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.
Hazel and Grant are now three months old! A lot has happened since our last update (Cribs). In general order of occurrence:
We found this bottle of Coke – remembering our angel Marissa.
Hazel moved from the ventilator to CPAP first. The staff predicted she would fail her first extubation. She proved them wrong.
Grant’s eye exam showed ROP (retinopathy of prematurity) Stage 3 with PLUS disease. ROP with PLUS is a potentially blinding condition that affects preemies. Higher risk factors include extreme prematurity, low birth weight, infections, and high oxygen support – all risk factors our kids have. Grant got shots of Avastin in his eyes to try to correct this. As of his most recent exam, the shots have been effective and his condition has regressed.
Both babies stopped caffeine and pain medications. Hazel switched to high-flow oxygen. She was not a big fan of the CPAP mask or prongs, and is much more comfortable now.
Grant was extubated to CPAP. This was his third time, but the first time where he had proper preparation with steroids and good stats at the get-go.
In a routine chest X-ray, the care team found a rib fracture on Grant that is healing. It is unknown when it was broken, but was not surprising given their tiny bones and the fact that the medications sometimes decreases their calcium and other important nutrients.
Our nurse practitioner at one point started calling our kids “The Boring Andersons” as they started to stabilize (boring is good when you are in the NICU). More recently, she said they should be upgraded to “The Amazing Andersons” because of all the great progress they had made.
Grant followed his sister in the switch to high-flow oxygen.
Grandmas held babies!
We held both babies at the same time! It became very apparent the size difference between Hazel and Grant.
Auntie held Grant!
Our best friends held babies!
They were both switched from “Critical Care” to the “Intermediate Care” team. Instead of focusing on trying to make very sick babies well, they are now focused on getting babies ready to get home. (There really isn’t a picture for this)
Moving Day! An area of the NICU was closed down due to “low census.” The kids were moved from the double-room “apartment” to two adjoining rooms just down the hall. After 90 days in the same room, it felt a little bit like home. (Five days later, census grew and we have moved back into our old room!)
Auntie held Hazel.
Hazel and Grant have come a long way since the “Cribs” update. At that point Hazel weighed 3lbs 1oz, Grant weighed 4lbs 6oz. Less than four weeks later, Hazel now weighs 4lbs 6 oz, Grant weighs 6lbs 2oz. It’s even more amazing to think that they started so small. Fortunately, we also started out by measuring in “feet.”
…Hazel was 1LB at birth – the same as a pack of butter.
…Grant was 1lb 9oz at birth – a little less than this pack of applesauce cups (including the packaging weight).
Coke, butter, applesauce…seems like food is on our mind. Speaking of which, next week they will introduce Hazel to bottle feeding. There are challenges associated with the coordination of swallowing and breathing at the same time, especially for babies who have been intubated for so long. Grant has to come down on his oxygen flow before he can try, but we’re hoping he is not far behind.
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!
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.
Over the past few months, we’ve asked for a lot of prayers. We’ve faced challenges with Julie’s pregnancy and worried about the safety of the babies, lost a child, and worried constantly about the health of the surviving two triplets. As we continue on the journey, we ask for continued prayers and people wonder what they should be praying for. We usually aren’t sure how to answer, partly because we may not fully understand what they need to get better and partly because their situation is so dynamic that information is outdated by the time we tell people.
So here is what people can pray for:
Pray for the hospital staff – the neonatologists, fellows, nurse practitioners, nurses, nurses’ aids, respiratory therapists, pharmacists and all other care providers. Pray that they may use their experience and education, and the knowledge of their colleagues to provide the care that Hazel and Grant need to get better.
Pray for the medicine and equipment – that everything being used provides the right timing and dosage to fight infections or conditions that are hampering the babies’ progress.
Pray for family and friends, who worry about our children and are there to support us, that they may have strength and be comforted when we are able to provide positive news of improvements.
Pray for Hazel and Grant; that they might continue fighting and never give up. That they may rest so they can grow and develop. Pray that they will be able to conquer their ailments. Pray that they are not lonely or scared but feel the care and love they are surrounded by.
Pray for Julie and me, that we might provide Hazel and Grant the comfort and love they need as part of the healing process. Pray that we can get our life organized and prepare a home for the kids to call their own when they leave the hospital.
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.
What’s with the title of this post? The best way to put it is to say I feel like a liar lately. Just to be clear, I generally don’t lie, and I haven’t lied on this blog, and I am not confessing to any lies here. Rather, I feel like every time I tell our story that I am making it all up. When I tell people what is going on lately, in the back of my head I feel like they are thinking they can see through my completely made-up story. To me, the whole situation and everything that has happened feels like it is only a figment of my imagination.
Maybe I haven’t fully come to terms with Marissa’s death, as if just thinking she is still with us would make it so. I miss her so much every day. I also don’t think I’ve fully grasped the concept that I still have two kids that depend on me. I have no idea how much my life has changed. And none of this feels like it really happened to me. I think: maybe it was a movie I watched, or the story of a friend of mine who went through this – but not me.
It’s Father’s Day weekend. I don’t feel like a dad yet, as I haven’t even changed a diaper, comforted one of them to sleep, fed or bathed them. I haven’t taught them something or disciplined either. Whether I tell people I am the father of triplets or keep it simple and just say twins, it hasn’t all sunk in.
I look at our kids, in their isolettes, and see them starting to open their eyes. They haven’t quite opened enough so I can see anything more than shadows between their eyelids, and I can’t wait to see their eyes and hear their little cries. I am amazed at the fact that Julie and I have brought children into this world. I am saddened by everything they are going through now, but I have hope that everything will make them stronger.
I’m sure this post seems all dreary and depressing, so let me try to turn that around. Right now I feel like a liar, and I’ve made up this whole story. So I have something to prove. I need to prove I am there for my kids and for Julie. I need to love them, support them, guide them and give them whatever they need. I need to prove myself as a father and earn the title of dad. I need to keep the memory of Marissa alive, as I move forward in my life with my new family. I will be inspired by them, and they will help me write the next chapter in this story, and I will know it all to be the truth.