Thursday, May 3, 2007

Chapter three, Time in the NICU

After I held David for a few moments, he was wisked off to the Neo-natal Intensive Care Unit. Steve and I had already decided that Steve should go and stay with David during his first hours of life. Steve followed the doctors and staff to the NICU, but quickly returned to me, saying he just couldn't deal with all the cords, exams, and medical staff. We were both completely overwhelmed.

I was transferred to postpartum and once I rested a bit, we headed over to see David. I think I was in a wheelchair, but I can't remember for sure. There he was, this tiny little thing, laying in an isolette. I so badly wanted to dress him up in one of the cute outfits we had bought for him and take him home with me. Why was this happening? What was I supposed to do with this little baby who had so many needs. I felt completely inadequate. Where was the blond haired, blue-eyed boy we had hoped for? The nurse asked if I wanted to hold him, so while she tried to keep the cords from becoming tangled, she gently placed him in my lap. The NICU is an awful place. There are tons of beeps and alarms that go off randomly and nobody even acknowledges them. There are hurting parents and small babies and staff who would rather sit and cross-stitch than hold a little one. At least, that's how I felt about our experience. There was a very sweet nurse on duty the first night who let one of our good friends sneak in and take some photos of David. Those photos we precious to me during our time apart the first few weeks and still capture the intensity of the first hours of David's life.

On the second day of David's life, we looked for neo-natalogist to talk with. We wanted to know if they had any information or answers for us. We literally felt like we were being avoided. Finally, we cornered a doctor and asked him if he could give us an update. He (in a thick accent) told us our son had Cornelia de Lange Syndrome and would be severely retarded. We pressed for more information. I don't remember his exact words, but he gave us the impression that David would be a vegetable and would never walk, talk, see or hear. We went back to my hospital room and sobbed. I remember thinking, both of us can't lose it. One of us has got to pull it together. But at moments like these, you can't pull yourself together, you just have to be in the middle of the muck and mess. I called my sister and asked her to look up the syndrome online and print out any information she could find.

Overall the NICU was a very frustrating experience. We were new parents and felt completely ignored and condescended. I overheard one nurse telling another that David had a heart defect. No one had informed us of this, and I was irrate! We frequently had staff telling us to put David back in his isolette and let him rest. They felt we were overstimulating him by cuddling and talking to him. We didn't know how much time we should be spending at the NICU each day. We wanted to be with David as much as possible but we were exhausted emotionally, plus, I had just given birth. Our friends, Tim and Susie had just had a NICU experience with their son (and Susie is a psychologist) and they gave us some great advice. They recommended holding, touching and talking to David as much as we could to help him bond. They encouraged not to take a backseat to the hospital staff. They reminded us that we were the PARENTS. We stopped being pushed around and came up with a plan. When we got to the NICU in the morning, we told the staff how long we planned on staying and what we intended to do with David (holding, changing, reading and feeding) during that time. We told them we wanted regular updates on any tests that were run and any new medical information that they had in his file.

During this crazy time, there were some real blessings. We had lots of friends and family come to visit David. His isolette was near the front window so we could show him off easily. We decided very early on not to try to hide his hand, but to make a point of showing people, talking about it and touching it. Our church family brought us delicious dinners every night and the highlight of everyday was checking the mail. Some days we would get as many as 20 cards from people who were thinking of us and praying for us. Many people we didn't even know reached out to let us know the cared.

After two weeks (which felt like two years) we were ready to take him home and get on with life, no matter what that might hold for us. They kept putting us off and telling us there was no hurry. They wanted to place a g-tube (for feeding) before he left the hospital and the surgeon wasn't available until the following Tuesday. That was over a week away! I asked for the surgeon's number and called him up myself. He agreed to preform the procedure a couple days later. Three days after that we packed David up in his carseat and ran for the door. I kept thinking they were going to change their minds and want to keep him for a few more days. I felt like I was kidnapping my own child.
Flash forward four years. This is David with the same Curious George. What a delight he is to us!


lindsey said...

that picture is awesome! he looks so much healthier (chubbier?)than i would have expected, considering all the things the doctors were saying and that he was a bit early. i'd love to see a current picture of david with that same curious george to see how he's grown and changed. i'm absolutely enthralled reading your story - wow! did you send any formal complaints to the hospital about your/his treatment so that maybe it could help other families in the future?

michele said...'ve come so far! The picture of George and David is so sweet! I can't believe the doctor told you he would be deaf, blind, never walk, never insensitive he was.

lisa said...

Lindsey, I added a pic of David on hsi fourth birthday with the same Curious George.

