU team worked on Marissa in an adjacent room. At this time Julie was getting a cerclage (had her cervix stitched shut) to help keep the other two babies in and give them hope at a longer term in the womb. The NICU doctor returned to inform us that despite their best efforts, Marissa’s lungs were just not developed enough to get air into them. She was wrapped in a blanket and brought into us. We held her and sobbed. A doctor or nurse returned a few times to check her heartbeat until it could no longer be detected.

That night we were surrounded by close family as we mourned our loss. She was already missed as a daughter/granddaughter/niece.

Our hope turned to the other two babies, thinking that perhaps they would be able to make it in the womb for a couple more months. They still had their amniotic sacs, after all. The contractions were starting to subside, and Julie could now be on medication to prevent contractions and labor. In spite of all our hopes, the contractions returned. Julie was again moved to Labor and Delivery for closer monitoring.

This time, the contractions started placing increased stress on Baby B. Each contraction lowered the heart rate significantly, to the point that it was scary to watch the rate drop and the heartbeat would be barely audible through the monitor’s speaker. After a while of this, the doctors made the decision to do a c-section delivery of the other two babies.

Julie was prepped and wheeled away. I was told they would come get me in ten minutes. Ten minutes in hospital speak means “just keep waiting.” They finally led me into the operating room where it seemed the procedure was well under way. Julie had a spinal but was still extremely tense and uncomfortable. I can’t imagine what she was going through. Because of the surgical dressing, I couldn’t see anything, but I could hold the camera out enough to record the nurses who were ready to collect the babies as they were born.

“BIRTH!” they shouted out, followed by “thirty-six” – designating the time of birth. A baby flew by so quickly I couldn’t really see much. About 40 seconds later I heard the same declaration and time, followed by another baby being transported just as rapidly. I was left to simply comfort Julie as they proceeded to remove the three placentas, stitch her up and remove the cerclage stitches.

Someone placed bracelets on our wrists. I knew this was a good sign and reassured Julie, but she was still very stressed by everything she was going through at the moment.

The doctor came to get me and introduce me to my son, then to my daughter, neither of which yet had a name. Each were in their “Giraffe” beds and hooked up to breathing tubes and wrapped in plastic bags to retain heat. Our boy was carted away and Julie was wheeled into the room on her bed to meet our daughter. It was a very touching moment as she laid eyes on her for the first time and was able to hold her hand. I did my best to get both photos and video of the moment. Julie was then carted away to her room and I followed the NICU team to our kids’ room. I don’t even remember this trip, and I only know because I have the photos from when they first arrived in the room and can recall making the decision to go check on Julie at one point.

Julie was still extremely tense and agitated from everything. I think she found the will to overcome all the pain medications they administered, and I was there to witness everything she received. I did my best to calm her, talking her through breathing and positive imagery until she finally settled down. I then went back to Julie’s antepartum care room where immediate family was waiting so I could quickly share the news before going back to Julie.

After a while, Julie’s bed was rolled to the NICU so she could finally see Grant and see Hazel again. Then we returned to her antepartum room, completely wiped out. Over the last 76 hours, Julie had been in labor with contractions, received six IV pokes, got liters of drugs and fluid, delivered both vaginally and by c-section, received a cerclage, had a cerclage removed, named three kids and lost a daughter. She did all this with very little sleep. This was not the end, as she developed a fever, likely the result of an infection.

Julie was discharged on a Wednesday, and I had made plans to pick her up. We were both having such a difficult time in our grief. Julie was not ready to be separated from the kids, and I didn’t want to leave any of them there. I had already had difficulty being at work for only a day and a half that week. The hospital offered to let us stay in the room as it was not immediately needed, and we accepted the gracious offer. We finally went home that Saturday, after both kids had a “good” day in the NICU.

We are very thankful for everyone’s thoughts and prayers. Our entire family will need these for some time.

Julie’s first day in the hospital was a little bittersweet. As we left home to check her in for monitored bed rest, she took one last look around the house, realizing that the next time she will be home is after the babies are born. When she returns, the house will be completely different. The basement project I have been working on should finally be done. Some furniture that is cramped in the living room will be moved into the space created downstairs. The furniture in our current bedroom will be completely moved out and a nursery, freshly painted and decorated, will be taking shape in preparation for the triplets’ arrival. When she comes back, she will be recovering from her c-section in a house that might seem strange compared to her hospital room where she will (hopefully) be for quite a while.

We left the house, not knowing exactly what to expect. As Tom Barnard read the news on the KQ morning show, I laughed at the funny parts, hoping Julie would join in. I could tell she was nervous and already a bit homesick.

Once we checked in, it was a complete whirlwind. As we filed into a tiny room, a nurse told us we would hopefully have a larger room around noon as it became available. Julie changed into the hospital garb and climbed into bed.

I shuffled my way into the corner, hoping to stay out of the nurse’s way as she whirred around, placing audio monitors onto Julie’s belly and adjusting them continuously as she sought the heartbeats of each baby. It’s still great reassurance to hear the strong and regular rhythm.

The hospital staff took blood, swabs, readings and observations. Everyone was great to work with and friendly, but there was a lot of poking and prodding. With the IV tap in, the magnesium sulfate treatment was started. This made Julie feel very hot and she started to get a bit nauseous to the point medication was needed to help with that. An ice pack provided a little comfort for her too.

We met with the nurse practitioner, doctor, and several nurses. I can’t remember who told us what, but the medications and treatments were explained. Some medications were used to prevent bleeding in the babies’ brains and relax the uterus, some were used to prevent infection, and some were used to help the babies’ lungs develop.

As everything was explained to us, one thing stuck in my head. Each day that Julie is in the hospital and pregnant reduces 9 days in the NICU (3 days per baby). That seems like such an incredible motivator, to think that each each week is worth 63 days less time the babies need to spend in the hospital! I knew Julie wasn’t looking forward to being stuck in the hospital for so long, but the sacrifice on her part would be worth it to help our kids when they are born.

As the day progressed, it was clear the larger room would not soon be available. I worked while Julie was occasionally monitored. After an extremely bland hospital food dinner, the bigger room was finally available! It was about 6:30 in the evening.

The “permanent” room is about twice as big. The view is not as nice, unless you like rooftop and brick wall views, but the space is worth it. I made trips back to the car for the rest of the belongings we packed for Julie’s stay. I believe it is about ¼ mile walk each time between the room and the car, so I probably got about a mile and half in that day.

The NICU doctor came in to our room and gave us a rundown of what to expect if our babies are born within the next two weeks. She told us how there would be a NICU team for each baby, about 8-10 people total just for our kids in addition to the other doctors and nurses in the room for the delivery. The babies would be immediately whisked away and we would be lucky to get a glimpse of them before they would be intubated, get a tube for feeding via their belly button and put into a Ziploc-like bag to preserve body heat. Without going into the details, I’ll say that at this point we would be most concerned about survival if they are born in the next couple weeks. Every couple weeks, the NICU doctor will give us an update what to expect, and each time the news becomes easier where, for example, the discussion is more about just needing a little oxygen instead of needing a breathing tube.

After the NICU doctor left, Julie had another round of monitoring the babies’ heartbeats. The little babies have so much room to squirm around, tracking them down can be challenging and time-consuming to verify an individual heartbeat to get simultaneous readings on all three. Just before the monitoring was over, Julie’s best friend arrived. I helped finalize all the arrangements Julie would need before I left to go back to the empty house.