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.
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 1st 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.