Kristen Borland said...

i can't even fathom... don't even know what to say. i'm so proud of both of you for taking it all into your own hands, determining what was best for you and david. i never, never want to have a nicu experience, but if i do, i hope we also have friends like you did who helped guide you through it. how horrible that the staff treated you that way. i remember when zeb was born he had the cord around his neck twice and around his belly, so there was a whole team of respiratory therapist waiting for him to come out. when he did, they worked on him for awhile, not telling me anything. i just kept asking every one and any one if he was okay, and NO ONE would answer me (except my dear husband, but i wanted to hear from a professional)! turns out zeb was fine, but that they just couldn't get him to cry (he didn't cry for 24 hrs). my experience was so trivial compared to yours, but i understand a little bit of that feeling of being purposefully ignored.

i too am impressed with how chubby david looks in the first picture. and he is just so sweet lying there with george. how precious that your friend was able to sneak in and take pictures for you!

chrissie said...

That was such a dark, thick, grief-filled time. Both you and Steve handled yourselves so gracefully during David's first few weeks. Definitely saw the Lord working in amazing ways through the intense pain.

Jeannett Gibson said...

I too was surprised by how chubby he was!

So sad that you felt ignored. It seems like too often the medical profession sees us as patients first and humans second. But, maybe they have to do that to get through their days? Who knows. Certainly doesn't make a stressed, confused, greiving parent feel any better.

lisa said...

maybe i'm being too hard on the nicu staff. we were in crisis and i felt like they were so cold--but they have a job to do and see people on crisis everyday! i kept wishing there was a pamphlet out there that they could give to parents that would explain how to behave if your child was in the nicu. how much visiting time is appropriate--two hours day or 24?? Should you listen to everything the staff says, or assert you rights as a parent? anyone want to write a pamphlet?

Lara said...

Thank you for doing this for us. It must be exhausting every Thursday to re-live all the emotions of this time. Your sacrifice is a huge blessing to us. Love you.

Karen said...

Love the two pictures of David! So encouraging to see. I'm sorry you had such a negative NICU experience. It's a good thing your family and friends were so supportive. We were fortunate to have NICU doctors who were always available to talk to us whenever we needed, and a great social worker who actually had put together a packet to give to new parents. It contained everything from visiting policies to how to apply for Medicaid. Our genetics counsellor gave us information about CdLS and gave us the link to the CdLS Foundation website. Even with the compassion of our NICU staff, what I remember most about Ben's stay was our intense sorrow and grief, because we were also given a very poor prognosis for him.
Thanks for sharing your story.

Brenda williams said...

Thanks for continuing the story. I can relate to some of your perspective on the NICU from when Shannon was there after she was born. It must have been 10 times worse, though, having a baby with an unknown disorder. We were so blessed that Shannon was fine, only a bit preemie.

NNP said...

Parents should ever feel that they are just visitors in the NICU. Your right, you are the PARENTS. My NICU, has a 24 hour open visitation policy, and encourage families to participate with care. Of course, there will always be that one day, when someone is not in the best mood, and forgets that parents are going through a crisis.

David is adorable........

Debbie said...

I'm sorry your NICU experience was awful. Our NICU was the highlight of the 5 month stay on every floor of the hospital except the cancer and cardio wards. PICU was t.h.e worst experience of my life. I will say the bringing her home experience was awful, and we also felt like we were kidnapping her even when we went downstairs for a test without her monitors for the first time ever.

Melody said...

lisa said: "i kept wishing there was a pamphlet out there that they could give to parents that would explain how to behave if your child was in the nicu. how much visiting time is appropriate--two hours day or 24?? Should you listen to everything the staff says, or assert you rights as a parent? anyone want to write a pamphlet?"

It is hard to know when to listen and when not to. They do harm, as well as good.

I have Michael. He was born 10 weeks early. He had an intraventricular brain hemorrhage at just a couple of days old. The results are CP, hydrocephalus, learning delays, and a feeding tube.

While I was in the NICU, there were some really great nurses who helped tremendously...and others who didn't.

One nurse that didn't told me to go home with my other children who knew me and needed me. She told me that Michael didn't know who I was anyway, and they could take care of him while I took care of my others.

Another told me that instead of the cassette tape that I made of me reading stories and singing to Michael, he should be listening to classical music because it stimulates the brain better.

The others' stupid remarks could be blamed on ignorance, but there was one who was malicious. She was a nurse practitioner who was consistently rude. Michael's stay was prolonged because he was too sleepy to drink a bottle. Because every day after his PT and OT sessions he was sooo sleepy, I said no more therapy until after he was able to eat on his own. The therapist was upset, but the nurse practitioner was irate. I remained firm, even as she yelled at me. Another time, Michael had been scheduled for a G-tube (permanent feeding tube) surgery, but for the two days in succession previous to the scheduled surgery, he had drunk all of his formula by mouth. I talked with the doctor and he felt no pressing need to move forward with surgery if Michael was eating by himself, so the surgery was indefinitely post-poned. This nurse walked into me at Michael's crib-side on the morning of the scheduled surgery and said, "Michael was scheduled for g-tube surgery this morning, but YOU cancelled it, so he won't be having it today." and turned around while my jaw was on the floor and stormed out. I was devastated and had to call and talk to the doctor to make sure that he still felt the way he did earlier (which he did), and that I hadn't made a huge mistake (which he said I hadn't).

Doctors, too, can make mistakes. Another time, Michael's shunt wasn't working and the NICU staff didn't discover it. A week or two after he was discharged, I discovered that, going back over the notes and measuring Michael's head daily, Michael's head had "grown" 1 centimeter over a short period of time. I felt his head, paying attention to the suture lines (where the skull bones connect) and found that the soft spot was open wider than it should be, and that a v opening came to about 1 centimeter lower than his hairline. I took him to the emergency room at the children's hospital and the doc there told me that I was just a "NICU mama" and worried over every little thing (said very condescendingly). I insisted on a CT scan, which she wasn't going to order and later came back into the examining room and told me that I could wait if I wanted, but it would be at least 1 hour wait (said rudely and impatiently); I said I'd wait. It turned out that his shunt had malfunctioned and he had to have an emergency surgery first thing the next morning.

For those going through any kind of major medical issues I would say to trust your gut and question everything. Read as much as you can without getting too overwhelmed, realizing that your child will not have all of the symptoms of the illness. Find a trusted doctor, nurse, or nurse practitioner that is on your child's case and talk to them about all of your concerns and the ramifications of the illness. And then trust God and ask Him to help you discern between truth and error and to help you make the necessary decisions regarding your child. And put it in His hands, because the situation is usually too big for just you.

Lisa, thanks for sharing your story and David with us.

Shana said...

That is sad that you had to fight just to get basic information about your son, but you all were so courageous to stand up for yourselves and your baby. He is beautiful in both photos!

MissyMoo84 said...

I am glad you had support from friends and family, and even strangers. It shows how much people come together when it is really needed. Your little family is wonderful.

Jennifer said...

how odd that I found your blog looking for decorating ideas, and as I was looking at your childrens pictures, I saw something familiar in David's face...

I am in nursing school, and we just finished a pediatric rotation at a long term care center, where most of the kids are wards of the state. All of us students fought every week to be assigned to a little 3 yr old boy there with this odd disease we had never heard of..
Tiny 3 yr old Jimmy is the cutest little guy on the floor, with his constant smile and sparkley eyes with their long lashes, and so much energy he has!! Such a happy baby, so sad to see him living under the care of strangers, away from his family. Since then, I have been reading up on Cornelia de Lange, it made me realize how sad it is that the lesser known, less common conditions do not get the research funding and attention that more common ones do. Like everything else, it is all about the money.

God bless your little boy, may he watch over and protect him, and me he continue to bring joy into your life!

Oh, great blog too. Love the jewelry!!


Ben, Jen, Eliana and Bella the dog said...

Lisa, I am so sorry that you had such a negative experience in the NICU. I also had a baby in the NICU- she stayed there 13 days.

I gave birth at Gaston Memorial Hospital in Gastonia, NC. The NICU there was the first to practice "Family Centered Care".

This meant that we all had our own suite. We could stay the night in a bed in my daughter's room. We could order meals, shower, close the door and be alone. They encouraged Kangaroo Care and the staff became family. I am still friends with many of our nurses and we attend the NICU Reunion each summer.

I only wish that you too could have had the same wonderful experience that we did. It is a scary, awful place to be! It's a shame that more hospitals couldn't practice Family Centered Care.

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Angela said...

He looks well-adjusted and very stimulated to me!

I bet through him you've learned and loved like you never knew you could. He has probably been a blessing to you in so many "unseen" ways. He's your refining child. Through him, God is and has been able to refine you in ways that are unimaginable.

Same with me through the fire of my home and me accepting my husband after three children from infidelity. God refined me and showed me how to love in ways I never knew I could, and would have never tried had it not been for the things He used to REFINE me.

He's a blessing that it, of course, took you a while to embrace due to the shock and sadly, some of the world may never embrace.